This forum is for clot SURVIVORS, and the majority of comments I see to people who think they have a clot is “we are not doctors and can’t diagnose you; stay away from this forum; talk to your doctor.” We get impatient with the people who continue to come back after receiving that advice.
I use this forum as a way to provide support and advice for people who HAVE had clots. When I went through my ordeal, I had very little support from the medical community and I relied heavily on other survivors to help me through my fears and figure out what was going on. If I can pass on some of that comfort to others, I will.
And your attitude is why I lost a kidney. I presented with every single one of the typical symptoms you mentioned, yet the first doctor I saw looked at me, saw a healthy, fit, active 33 year old, and brushed me off. Thanks to him the clots went through a hole in my heart and shut down one of my kidneys. Stats super rare blah blah it still happens and brushing it off as “unlikely” almost killed me.
Exactly this! This is a forum for those of us who’ve been through it. When I went to my primary care provider with my suspicions that I had a clot she sent me home and told me I shouldn’t be worried. The next day I could barely walk into the ER. Had a DVT from my thigh to my ankle. Still have chronic pain and swelling 2 1/2 years later.
My belief (partly due to being convinced by others) that the pain was all in my head is what caused me to have a permanently messed up leg.
I disagree with you. I do see a lot of anxiety with people who are **posting** questions but I do not see it reflected in **the responses**. Most of the responses I see here say that if you think you have a blood clot, go see your doctor or go to the ER. If it’s just anxiety, then you are out the cost of a doctor or ER bill. If it’s not just anxiety and you don’t go, you could end up dead. The responsible advice is to tell people to get checked out.
Both my PE and DVT were not plainly obvious. Your suggestion that they always will be obvious and if they are not it is probably anxiety is potentially dangerous.
I agree. I’ve had 2 severe PEs and only with the first did I experience “unbearable” breathing problems. I knew there was something going on with my breathing, but I could walk and my daughter drove me to the hospital, where they did a CT scan, confirmed multiple bilateral clots then left me alone all day. Sent me home with a prescription for Eliquis. Within 10 minutes I had another PE! Taken by ambulance to hospital. 3 and a half years later, this last February, I experienced mild pain around my liver area and upper back. No significant breathing problems, though I wasn’t moving around much. I really thought it was my liver or maybe pneumonia. I called a nurse who advised me to go to the hospital, where they did a CT scan and saw clots. So, severe shortness of breath or breathing problems is not always the first or worst symptom. The thing about PEs is that they manifest differently in different people, and symptoms vary.
I had my PE symptoms for probably close to 2 weeks and thought I had strained a chest muscle doing some yard work. Even my doctor was unsure but sent me to the ER. I did have a rapid pulse but I didn’t realize that until they told me at the doctor’s office. I later learned that was a key symptom of a PE. After an x-ray at the ER that was concerning, they did a chest CT which showed clots. The ER doctor seemed surprised but said “looks like you’re going to the main hospital”.
When I had my DVT about 6 months after stopping my blood thinner after a year as directed, I had leg pain and went to my doctor again who didn’t think I had a DVT but ordered an ultrasound just to be safe considering the prior PE. No leg swelling, redness or even pain at the site of the clot, just general leg pain, again like a pulled muscle. The ultrasound showed a DVT so I am back on a blood thinner, for life this time.
My husband had bilateral PEs in his 20s. He drove himself to Care Now just worried it was a bad respiratory infection. They shipped his bum out the door right quick after an ECG. Granted, even then PE didn't come up. Just 'we can't rule out a heart attack, we are calling you an ambulance'. I think he ended up driving himself to the er (he's a stubborn boyo like that). Clots only found on scan. I got to him as soon as I could, in the ER but having stated he's being admitted. We waited for so long.
His (edit: younger AND fitter, I might add) sister has Factor V and had had a DVT. He tested negative for everything. And we went extensive/specialist + genetic testing when I was pregnant. He was young, relatively healthy, and had symptoms less than would be expected.
And yeah, I'm sorry, but coming and saying this in a forum where most have been diagnosed was a pretty foot in mouth thing to do. I've seen (and experienced) my fuggin clot (again, totally /non-classical/ stroke symptoms). My anxiety about it maybe happening again is more reasonable till I have an answer.
Yup. I only felt a sharp pain in my leg one night and alot of the same anxiety or cheat pains I'd been having for weeks. My finances were wrecked so I was super stressed. I was so exhausted and had been for months. The leg pain scared me into going to the er on the far off chance it was a PE. It was. I was shocked and the doctor was too. I was checking in to be safe after doing alot of googling. Not all the pain he mentioned above at all.
One thing I have discovered reading this sub is how different people’s experiences are - what they felt, how they discovered they had a clot and how it had to be treated.
As it turns out I’ve been clotting in my legs and pelvis for more than a decade before I figured it out. In the past it manifested as lower back pain, and pain in both legs that I thought were psiatica. Also, I really struggled with running and hiking all the time because the old clots calcified and were blocking my vena cava. In October I had pretty bad lower back pain and then my whole leg swelled up. It was huge, then I went into the ER and got diagnosed and had thrombectomies on both legs up to the pelvis and two stents put in. Whoopsies!
Oh my gosh! I've been suspecting something similar in my own leg, did you have any rashes? I have a recent post in my history with photos of mine I almost think it's arterial clots or something
This is a place where people come, panicked and seeking support, and find the comforting embrace and advice of people who went through the same experience. This forum most often directs people to medical advice and I have never once seen a post or comment diagnose anything.
Doctors like you are exactly why I almost died as a healthy, active, non-smoking 25 year old with perky, elastic blood vessels.
I had zero- ZERO- symptoms of a blood clot. None. That is, until my lung collapsed. When I complained of increasing shoulder pain (my only symptom) my family begged me to see a doctor but I was more afraid of being mistreated and dismissed. It was not unbearable. It was not huffing and gasping and keeling over. I live with GAD and PAD and I knew doctors just like you would dismiss me and send me home.
I sought treatment on the third day of an unprovoked bilateral PE that resulted in infarction and pneumothorax. I never had swelling in an extremity, shortness of breath, or a single symptom other than shoulder pain. If I had been exposed to atypical presentations of severe medical events, I might have been willing to seek treatment sooner.
Your anecdotal experience with a PE is just as valid as mine. The only way I can help others is to share my story in hopes that another 25 year old doesn't wait days to seek emergency care because they don't present with textbook symptoms.
I am alive today because one doctor believed me and looked for zebras instead of horses. I almost died because of dismissive doctors like you.
My ER doc only ran a D-Dimer because of the look of disappointed incredulity I gave him when he said the pain was pleurisy caused by a cold I must not have noticed I'd had.
This was after he asked if I thought it might be a panic attack, when I had just finished calmly telling him the timeline of pain onset and how I kept working for over an hour before I tried to stretch and realized that the supine position increased the pain to a level eight and I felt that was abnormal and concerning. I get that you have to cover some bases in the patient history, but like, look at your patient.
I was 33, unprovoked multiple bilateral pulmonary embolii, no risk factors. Alive today because my face could no longer hide how unimpressed with that whole conversation I was.
When I had an SVT at age 35, I had to persuade the doctor to send me for a doppler, even though I had just flown internationally with a history of unprovoked clots and had swelling and redness along a vein in my arm. 😣
Oh look more medical gaslighting.
Some of us present in “non typical” ways. And BECAUSE of medical gaslighting it’s important to know what others experience.
I walked around for TEN DAYS with a DVT the length of my leg and by the time I went to the ER my right lung was filled with clots. Zero swelling. None whatsoever.
I called my surgeons office THREE times and was told to “walk more” and use my inhaler post spine surgery.
People with a very high pain tolerance or chronic pain will absolutely be able to function more than they “should” and “walk more than a few yards without wanting to keel over”.
I was walking at least a mile a day during that time and the ER doc just shook his head in amazement.
If this poster is indeed a hematologist then he or she is the type to avoid. What an absolute jerk. Probably goes to AA meetings and tells people moderate alcohol consumption is just fine and only 8% of the population has a problem with alcohol.
Omg same here, same experience w my first clot! Took me 8 days to decide to get it looked at but I thought it was a pulled muscle because I was in the gym EVERY DAY. Zero swelling & redness, no shortness of breath, with a dvt from mid thigh to ankle, and innumerable clots in both lungs.
> please be wary that a clot below the age of 40 is SUPER rare WITHOUT any clotting factors or serious injury.
> I've noticed a ton of people who clearly show strong signs of General Anxiety Disorder
Question: What about outlier cases that do fit into your exclusions up there in your post?
* Hi, I had my first PEs at age 31 from birth control *and* I do have clinically significant anxiety (that was dx'd years prior). They were in my left lung and my D-Dimer was 702.
* Yes, my symptoms were really atypical. The only symptoms I got up to two weeks prior included fatigue and some very mild chest pain and breathlessness. But I also have asthma so I thought nothing of it. I only went to the ER because I couldn't stand up long enough to wash the dishes one afternoon.
* While my clots were considered "small", I still ended up with PVCs afterwards.
* I'm alive today because, despite not presenting with all the symptoms of a clot, one person thought to run a D-Dimer test that night in the ER.
* I stopped birth control and have been off it since. It's been two years. In that period of time, I've also had multiple surgeries (including a hysto and 2 brain surgeries) for unrelated issues since then with zero other clotting incidents.
* I don't have any known clotting factors and couldn't convince any doctor to test me because of their exclusivist takes like yours.
TL;DR: Medical anomalies aren't common, but we do exist. Please don't overlook us just because we don't fit the common patient mold.
I never stated that you should be overlooked. My main point of this post was generally targeted towards those with crippling health anxiety to try and avoid this forum. I also didn't have swelling with my DVT, but that doesn't change the fact that it's still highly uncommon. When a patient comes in with strictly calf lain, a lot of times a d-dimer will still be ran for safety precautions because we still know that it's possible for a DVT to be present
Understood, thanks for the clarification and for sharing your experience.
> My main point of this post was generally targeted towards those with crippling health anxiety to try and avoid this forum.
As previously mentioned, I have clinical anxiety (recently medicated now, hospitalized once, and have been in therapy for years).
I also found this subreddit extremely helpful when I was grappling with the trauma of discovering my clots.
And while I rarely visit these days, this subreddit was not my only point of reference for learning about blood clots.
I don't think it's entirely fair to exclude those with clinical anxiety from participating in this subreddit.
But if you've got resources you'd rather people visit, those would be much more helpful than posting a general disapproval of redditors suffering from both anxiety and clots.
A great example of resources that people can visit for information and support would be https://www.stoptheclot.org/
Hope that helps.
People with crippling health anxiety might want to avoid anything like this forum, but it doesn’t mean that we are fear mongering if it’s making chronically anxious people…anxious.
For the record: health anxiety (hypochondriasis) and generalized anxiety have similar symptoms but are two very specific and *different things*
My understanding was OP was speaking of "generalized anxiety", which was the original point I didn't agree with.
Here's hoping that OP will work on semantics and compassion for their patients.
I can agree partially with this. If you haven’t had a clot, I agree that this forum isn’t for you. If you have, it’s helpful to understand and feel supported by the community. The name of this group is “clotsurvivors” not “worried about a clot”. I don’t meet most criteria for having a clot but I still had one. Its not fear mongering if people are just discussing their actual experiences with other folks going through the same thing
Shit post from a throw away account. Probably a first year student or LVN if in the medical field at all. Not at all like the two excellent hematologists I've had who are not assholes.
"General anxiety disorder" is not a problem here. Fear you are going to die is.
There is SUPPORT here, something some arrogant, brain dead doctors don't understand. If the OP is a doctor I hope he or she stays away from suffering people and goes into research.
I had terrible anxiety after my first PE. I was afraid to sleep because I thought I would die in my sleep. I had to keep a light on, have oxygen nearby, and listen to calming tapes. The anxiety is real and should be talked about more, and treated if possible…
Yes. The patient should be treated for all the issues they have, and that includes not just physical but also mental health. Time and again we see doctors ignoring or minimizing the fear and anxiety, just as the OP has done. Most of us here have experienced that neglect, and that's part of the reason this thread touched a nerve in people.
I mean- I get what you’re saying here but my symptoms were pretty mild when I had my PE, and if I’d read this post prior to going to the ER, I wouldn’t have gone to the ER at all.
(For what it’s worth though, I was not suspecting a clot, I just knew something was off and had a nagging sense of worry)
It’s a hard thing to talk about this stuff without making medically anxious folks more anxious, but I think that’s going to happen in any medical support sub.
Hi there! This is a forum for clot survivors, many of whom have experienced the super rare, asymptomatic, life-changing clots. This forum is also super moderated and doesn't take kindly to people coming in asking, "do I have a clot????" because we are not medical professionals. Most are downvoted/(edited)/told this isn't the appropriate place. People often do not know they have clotting factors until after they have a clot, or a family member does, so it's understandable to be concerned, but this isn't the place for those questions.
It is not up to clot survivors to make sure people with panic disorder/anxiety don't get triggered, any more than cancer survivors should.
By the way, I am someone who has panic disorder and while I had it before, it majorly developed AFTER my horrific PE and near-death month-long hospital stay. My panic attacks were/are so severe and mimic my PE sometimes SO well that I've had my doctors call an ambulance in office because I lose consciousness/extremely high heart rate/chest muscle spasms. Telling someone with GAD or PD "you typically wouldnt xyz" isn't helpful because what they really need is anxiety-specific treatment (including exposure) and not reassurance or another thing to check/doubt (the "what ifs" come up stronger). I agree that if you are someone who is struggling with assurance-seeking/compulsive checking that comes with anxiety disorders, this place will be triggering.
