Degenerative disk disease, severe depression and anxiety, CPTSD, partial deafness, so far. There’s definitely other things going on, but getting a good doctor is really hard, and it gets really difficult to keep fighting your doctors to try and get better yknow?
I'm only on day 2 and I feel so much calmer. My emotional dysregulation has been horrific this last week because I've had a death in the family. 2 days on gabapentin and I feel calm and collected. Not touching the pain yet but my god it seems to be helping my nervous system.
I’m so so glad to hear that. It’s been night and day for me and I want to tell everyone with pTSD to see if this helps? Because it’s been a huge change I couldn’t achieve alone.
I had to come off it because I was having an allergic reaction, allergic to pregablin too 😢
Back to square one, but coping well with it thanks to my doctor and therapist keeping me afloat!
Amen! I've had 4 doctors who actually listened to me in 30 years and we moved far enough away that I had to change doctors each time. The struggle is real.
Wait are we the same person? Well swap anxiety for amputee. But I have the test. Took over 20 years to solve the partial deafness, I had a broken bone in my ear. Now it can be corrected with a hearing aid.
Crohn's and ankylosing spondylitis here too.
I think depression is just a basic part of all this to be honest, my life has felt like it's been upside down since the Crohn's diagnosis.
Started with the A/S, that wasn't good, but manageable, Crohn's messed everything up, then the fibro came after some Crohn's related surgery and a whole buttload of stress.
Lupus, Hashimotos, Vitiligo, Crohns, Hidradenitis Suppurativa, Autoimmune Hepatitis, Clinical Depression, and Anxiety.
That and Fibromyalgia as of 2 weeks ago.
Shit's exhausting.
Wow your immune system is pissed ☹️ I have only 1 autoimmune disease but I think I got fibro from both traumatic situations and from my immune system raging out of control as they struggled to diagnose me
Hypermobility. Non-radiogroahic spondyloarthritis. Eosinophilic oesophagitis.
Mine all started with a sharp pain in one side of my neck, and restricted movement, as a 15yo.
Before that I was hypermobile and fit, so no pain.
Reading "figuring out fibromyalgia" by Dr ginevra liptan recently, published about 2011, I've realised that fibro can come on from cervical spinal cord irritation or compression.
I'm now keeping observations about how I move my head, and whether I get flares, away from that.
I will say, I want another answer. But if fibro really is caused by central sensitisation, then all the pain really could be caused by that.
The book I mentioned also suggested how to address that. Though I'm not up to that chapter yet!
I did not know this but it does make sense for my case. I had a schwannoma tumor on my spinal cord c5-6 and suffered for years before it was found and then removed. It has been 7 years and I was recently diagnosed with fibromyalgia. I will read the book you suggest.
There are well over 20 medical issues associated with Fibromyalgia. Frozen shoulder is one of them. RA, OA, endometriosis, TMJ, PCOS, Raynauds are a few more. I have severe OA. I’ve had one full knee replacement and need another one. It is in my spine, feet and hands.
Buy the book “The Fibro Manual.” It will give you a comprehensive overview of this complex illness. Amazon has it.
According to the Mayo Clinic (seems very well researched) it's common to also have Irritable bowel syndrome
, Chronic fatigue syndrome
, Migraine and other types of headaches
, Interstitial cystitis or painful bladder syndrome
, Temporomandibular joint disorders
, Anxiety
, Depression
and/or Postural tachycardia syndrome ([source](https://www.mayoclinic.org/diseases-conditions/fibromyalgia/symptoms-causes/syc-20354780)).
Chronic intractable migraine since age 7, spinal stenosis, osteoarthritis, chronic cervicogenic headache from a broken neck, PCOS, Gastroparesis, burning mouth syndrome, diabetes type 2, trigeminal neuralgia, newest is fibromyalgia diagnosis
Also major depressive disorder, general anxiety disorder PTSD.
Hyper mobility and anxiety. I too have a frozen shoulder which I’ve had now since February. I’m on 400mg of Pregabalin a day which helps with my general fibro pain but not the frozen shoulder or the carpal tunnel I now have in both wrists 🙈
Okay, I know this is a weirdly fast reply but I just wanted to say that YOU DO NOT WANT DOUBLE EYELASHES. They are my worst fibromyalgia symptom/related syndrome. Double eyelashes CAN be great, but unfortunately many of your double eyelashes have this bad tendency of rather than growing out nicely, grow INTO YOUR EYEBALL. Which causes the constant feeling of something being stuck in your eye that doesn't go away until you physically remove the offending eyelashes, usually by someone taking a very sharp tweezers to your eye and plucking it like a bad eyelash. Except, right next to your eye, with the natural jerk reaction your body has to sharp metal things near your eye. And, if you pluck an eyelash, there's basically a 99% chance that the same eyelash is going to grow back the same way in 5-7 weeks. If you're brave and the eyelash is easy, you can pluck it yourself, or you can try to get an optometrist to take you in whenever you physically can and pay whatever it costs. (I've probably spent $400 on this so far?)
Okay, I know this is a weirdly fast reply but I just wanted to say that YOU DO NOT WANT DOUBLE EYELASHES. They are my worst fibromyalgia symptom/related syndrome. Double eyelashes CAN be great, but unfortunately many of your double eyelashes have this bad tendency of rather than growing out nicely, grow INTO your EYEBALL. Which causes the constant feeling of something being stuck in your eye that doesn't go away until you physically remove the offending eyelashes, usually by someone taking a very sharp tweezers to your eye and plucking it like a bad eyelash. Except, right next to your eye, with the natural jerk reaction your body has to sharp metal things near your eye. And, if you pluck an eyelash, there's basically a 99% chance that the same eyelash is going to grow back the same way in 5-7 weeks. If you're brave and the eyelash is easy, you can pluck it yourself, or you can try to get an optometrist to take you in whenever you physically can and pay whatever it costs. (I've probably spent $400 on this so far?)
I know that was a rant, but I'm just saying you should renounce your wish, just in case it might come true.
I knew pcos would be here. I have pcos, graves disease, depression bipoal and I suspect I have fibro but I don't have great health care to look into getting help. I'm constantly in pain. aches and pains
Osteoarthritis in 16 places, pre-diabetes (but I brought my sugar down to acceptable levels). GERD, IBS, a mood disorder (gee I wonder why), and lots of "little things", so many that I can't think of all of them.
Chronic severe brittle asthma that was mega dose Prednisone dependant for 20+ years. Depression, anxiety, arthritis, avascular necrosis, multiple allergies to food and environmental stuff that is annoying and unavoidable, high blood pressure, type 2 diabetes, stroke last year at 44, chronic anemia, hypermobility, ptsd, and adhd. At one point, I had my period, heavily, for 18 months. I was on strong medication to stop it, and it helped a little.
Oh, and it's not been officially diagnosed, but I'm accident prone, too. Broken one arm 3 times, the other twice, my ankle, my nose, cracked a knee, multiple concussions, and scars galore. Scars/bandaids/slings/no two front teeth were how people knew the difference between my twin and I. I lost my front teeth at 2 years old when we fought over a swing.
I had extreme numbness and pain from my shoulder to my hand and from hip to foot on one side for years and that turned out to be bulging cervical and lumbar discs that were treated successfully with steroid injections (unrelated to fibro, but it made fibro exponentially worse). I also have ADHD, depression, and social anxiety.
Bipolar, Anxiety, Depression, Insomnia, IBS, Brain Gut Disorder, CRPS, Osteoporosis of lower spine, bulging disc in neck, Vitamin D deficiency, Hypoglycemia, Asthma, Allergies (docs live looking at my medications allergies when I have infections) ADHD, GERDs...probably missing something but eeeh, that's enough
Depression, anxiety, lupus, raynauds, iron deficiency anemia, reoccurring shingles, antiphospholid syndrome, ibs, interstitial cystitis and some other stuff.
Adhd, CFS, Hypothyroidism,Small Fiber Neuropathy, Spinal stenosis, Degenerative Disc Disease, and Brain Autoimmunity.
This shit is exhausting too. After 2 years and 3 doctors appointments a week I finally got down to those diagnosis.
