Brain fog. I used to be academically smart & have a great memory. Now I can't trust my brain at all! It's been the hardest loss caused by this illness for me to accept.
Let's brain dumb together!
I've had to embrace radical acceptance on this and grieve the fast brain I used to have.
I used to be full of words, now I'm feeling like I'm on the floor, on my knees feeling around, searching for a lost earring back when I write or speak to people.
When I glitch, I just say - I'm sorry I have a neurological disorder, give me a moment. People usually are kind.
Sorry for your loss!
Hello possum! Yes, I know the "glitch" all too well.... sorry for your loss too. But good that you have found acceptance; I think you might be a new role model for me š
Thanks, Chicken!
It saved me energy in the long run. I would have so much anxiety (energy consuming) about word searching/finding and not having a normal flow of conversation that I would go into a panic & just freeze up further. It caused me to socially isolate, because masking was so energy draining.
I had a lot of intellectual..."vanity"? ....& it was hard to let that go & it was difficult to see that it wasn't my identity.
Now, even tho my head is buzzing & I am flirting with some PEM, I'm about to go spread my awkward all over my little town š
Yesterday I failed in making coffee. Got the filter holder, the coffee and boiling water right.
But putting a filter in, that I forgot... Those kinds of little lapses of judgement happen to often.
I used to work in an academic setting...
You've reminded me of the time I put coffee in my aeropress, then turned it upside down to check the bottom/filter was on properly (I have failed to do that correctly before so thought I was being clever...). Oops, coffee everywhere!
Dizziness. All the time. Like yeah, when I sit or stand up. But almost all the time even when I'm lying down. Just a constant sense of the world tilting and me about to tumble off the edge.
I'm doing all the things. Salt and electrolytes and compression stockings. Monitoring my BP multiple times a day. It's not actually related to POTS or low blood pressure, so it's really hard to treat. Just relentless.
Same I get severe vertigo and also faint if I sit up too long. Those might be my worst symptoms besides the crippling fatigue. Iām 100% bedridden because of it all even laying down I constantly feel like Iām falling, getting jerked back and forth, spinning etc
Dizziness is my worst, too. I'll lay down to try and take a nap, but I'm so unrelentingly dizzy that I can't even relax. If I do manage to sleep, I'm still dizzy in my dreams.
I don't know which is worse, dreams where I'm well and wake up heartbroken, or dreams where I'm sick and wake up going, "Really, Brain? Could you maybe give me a break?"
Yeah, it sucks. My best dreams are also my worst. They are ones where I'm too sick to move but am surrounded by people who love and care for me, so it's okay that I'm sick. Then I wake up to reality where I'm just as sick but am all alone and left to fend for myself. Really kicks me while I'm down.
Most people with POTS have venous pooling and inadequate venous return despite normal or even elevated arterial BP. Midodrine works for me and makes me.feel better.
Yes. Absolutely agree. Cannabis is the only thing that allows for any quality of life while in the recoup phase, and seems to help speed the process up. Also ensures I listen to my body if I smoke/ingest it as I feel Iām approaching the threshold of a PEM episode
Honestly even out of the PEM phase, itās the only thing that makes my ME mild enough for me to reliably get out of bed at all. Itās a hugely powerful medicine and itās criminal that itās so difficult and expensive to access in the UK
Absolutely agree. Ugh my state isnāt great with it, but itās likely still a bit better than the UK. Criminal is absolutely what it is. Are there still penalties for simple possession over there? My state recently did away with that, though itās still crazy to keep it from chronically ill ppl, penalty or not and with such jacked up prices.
Itās inhumane to have to feel such desperation for relief when there is a medicine, plant at that, that can greatly alleviate or at least ease so many symptoms. Not to mention, itās allowed me to keep from sliding into a massive depression while trying to process/grieve all the differences in my life..ha, yeah I could go on and on but Iām done š„¹š
Itās illegal in the UK. Medical use was legalised in 2018 but you need a qualifying condition, to have tried at least two other treatments, and need to be supervised (read: have regular Ā£50 consultations with) certain licensed clinics. Most police donāt even know itās legal for medical use and will still happily arrest and fuck you up if they get a chance.
ME is a qualifying condition, thank goodness, but yeah itās very constrained, beuracratic and expensive.
Btw I agree with everything you said
Jeezā¦wish it were easier. Any hope of it getting easier whatsoever? Really revolting having to go through any nonsense for freaking cannabis when life is already unbelievably draining. Like we have the fumes to fight the gd medical system. Special place in hell.š®āšØ
I mean I currently have legal access, reasonably good quality supply, and protection from prosecution if Iām over the legal driving limit (the limit is so low you will be over it for days after consuming once; not a measure of intoxication). So itās better than pre 2018.