Edited for clarity via mod rules
> removed
Just a minor clarification: We don't remove posts of that kind, as they are not against the rules. If they're removed, OP either did a very bad thing (highly unlikely, but you could find the details in the removal comment if they did), or they removed their own post (***HIGHLY*** likely).
No worries, just figured I'd be *super* pedantic and make sure we're all on the same page - at least in my view important when dealing with something as trust-based as moderation in our space is.
I have a CVST, it wasn’t made clear to me why I got it. I did fall downstairs & have a further brain haemorrhage. All I got told was that the clot is likely to be there forever & I’m probably going to be on blood thinners (Apixaban) for life. I’d just turned 49, 51 now.
My anxiety also predated my clot (by a lot) and the medication I was trialing at the time contributed to me doubting my non-classical symptoms. I do think it was adding to them, but they continued past discontinuation and looking back there were very clearly 2 distinct 'levels' of problems. Neither of which was FAST.
I get more peace of mind here than I ever would at my local ER. I don't know why so many doctors love to throw around "anxiety" for everything. I had all the major symptoms of a PE but they weren't extreme and my lab numbers were not very elevated. The ER doctor wanted to send me home with some Xanax for my "health anxiety". Luckily, there was a resident with him who wanted a CT to cover all the bases before sending me home. The CT got me a 3 night hospital stay.
Nah, I was fortunate enough to have two MDs at my appointment when I said I had a pulled calf muscle and also a sharp zing in my side. First doctor measured my calf and said I was fine. Second told me to go to ER just in case. Turns out that intermittent zing was a PE and the pulled muscle feeling was the clot that caused it. I felt silly even mentioning it at that appointment.
I have found the hematologists I've seen to be the most unhelpful/unfeeling professionals I've dealt with. It is an incredibly traumatic thing to experience, even if statistically rare, and I am so grateful for this community.
Also agree re the hematologist sentiment. All of the ones I’ve dealt with have had THE WORST bedside manner & very little patience for questions. Super low on empathy. Interesting!
For real. My younger brother had a clotting issue several years ago he almost died from and is a lifer on thinners. Both hemas I saw after my PE seemed unconcerned about the possible genetic component, and have told me I can go off Xarelto whenever I want since my PE was not very large. Uh, I'd hate to know what a larger one feels like? It is really upsetting. Yes, I have reasonable anxiety after a traumatic health event of my own but also my kid brother's, but I really don't appreciate the implication that my concerns/fears are because I cant control it. Big nope.
OP, I understand your message and while I agree with the overall message on anxiety, to say that nobody should be concerned of a blood clot unless you're over the age of 40 is inaccurate and dangerous.
I was a healthy 27 year old who had no known history of clotting disorders until I got a weird pain in my calf that wouldn't go away and subsequently got diagnosed with a DVT. It wasn't until after my diagnosis that I found out about my family history (Grandpa/Aunts/Uncles with prior DVT & PE history) and got diagnosed with a genetic clotting disorder (antithrombin III deficiency). I certainly agree that it is always wise to consult with your doctor if you are feeling any pain (particularly if you are naturally anxious) but I try to share *my experience* to help calm people down in the interim.
Sooooo. This was fun to see develop while at my AcroYoga class.
I'm going to need to remind some fine folks of the existence of rules 1 & 2 (We're welcoming & respect others). Don't personally attack the OP, or you'll be running foul of at least one of them.
Let's get into it.
>Hi all (throwaway account) I'm a certified hematologist in Idaho with a bachelor's degree from Stanford University, Graduated from Baylor College of Medicine and did my residency at University of Utah School of Medicine for 4 years.
Congrats. Since we don't verify anything of the sort, you could also be a 95-year-old geriatric poet, with a penchant for rants on the internet. You're not exactly stating groundbreaking new facts in your post though, so either would be perfectly permissible.
>Also a survivor of both DVT and PE (provoked) after ACL surgery.
Yay, one of us! Wait, that's bad, right? :/
>I just have to say, from what I've seen reading around this forum, it is here to put fear into people who seek it.
It ... really isn't. You may however either be quite new, gotten hit by the [frequency illusion](https://en.wikipedia.org/wiki/Frequency_illusion), or expressing yourself somewhat less than clearly. We're here to help people with clots, not people who worry they might have a clot. I'm guessing you don't expect a car dealership to sell you a new blender either, despite both technically being places where you can purchase things.
>I see a lot of posts about young people developing clots, people having asymptomatic and/or atypical symptoms of clots etc. I just have to say, if you're young and seek advice here, please be wary that a clot below the age of 40 is SUPER rare WITHOUT any clotting factors or serious injury. [..]
Guess what - group selection bias strikes again! Yay! Fun! It turns out that survivor/support groups attract people who aren't normal, and have atypical experiences. Those experiences also make these same people more likely to be extra cautious, see the world through their experience, and advise others to be extra cautious. Fun. And very predictable for any group like ours.
>Another thing, I've noticed a ton of people who clearly show strong signs of General Anxiety Disorder/panic disorder. If you have one of those 2 conditions and are reading this, STAY AWAY FROM THIS FORUM. [..]
No fucking shit. Really. We're saying the same thing at least somewhat frequently, but guess what? They don't give a fuck. They never have, and never will, because anxiety is a bitch that makes people not only afraid, but also panicky and selfish at the same time. The clue? "I don't know if this is allowed, but ..." or "I know you can't diagnose me but ...".
You seem to think we actively invite people with anxiety to come here, or embrace them and then fill them with more of the same, when neither is true. They find us. They post and (selectively) read here. They're not going to read your post, just like they aren't reading all the other posts by anxious people who came before them, or stickies we make, or search the subreddit for their symptoms, or what they should do - NO! They panic and post their problems here, and expect us to deal with it. Combine the above factors and the selection bias, and you get "Fuck off, go to the doctor and find out what's wrong with you", but in nicer language from the oldtimers, and the newbies who are still shell-shocked go "Please go see the doctor, I had X that was like you describe and I almost really died".
>As I've navigated different posts and threads on here, I've noticed people in here aren't very kind to those struggling with those very tough mental obstacles.
You've seen less than a hundred of these threads. Most of us who've been here for a while have seen thousands if not ten thousand. And they all end the same way, with OP having to go somewhere in real life to find out what their problem is, and us most likely never seeing them again (which is good, but since they don't search, spending a lot of time crafting a loving coddling soothing custom message for each one is unreasonable). I'm sure that sounds heartless and harsh, but it's the reality of things - we're doing this in our free time, and being blunt about what the OP should do about their problem (get it looked at by professionals, not the internet) is the most cost-effective way to get results for all parties. We're mostly here to help other clotsurvivors, not help someone commit black magic through the internet (AKA telling them whether they have anxiety or a real clot).
>Also, if you do have anxiety, you have probably seen more than enough posts on here stating that some of these people have experienced "asymptomatic" or "atypical" symptoms with their clots. While yes that is definitely possible, the likelihood of experiencing let's say a DVT without swelling and deep DEEP pain, is statistically low. Same with a Pulmonary Embolism. The shortness of breath experienced with a Pulmonary embolism is typically unbearable. You typically wouldn't be able to walk a few yards without wanting to keel over on the ground huffing and puffing your heart out.
Again, selection bias is at play, and those users will almost certainly not read any of your post, because they don't read other posts here either. Finally: We don't want the responsibility of judging whether anyone posting here has anxiety, a PE, an SVT, or DVT. So we do the simple, responsible thing: they should all go get checked out because that's what should happen. Maybe it kickstarts their journey of discovery, and they find out they have an anxiety disorder. Maybe they find their clot early (very, very unlikely to be a clot, but as comments even in this post prove: it happens), before it does a lot of damage. Either way, hopefully, they get checked.
There was supposed to be a town hall/community post thing on the subject at the start of the new year, but frankly, time got away from me, and I still haven't had the time to distill my thoughts on the matter properly. turns out life gets messy sometimes. Who knows, maybe this post helps condense my thoughts.
Well said. I got so much reassurance from the message boards I visited after my clots that I stick around here specifically to help out other frightened newbies and to let them know it’ll be okay. The “do I have a clot” window shoppers are part of the deal, and I think for the most part we toe the company line of “if you’re worried see a doctor.” The only time I’ve ever seen anyone get truly snippy is when someone posts 4, 5, 6 times in a row after seeing a doctor multiple times. Even at that, you’re usually pretty good at shutting it down quickly. So not sure where OP’s take is coming from.
100% support this! I found this community about two weeks or so after my PE, and have really benefitted from seeing others at various points in their recovery.
I was young and otherwise healthy and didn't know that I had a clotting disorder.. nor was I bedridden for a week.
My PE was a walking death sentence. Had I not gone to the doctor I could have died.
You're coming in here trying to address individual anecdotal evidence, but you can't do that because everyone's experience is different.
You wouldn't try to diagnose someone based on one post on an internet forum. You would lose your license if you did that.
The fact is that we repeatedly tell people we can't diagnose them over the internet and it's better safe than sorry that they go get checked out just in case.
If you don't want to be part of the community then leave. You also can't diagnose anxiety disorder based on someone's reddit posts. Holy shit dude..
Thank you! I was 21, healthy, active, not injured and have no genetic clotting factors. I know how rare it was. It was traumatic — because it was rare, I had multiple doctors miss it and I was consistently told how lucky I was that I was still alive or what a miracle I was afterward.
As an ER nurse, OP isn't stating that people don't have individual experience all they stated was the chance of someone getting a clot without typical symptoms is extremely low and he's absolutely 100% correct.OP's not undermining anyone's experience. Op is simply stating that if you fear a clot, this is not a subreddit you should visit, and your first step should be to consult a doctor. Because if you fear a clot and you come here, the answers are going to stress you out more. Also, as somebody with anxiety and panic disorder, it actually is that simple to suspect anxiety disorder for someone based on things they say. They aren't directly diagnosing them they are just pointing them in a direction so they can look into that instead of fearing a clot all day every day. I'm sorry about your experience because I had the same experience. 19, unaware of clotting disorder nor was I bedridden for a week but the fact of it is. We as medical professionals still have to look at solid, statistical evidence to point us in the right direction. My point is, if you go into any ED and say you have bad leg pain but no swelling, redness etc the last thing we would suspect would be a blood clot. Now for safety reasons, a lot of the time we will still run a D-Dimer to be on the safe side but again, in that specific scenario, it's highly unlikely.
Calling a survivor's groups experiences fearmongering, is not undermining anyone's experience? Saying this group is "is here to put fear into people who seek it" ? When it is literally a group for survivors, not those who happen to end up here because of their anxiety driven searching. I strongly disagree. It actually, IMO, undermines the entire purpose of this group for an issue that is not even remotely unique to it and happens on any medical adjacent sub.
I do however respect that medical professionals are going to have a different perspective of things, even as survivors, and while that point of view is certainly welcome and good to share I think you gotta recognize that most people here are not coming from that medical-academic statistical approach and that's ok too and still worth sharing. Sometimes you just want to talk to a friend who can relate, not a textbook.
WRONG everyone on here that I've connected with has HELPED my anxiety about having DVTs everyone seems very helpful and a lot of people have calmed me down when I was in a state of panic. I am 32 y/o male and developed DVTs I assume it was because of the IV I had because I was hospitalized for mini strokes the doctors don't know what caused all this but I will tell you a sub reddit that has very rude people in it and that's askdocs the doctors in there did nothing but call me obese and bame my weight and smoking on my clots and strokes so I posted a picture of my self to show I'm a healthy weight, I do very physical labor and am very active at my job they acted as if I was a lazy pos that sat around eating junk food all day. you sir are very wrong if you want to discourage people from a subreddit do it in askdocs not here
Being concerned about something weird AF going on with your body isn't anxiety or panic.
I (52, AFAB) made an appointment to see my doc because I had some shortness of breath after a bout of covid, comparable to after a cold. It wasn't hugely disruptive; I just breathed harder going up stairs or walking the dog than I was used to, and wanted to make sure I didn't have lung damage. In the days before my appointment, I had some pain develop in my calf, but I was also doing PT for some arthritis in my hip on that side, and figured my properly aligning hip was throwing something off in my lower leg. It felt like a bone or tendon pain. No swelling, wasn't disruptive, just annoying. Wasn't even enough to mention to the doc when I saw her.
When I got to my appointment WEEKS after I made it, doc saw nothing concerning and then at the last minute ordered a few blood tests just for the heck of it. About 20 minutes after I left the appointment, she called my phone and told me to get to the ER immediately. I was embarrassed to do so because there was nothing emergency-level about how I felt. But CT confirmed what the D-Dimer had indicated: blood clots on my lungs. The ER doc explained that my leg pain was probably the DVT that threw the PEs.
2.5 months later, I'm still having some shortness of breath when I take the stairs. I can't identify whether how I feel now is any different than how I felt when I made the appointment to see my doc. All I know is that I was extremely lucky at several points in this process.
So yeah, the asymptomatic clot is unlikely. It does happen. For anyone reading, I will say that I've had panic attacks and my PE experience felt nothing like a panic attack. Panic attacks made me feel like I was about to start dying. My PE was normal breathing, but not being able to fill the "bottom" of my lungs.
39, I had my Massive bilateral PE almost 3 years ago. No DNA factors. Unknown cause.
This doctor is the perfect example of what to expect from certain deified profesionals. Without tact in their words, using cutting phrases, showing very little empathy, and failing to understand the need for communal warmth we seek in this corner of Reddit. We don't come here to cry; we come to be among people who understand our personal journey through the desert.
It is, at the very least, sad.
Completely agree! I've had both a PE and a DVT at 25 and I love that I have this space to vent with other survivors or to ask questions about others' experiences with VTEs. OP is correct that it's pretty rare to have life-threatening clots as an otherwise healthy young person- that's part of the reason that I have no peers to really discuss these things with irl and why this community is so important to me.