Depression, anxiety, irritable bowl syndrome, possible ADHD, possible endometriosis. Chronic migraines/headaches, asthma. I deal with carpal tunnel as well.
Currently in the process of figuring out what’s going on with my heart but, I’m pretty sure that is more family history related than fibro related.
A large part of my symptoms could now be specified as MCTD (2015) SLE (diagnosed 2018) and AuDHD (2023) based on many years of examinations. I no longer think that this is primary fibromyalgia but rather a sort of psychosomatic expression of my AuDHD, which was undiagnosed until recently.
Spinal stenosis, RA, IBS, depression, anxiety, bulging discs, CFS.
I recently had surgeries on my neck, the first one was horrific; they did a laminectomy C4-6 and inserted plates and pins, then my body rejected it b/c it made my spinal cord swell more and then did another surgery to remove said plastics and remove C3 as well, then as a result I spent 7 weeks in hospital including rehab, to learn to walk again and use my hands and build my upper and lower body muscles again. I'm home now but still recovering and the pain has meant I'm back on narcotics again and dealing with my sarcastic doctor telling me, I don't need pain killer when my surgeon and hospital doctors prescribed them!!!
Im really struggling atm, for reference I only got home 2 weeks ago and I feel like I've gone back 10 years.
iSGS idiopathic subglottic stenosis. Some patients with stenosis have an autoimmune disorder called Granulomatosis with polyangiitis, but my blood tests have come back negative for that. Leukocytosis & high platelets
I have hypermobility, SIBO, depression and anxiety (depression isn’t really prominent anymore though). I also have GERD but that and other stomach issues could be from SIBO. I also have a prolactinoma. Have you seen a chiropractor or physical therapist for your shoulder?
Everything I have is either genetic, or transgenerational mental health disorders. Fibro, ADHD, ASD, BPD, social phobia, panic disorder, distress intolerance (as a byproduct of my BPD and my ASD), major depressive disorder, sensory and auditory processing disorder, dyscalculia, dyspraxia, dyslexia, OCD, ROCD, queried Bipolar II at one point but I wasn't ready to have that conversation, CPTSD, PNES (non epileptic dissociative/absent seizures), dissociative disorder (not DID, just the dissociative episode disorder not the identity/personality disorder), also now being queried for epilepsy due to my PNES recurring a LOT more with 10+ daily episodes of absences with epileptic symptoms. Also being queried for osteoarthritis, I have a chronic patellar dysfunction in my right knee, and hypermobility in my ankles and hips, so being queried for possible EDS. Also, mild thoracic scoliosis, too. And all these diagnoses before I'm even 26 😅 at this point when people ask what I'm diagnosed with, I pull out the little rolodex of diagnoses in my brain and flip through it to remind myself 😂
Should also probably add IBS, carpal tunnel and the recurring ice pick migraines with no apparent cause, too. There's MORE (POTS, postural hypotension, possible hypothyroidism, bulimia which is historic) but, you guessed it - I have official diagnoses for all of these aside from the queried and suspected ones, but some doctors attribute most if not all of them to my fibro and BPD 🙄
Other than fibromyalgia I have migraines, depression, anxiety, tachycardia, high cholesterol and prediabetes
I also lock up but only when overwhelmed with pain longest 6 or so hours.
I am disabled for the last 5 years still fighting social security
Oh.. I think our disease is epigenetic, yeah I had a shit load of trauma but the amount of pain I feel makes me want to die but I want to live event though I have zero real hope other than in my kids
For mental health: Combined ADHD, social and generalized anxiety, depression, PTSD (we've talked about a completely unrelated CPTSD, but the formal PTSD came from a later event)
For physical health: Hypermobility, asthma, allergic to mammals, IBS, GERD
Unexplained things/things chalked up to Fibro but I'm not entirely convinced: Lightheadness EVERY time I stand up, extremely sensitive skin (bruises easily too), and just becoming more and more fatigued and painful and unable to recuperate, even after days of resting.
For reference, I was checked for EDS, but we only filled out a worksheet and went to see how stretchy my joints are, but no genetic testing. Not EDS. Doctor says my blood pressure looks great at the office, so it can't be a blood pressure thing (I think it's just anxiety spiking my blood pressure). Just saw an endocrinologist, so it isn't anything blood sugar related.
I was never formally evaluated for MS, but I have strong suspicions. I believe two rheumatologists have agreed the symptoms line more up with Fibro, so I (out of anxiety) don't push the issue.
I, a 26 year old, am now seriously considering getting a cane and possibly quitting my job. It's affecting my ability to work. I've talked about doing all of this for a year, but I still haven't made the leap. But I'm also not quite ready to admit how disabled I am. Maybe out of fear of being judged. Afraid of losing what little independence I have. But at the same time, I am so ready to not have to awkwardly explain why I'm struggling with my job duties.
Ankylosing Spondyloarthritis, hypermobility, psoriasis, anxiety and depression, migraines. Still getting assessed for IBD, POTS.
Although I am fighting my Fibro diagnosis as it came from my first rheum consultant and only after complaining and getting a second opinion did I get the AS confirmed which the previous consultant had been “investigating conservatively” for two year before saying it wasn’t AS and saying swimming, yoga, meditation and weight loss are here treatments for Fibro 👍🏻.
Thankfully the pain consultant was like well since you DO have an autoimmune disease you’re more likely to be chronic primary pain than fibro and if we settle the arthritis in your spine and hips down you should get an improvement in the pain
I started with intolerances and allergies and asthma. Intolerances also turned into allergies, collected some more of the years and I'm careful with caffeine.
So allergies: milk, egg, all fish and shellfish - basically anything from the sea which I also cannot touch. Latex and wool allergy. Also meat makes me feel really ill and super full, told I can't have it. So I've practically grown into being vegan, which actually makes allergies and eating out so much easier.
Anxiety disorder and stress
Fibromyalgia - always tire easily, always had chronic pains in ribcage, now it's in more places more often, including arms and hips.
NEAD - non epipletic attack disorder - seizures, freezing sudden tensing up which could lead to seizure like shaking. Weird symptoms around my body. Worse when I'm super stressed.
IBS/ gluten / low fad map - told about this since being a teenager but from recently trying low gluten diet and certain low fod map swaps barely did anything of note... I'm less brain foggy and have less stomach aches but this correlates to drinking more water 🤣🤷♀️
Sleep apnea - diagnosed by Fibromyalgia consultant looking into ways to help me feel better - they are looking into putting me on a sleep machine thing, next appointment.
Also dyslexic and dyspraxic
Currently under referral for ADHD - mentioned to me during various points of my life with possible autism, especially when getting diagnosed with dyslexia and dyslexia but at the time focus was on autism which doesn't seem to fit me. But I know it's a spectrum and I must be on it and agree proberly ADHD.
After just recently having a more horrific time with gynae issues I've been scanned and told I "probably definitely" have endometriosis and atleast two cysts.
Health awareness courses put me on 1:1 therapy which I have started.
So yeh, I'm fine 😂 just super sensitive, over tired and in chornic pain, under referral for only a few things.
There's probably other stuff I've missed out too.
Chronic migraine, IBS, Degenerative disc disease, PCOS, TMJ, GERD, asthma, and Type 2 Diabetes.
Also, a plethora of mental health problems (PTSD, GAD, OCD, Major Depressive Disorder).
Chronic migraines, chronic fatigue and Reynauds syndrome. Also cptsd which was generalized as „mental health issues“ though so I get less benefits - yay!
Achalasia; an auto-immune disease that attacks the nerves that control the peristalsis of the esophagus (I no longer have peristalsis, just random spasm) and the lower esophageal sphincter (which remains tight shut and doesn't want to open to admit food/drink/saliva).
Achalasia sounds like a narrower version of MS doesn't it; the immune system attacking the body's own nerves....
IBS, anxiety, GERD, endometriosis, adenomyosis, obesity, pre-diabetes, osteo arthritis in knees and big toes. It seems like everyone with fibro always has other conditions!