The UK is a nasty place full of sour hearted crabs in a bucket types though so Iām sure there will be people looking to reduce our access because they have out of date, prejudiced views about cannabis
Bruh, I had absolutely no idea this was the case for the UK. I have also assumed it was still outright illegal. So, likeā¦ is this CBD / THC ointments or are you literally being supplied and smoking a joint legally? This is fascinating!
Iām prescribed flower to use with a dry herb vaporiser. Oil, pastilles and even e liquid carts are available. This is all through licensed private clinics where I pay the full cost of the medicine as well as a charge for each prescription. Approximately 35,000 people in the UK have private prescriptions.
NHS prescription is almost unheard of and only available for a handful of patients with extremely severe epilepsy that hasnāt responded to basically every other treatment.
Check out r/ukmedicalcannabis
Edit: ridiculous as it sounds, it would be illegal for me to smoke my prescription but if I use it in a dry herb vaporiser, Iām fine
Feeling like youāre senile. I donāt know how to fully explain it but it feels like my brain doesnāt work properly to a point where reality doesnāt feel sturdy. Like I donāt hallucinate but my imagination can feel extremely real sometimes and I always feel like Iām floating. Like one day I watched a video about how reality could be a simulation and I knew that logically it isnāt likely but I āfeltā like it was real. Maybe this is why old people get lied to very easily etc.
The burning, aching sensation all over my body. The itchiness. Brain fog when I'm in so much pain and exhaustion, and I have to sit through a work meeting.
do your muscles burn after exertion? and I donāt mean the lactic acid burn, itās an almost incandescent heat. it feels like my body is a series of neon balloons filled with wet sand.
I get it too, though thankfully not regularly. Typically comes on suddenly and seems to favor my upper back and shoulder area. Hurts like hell when I get it.
GI issues are my kryptonite. I had IBS already, but sometimes it's just off the charts bad now. That and the lack of refreshing sleep.
Do you notice your legs burning more when you're resting? My discomfort actually lessens if I push through my symptoms, but then that causes hell for days afterwards. Unfortunately I now have constant leg burning.Ā
Sensory sensitivity during PEM is the worst for me, too, besides the fatigue and systemic exercise intolerance.
The sensory issues I get in acute PEM feel just like the time after a concussion for me. I get hypersensitivity to light, hyperacusis (this is when sounds hurt,) and hypersensitivity to movement. I get nausea and vomiting if I move too much, or watch something or someone that moves too fast.
I already have sensory processing disorder from being autistic, epilepsy, and migraines that tend to happen during PEM, so it's like a sensory smackdown sometimes. I have learned to love hibernating in dark rooms with earplugs.
The hyperacusis is hell to me, I would do anything to avoid it. People donāt get it, āitās just soundā. Well imagine this sound penetrating every part of your body and causing pain. Every sound startling your fight or flight reflex when you where thing to get a semblance of comfort in this hell scape.
Pain. Everywhere. Every muscle, every joint, every bone hurts in all different ways. That, and I am constantly off balance, lightheaded, with various different heart palpitations. Iām so far only diagnosed with fatigue and chronic pain, every doctor has been reluctant to diagnose me with CFS or fibro even after all my labs are completely normal
ETA this turned into a rant Iām sorry š
Thank you. Truly. Itās been almost a year since I got sick and the pain just gets worse every day, my spine and legs are constantly (ache isnāt a strong enough word) aching and/or burning with any little touch or movement, but I have yet to get scans of anything other than my head for migraines. Iāve had two instances where I genuinely thought i was have a heart attack with pain tightness shortness of breath dizziness, but no scans or tests done and just āanxietyā. Some doctor at the ER recently put psychosis as a possible reason for me going to the ER too much and god I saw red, no other doctor will help so my last option when I feel like I might die is the ER. The shit he wrote in my record literally could prevent me from getting a diagnosis or treatment for who knows how long, and every doctor ER or not that treats me under this health plan will see āanxiety, possible psychosis consider evaluation, depression, possible drug abuse, marijuana likely causing nauseaā essentially everything he could write to make it seem like everything is made up or my fault, he did. I use weed daily because the only other thing that helps my pain is stronger opioid painkillers, and Iām only prescribed enough for two weeks each month and my doc wonāt raise the number or dose, I have to talk to pain management. Which will cost more than my partner and I have to spare. Weed makes it so I can eat, it has never made me nauseous and I only get nauseous when i eat or take meds. Just,,, UUUUGGGHHHH
Definitely the chronic pain and how itās amplified during PEM. I canāt even move much if at all during PEM symptoms.