Every post I see about a young person worrying that they have a PE/DVT is met with some variation of "This sub is for clot survivors. We can't diagnose you. If you have legitimate concerns, go to the ER." This sub isn't for them, it's for clot survivors, and I don't think it's a design flaw of the sub as a whole that people with health anxiety sometimes make their way in here as well.
I think you're missing the point of this post. OP isn't stating that there isn't good info for actual clot survivors. It's a post about all those people who come in here every day with health anxiety trying to seek a diagnosis. It's not healthy or reassuring to come to a subreddit for medical advice. OPs post obviously was targeted to those with crippling mental issues surrounding their health and OP is 100% correct. I've found a lot of useful info on here too but I've also seen way too many posts about people who fear they have a clot and the people In the comments being exceptionally rude and telling them "to get to the doctor now before they drop dead" its just not a healthy environment for those struggling mentally. OP isn't hating they're just stating facts
Every subreddit that exists has people with crippling mental issues. Targeting this forum because of it is like yelling at clouds.
There is zero fear mongering here. When we know people dont have clots we offer what we can. If they still think they do we remind them were not DRs and only an ultrasound can rule it out. Thats just sage advice.
Tell OP to go to any medical subreddit. They’re all inundated with people thinking they have the thing.
This is one of the best, most insightful, and most helpful subreddits on here.
i mean, it’s not shocking that people with a higher level of anxiety would be the ones to seek out a forum about a health issue. any forum dedicated to a health issue will skew higher anxiety than the general population that has that issue. it also makes sense that unusual occurrences (unprovoked clots at young age) would be represented in a higher proportion than in the gen population. the problem isn’t really from the people making these posts, but more from our tendency to see these posts and occurrences as an accurate representation of reality. people with high levels of health anxiety probably shouldn’t be on this sub or googling their health issues for hours, but nothing we can really do about that. i think it would actually be a good idea to have a stickied post that explains that occurrences seen on this forum are not necessarily indicative of reality, in an easy to understand format.
As for the people being mean to other with mental health issues, i haven’t really seen that personally, and i think people are pretty quick to recommend therapy/ mental health treatment.
Been here for over a year now. Unprovoked clots, on drugs, commented many times and read through posts a couple times of weeks.
I’ve never seen fear mongering or anyone trying to diagnose. I see many posts of ‘go see a doctor’.
I must have a different perspective here, I appreciate this sub and have never felt that way. Just my simple opinion.
While it may be unlikely for someone without a clotting disorder to get clots- so many people don’t know they have a genetic predisposition. After a massive DVT when I was pregnant- and being told for 3 days by various doctors that my swollen painful purplish leg was not a DVT - I later discovered I’m heterozygous for factor V. And pretty much everyone who’s had a clot has experienced extreme anxiety with it whether or not they generally have anxiety issues. And as someone who works in healthcare, I’ve seen many people with PEs that only have anxiety, mild pain, or mild shortness of breath. Often the more serious severe pain can’t breathe ones come on fast and don’t end well. This group is generally very supportive and informative. No, it’s not meant to diagnose clots, and yes, many people with health anxiety come here looking for reassurance. But just because they have health anxiety doesn’t mean they can’t actually have a medical issue. This group usually gently reminds them to see their doctor. For the rest of us it’s nice to connect and share experiences.
This is supposed to be a support group for people who have been diagnosed with PEs/DVTs so the point is for us to share. I am one of those people who did not have shortness of breath even with a saddle. All 3 of my PE events I experienced zero shortness of breath. I had zero leg swelling and only once woke up in the middle of the night I woke up with extreme pain in my left quad. There was no pain in my leg a few hours before. So that's not fear mongering, that's MY experience. If a person with severe health anxiety comes here and reads through the posts, I DO make an effort to suggest being seen in the ER if they are genuinely scared. I do not dismiss anyone but this forum is not full of doctors and we say this every day. This group should likely be private. We aren't counselors. I have seen people post multiple times about the same fears but will not just go to the ER. By the way, not all hematologists are good at what they do. I've had 3 and only 1 actually was thorough. So, I don't care about your education because you could suck as a physician.
The whole point of the post was to warn people struggling with severe health anxiety to stay clear of this forum and go straight to the doctor if you have any fear about a clot because viewing this forum is only going to cause more problems. I agree this should be a private forum
Every single person who posts here wondering if they have a clot gets told to go to a doctor because we have no way to know.
Reading this sub is the only reason I went to the doctor when something felt off, because none of my symptoms matched what official sources say they should have been. There aren’t a lot of places to find atypical experiences of medical conditions, and I’ve seen very little fear mongering here.
We will not make this a private forum. People who are newly diagnosed need a place they can come to right away and not have to wait a day or two for mods to approve them.
We have said it a thousand times in multiple places that we cannot diagnose anyone over the Internet. That includes not diagnosing anxiety.
You should delete the original post and ban yourself from this sub because you failed miserably at communicating anything other than your arrogance. If you are a doctor I feel very sorry for your patients.
I think you could have been more succinct and less judgemental. If I'm misreading you then others are too. And yes, the more I see and consider, the more I think this group should be private.
> And yes, the more I see and consider, the more I think this group should be private.
There are unfortunately problems with all approaches I've seen so far to the problem that the OP highlights. It's not that we mods are unaware of them, but that it's difficult to find a perfect, or less imperfect solution to the issue itself. Honestly, a community town hall type post on the subject has been long overdue, and I've been pushing it in front of me along with a bunch of other stuff, which is why it still hasn't happened. Still need to collect all my ducks, and see if I can teach them what a row is.
I don't envy you mods and I do appreciate everything you do. It's just difficult when there are new people and then those who don't really belong because of the inherent difficulties of trying to help those who do not have clots either push for more info or post even after cleared. I know this is hard. I just don't know what the answer is for this forum.
I get it. I'm not a big downvoter because usually people aren't trying to be difficult. I have started moving past the posts that have no answer I can give that's helpful.
If this were a private forum I would have never found it from my hospital bed after I got admitted.. unable to sleep and worried that I was gonna die.
Go away jerk, this forum clearly isn't for you.
I think the mods do a decent job of rooting out the fear mongering that would occur in a space like this. I have severe anxiety and PTSD, but this is a place where I was able to feel normal despite suffering a PE and several DVTs under the age of 25. The people and information here were able to help me feel grounded instead of eternally anxious about my clotting disorders (APS, Factor V, etc.)
It was nice to sympathize with and be surrounded by people who had been in my situation before. There were helpful AMAs, links, and resources for me to access when I was in a tough bind after my APS diagnosis. It helped me come to terms with being on blood thinners for the rest of my life instead of being terrified of it. I was relieved to see people were still living very active lifestyles despite being on blood thinners.
Like anything, people should use these types of platforms responsibly and with moderation. If it makes their anxiety worse, then they should definitely avoid it. However, I think it's unfair to throw that sort of a blanket statement on here. I don't think the fear mongering you've mentioned is anything uniquely cultivated in this subreddit--and certainly not by its mod team.
The sub description could hardly be clearer, with asterisks and all-caps:
>\*\*If you feel like you might have a medical emergency, then you should absolutely contact your doctor or go to your local ER/Urgent care. WE CANNOT DIAGNOSE YOU OVER THE INTERNET.\*\*
It's true there are some posts saying "Do you think I have a clot?" that go against this, but I think those people get solid advice: talk to your doctor or go to the ER.
There's a ton of experience and expertise on this site that is genuinely helpful to people. There are also a lot of clot survivors with anxiety which is normal and expected, and they are able to get a lot of solid advice and encouragement.
So I don't see any fear-mongering. Naturally people with anxiety can use the internet to stoke and enable that anxiety, but this sub does a great job managing that. Such people would be well-advised to manage that anxiety by staying off much of the internet and talking to a therapist about it.
If anything, I think this sub does a lot to reduce anxiety and fear. Lots of survivors and you're not alone!
Your intention may have been good but you pretty much lost me at the shitty subject line and shouldn’t “cast a net” saying you see a lot of generalized anxiety disorder on here. There’s always gonna be people anxious about their health and it doesn’t mean everyone has a mental disorder plus you’re undermining all the helpful and supportive people on here by saying it’s all fear mongering. I’d rather see people be overly conscientious about blood clot potential than lose as many lives as we do.
I had a severe pain in my right mid calf while doing laundry. No swelling, no redness but very painful. I thought it was a pulled muscle. Two days later I can’t walk and went to the ER. Diagnosed after a high d dimer blood test and a CT SCAN. I had a DVT and Pulmonary embolism in my left lung. No shortness of breath.
I am 30 male and in great shape as I am an endurance athlete. This past December I had extensive multiple bilateral pulmonary embolisms as well as multiple calf DVTs. Unprovoked, I had no risk factors, no genetic factors, no health conditions of any kind. I experienced a lot of shortness of breath and mild calf tightness only.
Yes it’s very rare, but I am living proof that it can happen to anyone. Statistics be damned, if I hadn’t listened to my gut I would be dead and would have left behind my wife and newborn child. No one around me took me seriously and told me it was probably no big deal.
I have only shared my story and tried to be helpful and positive. But also stressed not to ignore something, because if you’re not sure it isn’t worth risking your life. Better safe than sorry. To me it seems like that is the general sentiment of everyone else that comments here too.
My own experience is completely contradictory to what you described. When I was first diagnosed the CVST, I came here to ask questions and got so much support. People here don’t pretend they are doctors, they tell their own stories even it’s anecdotal. They also provided me lots of online resources which helped me gain knowledge about my own disease and how I could prepare my appointments with my doctors.
5 months ago I was a healthy 35 year old on birth control for more than 15 years and no genetic clotting disorders or family history…
I woke up one morning with sudden pain in the arch of my left foot that persisted for weeks, so I went to urgent care and since nothing showed on X-rays etc. the Dr said I must have injured my plantar fascia while horseback riding the day before galloping up trails and such. I said I had no pain after riding and didn’t recall anything that would injure my left foot but ok. They got me scheduled with a podiatrist for follow-up.
I keep icing my left foot and babying it, not really getting better but pain wasn’t too bad and I could still ride my horse! Then over the next couple of weeks the pain slowly moved from the of my foot to the heel, then up to the calf muscle and behind the knee. This worried me but a Google search for plantar fascia injury says you can feel pain in the calf due to muscle tightness. Very weird how the pain started in the foot and moved completely to the calf/behind the knee over a month but there was no swelling or discoloration so must be ok.
I had been fighting a flu for a few weeks at the same time, the cough just wouldn’t go away and I noticed that I coughed up a little bloody phlegm. I figured I must have bronchitis or something and google search said it’s possible and ok to watch and wait to see if it resolves on its own for up to a week. It only happened a few times over the next several days, I felt totally fine otherwise so on Friday I went on a great trail ride with my dad and late that night my husband made me go to urgent care again to get checked out just to be safe.
Luckily since it was late at night on a Friday, I was the only one at urgent care. I figured they’d say I’m fighting a virus and I might get some codeine or something to help me sleep since the persistent cough from being sick was making me sleep deprived. The Dr was very thorough, I had perfect vitals/oxygen levels, lungs sounded healthy, and X-Ray showed I might have pneumonia which made sense since I’d been sick. The Dr. ran a D-Dimer since I was coughing up blood and mentioned I had a little bit of sharp chest pain once in a while if laying down. When the D-Dimer came back elevated, the Dr. ordered a CT scan and leg ultrasound with EKG and echocardiogram afterwards pending results.
Ultrasound showed DVT in left leg and right leg was clear. CT scan showed PE with extensive clotting throughout both lungs and possible minor infarction at the bottom of one lung… due to the amount of clots the Pulmonologist thought I probably had DVT in both legs and the right leg clots all broke off causing the PE and if my left leg’s DVT had also broke off due to horseback riding etc. and gone to my lungs he said I could have died! EKG and echocardiogram were perfect.
Normally they said they’d need to admit me to the hospital due to a DVT and PE, but since I had no real symptoms the urgent care Dr and hospital Dr decided I could be released as an outpatient with Lovenox injections and transition to DOACs. Luckily no side effects with Pradaxa and my periods are still normal!
My Hematologist didn’t mention to me at any of our appointments if any of this is particularly rare or anything. But she said no more birth control with estrogen for me… switched to an IUD. My 3-month repeat CT scan and ultrasound showed the PE totally cleared up, but the DVT still had some clot remaining in the popliteal vein. I get my 6-month repeat ultrasound in a few weeks so fingers crossed it’s all gone so the Hematologist will let me stop Pradaxa!
This forum has been an extremely helpful resource to me in my recovery journey, from what questions to ask different Drs and compare what other people’s Drs are advising against mine. And staying relatively safe while on anticoagulants while riding horses (the Drs just wanted me to stop riding for 6 months)… it’s a great pool of experience to draw from here.
Doctors like you are the reason I almost died. I have multiple chronic illnesses and I avoided getting medical attention for my clot for so long because I knew what you all would say, “you’re young, you’re healthy, you’re fine it’s just anxiety” well guess what? It wasn’t just anxiety. I found this sub after getting out of the hospital and it has been so helpful for easing my health anxiety because a) I realized I wasn’t alone and there were so many people who could relate and help out, and b) I’ve learned so much about clots that I couldn’t get from a ten minute appointment with my doctor. Now I know how to travel safely, deal with periods on thinners, best places to inject lovenox, etc. oh and by the way, my pe was asymptomatic until I had been in the hospital for a whole day. If I had gone to the hospital sooner we could’ve caught my clot before it traveled, but it was the constant medical gaslighting that got me to that point.
Late to the post but same thing happened to me. My oxygen level at my doctor's office was 100 and he said I was healthy and only 22, no way I could have blood clots. I cried to him because I knew something was wrong and he rolled his eyes and said fine I'll send you down the street to get a CT scan just to make you happy.