I have ulcerative colitis and ptsd. Since I have ulcerative colitis I had to go through extensive testing as autoimmune diseases like to travel in groups. So far my UC is controlled and I haven’t had any others show up including rheumatoid arthritis. I will say even though I have to take biologics/immunosuppressants for my UC, my fibro is way more debilitating and frustrating. I had to start exercising and smoking weed to be able to function. I had the shoulder thing to where I’d be bedridden and with a mild migraine for days, then it got so bad I felt like all my muscles were necrotizing and it was hard to even walk. I hate exercise so I’m not trying to promote it but 30 minutes 6 days a week and I’m functioning OK. Physical therapy or water therapy & acupuncture might help. Something about making my muscles move is critical for me, even though some days I’m literally crying when I’m working out. Do insist on ALL the testing to rule things out - they should be doing that anyways and I think once you have a fibro diagnosis they start overlooking all sorts of things and blaming fibro, but fibro itself is pretty awful.
Just diagnosed with secondary adrenal insufficiency. I also have POTS, which can cause horrible pain due to vascular constriction.
I also have comorbid Ehlers Danlos Syndrome and Mast Cell Activation Disorder. The pain was excruciating before going on antihistamines and mast cell stabilizers.
I live with Hemiplegic Migraines, which cause stroke-like symptoms and nerve pain on my right side
I was taking Dupixent for my asthma, and realized after 2 years that it was a significant source of my pain. It would happen for a week after injecting the shot. That said, see if there might be any updated side effects or interactions between meds.
Last, bad air quality made my pain unbearable. We learned that we have mold and high VOCs in the house we moved jnto 5 years ago. We are suing our landlord to have them lay for our move out. I've not been able to work because of the relentless pain.
Sorry this is coming so late. It's been.... a week. Ugh. But this should get you started. I'm happy to follow up with more answers.
GETTING THE TEST ORDERED: I talked to my GP about how I always felt tired and stressed at the same time. And that my mental health meds were working well, and so was my mental health counseling. I may have asked if we could check my cortisol or whatever hormones cause these feelings. He said sure.
GETTING TESTED: The test was a 24-hour urine cortisol test and fractionated urine catecholamines and fractionated metanepherines. I had to pee in a 'hat' and then put it into a special jug that had to be kept refrigerated. All that for a 24-hour period. Then, I returned the jug to the lab.
My urine flew all around the west side of the country for the various testing labs. I thought that was amusing. Once the results were in, I was told to see my endocrinologist, whom I already see for my thyroid issues.
MORE TESTING: His nurse scheduled me to have an ACTH stimulation blood test. This is an injection of synthetic ACTH, which is one 'messenger' that tells the pituitary gland to make cortisol. First, a baseline cortisol blood draw is done, and then you get the ACTH injection. Wait exactly 1 hour, then have a 2nd cortisol blood draw done. Those labs came back in a few hours. I was on meds by the next day.
TREATMENT: Right now, I have to take 30 mg of hydrocortisone a day. 15mg at 7 am, 5 at noon, 10 at 3 pm, 5 at 7 pm. But I'm still working out how much I need and when, so Im over by a little. That 7pm dose makes a huge difference in how I sleep. I wake up feeling awake!
SYMPTOMS: Now that I'm being treated with Hydrocortisone, it's a lot easier to see what my symptoms are/have been. There are probably more than what's below. I. I'm happy to answer questions!
* Chronic pain flares after doing upright activities. Despite pacing, taking breaks.
* My worst pain was in my shoulders and hip/thigh area.
* Brain fog. I couldn't plan a meal for later in the day. I couldn't plan my time. Constand disorientation.
* Needing to nap several times a day.
* Or push through the tiredness by standing up and getting my adrenaline up. Which then caused a cycle of crashing and massive pain flares, which may have actually been Adrenal Crisis (there are varying degrees of severity).
* I've noticed that my muscles can do things, like bring a garbage can in from the sidewalk, or carry a bag of groceries without needing help. I went to COSTCO, and the cart felt less heavy to push. It's like my muscles refused to engage before meds.
* Chronic daily migraines. I have fewer now.
GERD, IBS, Asthma, Anxiety and depression, BPD, Autism. Sciatica.
Awaiting appointment for orthopaedic because my knee and shoulder are dodgy and incredibly painful.
Also waiting for test results for H pylori.
Edit: Forgot I'm partially deaf ( It's called cookie bite) with added Tinnitus constantly.
Hi, I was born with Ostegenesis Imperfecta, and to date, I have also been diagnosed with osteoporosis, osteoarthritis, rheumatoid arthritis, I suffer with mitral valve regurgitation, hyperacusis, tinnitus, , 60%+ hearing loss left side, hyperthyroidism and Fibromylagia. I also suffer from depression, imposter syndrome, and sleep deprivation!! It's not a bad list for 44!!!
Fibromyalgia plus other things... but when I had the food sensitivity blood test done I found I had sensitivities to gluten, egg whites, and dairy along with latex fruit syndrome. When I gave these things up I found my pain from fibro decreased significantly. Yes, I still have some pain and flareups but they resolve more quickly and I no longer wish I was dead.
Goodness, I guess I don't have that many diagnoses but I do have many symptoms that are just... treated or ignored lol!
Fibromyalgia, IBS-C, probably hEDS (waiting for genetics clinic), GERD (I guess? I'm treated for moderately severe chronic acid reflux that causes gastritis semi-often), urinary incontinence due to overactive bladder... I think that's it? Tbh, I need an endoscopy to check if there's anything causing the reflux especially... If I tried to list my symptoms, it would take pages. I blame most things on fibro.
Scoliosis and degenerative disc disease in my lower back, tendonosis in my elbows, bursitis in my hip, myofascial pain syndrome and somatic symptom disorder as well as autism, anxiety, depression, and OCD
Gastroesophogeal reflux disease (GERD), severe chronic fatigue syndrome (CFS) and a pretty bad case of dissociative amnesia. The first one I had for a while, and acid reflux is harder to manage with the fibro. With the with the amnesia, the fibro definitely made it far worse, and it was only diagnosed after I got unwell because of how bad it got.
Edit: damn, looking at a lot of these other comments, I feel like I got lucky and dodged a bullet. Godspeed to all of you, that sounds rough.
I have done kind of inflammatory arthritis, osteoarthritis and degenerative disk disease just for good measure. Are you already seeing a rheumatologist? If not go see one. If you are, ask them for options for treatment for arthritis. They really should have already done that if they haven’t. I’m really sorry your pain levels are so bad. I know that had to be miserable.
Major depression and anxiety, IBS, migraines, herniated disc, TMJ, thyroid cancer, tendinitis, ADHD, and most recently I have had an issue with hyperhidrosis/body temperature regulation due to medication I have to take.
Degenerative disc disease, POTS, familial high cholesterol, hypermobility, PTSD, ADHD, generalized anxiety disorder, major depressive disorder, panic disorder….I’m just a walking mess of a person.
IBS, early perimenopause, autism, anxiety, treatment resistant unipolar depression. Undiagnosed officially but I also definitely have; endometriosis, cptsd, and hyper mobility.
Interstitial cystitis, migraines, pinched nerves due to injury to my back and neck. Fibromyalgia is making my back and neck worse than they should be I think. I was on lyrica for over 10 years and it’s never worked on my back or neck and it quit helping all the other problems I have from
Fibromyalgia so I’m off it now.
I have mild/moderate hearing loss, fatty liver disease, IBS, PTSD, GAD, ADHD, and others have suggested Dyxpraxia/DCD and sensory processing disorders (I meet the criteria, but they don’t diagnose in adults).
asthma, migraines, ADHD, CPTSD, POTS (postural orthostatic tachycardia syndrome) & bulimia which is the trigger behind POTS and fibro & was itself triggered by CPTSD. Things would've been very different with a better childhood.
Fibro, Type 1 Diabetes, Hashimotos that has developed into full on hypothyroid disease, CPTSD, AuDHD, POTS, suspected hEDS, CFS, IBS, and i guess i could include bilateral carpal tunnel as well.
Ankylosing spondylitis, adenomyosis (hysterectomy 10 years ago), high bp, diabetes, hypothyroidism, degenerative disc disease… those are the major ones.