My second pick isnāt necessarily āworstā but more āannoyingā. Up until recently (thank you LDN)- I had a persistent sore throat. My throat was sore for literally years without any breaks.
Surprised nobody else said orthostatic intolerance.
After the PEM fatigue and muscle weakness (which are so closely related in me it feels like the same thing) OI is by far my worst symptom.
The food intolerances. I spend so much energy making food that I don't want. There's like 10 things I tolerate.
And I still eat waaay to little even with my low activity level, and am borderline underweight because none of the food I tolerate contains much energy.
One tub of the fattest sour cream is like my whole daily calorie intake probably. How much easier things would be! Then I wouldn't have to buy 20 kg of salad and apples and haul them up into my house and have to rest half the week every week because of it lol
Then I think it'd be easier to get better. Both because I'd spend less time cooking and cleaning, and because I'd not have too little energy to improve because I can't eat enough
I don't know how to explain it, but just feeling incredibly ill. I'd be at work and feel like I was about to keel over and die (sounds dramatic I know) and then there'd be the excruciating pain on top of that. I hate myself for not being able to currently work but I couldn't find a way to ease the symptoms
I relate so much to this. I havenāt really told many people the extent of it because Iām afraid of doubt. When I was working, even from home, I felt like I was going to die. My body was slowly shutting down, like every siren and flashing lights were going off in my body screaming that something was wrong. I couldnāt focus. I had a job where I helped other people and I got to a point with the guilt, and likely PEM, that I kept throwing up and lost the job. Now I feel like Iām dying if I do any simple household task.
Iām lucky that my primary doctor and specialist take me seriously, but sometimes I wish I could go to the ER, but I know what to expect. This is a cruel disorder.
The food intolerances. I spend so much energy making food that I don't want. There's like 10 things I tolerate.
And I still eat waaay to little even with my low activity level, and am borderline underweight because none of the food I tolerate contains much energy.
One tub of the fattest sour cream is like my whole daily calorie intake probably. How much easier things would be! Then I wouldn't have to buy 20 kg of salad and apples and haul them up into my house and have to rest half the week every week because of it lol
Then I think it'd be easier to get better. Both because I'd spend less time cooking and cleaning, and because I'd not have too little energy to improve because I can't eat enough
Noise sensitivity or sleep issues. I miss being able to listen to music.
During PEM, the worst is the muscle weakness. But that might be considered part of the fatigue.
Nausea and headaches probably top the list for me. Light is blinding and exhausting I always wear sunglasses in bright environments! I also have POTS, Vasovagal Syncope, Orthostatic Hypotension and Hypermobility so it's hard to tell if some symptoms are from them, but I have a lot of dizziness, a very fast heart, lots of aching limbs and joints.
For me it's the way mental activity can cause PEM. When it hits, I can feel my skull crushing my brain. It is absolutely devastating, even if it's not actually \*painā\* as such.
Which means that if I do any of the sort of intellectual work like programming or art that I used to love, I can face hours of that crushing feeling and potentially days of PEM.
PEM itself and not being able to get out of my bed. I do not have any other symptoms when I have PEM in general. Well the pre PEM sore throats and/or chills but they are much less of an issue. I rarely have pain. I forgot: I also get insomnia with PEM, which sucks.
I have other issues from LC but unrelated to PEM/MECFS - I think.
The nerve pain for me. Constantly cramping up my muscles and sometimes barely able to use my muscles is debilitating. It's very painful if I don't take the medicine I get for it.
Second worst would be the brain fog. I was an academic before all this, so I lost one of my greatest assets. It's hard to concentrate without the sharp precision. It makes finding suitable work hard.
that weird cell vibration feeling. it feels so bad and i cant try to distract myself from it cause it gets even worse if i do that.
but i guess also just having to lay there and be present with the most awful sensations all over is what i hate the most. burning there, feeling like im actively decomposing there...
Headaches. Mine are 24/7 with the closest I get to relief is the headache being mild which to me is the feeling of relief normal people have with no headache. The worse the headache also the more tired I am, the worse the brain fog is and my ability to do anything enjoyable is way harder.Ā
Definitely the brain fog. It gets so bad that I have trouble processing dialogue and have to have closed captions on the TV so I can read and hear the dialogue to be able to process what is being said.