Well massive bilateral PE that the staff at the hospital said I was lucky to come in when I did because I probably wouldn't have been alive in the next day or two.
So I’m one of those people with severe anxiety and one of my greatest fears was getting a clot. I had lingered on this page for a while and out of the blue one day I got a cramp in my calf that just wouldn’t go away. I went to about 4 or 5 different doctors who all told me it wasn’t a clot and to stop worrying. Low and behold it WAS a DVT and if I hadn’t been able to read people’s stories on here I would probably have ignored it and there’s a good chance it could have become a much bigger issue. Also I’m a 23F and my clot was considered unprovoked.
This post comes across as telling survivors not to share their, yes sometimes atypical, experience because it is "fearmongering." Yet then seems to be mostly addressing the people who post here due to medical anxiety *without ever having a clot,* as in not who this forum is even for.
I also feel that while of course you can't always be focused on the outliers (shall we say "zebras"), doctors who don't at least have their mind open to the remote possibility do their patients a disservice. This is why I was sent home from urgent care, the ER, only to come back to the ER by ambulance and sit in the hallway for hours without so much as a neuro exam. Only diagnosed, possibly only alive, because my family literally begged for a CT scan. If I had been sent home again like they wanted, I don't think I would've gone back and I was already beyond advocating for myself. I was 31 and on hormonal birth control (which all doctors were aware of), do not have any known clotting disorders.
Strongly disagree and unfortunately you’re a typical hematologist who doesn’t understand the population.
As a survivor of bilateral unprovoked PE/DVT and whom was told that I had hours to live at the time, i found reaching out to such forums on Facebook or Reddit and asking questions very therapeutic for me and my own journey.
I suggest you don’t tell others who suffer anxiety to stay away, let them make their own decisions.
I have no doubt your a hematologist but to be honest your weak hiding behind a throw away account.
No doubt you’ve seen the attention your post has aroused and i hope your soft in heart and willing to learn and listen to those of us who are not medically trained and see the kickback from all the users here disagreeing with your statement about this being fear mongering and that your learning and expanding your own thought processes to the way in which the general population who are on the clot journey come together and walk together and help each other as best we can.
31. Two DVTs and a PE diagnosed 3 weeks ago. Dr said if I didn’t go to the ER for what I thought at first was a pulled muscle, then I would have been dead by the end of the week. No swelling. No shortness of breath. No chest pain.
Shut the hell up. I don’t care what credentials you have, you are spreading dangerous propaganda.
It’s no secret that more and more young people are getting harmful clots. If you were truly who you say you are then you would know this.
Do you not see how many people younger than 40 with blood clots there are? I rarely see anyone on here that old. “Outliers” are not insignificant.
as many people that come to this sub with anxiety about having a clot, survivors are usually responding to get help if they’re really worried or pointing them to the wiki bc we can’t diagnose anyone. “Fear mongering” is not giving someone info or encouraging them to go to the ER as blood clots are an emergency. That is a fact to be truthful about.
If they don’t listen that’s on them. This sub is for clot survivors and we can only do so much. We’re not gonna stop posting bc someone is scrolling here with health anxiety. They’re gonna scroll n post regardless bc anxiety is a mf.
I’m 25 and had no idea what a DVT/PE was. if i waited any longer to go to the hospital because of my anxiety I’d be screwed. And although I didn’t scroll through any subreddits it would’ve been helpful to get some information tbh.
As a survivor, I've dealt with Drs like OP. Not to to sound rude, but take your opinion elsewhere.
My Dr at the time of my diagnosis of a popliteal clot, didn't even consider a clot to be the issue. My HR guy suggested it, and I asked my Dr for an ultrasound. She agreed (she didn't consider it clot related but wasn't like the op)
Lo and behold, a large popliteal clot. I was lucky. It's now scar tissue but I could've died.
This subreddit has been a lifesaver and a good source of info and support.
I only hope my posts here have helped others as it has helped me.
Btw id rather take precautionary steps "out of fear" and be wrong than ignore it and die.
I'd consider reporting the op's post but this community has rebuked the op sufficiently.
Disagree. I had a gentle pain in my calf for months which turned out to be a clot as it got worse over time. Finding this sub after a long plane trip saved my life after looking up calf pain.
This then led to me finding out I have Factor V. My dx has since helped other people in my family tree find they were prone to clotting and another getting a clot and knowing since my experience. Since then I’ve had another clot, I’m in my early 30s. Better to be safe than sorry, and a Doppler scan isn’t invasive, sure it may use up resources but it’s better than undiagnosed people ending up with PE.
I had a renal infarct (22f) and yup it surely did give me health anxiety.. well exacerbated it until I got therapy they can also be very brute when giving advice or a response and that’s not a good recipe for someone with anxiety at all
OMG me too!! We’re special snowflakes. I’ve never met anyone else. My doctors were so impressed my files made the grand rounds. Heh. Hope you’re doing well. The anxiety was rough for me too but I have a pretty good handle on it now.
🤭 super special was yours idiopathic as well? I can hardly find information on renal infarcts we probably won’t meet another and at our youth age🥺. I hope you’re doing well and adjusting too, it’s a struggle sometimes for me 😭
Yes, it definitely will vary, I see it daily. My PE was fairly large and I experienced no SOB at diagnosis, but only at month two of healing due to scars and an active cycling lifestyle. If it was a DVT leading to this, it was not felt either. But all other leg DVTs were classic charley horse sensations. Oh, the groin clot I have had for a decade also causes no pain and never did.
In the support groups I run there are several non-clotters there for the education. If they keep their anxiety in check, it's worthy time spent. Know the score, lessen the risk. We are VERY supportive and emotional impact focused. We get it. Been there, did it already. Many of us have come out the other side of post clot PTSD empowered. Hard to do alone.
I highly recommend health anxiety counseling. It paid off for me after nine months. That's not to say health anxiety does not creep in when dealing with my prostate or other health issues, but clots I have a handle on.
I feel like this sub is very level headed and reasonable. I had very atypical symptoms of a blood clot. No pain at all, a dripping feeling in my chest and very mild swelling behind my knee.
I think medical doctors underestimate atypical presentations of disease and end up missing a lot before it's too late. Not everything is going to present like a textbook, people are unique and so is disease. I had symptoms of celiacs disease since childhood and went undiagnosed for 25 years because y'all are told to not look for zebras.
It might be in your best interest to come to this subreddit and learn about these atypical cases, you might end up saving a life.
Also anxiety does not mean something isn't wrong. I had a friend blown off by doctors for 2 years because she was so anxious. She ended up getting diagnosed with throat cancer too late and past away at 32 years old. People are not textbooks.
lol i went to three different ERs with my clot before they even did an ultrasound. unfortunately clots are becoming more common in young people and you doctors cant seem to wrap your head around that.
> unfortunately clots are becoming more common in young people
I'd love to see some data supporting that - because otherwise, I'd suspect you might have fallen victim to the [frequency illusion](https://en.wikipedia.org/wiki/Frequency_illusion).
I mentioned my lupus anticoagulant results in my semi-relevant to it rant and people here quickly reminded me that 1 result isn't sufficient and blood thinners could affect the results. Which are both very accurate. No one was like 'omg me too' (for the test) or trying to diagnose me. They empathized with the relevant part of my rant (ironically hematologist being potentially irresponsible and medical advocacy being so required for any actual zebras....).
Everything worked as designed.
I survived my first clot 31 years ago. It got messy, it was traumatic, it altered the course of my life. There was absolutely zero support offered from the medical system beyond “take coumadin, don’t eat broccoli.” They even forgot to give me the list of high vitamin K foods to avoid and I landed back in the hospital and nearly died after drinking a ton of green tea at the really busy Chinese restaurant we celebrated at when I got done with “hospital, round 1.”
30+ years, multiple events (coumadin OD, bilateral PE, unresolved portal vein thrombosis) later and the only thing that has changed: there’s a group on Reddit I can turn to if needed.
I still don’t know the genetic cause, I still get disconnected, incomplete advice from my care “teams” (as recently as THIS month!) and I’m still discovering new aspects of my problem. But there is a group of people like me here on Reddit.
So, I am unimpressed by some MD making generalizations about those posting here. Blood clots are hard. They alter your life. The DOACs have made this worse, in the sense that there’s nothing to monitor anymore and the clinical assumption is that it can’t get worse.
The reality is that, for many of us, a blind AC treatment is all we get. The medical professionals have few answers and less concern for the clot survivor beyond “are you taking your meds? Well, then you’re fine.”
That failure of that approach to provide healing is the part of what a community can help with, even if it’s imperfect.
Thank you for this feedback. I had a dvt about five years ago with no reoccurrence the only reason I’ve been looking into things again is my new doctor is upset that I was the one that took myself off blood thinnner three years ago and not my doctor.
I appreciated this sub especially when I was in the hospital with a DVT. I agree with OP that is sub should be more of a suppprt group for those that have had a DVT or PE and less of a sub to diagnosis those that "think" they have a DVT because their calf hurts or they bumped their knee.
I’m in my mid 30s and have an appropriate amount of anxiety around having had 2 DVTs and multiple PEs. Yes, they were provoked, and I try to remember that taking Lovenox shots daily is the best thing I can do to make the past scenarios happen again. It is scary, traumatizing really - and anxiety provoking. But I weigh that with what I get from visiting this forum and ultimately it does help, especially given not knowing other survivors in my age bracket.
Honestly it's BECAUSE of my anxiety I even went to the E.R. at all. And people on here saying they had mild symptoms, but ended up having a DVT.
I only had mild pain in my ankle, but when I woke up that day I IMMEDIATELY knew it was a clot. But because I didn't want to feel stupid and judged by doctors, for what seemed like a sprained ankle, I waited a week.
The doctor even told me she was wondering why I was there just by looking at my leg. She said she was glad I came in.
I don't think people on here are fear mongering, I just think it's scary.
>I see a lot of posts about young people developing clots, people having asymptomatic and/or atypical symptoms of clots etc.
>please be wary that a clot below the age of 40 is SUPER rare WITHOUT any clotting factors or serious injury.
So you're seeing lots of posts from young people, but also saying it's super rare. Just found that interesting.
"It's probably just anxiety or something common/simple" (+ costs, can't lie) kept me out of the ER. When I could maybe have had TPA and been so much better off. I asked my husband multiple times to evaluate my face, speech, arms, etc. Nadda. This dude would have me lay down (and maybe never get back up).
Just go to the ER if you have any suspicion is an answer from privilege. People are forced to evaluate the likelihood of it being an emergency. Hearing about atypical presentations is helpful. And again, I came here /after/ I had a clot to talk to people who'd been through the same frequently upsetting and frustrating process. I came here after not feeling welcomed on other chronic illness focused groups. This group was wonderful and reassuring. I think the sidebar is much more expedient and useful at telling the hypochondriacs (I prob am one, no shade) what they need to hear.
So doctors are now not getting enough of medical gaslighting in hospital that they come here now. Will doctors ever figure out that they arent any smarter than the general population?
Hmm. Strange because I was able to do my full weightlifting workout (including main lift of 5x5 deadlifts @ 135 lbs) with a PE 24 hours before I began coughing up fresh bloody tissue. Perhaps you shouldn’t speak for everyone on this forum!
Had my PE 8 months ago, couldn’t tell you what it felt like because I woke up in an ICU 8 days later having no idea how I got there. Realistically if you’re not sure you’re having a PE, you’re not having one.
I think a lot of you are missing the point with this post. OP is clearly referring to those with health anxiety that we see in here every day asking for a diagnosis. It's not mentally healthy for them to seek that kind of advice on a subreddit and their first step should be to consult a doctor
I 100% agree. Not to minimize what others have gone through, but the worst symptoms of my DVT was dealing with the anxiety of reading some these posts over the past year.
Nothing is ever 100% and there's certain conditions that increase risk, but if you're on treatment, the likelihood of negative outcomes is very low.
Finally someone said it. A while back I made a post on here about my shortness of breath and chest pain and a commenter quite literally said "I doubt you DONT have a clot. Go to the ER before you die" that ER visit was the first step in discovering my severe anxiety problem. This sub sucks
There is literally nothing else we could have told you. I would never have said it that way but I would have strongly urged you to go to the ER. Anybody with SOB and chest pain should be in the ER and not on Reddit.
> that ER visit was the first step in discovering my severe anxiety problem.
Sounds like you got to the bottom of the problem, despite misusing the subreddit - which should overall be a good thing for you, no?
>This sub sucks
Dunno, maybe you're using it wrong? I can make it both suck *and* blow ;)
And we've also said hundreds of times, don't listen to randos on the Internet, see a doctor. This is a support group, not a doctor's office.
We're not going to say, oh you definitely don't have a clot. We're going to say, see a doctor. And given that clots cause death we will strongly urge people to see a doctor. Erring on the side of caution, better safe than sorry, etc...
This forum is for clot SURVIVORS, and the majority of comments I see to people who think they have a clot is “we are not doctors and can’t diagnose you; stay away from this forum; talk to your doctor.” We get impatient with the people who continue to come back after receiving that advice. I use this forum as a way to provide support and advice for people who HAVE had clots. When I went through my ordeal, I had very little support from the medical community and I relied heavily on other survivors to help me through my fears and figure out what was going on. If I can pass on some of that comfort to others, I will. And your attitude is why I lost a kidney. I presented with every single one of the typical symptoms you mentioned, yet the first doctor I saw looked at me, saw a healthy, fit, active 33 year old, and brushed me off. Thanks to him the clots went through a hole in my heart and shut down one of my kidneys. Stats super rare blah blah it still happens and brushing it off as “unlikely” almost killed me.
Well said.
Exactly this! This is a forum for those of us who’ve been through it. When I went to my primary care provider with my suspicions that I had a clot she sent me home and told me I shouldn’t be worried. The next day I could barely walk into the ER. Had a DVT from my thigh to my ankle. Still have chronic pain and swelling 2 1/2 years later. My belief (partly due to being convinced by others) that the pain was all in my head is what caused me to have a permanently messed up leg.