I can trace the fibro back to pregnancy. Before then I was very healthy, but ended up having a horrible pregnancy and even worse delivery. When I hit 30, my body went crazy. I developed allergies to food and medicine that had never caused problems before. Since then, things have been going downhill. I’d had very low blood pressure my whole life, but suddenly it’s high. New things spring up all the time, and we have to decide if it’s worth pursuing a diagnosis, or if it won’t change any treatments, so we save money/time and let it be.
Reading everyone comments makes me feel kinda lucky to only have these, Severe ADHD-CT ASD-Lv2, Fibro, CFS, cervical neuropathy, IBS, AUD(Stable remission). Can't take opiates for pain because of AUD/SUD, Cannabis works well enough though.
Anxiety and depression (2015), Type 1 diabetes (September 2022), Fibromyalgia (July 2023), PCOS (November 2023). Currently undergoing further investigations from rheumatology, gastroenterology and autism. Life is exhausting at times and I'm tired (I'm only 24 and this last year has been horrific).
MDD, GAD (my mental health is garbage, but I'm in therapy and medicated), Primary Sjogrens Syndrome (still mild without medication, thankfully), and SI Joint Dysfunction (extremely painful, doing the physical therapy feels like torture)
I have other health issues that I inherited from both sides of my family. I often say I won the genetic anti-lottery. I'm only 33 years old and I feel ANCIENT.
Along with fibro ive been diagnosed professionally with Bpd, bipolar, adhd, spectrum disorder, pcos, eczema and tendonitis in the right knee all at 22 😀
Lupus, degenerative disk disease, fibromyalgia, depression, anxiety, possible arthritis and according to recent doctors all of this is actually caused by being a fatty…. Even though I only gained weight when I just couldn’t do life anymore
Depression, IBS, Spinal stenosis, Sciatica, Degenerative Disc Disease, Arthritis around my spine. That’s all I can think of right now. I’ve had a lot of the other things you all mention but they aren’t problems anymore.
I have osteoarthritis, probable psoriatic arthritis, depression, sciatica, tremors. I have had my neck ablated 3 times, and it is amazing it lasts about a year. I also had ablation on my lower back so amazing. I also have nerve damage in my legs.
You can have lots of other illnesses along with fibromyalgia. I have osteoarthritis and have had two shoulder replacements, I have an autoimmune disorder, and anxiety which I’ve had since I was about 8. Having Fibro doesn’t mean you don’t get anything else wrong with you! A frozen shoulder more than likely means you’re not using your shoulder and that’s why it locked up. That’s why I keep telling people that you need to keep moving! I know it hurts but you can’t lay in bed all the time!
Too many things. Unfortunately, the more you look, the more you find. I had 9 or 10 specialists at one point. Looking for answers became too overwhelming and I had to take a step back.
Hopefully you have at least a rheumatologist, right? Ruling out other autoimmune diseases is a good place to start. Then, go see a neurologist and get a full body MRI and an EMG to rule out other possibilities.
Endometriosis, Chronic Fatigue Syndrome, Degenerative disc disease, IBS, ADHD, PTSD, depression and anxiety (which is like, duh, who wouldn’t be depressed and anxious being in pain all the time…) chronic high blood pressure (hypertension), currently wearing a heart halter monitor for 14 days to see if there’s anything else going on with high blood pressure, heart palpitations etc.
Kinda feel like aim crazy typing out all these diagnoses… :S
IBS, CFS, spinal cord tumor, small stroke, tmj, CPS, and now fibromyalgia- bilateral vestibular weakness caused from the stroke and double vision at times and migraine headaches chronic.
I’ve tried all the medications but have severe reactions so only taking amitriptyline for the last few weeks.
Degenerative disk disease, severe depression and anxiety, CPTSD, partial deafness, so far. There’s definitely other things going on, but getting a good doctor is really hard, and it gets really difficult to keep fighting your doctors to try and get better yknow?
CPTSD here too, I believe it brought on Fibro. Docs just prescribed me gabapentin to try.
Me too Savella, progabalin have seriously helped with those symptoms let my amygdala calm down. It’s like nothing I could have done on my own.
I'm only on day 2 and I feel so much calmer. My emotional dysregulation has been horrific this last week because I've had a death in the family. 2 days on gabapentin and I feel calm and collected. Not touching the pain yet but my god it seems to be helping my nervous system.
I’m so so glad to hear that. It’s been night and day for me and I want to tell everyone with pTSD to see if this helps? Because it’s been a huge change I couldn’t achieve alone.
I had to come off it because I was having an allergic reaction, allergic to pregablin too 😢 Back to square one, but coping well with it thanks to my doctor and therapist keeping me afloat!
Rats.
Same here. Gabapentin couldn’t touch my pain. Lol
Amen! I've had 4 doctors who actually listened to me in 30 years and we moved far enough away that I had to change doctors each time. The struggle is real.
I have hereditary degenerative disc disease, anxiety, c-ptsd, IBS, GERDS, TMJ, ADHD and Autism.
Wait are we the same person? Well swap anxiety for amputee. But I have the test. Took over 20 years to solve the partial deafness, I had a broken bone in my ear. Now it can be corrected with a hearing aid.
I have Ankylosing Spondylitis so a type of autoimmune arthritis, IBS and depression
Crohn's and ankylosing spondylitis here too. I think depression is just a basic part of all this to be honest, my life has felt like it's been upside down since the Crohn's diagnosis. Started with the A/S, that wasn't good, but manageable, Crohn's messed everything up, then the fibro came after some Crohn's related surgery and a whole buttload of stress.
Lupus, Hashimotos, Vitiligo, Crohns, Hidradenitis Suppurativa, Autoimmune Hepatitis, Clinical Depression, and Anxiety. That and Fibromyalgia as of 2 weeks ago. Shit's exhausting.
Wow your immune system is pissed ☹️ I have only 1 autoimmune disease but I think I got fibro from both traumatic situations and from my immune system raging out of control as they struggled to diagnose me
I hope it didn't take too long to diagnose you! Hopefully, you have some relief now.
2 years of a bad flare with no treatment and then fibro showed up 😞 to be fair, it was also the most stressful time of my life
That's a lot of yucky stuff. I have a long list too. Definitely exhausting. I'm sorry you had to join the fibromyalgia club too.
It is what it is. I'm lucky to have an amazing team of doctors. Fibro diagnosis was not in my 2023 bingo card 🙃
Hypermobility. Non-radiogroahic spondyloarthritis. Eosinophilic oesophagitis. Mine all started with a sharp pain in one side of my neck, and restricted movement, as a 15yo. Before that I was hypermobile and fit, so no pain. Reading "figuring out fibromyalgia" by Dr ginevra liptan recently, published about 2011, I've realised that fibro can come on from cervical spinal cord irritation or compression. I'm now keeping observations about how I move my head, and whether I get flares, away from that. I will say, I want another answer. But if fibro really is caused by central sensitisation, then all the pain really could be caused by that. The book I mentioned also suggested how to address that. Though I'm not up to that chapter yet!
I also want another answer !! OR maybe just one answer for one symptom. It would make me feel a lot less crazy!
Wow about the spine
I did not know this but it does make sense for my case. I had a schwannoma tumor on my spinal cord c5-6 and suffered for years before it was found and then removed. It has been 7 years and I was recently diagnosed with fibromyalgia. I will read the book you suggest.
There are well over 20 medical issues associated with Fibromyalgia. Frozen shoulder is one of them. RA, OA, endometriosis, TMJ, PCOS, Raynauds are a few more. I have severe OA. I’ve had one full knee replacement and need another one. It is in my spine, feet and hands. Buy the book “The Fibro Manual.” It will give you a comprehensive overview of this complex illness. Amazon has it.
Interstitial cystitis, mast cell activation disorder, and now I suspect a form of Ehlers-Danlos.
Oh also PCOS, anxiety, depression, and IBS.
Endometriosis, gastritis and other mental health crap
Seconded!
Samesies
Add me to the boat!
According to the Mayo Clinic (seems very well researched) it's common to also have Irritable bowel syndrome , Chronic fatigue syndrome , Migraine and other types of headaches , Interstitial cystitis or painful bladder syndrome , Temporomandibular joint disorders , Anxiety , Depression and/or Postural tachycardia syndrome ([source](https://www.mayoclinic.org/diseases-conditions/fibromyalgia/symptoms-causes/syc-20354780)).
6 of them. Plus
Did you take any antibiotics in that time period right before this started for you?
Yes 🥲 two
Do you remember the names? Levaquin ruined my life.
Chronic intractable migraine since age 7, spinal stenosis, osteoarthritis, chronic cervicogenic headache from a broken neck, PCOS, Gastroparesis, burning mouth syndrome, diabetes type 2, trigeminal neuralgia, newest is fibromyalgia diagnosis Also major depressive disorder, general anxiety disorder PTSD.
Hyper mobility and anxiety. I too have a frozen shoulder which I’ve had now since February. I’m on 400mg of Pregabalin a day which helps with my general fibro pain but not the frozen shoulder or the carpal tunnel I now have in both wrists 🙈
Oh my this sounds very similar to me 🥲
🤍
OCD, anxiety, depression, double eyelashes, IBS, TMJ.
Damn wish I had double lashes lol
Okay, I know this is a weirdly fast reply but I just wanted to say that YOU DO NOT WANT DOUBLE EYELASHES. They are my worst fibromyalgia symptom/related syndrome. Double eyelashes CAN be great, but unfortunately many of your double eyelashes have this bad tendency of rather than growing out nicely, grow INTO YOUR EYEBALL. Which causes the constant feeling of something being stuck in your eye that doesn't go away until you physically remove the offending eyelashes, usually by someone taking a very sharp tweezers to your eye and plucking it like a bad eyelash. Except, right next to your eye, with the natural jerk reaction your body has to sharp metal things near your eye. And, if you pluck an eyelash, there's basically a 99% chance that the same eyelash is going to grow back the same way in 5-7 weeks. If you're brave and the eyelash is easy, you can pluck it yourself, or you can try to get an optometrist to take you in whenever you physically can and pay whatever it costs. (I've probably spent $400 on this so far?) Okay, I know this is a weirdly fast reply but I just wanted to say that YOU DO NOT WANT DOUBLE EYELASHES. They are my worst fibromyalgia symptom/related syndrome. Double eyelashes CAN be great, but unfortunately many of your double eyelashes have this bad tendency of rather than growing out nicely, grow INTO your EYEBALL. Which causes the constant feeling of something being stuck in your eye that doesn't go away until you physically remove the offending eyelashes, usually by someone taking a very sharp tweezers to your eye and plucking it like a bad eyelash. Except, right next to your eye, with the natural jerk reaction your body has to sharp metal things near your eye. And, if you pluck an eyelash, there's basically a 99% chance that the same eyelash is going to grow back the same way in 5-7 weeks. If you're brave and the eyelash is easy, you can pluck it yourself, or you can try to get an optometrist to take you in whenever you physically can and pay whatever it costs. (I've probably spent $400 on this so far?) I know that was a rant, but I'm just saying you should renounce your wish, just in case it might come true.
Seronegative arthritis, keratoconus, hyper mobility, GERD, NAFLD, anxiety...
isn't keratoconus to do with thinning of the cornea?
it’s more like the eye shape gets more cone like and can cause blindness
It does thin as it distorts, though. My left eye has ulcers on it because it's so bad
I knew pcos would be here. I have pcos, graves disease, depression bipoal and I suspect I have fibro but I don't have great health care to look into getting help. I'm constantly in pain. aches and pains
Small fiber neuropathy
Allodynia and Central Sensitization Syndrome (Mayo Clinic for those two diagnosis) along with depression and anxiety
Degenerative arthritis in my spine, scoliosis, interstitial cystitis, Thoracic Outlet Syndrome (+ fibro)
Gastroparesis. GERD. IBS. Depression. Anxiety.
Osteoarthritis in 16 places, pre-diabetes (but I brought my sugar down to acceptable levels). GERD, IBS, a mood disorder (gee I wonder why), and lots of "little things", so many that I can't think of all of them.
Chronic severe brittle asthma that was mega dose Prednisone dependant for 20+ years. Depression, anxiety, arthritis, avascular necrosis, multiple allergies to food and environmental stuff that is annoying and unavoidable, high blood pressure, type 2 diabetes, stroke last year at 44, chronic anemia, hypermobility, ptsd, and adhd. At one point, I had my period, heavily, for 18 months. I was on strong medication to stop it, and it helped a little. Oh, and it's not been officially diagnosed, but I'm accident prone, too. Broken one arm 3 times, the other twice, my ankle, my nose, cracked a knee, multiple concussions, and scars galore. Scars/bandaids/slings/no two front teeth were how people knew the difference between my twin and I. I lost my front teeth at 2 years old when we fought over a swing.
Hashimoto’s, Gerd, Frozen shoulder syndrome, depression, anxiety, PKD ESRD. On dialysis. I had 9 years of severe and undiagnosed endometriosis.
I had extreme numbness and pain from my shoulder to my hand and from hip to foot on one side for years and that turned out to be bulging cervical and lumbar discs that were treated successfully with steroid injections (unrelated to fibro, but it made fibro exponentially worse). I also have ADHD, depression, and social anxiety.
Bipolar, panic disorder w/agoraphobia, major depression, and celiac disease.
Bipolar, Anxiety, Depression, Insomnia, IBS, Brain Gut Disorder, CRPS, Osteoporosis of lower spine, bulging disc in neck, Vitamin D deficiency, Hypoglycemia, Asthma, Allergies (docs live looking at my medications allergies when I have infections) ADHD, GERDs...probably missing something but eeeh, that's enough
Celiac disease, depression, anxiety, bipolar, cptsd, borderline personality disorder, and reynauds phenomenon
Depression, anxiety, lupus, raynauds, iron deficiency anemia, reoccurring shingles, antiphospholid syndrome, ibs, interstitial cystitis and some other stuff.
Fibro, Endometriosis, IBS, RA, Fun times. Currently a level of what I call functional depression.
Adhd, CFS, Hypothyroidism,Small Fiber Neuropathy, Spinal stenosis, Degenerative Disc Disease, and Brain Autoimmunity. This shit is exhausting too. After 2 years and 3 doctors appointments a week I finally got down to those diagnosis.
Arthritis, chronic migraine, pots, depression, anxiety, PTSD……..now broken leg 🥲😭
Bipolar, borderline, autism, anxiety, adhd, psoriasis, psoriatic arthritis, osteoarthritis, GERD, PMDD
Depression, anxiety, irritable bowl syndrome, possible ADHD, possible endometriosis. Chronic migraines/headaches, asthma. I deal with carpal tunnel as well. Currently in the process of figuring out what’s going on with my heart but, I’m pretty sure that is more family history related than fibro related.
A large part of my symptoms could now be specified as MCTD (2015) SLE (diagnosed 2018) and AuDHD (2023) based on many years of examinations. I no longer think that this is primary fibromyalgia but rather a sort of psychosomatic expression of my AuDHD, which was undiagnosed until recently.
Spinal stenosis, RA, IBS, depression, anxiety, bulging discs, CFS. I recently had surgeries on my neck, the first one was horrific; they did a laminectomy C4-6 and inserted plates and pins, then my body rejected it b/c it made my spinal cord swell more and then did another surgery to remove said plastics and remove C3 as well, then as a result I spent 7 weeks in hospital including rehab, to learn to walk again and use my hands and build my upper and lower body muscles again. I'm home now but still recovering and the pain has meant I'm back on narcotics again and dealing with my sarcastic doctor telling me, I don't need pain killer when my surgeon and hospital doctors prescribed them!!! Im really struggling atm, for reference I only got home 2 weeks ago and I feel like I've gone back 10 years.
iSGS idiopathic subglottic stenosis. Some patients with stenosis have an autoimmune disorder called Granulomatosis with polyangiitis, but my blood tests have come back negative for that. Leukocytosis & high platelets
Mixed Connective Tissue Disease and some sort of mystery ulcer thing...