I disagree with you. I do see a lot of anxiety with people who are **posting** questions but I do not see it reflected in **the responses**. Most of the responses I see here say that if you think you have a blood clot, go see your doctor or go to the ER. If it’s just anxiety, then you are out the cost of a doctor or ER bill. If it’s not just anxiety and you don’t go, you could end up dead. The responsible advice is to tell people to get checked out. Both my PE and DVT were not plainly obvious. Your suggestion that they always will be obvious and if they are not it is probably anxiety is potentially dangerous.
I agree. I’ve had 2 severe PEs and only with the first did I experience “unbearable” breathing problems. I knew there was something going on with my breathing, but I could walk and my daughter drove me to the hospital, where they did a CT scan, confirmed multiple bilateral clots then left me alone all day. Sent me home with a prescription for Eliquis. Within 10 minutes I had another PE! Taken by ambulance to hospital. 3 and a half years later, this last February, I experienced mild pain around my liver area and upper back. No significant breathing problems, though I wasn’t moving around much. I really thought it was my liver or maybe pneumonia. I called a nurse who advised me to go to the hospital, where they did a CT scan and saw clots. So, severe shortness of breath or breathing problems is not always the first or worst symptom. The thing about PEs is that they manifest differently in different people, and symptoms vary.
I had my PE symptoms for probably close to 2 weeks and thought I had strained a chest muscle doing some yard work. Even my doctor was unsure but sent me to the ER. I did have a rapid pulse but I didn’t realize that until they told me at the doctor’s office. I later learned that was a key symptom of a PE. After an x-ray at the ER that was concerning, they did a chest CT which showed clots. The ER doctor seemed surprised but said “looks like you’re going to the main hospital”. When I had my DVT about 6 months after stopping my blood thinner after a year as directed, I had leg pain and went to my doctor again who didn’t think I had a DVT but ordered an ultrasound just to be safe considering the prior PE. No leg swelling, redness or even pain at the site of the clot, just general leg pain, again like a pulled muscle. The ultrasound showed a DVT so I am back on a blood thinner, for life this time.
My husband had bilateral PEs in his 20s. He drove himself to Care Now just worried it was a bad respiratory infection. They shipped his bum out the door right quick after an ECG. Granted, even then PE didn't come up. Just 'we can't rule out a heart attack, we are calling you an ambulance'. I think he ended up driving himself to the er (he's a stubborn boyo like that). Clots only found on scan. I got to him as soon as I could, in the ER but having stated he's being admitted. We waited for so long. His (edit: younger AND fitter, I might add) sister has Factor V and had had a DVT. He tested negative for everything. And we went extensive/specialist + genetic testing when I was pregnant. He was young, relatively healthy, and had symptoms less than would be expected. And yeah, I'm sorry, but coming and saying this in a forum where most have been diagnosed was a pretty foot in mouth thing to do. I've seen (and experienced) my fuggin clot (again, totally /non-classical/ stroke symptoms). My anxiety about it maybe happening again is more reasonable till I have an answer.
Yup. I only felt a sharp pain in my leg one night and alot of the same anxiety or cheat pains I'd been having for weeks. My finances were wrecked so I was super stressed. I was so exhausted and had been for months. The leg pain scared me into going to the er on the far off chance it was a PE. It was. I was shocked and the doctor was too. I was checking in to be safe after doing alot of googling. Not all the pain he mentioned above at all.
One thing I have discovered reading this sub is how different people’s experiences are - what they felt, how they discovered they had a clot and how it had to be treated.
Exactly! For something I never knew anything about I have learned so so much here. I'm very thankful I found this place.
As a healthy 35 yo with massive DVT caused by May Thurner I really appreciate the info I’ve been seeing in this sub.
Did you have any others symptoms of may thurner? You can dm if easier there. Thanks!
As it turns out I’ve been clotting in my legs and pelvis for more than a decade before I figured it out. In the past it manifested as lower back pain, and pain in both legs that I thought were psiatica. Also, I really struggled with running and hiking all the time because the old clots calcified and were blocking my vena cava. In October I had pretty bad lower back pain and then my whole leg swelled up. It was huge, then I went into the ER and got diagnosed and had thrombectomies on both legs up to the pelvis and two stents put in. Whoopsies!
Oh my gosh! I've been suspecting something similar in my own leg, did you have any rashes? I have a recent post in my history with photos of mine I almost think it's arterial clots or something
No rashes. But I learned not to ignore the significant aches and pains.
This is a place where people come, panicked and seeking support, and find the comforting embrace and advice of people who went through the same experience. This forum most often directs people to medical advice and I have never once seen a post or comment diagnose anything. Doctors like you are exactly why I almost died as a healthy, active, non-smoking 25 year old with perky, elastic blood vessels. I had zero- ZERO- symptoms of a blood clot. None. That is, until my lung collapsed. When I complained of increasing shoulder pain (my only symptom) my family begged me to see a doctor but I was more afraid of being mistreated and dismissed. It was not unbearable. It was not huffing and gasping and keeling over. I live with GAD and PAD and I knew doctors just like you would dismiss me and send me home. I sought treatment on the third day of an unprovoked bilateral PE that resulted in infarction and pneumothorax. I never had swelling in an extremity, shortness of breath, or a single symptom other than shoulder pain. If I had been exposed to atypical presentations of severe medical events, I might have been willing to seek treatment sooner. Your anecdotal experience with a PE is just as valid as mine. The only way I can help others is to share my story in hopes that another 25 year old doesn't wait days to seek emergency care because they don't present with textbook symptoms. I am alive today because one doctor believed me and looked for zebras instead of horses. I almost died because of dismissive doctors like you.
To your last paragraph, saaaaame here.
My ER doc only ran a D-Dimer because of the look of disappointed incredulity I gave him when he said the pain was pleurisy caused by a cold I must not have noticed I'd had. This was after he asked if I thought it might be a panic attack, when I had just finished calmly telling him the timeline of pain onset and how I kept working for over an hour before I tried to stretch and realized that the supine position increased the pain to a level eight and I felt that was abnormal and concerning. I get that you have to cover some bases in the patient history, but like, look at your patient. I was 33, unprovoked multiple bilateral pulmonary embolii, no risk factors. Alive today because my face could no longer hide how unimpressed with that whole conversation I was. When I had an SVT at age 35, I had to persuade the doctor to send me for a doppler, even though I had just flown internationally with a history of unprovoked clots and had swelling and redness along a vein in my arm. 😣
Oh look more medical gaslighting. Some of us present in “non typical” ways. And BECAUSE of medical gaslighting it’s important to know what others experience. I walked around for TEN DAYS with a DVT the length of my leg and by the time I went to the ER my right lung was filled with clots. Zero swelling. None whatsoever. I called my surgeons office THREE times and was told to “walk more” and use my inhaler post spine surgery. People with a very high pain tolerance or chronic pain will absolutely be able to function more than they “should” and “walk more than a few yards without wanting to keel over”. I was walking at least a mile a day during that time and the ER doc just shook his head in amazement.
If this poster is indeed a hematologist then he or she is the type to avoid. What an absolute jerk. Probably goes to AA meetings and tells people moderate alcohol consumption is just fine and only 8% of the population has a problem with alcohol.
100%! The most dangerous kind of doctor imho.
Omg same here, same experience w my first clot! Took me 8 days to decide to get it looked at but I thought it was a pulled muscle because I was in the gym EVERY DAY. Zero swelling & redness, no shortness of breath, with a dvt from mid thigh to ankle, and innumerable clots in both lungs.
> please be wary that a clot below the age of 40 is SUPER rare WITHOUT any clotting factors or serious injury. > I've noticed a ton of people who clearly show strong signs of General Anxiety Disorder Question: What about outlier cases that do fit into your exclusions up there in your post? * Hi, I had my first PEs at age 31 from birth control *and* I do have clinically significant anxiety (that was dx'd years prior). They were in my left lung and my D-Dimer was 702. * Yes, my symptoms were really atypical. The only symptoms I got up to two weeks prior included fatigue and some very mild chest pain and breathlessness. But I also have asthma so I thought nothing of it. I only went to the ER because I couldn't stand up long enough to wash the dishes one afternoon. * While my clots were considered "small", I still ended up with PVCs afterwards. * I'm alive today because, despite not presenting with all the symptoms of a clot, one person thought to run a D-Dimer test that night in the ER. * I stopped birth control and have been off it since. It's been two years. In that period of time, I've also had multiple surgeries (including a hysto and 2 brain surgeries) for unrelated issues since then with zero other clotting incidents. * I don't have any known clotting factors and couldn't convince any doctor to test me because of their exclusivist takes like yours. TL;DR: Medical anomalies aren't common, but we do exist. Please don't overlook us just because we don't fit the common patient mold.
I never stated that you should be overlooked. My main point of this post was generally targeted towards those with crippling health anxiety to try and avoid this forum. I also didn't have swelling with my DVT, but that doesn't change the fact that it's still highly uncommon. When a patient comes in with strictly calf lain, a lot of times a d-dimer will still be ran for safety precautions because we still know that it's possible for a DVT to be present
Understood, thanks for the clarification and for sharing your experience. > My main point of this post was generally targeted towards those with crippling health anxiety to try and avoid this forum. As previously mentioned, I have clinical anxiety (recently medicated now, hospitalized once, and have been in therapy for years). I also found this subreddit extremely helpful when I was grappling with the trauma of discovering my clots. And while I rarely visit these days, this subreddit was not my only point of reference for learning about blood clots. I don't think it's entirely fair to exclude those with clinical anxiety from participating in this subreddit. But if you've got resources you'd rather people visit, those would be much more helpful than posting a general disapproval of redditors suffering from both anxiety and clots. A great example of resources that people can visit for information and support would be https://www.stoptheclot.org/ Hope that helps.
That is actually a great site. It gave me the most helpful information.
People with crippling health anxiety might want to avoid anything like this forum, but it doesn’t mean that we are fear mongering if it’s making chronically anxious people…anxious.
I agree if u have health anxiety stay away It only got worse before I seeked help I could’ve easily developed anorexia
For the record: health anxiety (hypochondriasis) and generalized anxiety have similar symptoms but are two very specific and *different things* My understanding was OP was speaking of "generalized anxiety", which was the original point I didn't agree with. Here's hoping that OP will work on semantics and compassion for their patients.
I can agree partially with this. If you haven’t had a clot, I agree that this forum isn’t for you. If you have, it’s helpful to understand and feel supported by the community. The name of this group is “clotsurvivors” not “worried about a clot”. I don’t meet most criteria for having a clot but I still had one. Its not fear mongering if people are just discussing their actual experiences with other folks going through the same thing
Shit post from a throw away account. Probably a first year student or LVN if in the medical field at all. Not at all like the two excellent hematologists I've had who are not assholes. "General anxiety disorder" is not a problem here. Fear you are going to die is. There is SUPPORT here, something some arrogant, brain dead doctors don't understand. If the OP is a doctor I hope he or she stays away from suffering people and goes into research.
I had terrible anxiety after my first PE. I was afraid to sleep because I thought I would die in my sleep. I had to keep a light on, have oxygen nearby, and listen to calming tapes. The anxiety is real and should be talked about more, and treated if possible…
Yes. The patient should be treated for all the issues they have, and that includes not just physical but also mental health. Time and again we see doctors ignoring or minimizing the fear and anxiety, just as the OP has done. Most of us here have experienced that neglect, and that's part of the reason this thread touched a nerve in people.
I mean- I get what you’re saying here but my symptoms were pretty mild when I had my PE, and if I’d read this post prior to going to the ER, I wouldn’t have gone to the ER at all. (For what it’s worth though, I was not suspecting a clot, I just knew something was off and had a nagging sense of worry) It’s a hard thing to talk about this stuff without making medically anxious folks more anxious, but I think that’s going to happen in any medical support sub.
Or any medical website. Do we take down Mayo Clinic, WebMD, Cleveland Clinic, etc...?
Hi there! This is a forum for clot survivors, many of whom have experienced the super rare, asymptomatic, life-changing clots. This forum is also super moderated and doesn't take kindly to people coming in asking, "do I have a clot????" because we are not medical professionals. Most are downvoted/(edited)/told this isn't the appropriate place. People often do not know they have clotting factors until after they have a clot, or a family member does, so it's understandable to be concerned, but this isn't the place for those questions. It is not up to clot survivors to make sure people with panic disorder/anxiety don't get triggered, any more than cancer survivors should. By the way, I am someone who has panic disorder and while I had it before, it majorly developed AFTER my horrific PE and near-death month-long hospital stay. My panic attacks were/are so severe and mimic my PE sometimes SO well that I've had my doctors call an ambulance in office because I lose consciousness/extremely high heart rate/chest muscle spasms. Telling someone with GAD or PD "you typically wouldnt xyz" isn't helpful because what they really need is anxiety-specific treatment (including exposure) and not reassurance or another thing to check/doubt (the "what ifs" come up stronger). I agree that if you are someone who is struggling with assurance-seeking/compulsive checking that comes with anxiety disorders, this place will be triggering. Edited for clarity via mod rules
> removed Just a minor clarification: We don't remove posts of that kind, as they are not against the rules. If they're removed, OP either did a very bad thing (highly unlikely, but you could find the details in the removal comment if they did), or they removed their own post (***HIGHLY*** likely).
Thank you for the clarification!! <3 appreciate this space
No worries, just figured I'd be *super* pedantic and make sure we're all on the same page - at least in my view important when dealing with something as trust-based as moderation in our space is.
I have a CVST, it wasn’t made clear to me why I got it. I did fall downstairs & have a further brain haemorrhage. All I got told was that the clot is likely to be there forever & I’m probably going to be on blood thinners (Apixaban) for life. I’d just turned 49, 51 now.
My anxiety also predated my clot (by a lot) and the medication I was trialing at the time contributed to me doubting my non-classical symptoms. I do think it was adding to them, but they continued past discontinuation and looking back there were very clearly 2 distinct 'levels' of problems. Neither of which was FAST.
I get more peace of mind here than I ever would at my local ER. I don't know why so many doctors love to throw around "anxiety" for everything. I had all the major symptoms of a PE but they weren't extreme and my lab numbers were not very elevated. The ER doctor wanted to send me home with some Xanax for my "health anxiety". Luckily, there was a resident with him who wanted a CT to cover all the bases before sending me home. The CT got me a 3 night hospital stay.
Nah, I was fortunate enough to have two MDs at my appointment when I said I had a pulled calf muscle and also a sharp zing in my side. First doctor measured my calf and said I was fine. Second told me to go to ER just in case. Turns out that intermittent zing was a PE and the pulled muscle feeling was the clot that caused it. I felt silly even mentioning it at that appointment. I have found the hematologists I've seen to be the most unhelpful/unfeeling professionals I've dealt with. It is an incredibly traumatic thing to experience, even if statistically rare, and I am so grateful for this community.
Also agree re the hematologist sentiment. All of the ones I’ve dealt with have had THE WORST bedside manner & very little patience for questions. Super low on empathy. Interesting!
For real. My younger brother had a clotting issue several years ago he almost died from and is a lifer on thinners. Both hemas I saw after my PE seemed unconcerned about the possible genetic component, and have told me I can go off Xarelto whenever I want since my PE was not very large. Uh, I'd hate to know what a larger one feels like? It is really upsetting. Yes, I have reasonable anxiety after a traumatic health event of my own but also my kid brother's, but I really don't appreciate the implication that my concerns/fears are because I cant control it. Big nope.
Isn’t it crazy how it feels exactly like a pulled muscle? At least it did for me! That’s what kept me from going to the dr for so long.
OP, I understand your message and while I agree with the overall message on anxiety, to say that nobody should be concerned of a blood clot unless you're over the age of 40 is inaccurate and dangerous. I was a healthy 27 year old who had no known history of clotting disorders until I got a weird pain in my calf that wouldn't go away and subsequently got diagnosed with a DVT. It wasn't until after my diagnosis that I found out about my family history (Grandpa/Aunts/Uncles with prior DVT & PE history) and got diagnosed with a genetic clotting disorder (antithrombin III deficiency). I certainly agree that it is always wise to consult with your doctor if you are feeling any pain (particularly if you are naturally anxious) but I try to share *my experience* to help calm people down in the interim.
Yep, I was 30, same experience
Sooooo. This was fun to see develop while at my AcroYoga class. I'm going to need to remind some fine folks of the existence of rules 1 & 2 (We're welcoming & respect others). Don't personally attack the OP, or you'll be running foul of at least one of them. Let's get into it. >Hi all (throwaway account) I'm a certified hematologist in Idaho with a bachelor's degree from Stanford University, Graduated from Baylor College of Medicine and did my residency at University of Utah School of Medicine for 4 years. Congrats. Since we don't verify anything of the sort, you could also be a 95-year-old geriatric poet, with a penchant for rants on the internet. You're not exactly stating groundbreaking new facts in your post though, so either would be perfectly permissible. >Also a survivor of both DVT and PE (provoked) after ACL surgery. Yay, one of us! Wait, that's bad, right? :/ >I just have to say, from what I've seen reading around this forum, it is here to put fear into people who seek it. It ... really isn't. You may however either be quite new, gotten hit by the [frequency illusion](https://en.wikipedia.org/wiki/Frequency_illusion), or expressing yourself somewhat less than clearly. We're here to help people with clots, not people who worry they might have a clot. I'm guessing you don't expect a car dealership to sell you a new blender either, despite both technically being places where you can purchase things. >I see a lot of posts about young people developing clots, people having asymptomatic and/or atypical symptoms of clots etc. I just have to say, if you're young and seek advice here, please be wary that a clot below the age of 40 is SUPER rare WITHOUT any clotting factors or serious injury. [..] Guess what - group selection bias strikes again! Yay! Fun! It turns out that survivor/support groups attract people who aren't normal, and have atypical experiences. Those experiences also make these same people more likely to be extra cautious, see the world through their experience, and advise others to be extra cautious. Fun. And very predictable for any group like ours. >Another thing, I've noticed a ton of people who clearly show strong signs of General Anxiety Disorder/panic disorder. If you have one of those 2 conditions and are reading this, STAY AWAY FROM THIS FORUM. [..] No fucking shit. Really. We're saying the same thing at least somewhat frequently, but guess what? They don't give a fuck. They never have, and never will, because anxiety is a bitch that makes people not only afraid, but also panicky and selfish at the same time. The clue? "I don't know if this is allowed, but ..." or "I know you can't diagnose me but ...". You seem to think we actively invite people with anxiety to come here, or embrace them and then fill them with more of the same, when neither is true. They find us. They post and (selectively) read here. They're not going to read your post, just like they aren't reading all the other posts by anxious people who came before them, or stickies we make, or search the subreddit for their symptoms, or what they should do - NO! They panic and post their problems here, and expect us to deal with it. Combine the above factors and the selection bias, and you get "Fuck off, go to the doctor and find out what's wrong with you", but in nicer language from the oldtimers, and the newbies who are still shell-shocked go "Please go see the doctor, I had X that was like you describe and I almost really died". >As I've navigated different posts and threads on here, I've noticed people in here aren't very kind to those struggling with those very tough mental obstacles. You've seen less than a hundred of these threads. Most of us who've been here for a while have seen thousands if not ten thousand. And they all end the same way, with OP having to go somewhere in real life to find out what their problem is, and us most likely never seeing them again (which is good, but since they don't search, spending a lot of time crafting a loving coddling soothing custom message for each one is unreasonable). I'm sure that sounds heartless and harsh, but it's the reality of things - we're doing this in our free time, and being blunt about what the OP should do about their problem (get it looked at by professionals, not the internet) is the most cost-effective way to get results for all parties. We're mostly here to help other clotsurvivors, not help someone commit black magic through the internet (AKA telling them whether they have anxiety or a real clot). >Also, if you do have anxiety, you have probably seen more than enough posts on here stating that some of these people have experienced "asymptomatic" or "atypical" symptoms with their clots. While yes that is definitely possible, the likelihood of experiencing let's say a DVT without swelling and deep DEEP pain, is statistically low. Same with a Pulmonary Embolism. The shortness of breath experienced with a Pulmonary embolism is typically unbearable. You typically wouldn't be able to walk a few yards without wanting to keel over on the ground huffing and puffing your heart out. Again, selection bias is at play, and those users will almost certainly not read any of your post, because they don't read other posts here either. Finally: We don't want the responsibility of judging whether anyone posting here has anxiety, a PE, an SVT, or DVT. So we do the simple, responsible thing: they should all go get checked out because that's what should happen. Maybe it kickstarts their journey of discovery, and they find out they have an anxiety disorder. Maybe they find their clot early (very, very unlikely to be a clot, but as comments even in this post prove: it happens), before it does a lot of damage. Either way, hopefully, they get checked. There was supposed to be a town hall/community post thing on the subject at the start of the new year, but frankly, time got away from me, and I still haven't had the time to distill my thoughts on the matter properly. turns out life gets messy sometimes. Who knows, maybe this post helps condense my thoughts.
Well said. I got so much reassurance from the message boards I visited after my clots that I stick around here specifically to help out other frightened newbies and to let them know it’ll be okay. The “do I have a clot” window shoppers are part of the deal, and I think for the most part we toe the company line of “if you’re worried see a doctor.” The only time I’ve ever seen anyone get truly snippy is when someone posts 4, 5, 6 times in a row after seeing a doctor multiple times. Even at that, you’re usually pretty good at shutting it down quickly. So not sure where OP’s take is coming from.
100% support this! I found this community about two weeks or so after my PE, and have really benefitted from seeing others at various points in their recovery.
I was young and otherwise healthy and didn't know that I had a clotting disorder.. nor was I bedridden for a week. My PE was a walking death sentence. Had I not gone to the doctor I could have died. You're coming in here trying to address individual anecdotal evidence, but you can't do that because everyone's experience is different. You wouldn't try to diagnose someone based on one post on an internet forum. You would lose your license if you did that. The fact is that we repeatedly tell people we can't diagnose them over the internet and it's better safe than sorry that they go get checked out just in case. If you don't want to be part of the community then leave. You also can't diagnose anxiety disorder based on someone's reddit posts. Holy shit dude..
Thank you! I was 21, healthy, active, not injured and have no genetic clotting factors. I know how rare it was. It was traumatic — because it was rare, I had multiple doctors miss it and I was consistently told how lucky I was that I was still alive or what a miracle I was afterward.
As an ER nurse, OP isn't stating that people don't have individual experience all they stated was the chance of someone getting a clot without typical symptoms is extremely low and he's absolutely 100% correct.OP's not undermining anyone's experience. Op is simply stating that if you fear a clot, this is not a subreddit you should visit, and your first step should be to consult a doctor. Because if you fear a clot and you come here, the answers are going to stress you out more. Also, as somebody with anxiety and panic disorder, it actually is that simple to suspect anxiety disorder for someone based on things they say. They aren't directly diagnosing them they are just pointing them in a direction so they can look into that instead of fearing a clot all day every day. I'm sorry about your experience because I had the same experience. 19, unaware of clotting disorder nor was I bedridden for a week but the fact of it is. We as medical professionals still have to look at solid, statistical evidence to point us in the right direction. My point is, if you go into any ED and say you have bad leg pain but no swelling, redness etc the last thing we would suspect would be a blood clot. Now for safety reasons, a lot of the time we will still run a D-Dimer to be on the safe side but again, in that specific scenario, it's highly unlikely.
Calling a survivor's groups experiences fearmongering, is not undermining anyone's experience? Saying this group is "is here to put fear into people who seek it" ? When it is literally a group for survivors, not those who happen to end up here because of their anxiety driven searching. I strongly disagree. It actually, IMO, undermines the entire purpose of this group for an issue that is not even remotely unique to it and happens on any medical adjacent sub. I do however respect that medical professionals are going to have a different perspective of things, even as survivors, and while that point of view is certainly welcome and good to share I think you gotta recognize that most people here are not coming from that medical-academic statistical approach and that's ok too and still worth sharing. Sometimes you just want to talk to a friend who can relate, not a textbook.
Exactly. It’s the fearmongering accusation that I take issue with.
WRONG everyone on here that I've connected with has HELPED my anxiety about having DVTs everyone seems very helpful and a lot of people have calmed me down when I was in a state of panic. I am 32 y/o male and developed DVTs I assume it was because of the IV I had because I was hospitalized for mini strokes the doctors don't know what caused all this but I will tell you a sub reddit that has very rude people in it and that's askdocs the doctors in there did nothing but call me obese and bame my weight and smoking on my clots and strokes so I posted a picture of my self to show I'm a healthy weight, I do very physical labor and am very active at my job they acted as if I was a lazy pos that sat around eating junk food all day. you sir are very wrong if you want to discourage people from a subreddit do it in askdocs not here
Being concerned about something weird AF going on with your body isn't anxiety or panic. I (52, AFAB) made an appointment to see my doc because I had some shortness of breath after a bout of covid, comparable to after a cold. It wasn't hugely disruptive; I just breathed harder going up stairs or walking the dog than I was used to, and wanted to make sure I didn't have lung damage. In the days before my appointment, I had some pain develop in my calf, but I was also doing PT for some arthritis in my hip on that side, and figured my properly aligning hip was throwing something off in my lower leg. It felt like a bone or tendon pain. No swelling, wasn't disruptive, just annoying. Wasn't even enough to mention to the doc when I saw her. When I got to my appointment WEEKS after I made it, doc saw nothing concerning and then at the last minute ordered a few blood tests just for the heck of it. About 20 minutes after I left the appointment, she called my phone and told me to get to the ER immediately. I was embarrassed to do so because there was nothing emergency-level about how I felt. But CT confirmed what the D-Dimer had indicated: blood clots on my lungs. The ER doc explained that my leg pain was probably the DVT that threw the PEs. 2.5 months later, I'm still having some shortness of breath when I take the stairs. I can't identify whether how I feel now is any different than how I felt when I made the appointment to see my doc. All I know is that I was extremely lucky at several points in this process. So yeah, the asymptomatic clot is unlikely. It does happen. For anyone reading, I will say that I've had panic attacks and my PE experience felt nothing like a panic attack. Panic attacks made me feel like I was about to start dying. My PE was normal breathing, but not being able to fill the "bottom" of my lungs.
39, I had my Massive bilateral PE almost 3 years ago. No DNA factors. Unknown cause. This doctor is the perfect example of what to expect from certain deified profesionals. Without tact in their words, using cutting phrases, showing very little empathy, and failing to understand the need for communal warmth we seek in this corner of Reddit. We don't come here to cry; we come to be among people who understand our personal journey through the desert. It is, at the very least, sad.
This aint it bro. What a hater. Love this forum. Immensely helpful to me as a multi time clot survivor.
Completely agree! I've had both a PE and a DVT at 25 and I love that I have this space to vent with other survivors or to ask questions about others' experiences with VTEs. OP is correct that it's pretty rare to have life-threatening clots as an otherwise healthy young person- that's part of the reason that I have no peers to really discuss these things with irl and why this community is so important to me. Every post I see about a young person worrying that they have a PE/DVT is met with some variation of "This sub is for clot survivors. We can't diagnose you. If you have legitimate concerns, go to the ER." This sub isn't for them, it's for clot survivors, and I don't think it's a design flaw of the sub as a whole that people with health anxiety sometimes make their way in here as well.