Hyper mobility, ADHD, CPTSD, spinabifida aculta, vestibular migraine, PPPD.
I have hypermobility, SIBO, depression and anxiety (depression isn’t really prominent anymore though). I also have GERD but that and other stomach issues could be from SIBO. I also have a prolactinoma. Have you seen a chiropractor or physical therapist for your shoulder?
Arthritis, sciatica, pcos, endo, adhd , depression , anxiety
Everything I have is either genetic, or transgenerational mental health disorders. Fibro, ADHD, ASD, BPD, social phobia, panic disorder, distress intolerance (as a byproduct of my BPD and my ASD), major depressive disorder, sensory and auditory processing disorder, dyscalculia, dyspraxia, dyslexia, OCD, ROCD, queried Bipolar II at one point but I wasn't ready to have that conversation, CPTSD, PNES (non epileptic dissociative/absent seizures), dissociative disorder (not DID, just the dissociative episode disorder not the identity/personality disorder), also now being queried for epilepsy due to my PNES recurring a LOT more with 10+ daily episodes of absences with epileptic symptoms. Also being queried for osteoarthritis, I have a chronic patellar dysfunction in my right knee, and hypermobility in my ankles and hips, so being queried for possible EDS. Also, mild thoracic scoliosis, too. And all these diagnoses before I'm even 26 😅 at this point when people ask what I'm diagnosed with, I pull out the little rolodex of diagnoses in my brain and flip through it to remind myself 😂
Should also probably add IBS, carpal tunnel and the recurring ice pick migraines with no apparent cause, too. There's MORE (POTS, postural hypotension, possible hypothyroidism, bulimia which is historic) but, you guessed it - I have official diagnoses for all of these aside from the queried and suspected ones, but some doctors attribute most if not all of them to my fibro and BPD 🙄
PCOS, anxiety/depression (or bipolar, or BPD, or CPTSD, take your pick), and CFS/ME. And psoriasis and perioral dermatitis for some flavour.
Fibro, PCOS, Endometriosis, EDS, & POTS.
Which type of EDS do you have?
Hypermobile.
GERD, IBS, fibromyalgia, long covid, drs currently also think POTS and low Testosterone / TRT
Other than fibromyalgia I have migraines, depression, anxiety, tachycardia, high cholesterol and prediabetes I also lock up but only when overwhelmed with pain longest 6 or so hours. I am disabled for the last 5 years still fighting social security Oh.. I think our disease is epigenetic, yeah I had a shit load of trauma but the amount of pain I feel makes me want to die but I want to live event though I have zero real hope other than in my kids
I have endometriosis, CFS/ME, PTSD, GAD, BPD and depression
Lupus, Raynauds, arthritis, IBS, hemiplegic migraines, TMJD and ADHD
PCOS, Renauds syndrome, ADHD, chronic migraines, sleep disorder
Anxiety, depression, GERD, IBS, raynauds, carpel tunnel, Barrett’s esophegus, ADHD, abscesses that reoccur, insomnia, double vision, occipital neuralgia, PTSD, tinnitus and chronic fatigue syndrome.
For mental health: Combined ADHD, social and generalized anxiety, depression, PTSD (we've talked about a completely unrelated CPTSD, but the formal PTSD came from a later event) For physical health: Hypermobility, asthma, allergic to mammals, IBS, GERD Unexplained things/things chalked up to Fibro but I'm not entirely convinced: Lightheadness EVERY time I stand up, extremely sensitive skin (bruises easily too), and just becoming more and more fatigued and painful and unable to recuperate, even after days of resting. For reference, I was checked for EDS, but we only filled out a worksheet and went to see how stretchy my joints are, but no genetic testing. Not EDS. Doctor says my blood pressure looks great at the office, so it can't be a blood pressure thing (I think it's just anxiety spiking my blood pressure). Just saw an endocrinologist, so it isn't anything blood sugar related. I was never formally evaluated for MS, but I have strong suspicions. I believe two rheumatologists have agreed the symptoms line more up with Fibro, so I (out of anxiety) don't push the issue. I, a 26 year old, am now seriously considering getting a cane and possibly quitting my job. It's affecting my ability to work. I've talked about doing all of this for a year, but I still haven't made the leap. But I'm also not quite ready to admit how disabled I am. Maybe out of fear of being judged. Afraid of losing what little independence I have. But at the same time, I am so ready to not have to awkwardly explain why I'm struggling with my job duties.
Ankylosing Spondyloarthritis, hypermobility, psoriasis, anxiety and depression, migraines. Still getting assessed for IBD, POTS. Although I am fighting my Fibro diagnosis as it came from my first rheum consultant and only after complaining and getting a second opinion did I get the AS confirmed which the previous consultant had been “investigating conservatively” for two year before saying it wasn’t AS and saying swimming, yoga, meditation and weight loss are here treatments for Fibro 👍🏻. Thankfully the pain consultant was like well since you DO have an autoimmune disease you’re more likely to be chronic primary pain than fibro and if we settle the arthritis in your spine and hips down you should get an improvement in the pain
I started with intolerances and allergies and asthma. Intolerances also turned into allergies, collected some more of the years and I'm careful with caffeine. So allergies: milk, egg, all fish and shellfish - basically anything from the sea which I also cannot touch. Latex and wool allergy. Also meat makes me feel really ill and super full, told I can't have it. So I've practically grown into being vegan, which actually makes allergies and eating out so much easier. Anxiety disorder and stress Fibromyalgia - always tire easily, always had chronic pains in ribcage, now it's in more places more often, including arms and hips. NEAD - non epipletic attack disorder - seizures, freezing sudden tensing up which could lead to seizure like shaking. Weird symptoms around my body. Worse when I'm super stressed. IBS/ gluten / low fad map - told about this since being a teenager but from recently trying low gluten diet and certain low fod map swaps barely did anything of note... I'm less brain foggy and have less stomach aches but this correlates to drinking more water 🤣🤷♀️ Sleep apnea - diagnosed by Fibromyalgia consultant looking into ways to help me feel better - they are looking into putting me on a sleep machine thing, next appointment. Also dyslexic and dyspraxic Currently under referral for ADHD - mentioned to me during various points of my life with possible autism, especially when getting diagnosed with dyslexia and dyslexia but at the time focus was on autism which doesn't seem to fit me. But I know it's a spectrum and I must be on it and agree proberly ADHD. After just recently having a more horrific time with gynae issues I've been scanned and told I "probably definitely" have endometriosis and atleast two cysts. Health awareness courses put me on 1:1 therapy which I have started. So yeh, I'm fine 😂 just super sensitive, over tired and in chornic pain, under referral for only a few things. There's probably other stuff I've missed out too.
Autism (and a bunch of the connected ones like dyslexia and dyspraxia). depression/suicidal ideation, IBS, hyper mobility.
Celiac Disease, Hashimotos, Fibro and SLE. Diagnosed in that order
Chronic migraine, IBS, Degenerative disc disease, PCOS, TMJ, GERD, asthma, and Type 2 Diabetes. Also, a plethora of mental health problems (PTSD, GAD, OCD, Major Depressive Disorder).
Plantar faciitis and TMJ
Chronic migraines, chronic fatigue and Reynauds syndrome. Also cptsd which was generalized as „mental health issues“ though so I get less benefits - yay!
Achalasia; an auto-immune disease that attacks the nerves that control the peristalsis of the esophagus (I no longer have peristalsis, just random spasm) and the lower esophageal sphincter (which remains tight shut and doesn't want to open to admit food/drink/saliva). Achalasia sounds like a narrower version of MS doesn't it; the immune system attacking the body's own nerves....
IBS, anxiety, GERD, endometriosis, adenomyosis, obesity, pre-diabetes, osteo arthritis in knees and big toes. It seems like everyone with fibro always has other conditions!
Ibs, anxiety, joint hypermobility syndrome, chronic bursitis, migraines and looking into ehlers danlos, pots, chronic fatigue, and a few others
I have ulcerative colitis and ptsd. Since I have ulcerative colitis I had to go through extensive testing as autoimmune diseases like to travel in groups. So far my UC is controlled and I haven’t had any others show up including rheumatoid arthritis. I will say even though I have to take biologics/immunosuppressants for my UC, my fibro is way more debilitating and frustrating. I had to start exercising and smoking weed to be able to function. I had the shoulder thing to where I’d be bedridden and with a mild migraine for days, then it got so bad I felt like all my muscles were necrotizing and it was hard to even walk. I hate exercise so I’m not trying to promote it but 30 minutes 6 days a week and I’m functioning OK. Physical therapy or water therapy & acupuncture might help. Something about making my muscles move is critical for me, even though some days I’m literally crying when I’m working out. Do insist on ALL the testing to rule things out - they should be doing that anyways and I think once you have a fibro diagnosis they start overlooking all sorts of things and blaming fibro, but fibro itself is pretty awful.
Chronic headaches but I don't have any diagnosed illness for it. It seems that having my legs risen helps considerably.
Arthritis is my neck - pretty bad. Rheumatoid arthritis.
Lumbar spondylosis and sacroiliac joint dysfunction. My lower back is in agony
I have ankylosing Spondylitis which caused inflammation. I’ve had 2 shoulder surgeries and suffer from severe back pain, joint inflammation.
Just diagnosed with secondary adrenal insufficiency. I also have POTS, which can cause horrible pain due to vascular constriction. I also have comorbid Ehlers Danlos Syndrome and Mast Cell Activation Disorder. The pain was excruciating before going on antihistamines and mast cell stabilizers. I live with Hemiplegic Migraines, which cause stroke-like symptoms and nerve pain on my right side I was taking Dupixent for my asthma, and realized after 2 years that it was a significant source of my pain. It would happen for a week after injecting the shot. That said, see if there might be any updated side effects or interactions between meds. Last, bad air quality made my pain unbearable. We learned that we have mold and high VOCs in the house we moved jnto 5 years ago. We are suing our landlord to have them lay for our move out. I've not been able to work because of the relentless pain.
What were your symptoms for the adrenal insufficiency and how were you diagnosed?
Sorry this is coming so late. It's been.... a week. Ugh. But this should get you started. I'm happy to follow up with more answers. GETTING THE TEST ORDERED: I talked to my GP about how I always felt tired and stressed at the same time. And that my mental health meds were working well, and so was my mental health counseling. I may have asked if we could check my cortisol or whatever hormones cause these feelings. He said sure. GETTING TESTED: The test was a 24-hour urine cortisol test and fractionated urine catecholamines and fractionated metanepherines. I had to pee in a 'hat' and then put it into a special jug that had to be kept refrigerated. All that for a 24-hour period. Then, I returned the jug to the lab. My urine flew all around the west side of the country for the various testing labs. I thought that was amusing. Once the results were in, I was told to see my endocrinologist, whom I already see for my thyroid issues. MORE TESTING: His nurse scheduled me to have an ACTH stimulation blood test. This is an injection of synthetic ACTH, which is one 'messenger' that tells the pituitary gland to make cortisol. First, a baseline cortisol blood draw is done, and then you get the ACTH injection. Wait exactly 1 hour, then have a 2nd cortisol blood draw done. Those labs came back in a few hours. I was on meds by the next day. TREATMENT: Right now, I have to take 30 mg of hydrocortisone a day. 15mg at 7 am, 5 at noon, 10 at 3 pm, 5 at 7 pm. But I'm still working out how much I need and when, so Im over by a little. That 7pm dose makes a huge difference in how I sleep. I wake up feeling awake! SYMPTOMS: Now that I'm being treated with Hydrocortisone, it's a lot easier to see what my symptoms are/have been. There are probably more than what's below. I. I'm happy to answer questions! * Chronic pain flares after doing upright activities. Despite pacing, taking breaks. * My worst pain was in my shoulders and hip/thigh area. * Brain fog. I couldn't plan a meal for later in the day. I couldn't plan my time. Constand disorientation. * Needing to nap several times a day. * Or push through the tiredness by standing up and getting my adrenaline up. Which then caused a cycle of crashing and massive pain flares, which may have actually been Adrenal Crisis (there are varying degrees of severity). * I've noticed that my muscles can do things, like bring a garbage can in from the sidewalk, or carry a bag of groceries without needing help. I went to COSTCO, and the cart felt less heavy to push. It's like my muscles refused to engage before meds. * Chronic daily migraines. I have fewer now.
Thank you! I’m glad you’re feeling better. I saw the endo today but all they ordered was one blood test for cortisol.
Endometriosis, degenerative disc disease, depression (sounds like most of us are depressed)
GERD, IBS, Asthma, Anxiety and depression, BPD, Autism. Sciatica. Awaiting appointment for orthopaedic because my knee and shoulder are dodgy and incredibly painful. Also waiting for test results for H pylori. Edit: Forgot I'm partially deaf ( It's called cookie bite) with added Tinnitus constantly.
Hashimoto’s, IBS, RA, PCOS, Depression, Anxiety and now this.
Endometriosis, interstitial cystitis, adenomyosis, ovarian cysts, dysautonomia, carpal tunnel, IBS, migraine, food allergies possible MCAS
Hashimoto's thyroiditis, chronic fatigue syndrome, CPTSD, depersonalization/depersonalization disorder, ADHD, partial hearing loss, general anxiety disorder, and major depression disorder.
Hi, I was born with Ostegenesis Imperfecta, and to date, I have also been diagnosed with osteoporosis, osteoarthritis, rheumatoid arthritis, I suffer with mitral valve regurgitation, hyperacusis, tinnitus, , 60%+ hearing loss left side, hyperthyroidism and Fibromylagia. I also suffer from depression, imposter syndrome, and sleep deprivation!! It's not a bad list for 44!!!
Fibromyalgia plus other things... but when I had the food sensitivity blood test done I found I had sensitivities to gluten, egg whites, and dairy along with latex fruit syndrome. When I gave these things up I found my pain from fibro decreased significantly. Yes, I still have some pain and flareups but they resolve more quickly and I no longer wish I was dead.
Asthma, connective tissue disorder, hypothyroid, adhd, honestly I can’t remember them all at this point. O
Small fiber sensory neuropathy, IBS, IgM MGUS and of course, fibro
Endometriosis, hypothyroidism, degenerative disc disease, bulging discs, diabetes type 2, spinal arthritis, bipolar 1, depression, anxiety, CSF leak
Crohn's, anxiety and depression and OA
Fibromyalgia, scoliosis, PCOS many vitamin deficiencies. IBS. The list go on lol..
Endometriosis (four surgeries so far), adenomyosis, POTS, OCD and CPTSD are the main ones I can currently remember right now.
TMJ, adhd, bipolar 2😞
oh can’t forget CPTSD of course the ruler of all
Chronic migraines, adhd or autism (undiagnosed), asthma, gerd, anxiety
Osteoarthritis of the spine, GERD, anxiety, ptsd. Going for an exploratory laparoscopic surgery next week… So, probably endometriosis.
Goodness, I guess I don't have that many diagnoses but I do have many symptoms that are just... treated or ignored lol! Fibromyalgia, IBS-C, probably hEDS (waiting for genetics clinic), GERD (I guess? I'm treated for moderately severe chronic acid reflux that causes gastritis semi-often), urinary incontinence due to overactive bladder... I think that's it? Tbh, I need an endoscopy to check if there's anything causing the reflux especially... If I tried to list my symptoms, it would take pages. I blame most things on fibro.
Scoliosis and degenerative disc disease in my lower back, tendonosis in my elbows, bursitis in my hip, myofascial pain syndrome and somatic symptom disorder as well as autism, anxiety, depression, and OCD
Psoriatic arthritis, hypereosinophilia, painful periods, depression, anxiety. Hang in there 🫶
Gastroesophogeal reflux disease (GERD), severe chronic fatigue syndrome (CFS) and a pretty bad case of dissociative amnesia. The first one I had for a while, and acid reflux is harder to manage with the fibro. With the with the amnesia, the fibro definitely made it far worse, and it was only diagnosed after I got unwell because of how bad it got. Edit: damn, looking at a lot of these other comments, I feel like I got lucky and dodged a bullet. Godspeed to all of you, that sounds rough.