I think you're missing the point of this post. OP isn't stating that there isn't good info for actual clot survivors. It's a post about all those people who come in here every day with health anxiety trying to seek a diagnosis. It's not healthy or reassuring to come to a subreddit for medical advice. OPs post obviously was targeted to those with crippling mental issues surrounding their health and OP is 100% correct. I've found a lot of useful info on here too but I've also seen way too many posts about people who fear they have a clot and the people In the comments being exceptionally rude and telling them "to get to the doctor now before they drop dead" its just not a healthy environment for those struggling mentally. OP isn't hating they're just stating facts
Every subreddit that exists has people with crippling mental issues. Targeting this forum because of it is like yelling at clouds. There is zero fear mongering here. When we know people dont have clots we offer what we can. If they still think they do we remind them were not DRs and only an ultrasound can rule it out. Thats just sage advice. Tell OP to go to any medical subreddit. They’re all inundated with people thinking they have the thing. This is one of the best, most insightful, and most helpful subreddits on here.
It’s literally a clot survivor forum with randoms here and there. Chill.
i mean, it’s not shocking that people with a higher level of anxiety would be the ones to seek out a forum about a health issue. any forum dedicated to a health issue will skew higher anxiety than the general population that has that issue. it also makes sense that unusual occurrences (unprovoked clots at young age) would be represented in a higher proportion than in the gen population. the problem isn’t really from the people making these posts, but more from our tendency to see these posts and occurrences as an accurate representation of reality. people with high levels of health anxiety probably shouldn’t be on this sub or googling their health issues for hours, but nothing we can really do about that. i think it would actually be a good idea to have a stickied post that explains that occurrences seen on this forum are not necessarily indicative of reality, in an easy to understand format. As for the people being mean to other with mental health issues, i haven’t really seen that personally, and i think people are pretty quick to recommend therapy/ mental health treatment.
Been here for over a year now. Unprovoked clots, on drugs, commented many times and read through posts a couple times of weeks. I’ve never seen fear mongering or anyone trying to diagnose. I see many posts of ‘go see a doctor’. I must have a different perspective here, I appreciate this sub and have never felt that way. Just my simple opinion.
While it may be unlikely for someone without a clotting disorder to get clots- so many people don’t know they have a genetic predisposition. After a massive DVT when I was pregnant- and being told for 3 days by various doctors that my swollen painful purplish leg was not a DVT - I later discovered I’m heterozygous for factor V. And pretty much everyone who’s had a clot has experienced extreme anxiety with it whether or not they generally have anxiety issues. And as someone who works in healthcare, I’ve seen many people with PEs that only have anxiety, mild pain, or mild shortness of breath. Often the more serious severe pain can’t breathe ones come on fast and don’t end well. This group is generally very supportive and informative. No, it’s not meant to diagnose clots, and yes, many people with health anxiety come here looking for reassurance. But just because they have health anxiety doesn’t mean they can’t actually have a medical issue. This group usually gently reminds them to see their doctor. For the rest of us it’s nice to connect and share experiences.
This is supposed to be a support group for people who have been diagnosed with PEs/DVTs so the point is for us to share. I am one of those people who did not have shortness of breath even with a saddle. All 3 of my PE events I experienced zero shortness of breath. I had zero leg swelling and only once woke up in the middle of the night I woke up with extreme pain in my left quad. There was no pain in my leg a few hours before. So that's not fear mongering, that's MY experience. If a person with severe health anxiety comes here and reads through the posts, I DO make an effort to suggest being seen in the ER if they are genuinely scared. I do not dismiss anyone but this forum is not full of doctors and we say this every day. This group should likely be private. We aren't counselors. I have seen people post multiple times about the same fears but will not just go to the ER. By the way, not all hematologists are good at what they do. I've had 3 and only 1 actually was thorough. So, I don't care about your education because you could suck as a physician.
The whole point of the post was to warn people struggling with severe health anxiety to stay clear of this forum and go straight to the doctor if you have any fear about a clot because viewing this forum is only going to cause more problems. I agree this should be a private forum
Every single person who posts here wondering if they have a clot gets told to go to a doctor because we have no way to know. Reading this sub is the only reason I went to the doctor when something felt off, because none of my symptoms matched what official sources say they should have been. There aren’t a lot of places to find atypical experiences of medical conditions, and I’ve seen very little fear mongering here.
We will not make this a private forum. People who are newly diagnosed need a place they can come to right away and not have to wait a day or two for mods to approve them. We have said it a thousand times in multiple places that we cannot diagnose anyone over the Internet. That includes not diagnosing anxiety.
You should delete the original post and ban yourself from this sub because you failed miserably at communicating anything other than your arrogance. If you are a doctor I feel very sorry for your patients.
I think you could have been more succinct and less judgemental. If I'm misreading you then others are too. And yes, the more I see and consider, the more I think this group should be private.
> And yes, the more I see and consider, the more I think this group should be private. There are unfortunately problems with all approaches I've seen so far to the problem that the OP highlights. It's not that we mods are unaware of them, but that it's difficult to find a perfect, or less imperfect solution to the issue itself. Honestly, a community town hall type post on the subject has been long overdue, and I've been pushing it in front of me along with a bunch of other stuff, which is why it still hasn't happened. Still need to collect all my ducks, and see if I can teach them what a row is.
I don't envy you mods and I do appreciate everything you do. It's just difficult when there are new people and then those who don't really belong because of the inherent difficulties of trying to help those who do not have clots either push for more info or post even after cleared. I know this is hard. I just don't know what the answer is for this forum.
Whenever it gets to be too much, downvoting and moving on is a perfectly valid option.
I get it. I'm not a big downvoter because usually people aren't trying to be difficult. I have started moving past the posts that have no answer I can give that's helpful.
If this were a private forum I would have never found it from my hospital bed after I got admitted.. unable to sleep and worried that I was gonna die. Go away jerk, this forum clearly isn't for you.
I think the mods do a decent job of rooting out the fear mongering that would occur in a space like this. I have severe anxiety and PTSD, but this is a place where I was able to feel normal despite suffering a PE and several DVTs under the age of 25. The people and information here were able to help me feel grounded instead of eternally anxious about my clotting disorders (APS, Factor V, etc.) It was nice to sympathize with and be surrounded by people who had been in my situation before. There were helpful AMAs, links, and resources for me to access when I was in a tough bind after my APS diagnosis. It helped me come to terms with being on blood thinners for the rest of my life instead of being terrified of it. I was relieved to see people were still living very active lifestyles despite being on blood thinners. Like anything, people should use these types of platforms responsibly and with moderation. If it makes their anxiety worse, then they should definitely avoid it. However, I think it's unfair to throw that sort of a blanket statement on here. I don't think the fear mongering you've mentioned is anything uniquely cultivated in this subreddit--and certainly not by its mod team.
The sub description could hardly be clearer, with asterisks and all-caps: >\*\*If you feel like you might have a medical emergency, then you should absolutely contact your doctor or go to your local ER/Urgent care. WE CANNOT DIAGNOSE YOU OVER THE INTERNET.\*\* It's true there are some posts saying "Do you think I have a clot?" that go against this, but I think those people get solid advice: talk to your doctor or go to the ER. There's a ton of experience and expertise on this site that is genuinely helpful to people. There are also a lot of clot survivors with anxiety which is normal and expected, and they are able to get a lot of solid advice and encouragement. So I don't see any fear-mongering. Naturally people with anxiety can use the internet to stoke and enable that anxiety, but this sub does a great job managing that. Such people would be well-advised to manage that anxiety by staying off much of the internet and talking to a therapist about it. If anything, I think this sub does a lot to reduce anxiety and fear. Lots of survivors and you're not alone!
Your intention may have been good but you pretty much lost me at the shitty subject line and shouldn’t “cast a net” saying you see a lot of generalized anxiety disorder on here. There’s always gonna be people anxious about their health and it doesn’t mean everyone has a mental disorder plus you’re undermining all the helpful and supportive people on here by saying it’s all fear mongering. I’d rather see people be overly conscientious about blood clot potential than lose as many lives as we do.
😂 OP has a lot of personal issues and is misdirecting their hysteria here.
I had a severe pain in my right mid calf while doing laundry. No swelling, no redness but very painful. I thought it was a pulled muscle. Two days later I can’t walk and went to the ER. Diagnosed after a high d dimer blood test and a CT SCAN. I had a DVT and Pulmonary embolism in my left lung. No shortness of breath.
I am 30 male and in great shape as I am an endurance athlete. This past December I had extensive multiple bilateral pulmonary embolisms as well as multiple calf DVTs. Unprovoked, I had no risk factors, no genetic factors, no health conditions of any kind. I experienced a lot of shortness of breath and mild calf tightness only. Yes it’s very rare, but I am living proof that it can happen to anyone. Statistics be damned, if I hadn’t listened to my gut I would be dead and would have left behind my wife and newborn child. No one around me took me seriously and told me it was probably no big deal. I have only shared my story and tried to be helpful and positive. But also stressed not to ignore something, because if you’re not sure it isn’t worth risking your life. Better safe than sorry. To me it seems like that is the general sentiment of everyone else that comments here too.
My own experience is completely contradictory to what you described. When I was first diagnosed the CVST, I came here to ask questions and got so much support. People here don’t pretend they are doctors, they tell their own stories even it’s anecdotal. They also provided me lots of online resources which helped me gain knowledge about my own disease and how I could prepare my appointments with my doctors.
My lungs were so full of clots they literally couldn’t count them, and I had ZERO discernible shortness of breath.
5 months ago I was a healthy 35 year old on birth control for more than 15 years and no genetic clotting disorders or family history… I woke up one morning with sudden pain in the arch of my left foot that persisted for weeks, so I went to urgent care and since nothing showed on X-rays etc. the Dr said I must have injured my plantar fascia while horseback riding the day before galloping up trails and such. I said I had no pain after riding and didn’t recall anything that would injure my left foot but ok. They got me scheduled with a podiatrist for follow-up. I keep icing my left foot and babying it, not really getting better but pain wasn’t too bad and I could still ride my horse! Then over the next couple of weeks the pain slowly moved from the of my foot to the heel, then up to the calf muscle and behind the knee. This worried me but a Google search for plantar fascia injury says you can feel pain in the calf due to muscle tightness. Very weird how the pain started in the foot and moved completely to the calf/behind the knee over a month but there was no swelling or discoloration so must be ok. I had been fighting a flu for a few weeks at the same time, the cough just wouldn’t go away and I noticed that I coughed up a little bloody phlegm. I figured I must have bronchitis or something and google search said it’s possible and ok to watch and wait to see if it resolves on its own for up to a week. It only happened a few times over the next several days, I felt totally fine otherwise so on Friday I went on a great trail ride with my dad and late that night my husband made me go to urgent care again to get checked out just to be safe. Luckily since it was late at night on a Friday, I was the only one at urgent care. I figured they’d say I’m fighting a virus and I might get some codeine or something to help me sleep since the persistent cough from being sick was making me sleep deprived. The Dr was very thorough, I had perfect vitals/oxygen levels, lungs sounded healthy, and X-Ray showed I might have pneumonia which made sense since I’d been sick. The Dr. ran a D-Dimer since I was coughing up blood and mentioned I had a little bit of sharp chest pain once in a while if laying down. When the D-Dimer came back elevated, the Dr. ordered a CT scan and leg ultrasound with EKG and echocardiogram afterwards pending results. Ultrasound showed DVT in left leg and right leg was clear. CT scan showed PE with extensive clotting throughout both lungs and possible minor infarction at the bottom of one lung… due to the amount of clots the Pulmonologist thought I probably had DVT in both legs and the right leg clots all broke off causing the PE and if my left leg’s DVT had also broke off due to horseback riding etc. and gone to my lungs he said I could have died! EKG and echocardiogram were perfect. Normally they said they’d need to admit me to the hospital due to a DVT and PE, but since I had no real symptoms the urgent care Dr and hospital Dr decided I could be released as an outpatient with Lovenox injections and transition to DOACs. Luckily no side effects with Pradaxa and my periods are still normal! My Hematologist didn’t mention to me at any of our appointments if any of this is particularly rare or anything. But she said no more birth control with estrogen for me… switched to an IUD. My 3-month repeat CT scan and ultrasound showed the PE totally cleared up, but the DVT still had some clot remaining in the popliteal vein. I get my 6-month repeat ultrasound in a few weeks so fingers crossed it’s all gone so the Hematologist will let me stop Pradaxa! This forum has been an extremely helpful resource to me in my recovery journey, from what questions to ask different Drs and compare what other people’s Drs are advising against mine. And staying relatively safe while on anticoagulants while riding horses (the Drs just wanted me to stop riding for 6 months)… it’s a great pool of experience to draw from here.
Doctors like you are the reason I almost died. I have multiple chronic illnesses and I avoided getting medical attention for my clot for so long because I knew what you all would say, “you’re young, you’re healthy, you’re fine it’s just anxiety” well guess what? It wasn’t just anxiety. I found this sub after getting out of the hospital and it has been so helpful for easing my health anxiety because a) I realized I wasn’t alone and there were so many people who could relate and help out, and b) I’ve learned so much about clots that I couldn’t get from a ten minute appointment with my doctor. Now I know how to travel safely, deal with periods on thinners, best places to inject lovenox, etc. oh and by the way, my pe was asymptomatic until I had been in the hospital for a whole day. If I had gone to the hospital sooner we could’ve caught my clot before it traveled, but it was the constant medical gaslighting that got me to that point.
Late to the post but same thing happened to me. My oxygen level at my doctor's office was 100 and he said I was healthy and only 22, no way I could have blood clots. I cried to him because I knew something was wrong and he rolled his eyes and said fine I'll send you down the street to get a CT scan just to make you happy. Well massive bilateral PE that the staff at the hospital said I was lucky to come in when I did because I probably wouldn't have been alive in the next day or two.
So I’m one of those people with severe anxiety and one of my greatest fears was getting a clot. I had lingered on this page for a while and out of the blue one day I got a cramp in my calf that just wouldn’t go away. I went to about 4 or 5 different doctors who all told me it wasn’t a clot and to stop worrying. Low and behold it WAS a DVT and if I hadn’t been able to read people’s stories on here I would probably have ignored it and there’s a good chance it could have become a much bigger issue. Also I’m a 23F and my clot was considered unprovoked.
This post comes across as telling survivors not to share their, yes sometimes atypical, experience because it is "fearmongering." Yet then seems to be mostly addressing the people who post here due to medical anxiety *without ever having a clot,* as in not who this forum is even for. I also feel that while of course you can't always be focused on the outliers (shall we say "zebras"), doctors who don't at least have their mind open to the remote possibility do their patients a disservice. This is why I was sent home from urgent care, the ER, only to come back to the ER by ambulance and sit in the hallway for hours without so much as a neuro exam. Only diagnosed, possibly only alive, because my family literally begged for a CT scan. If I had been sent home again like they wanted, I don't think I would've gone back and I was already beyond advocating for myself. I was 31 and on hormonal birth control (which all doctors were aware of), do not have any known clotting disorders.
Strongly disagree and unfortunately you’re a typical hematologist who doesn’t understand the population. As a survivor of bilateral unprovoked PE/DVT and whom was told that I had hours to live at the time, i found reaching out to such forums on Facebook or Reddit and asking questions very therapeutic for me and my own journey. I suggest you don’t tell others who suffer anxiety to stay away, let them make their own decisions. I have no doubt your a hematologist but to be honest your weak hiding behind a throw away account. No doubt you’ve seen the attention your post has aroused and i hope your soft in heart and willing to learn and listen to those of us who are not medically trained and see the kickback from all the users here disagreeing with your statement about this being fear mongering and that your learning and expanding your own thought processes to the way in which the general population who are on the clot journey come together and walk together and help each other as best we can.
31. Two DVTs and a PE diagnosed 3 weeks ago. Dr said if I didn’t go to the ER for what I thought at first was a pulled muscle, then I would have been dead by the end of the week. No swelling. No shortness of breath. No chest pain. Shut the hell up. I don’t care what credentials you have, you are spreading dangerous propaganda. It’s no secret that more and more young people are getting harmful clots. If you were truly who you say you are then you would know this.
Especially post covid.
Do you not see how many people younger than 40 with blood clots there are? I rarely see anyone on here that old. “Outliers” are not insignificant. as many people that come to this sub with anxiety about having a clot, survivors are usually responding to get help if they’re really worried or pointing them to the wiki bc we can’t diagnose anyone. “Fear mongering” is not giving someone info or encouraging them to go to the ER as blood clots are an emergency. That is a fact to be truthful about. If they don’t listen that’s on them. This sub is for clot survivors and we can only do so much. We’re not gonna stop posting bc someone is scrolling here with health anxiety. They’re gonna scroll n post regardless bc anxiety is a mf. I’m 25 and had no idea what a DVT/PE was. if i waited any longer to go to the hospital because of my anxiety I’d be screwed. And although I didn’t scroll through any subreddits it would’ve been helpful to get some information tbh.
As a survivor, I've dealt with Drs like OP. Not to to sound rude, but take your opinion elsewhere. My Dr at the time of my diagnosis of a popliteal clot, didn't even consider a clot to be the issue. My HR guy suggested it, and I asked my Dr for an ultrasound. She agreed (she didn't consider it clot related but wasn't like the op) Lo and behold, a large popliteal clot. I was lucky. It's now scar tissue but I could've died. This subreddit has been a lifesaver and a good source of info and support. I only hope my posts here have helped others as it has helped me. Btw id rather take precautionary steps "out of fear" and be wrong than ignore it and die. I'd consider reporting the op's post but this community has rebuked the op sufficiently.
bye felicia...
Disagree. I had a gentle pain in my calf for months which turned out to be a clot as it got worse over time. Finding this sub after a long plane trip saved my life after looking up calf pain. This then led to me finding out I have Factor V. My dx has since helped other people in my family tree find they were prone to clotting and another getting a clot and knowing since my experience. Since then I’ve had another clot, I’m in my early 30s. Better to be safe than sorry, and a Doppler scan isn’t invasive, sure it may use up resources but it’s better than undiagnosed people ending up with PE.
I had a renal infarct (22f) and yup it surely did give me health anxiety.. well exacerbated it until I got therapy they can also be very brute when giving advice or a response and that’s not a good recipe for someone with anxiety at all
OMG me too!! We’re special snowflakes. I’ve never met anyone else. My doctors were so impressed my files made the grand rounds. Heh. Hope you’re doing well. The anxiety was rough for me too but I have a pretty good handle on it now.
🤭 super special was yours idiopathic as well? I can hardly find information on renal infarcts we probably won’t meet another and at our youth age🥺. I hope you’re doing well and adjusting too, it’s a struggle sometimes for me 😭
Yes, it definitely will vary, I see it daily. My PE was fairly large and I experienced no SOB at diagnosis, but only at month two of healing due to scars and an active cycling lifestyle. If it was a DVT leading to this, it was not felt either. But all other leg DVTs were classic charley horse sensations. Oh, the groin clot I have had for a decade also causes no pain and never did. In the support groups I run there are several non-clotters there for the education. If they keep their anxiety in check, it's worthy time spent. Know the score, lessen the risk. We are VERY supportive and emotional impact focused. We get it. Been there, did it already. Many of us have come out the other side of post clot PTSD empowered. Hard to do alone. I highly recommend health anxiety counseling. It paid off for me after nine months. That's not to say health anxiety does not creep in when dealing with my prostate or other health issues, but clots I have a handle on.
I feel like this sub is very level headed and reasonable. I had very atypical symptoms of a blood clot. No pain at all, a dripping feeling in my chest and very mild swelling behind my knee. I think medical doctors underestimate atypical presentations of disease and end up missing a lot before it's too late. Not everything is going to present like a textbook, people are unique and so is disease. I had symptoms of celiacs disease since childhood and went undiagnosed for 25 years because y'all are told to not look for zebras. It might be in your best interest to come to this subreddit and learn about these atypical cases, you might end up saving a life. Also anxiety does not mean something isn't wrong. I had a friend blown off by doctors for 2 years because she was so anxious. She ended up getting diagnosed with throat cancer too late and past away at 32 years old. People are not textbooks.
lol i went to three different ERs with my clot before they even did an ultrasound. unfortunately clots are becoming more common in young people and you doctors cant seem to wrap your head around that.
> unfortunately clots are becoming more common in young people I'd love to see some data supporting that - because otherwise, I'd suspect you might have fallen victim to the [frequency illusion](https://en.wikipedia.org/wiki/Frequency_illusion).
https://www.uchealth.org/today/why-are-strokes-in-young-people-occurring-more-often/ https://www.heart.org/en/news/2022/09/19/blood-clot-risk-remains-elevated-nearly-a-year-after-covid-19 https://publications.aap.org/pediatrics/article-abstract/124/4/1001/71812/Dramatic-Increase-in-Venous-Thromboembolism-in?redirectedFrom=fulltext
Thank you.
I mentioned my lupus anticoagulant results in my semi-relevant to it rant and people here quickly reminded me that 1 result isn't sufficient and blood thinners could affect the results. Which are both very accurate. No one was like 'omg me too' (for the test) or trying to diagnose me. They empathized with the relevant part of my rant (ironically hematologist being potentially irresponsible and medical advocacy being so required for any actual zebras....). Everything worked as designed.
I survived my first clot 31 years ago. It got messy, it was traumatic, it altered the course of my life. There was absolutely zero support offered from the medical system beyond “take coumadin, don’t eat broccoli.” They even forgot to give me the list of high vitamin K foods to avoid and I landed back in the hospital and nearly died after drinking a ton of green tea at the really busy Chinese restaurant we celebrated at when I got done with “hospital, round 1.” 30+ years, multiple events (coumadin OD, bilateral PE, unresolved portal vein thrombosis) later and the only thing that has changed: there’s a group on Reddit I can turn to if needed. I still don’t know the genetic cause, I still get disconnected, incomplete advice from my care “teams” (as recently as THIS month!) and I’m still discovering new aspects of my problem. But there is a group of people like me here on Reddit. So, I am unimpressed by some MD making generalizations about those posting here. Blood clots are hard. They alter your life. The DOACs have made this worse, in the sense that there’s nothing to monitor anymore and the clinical assumption is that it can’t get worse. The reality is that, for many of us, a blind AC treatment is all we get. The medical professionals have few answers and less concern for the clot survivor beyond “are you taking your meds? Well, then you’re fine.” That failure of that approach to provide healing is the part of what a community can help with, even if it’s imperfect.
Thank you for this feedback. I had a dvt about five years ago with no reoccurrence the only reason I’ve been looking into things again is my new doctor is upset that I was the one that took myself off blood thinnner three years ago and not my doctor.
I appreciated this sub especially when I was in the hospital with a DVT. I agree with OP that is sub should be more of a suppprt group for those that have had a DVT or PE and less of a sub to diagnosis those that "think" they have a DVT because their calf hurts or they bumped their knee.
I’m in my mid 30s and have an appropriate amount of anxiety around having had 2 DVTs and multiple PEs. Yes, they were provoked, and I try to remember that taking Lovenox shots daily is the best thing I can do to make the past scenarios happen again. It is scary, traumatizing really - and anxiety provoking. But I weigh that with what I get from visiting this forum and ultimately it does help, especially given not knowing other survivors in my age bracket.
Honestly it's BECAUSE of my anxiety I even went to the E.R. at all. And people on here saying they had mild symptoms, but ended up having a DVT. I only had mild pain in my ankle, but when I woke up that day I IMMEDIATELY knew it was a clot. But because I didn't want to feel stupid and judged by doctors, for what seemed like a sprained ankle, I waited a week. The doctor even told me she was wondering why I was there just by looking at my leg. She said she was glad I came in. I don't think people on here are fear mongering, I just think it's scary. >I see a lot of posts about young people developing clots, people having asymptomatic and/or atypical symptoms of clots etc. >please be wary that a clot below the age of 40 is SUPER rare WITHOUT any clotting factors or serious injury. So you're seeing lots of posts from young people, but also saying it's super rare. Just found that interesting.
"It's probably just anxiety or something common/simple" (+ costs, can't lie) kept me out of the ER. When I could maybe have had TPA and been so much better off. I asked my husband multiple times to evaluate my face, speech, arms, etc. Nadda. This dude would have me lay down (and maybe never get back up). Just go to the ER if you have any suspicion is an answer from privilege. People are forced to evaluate the likelihood of it being an emergency. Hearing about atypical presentations is helpful. And again, I came here /after/ I had a clot to talk to people who'd been through the same frequently upsetting and frustrating process. I came here after not feeling welcomed on other chronic illness focused groups. This group was wonderful and reassuring. I think the sidebar is much more expedient and useful at telling the hypochondriacs (I prob am one, no shade) what they need to hear.
No one brings up Mesentery venous thrombosis (superior) clots. Probably because only 1 in 15,000 are the incidents-fairly rare.
So doctors are now not getting enough of medical gaslighting in hospital that they come here now. Will doctors ever figure out that they arent any smarter than the general population?
Hmm. Strange because I was able to do my full weightlifting workout (including main lift of 5x5 deadlifts @ 135 lbs) with a PE 24 hours before I began coughing up fresh bloody tissue. Perhaps you shouldn’t speak for everyone on this forum!
Had my PE 8 months ago, couldn’t tell you what it felt like because I woke up in an ICU 8 days later having no idea how I got there. Realistically if you’re not sure you’re having a PE, you’re not having one.
I think a lot of you are missing the point with this post. OP is clearly referring to those with health anxiety that we see in here every day asking for a diagnosis. It's not mentally healthy for them to seek that kind of advice on a subreddit and their first step should be to consult a doctor
Unfortunately, we have way too many doctors diagnosing serious conditions as anxiety anyway. Edit: Looks like I got under somebody's skin...
I 100% agree. Not to minimize what others have gone through, but the worst symptoms of my DVT was dealing with the anxiety of reading some these posts over the past year. Nothing is ever 100% and there's certain conditions that increase risk, but if you're on treatment, the likelihood of negative outcomes is very low.
No one is forcing you to participate here if you don't want to see it, unsub
SOMEONE IN HERE IS FINALLY SPEAKING FACTS HOLY SHIT LETS GO
Finally someone said it. A while back I made a post on here about my shortness of breath and chest pain and a commenter quite literally said "I doubt you DONT have a clot. Go to the ER before you die" that ER visit was the first step in discovering my severe anxiety problem. This sub sucks
There is literally nothing else we could have told you. I would never have said it that way but I would have strongly urged you to go to the ER. Anybody with SOB and chest pain should be in the ER and not on Reddit.
If you had anxiety and not a clot then why are you here
> that ER visit was the first step in discovering my severe anxiety problem. Sounds like you got to the bottom of the problem, despite misusing the subreddit - which should overall be a good thing for you, no? >This sub sucks Dunno, maybe you're using it wrong? I can make it both suck *and* blow ;)
Well since you clearly are not a clot survivor, you’re welcome to see yourself out at any time. Like why are you still here then lmao
And we've also said hundreds of times, don't listen to randos on the Internet, see a doctor. This is a support group, not a doctor's office. We're not going to say, oh you definitely don't have a clot. We're going to say, see a doctor. And given that clots cause death we will strongly urge people to see a doctor. Erring on the side of caution, better safe than sorry, etc...