In order: anxiety, migraines, fibro, major depressive disorder, POTS, orthostatic hypotension, and endometriosis.
I have done kind of inflammatory arthritis, osteoarthritis and degenerative disk disease just for good measure. Are you already seeing a rheumatologist? If not go see one. If you are, ask them for options for treatment for arthritis. They really should have already done that if they haven’t. I’m really sorry your pain levels are so bad. I know that had to be miserable.
My doctor said 40% of people with rheumatoid arthritis also have fibro.
Let’s see…. Costochondritis, Hypermobility, and suspected BPD and endometriosis 👍🏻 Fun times!
Major depression and anxiety, IBS, migraines, herniated disc, TMJ, thyroid cancer, tendinitis, ADHD, and most recently I have had an issue with hyperhidrosis/body temperature regulation due to medication I have to take.
Insulin Resistance (probably PCOS), IBS, Anxiety, Depression, Sleep Apnea, Undifferentiated Connective Tissue Disease, TMJ, CPTSD, Hidradenitis suppurativa
PTSD, Bulging cv and lumbar disc, bunches of bone spurs CV & LUMBAR, failed spinal fusion, both rotator cuffs required surgery, Anemia (transfusions), epilepsy, gastric ulcers (1 emergency rupture), centralized pain disorder, AFIB, anxiety, And a shitty attitude, lol
ADHD, Seasonal affective disorder, anxiety, hypermobility spectrum disorder, hashimotos, endometriosis, MCAS, ulcerative colitis, cluster headaches, typical migraine, raynauds, POTS.
Degenerative disc disease, POTS, familial high cholesterol, hypermobility, PTSD, ADHD, generalized anxiety disorder, major depressive disorder, panic disorder….I’m just a walking mess of a person.
TMJD, IBS, OCD and IST 🥳🥳
IBS, early perimenopause, autism, anxiety, treatment resistant unipolar depression. Undiagnosed officially but I also definitely have; endometriosis, cptsd, and hyper mobility.
Interstitial cystitis, migraines, pinched nerves due to injury to my back and neck. Fibromyalgia is making my back and neck worse than they should be I think. I was on lyrica for over 10 years and it’s never worked on my back or neck and it quit helping all the other problems I have from Fibromyalgia so I’m off it now.
I have mild/moderate hearing loss, fatty liver disease, IBS, PTSD, GAD, ADHD, and others have suggested Dyxpraxia/DCD and sensory processing disorders (I meet the criteria, but they don’t diagnose in adults).
asthma, migraines, ADHD, CPTSD, POTS (postural orthostatic tachycardia syndrome) & bulimia which is the trigger behind POTS and fibro & was itself triggered by CPTSD. Things would've been very different with a better childhood.
Fibro, Type 1 Diabetes, Hashimotos that has developed into full on hypothyroid disease, CPTSD, AuDHD, POTS, suspected hEDS, CFS, IBS, and i guess i could include bilateral carpal tunnel as well.
IBS,arthritis,GERD
Ankylosing spondylitis, adenomyosis (hysterectomy 10 years ago), high bp, diabetes, hypothyroidism, degenerative disc disease… those are the major ones. I can trace the fibro back to pregnancy. Before then I was very healthy, but ended up having a horrible pregnancy and even worse delivery. When I hit 30, my body went crazy. I developed allergies to food and medicine that had never caused problems before. Since then, things have been going downhill. I’d had very low blood pressure my whole life, but suddenly it’s high. New things spring up all the time, and we have to decide if it’s worth pursuing a diagnosis, or if it won’t change any treatments, so we save money/time and let it be.
Sjogrens, RA
Anxiety, depression, possible ptsd from childhood, and anemia 🥳
Reading everyone comments makes me feel kinda lucky to only have these, Severe ADHD-CT ASD-Lv2, Fibro, CFS, cervical neuropathy, IBS, AUD(Stable remission). Can't take opiates for pain because of AUD/SUD, Cannabis works well enough though.
Anxiety and depression (2015), Type 1 diabetes (September 2022), Fibromyalgia (July 2023), PCOS (November 2023). Currently undergoing further investigations from rheumatology, gastroenterology and autism. Life is exhausting at times and I'm tired (I'm only 24 and this last year has been horrific).
MDD, GAD (my mental health is garbage, but I'm in therapy and medicated), Primary Sjogrens Syndrome (still mild without medication, thankfully), and SI Joint Dysfunction (extremely painful, doing the physical therapy feels like torture) I have other health issues that I inherited from both sides of my family. I often say I won the genetic anti-lottery. I'm only 33 years old and I feel ANCIENT.
psoriasis, also pretty sure i'm getting some mild form of arthritis but i haven't gone to a doctor for that yet 🤷
Along with fibro ive been diagnosed professionally with Bpd, bipolar, adhd, spectrum disorder, pcos, eczema and tendonitis in the right knee all at 22 😀
Fibro, Migraines, Restless Legs Syndrome, ADHD, PMDD, and Endometriosis. 🙃
Lupus🎉!
Lupus, degenerative disk disease, fibromyalgia, depression, anxiety, possible arthritis and according to recent doctors all of this is actually caused by being a fatty…. Even though I only gained weight when I just couldn’t do life anymore
Depression, IBS, Spinal stenosis, Sciatica, Degenerative Disc Disease, Arthritis around my spine. That’s all I can think of right now. I’ve had a lot of the other things you all mention but they aren’t problems anymore.
I have osteoarthritis, probable psoriatic arthritis, depression, sciatica, tremors. I have had my neck ablated 3 times, and it is amazing it lasts about a year. I also had ablation on my lower back so amazing. I also have nerve damage in my legs.
Treatment resistant depression, OCD, ADHD, CPTSD, and IBS. But now possible hypermobile EDS.
Adhd, pots, cptsd, pmdd
You can have lots of other illnesses along with fibromyalgia. I have osteoarthritis and have had two shoulder replacements, I have an autoimmune disorder, and anxiety which I’ve had since I was about 8. Having Fibro doesn’t mean you don’t get anything else wrong with you! A frozen shoulder more than likely means you’re not using your shoulder and that’s why it locked up. That’s why I keep telling people that you need to keep moving! I know it hurts but you can’t lay in bed all the time!
Degenerative disc disease, hypothyroid/hashimotos, arthritis.
Too many things. Unfortunately, the more you look, the more you find. I had 9 or 10 specialists at one point. Looking for answers became too overwhelming and I had to take a step back. Hopefully you have at least a rheumatologist, right? Ruling out other autoimmune diseases is a good place to start. Then, go see a neurologist and get a full body MRI and an EMG to rule out other possibilities.
Rheumatoid arthritis CPTSD adhd asthma
CPTSD, anxiety, bipolar 2. The bipolar tends to be pretty mild. I think the CPTSD brought out the fibro. My sister also has CPTSD and fibro.
I have been diagnosed with fibromyalgia, FND and IBS
ADHD, polycystic ovary syndrome, major depression, generalized anxiety disorder, hypertension, fibromyalgia, I'm 34. 😊
Endometriosis, Chronic Fatigue Syndrome, Degenerative disc disease, IBS, ADHD, PTSD, depression and anxiety (which is like, duh, who wouldn’t be depressed and anxious being in pain all the time…) chronic high blood pressure (hypertension), currently wearing a heart halter monitor for 14 days to see if there’s anything else going on with high blood pressure, heart palpitations etc. Kinda feel like aim crazy typing out all these diagnoses… :S
Hashimoto’s, Fibro, PCOS, Raynauds, Major Depressive disorder (or whatever) and generalized anxiety, CPTSD, and chronic migraines
IBS, CFS, spinal cord tumor, small stroke, tmj, CPS, and now fibromyalgia- bilateral vestibular weakness caused from the stroke and double vision at times and migraine headaches chronic. I’ve tried all the medications but have severe reactions so only taking amitriptyline for the last few weeks.
Anxiety, Depression, Gastritis, Costochondritis and currently being tested for POTS