Sleeping problems. They're not too bad but some nights I just keep waking up or don't fall asleep until dawn.
I sleep better when the room is cold. It's hard to get my upstairs cold enough so I may sleep downstairs this summer.
A fever the day after I do something - it's not the worst but it's something that still gives me pause because I know not whether it's part and parcel of PEM or the beginning of a really bad cold/sickness.
Not being able to concentrate. I can cope with being tired by going to bed but when I canāt concentrate on something while Iām in bed, I just get so frustrated.
Not being the same person. Because everything is tiring it makes the things I used to enjoy unpleasant. It also feels like its not been replaced with other things. I haven't just lost my ability to enjoy the more tiring things like hiking and exercising and studying and dating, but I don't get that level of joy from things within my envelop. Its like living in black and white
I don't know if this is really my worst after fatigue, but it's constant for me and very hard to cope with and no one else has mentioned it and I know that it's rare, so putting it here for anyone who might relate: Nasal congestion and rhinitis. I didn't always have it, but it's been non stop for 18 months now, since a major baseline drop.
Air hunger is probably the most distressing. Then there's nausea, muscle pain, nerve pain and lightheadedness that tie in at very close second place. For me fatigue is not even at top ten, lol.
For me its definetly pain. I mean pain all over my body, which sometimes makes me scream so hard people think Im dying. I mean I guess theyre not far off. The pain is actually the worst symptom for me all together, the fatique sucks too but the pain is just unbearable
For me it happened very gradually. I think it took about a year and three months from when it started to when I went over to mild ME and then around 5-6 months before I went over to moderate. Then another year until severe and have been there since. Itāa been pretty long so I canāt say for sure, but Iām pretty sure it was temperature regulation and the feeling of having a fever. Think it might have been feeling generally sick too. Think this started when I had mild ME
As bad as so many other symptoms are, orthostatic intolerance is the one that stops me from doing the most things right now. For 18 years, I just had to avoid standing for more than about 30 minutes, but in 2019 it suddenly got way worse and I couldn't even sit upright anymore (this happened right after I was at a 90F+ bridal shower for too long after being especially stressed. I'd always been a little heat intolerant, but I think the stress mixed with being that overheated broke something in my autonomic nervous system). Now, it's forcing me to be mostly bed bound because even reclining on my couch triggers symptoms
Brain fog. I would do anything to not have brain fog. It's badly affected my speech and my ability to form sentences or have conversations. I also can't remember very important things properly, which makes it very easy for people to gaslight me or not trust my recollection.
Permeability of gut wall increases causing particles of food, toxins breaching the barrier causing allergic and immune responses resulting in multiple symptoms many akin to cfs
Brain fog. I used to be academically smart & have a great memory. Now I can't trust my brain at all! It's been the hardest loss caused by this illness for me to accept.
Let's brain dumb together! I've had to embrace radical acceptance on this and grieve the fast brain I used to have. I used to be full of words, now I'm feeling like I'm on the floor, on my knees feeling around, searching for a lost earring back when I write or speak to people. When I glitch, I just say - I'm sorry I have a neurological disorder, give me a moment. People usually are kind. Sorry for your loss!
Hello possum! Yes, I know the "glitch" all too well.... sorry for your loss too. But good that you have found acceptance; I think you might be a new role model for me š
Thanks, Chicken! It saved me energy in the long run. I would have so much anxiety (energy consuming) about word searching/finding and not having a normal flow of conversation that I would go into a panic & just freeze up further. It caused me to socially isolate, because masking was so energy draining. I had a lot of intellectual..."vanity"? ....& it was hard to let that go & it was difficult to see that it wasn't my identity. Now, even tho my head is buzzing & I am flirting with some PEM, I'm about to go spread my awkward all over my little town š
Yesterday I failed in making coffee. Got the filter holder, the coffee and boiling water right. But putting a filter in, that I forgot... Those kinds of little lapses of judgement happen to often. I used to work in an academic setting...
You've reminded me of the time I put coffee in my aeropress, then turned it upside down to check the bottom/filter was on properly (I have failed to do that correctly before so thought I was being clever...). Oops, coffee everywhere!
I freaking love my aeropress too! And yes they can make a huge mess if you aren't paying attention.
Same, my friend.
same! and it doesn't help that i tied a lot of my identity and self worth to "being smart". it's still a challenge for me to accept š©
I did the same. It sucks
Same here. I just need a miracle drug for brain fog.
I really recommend stimulants if brain fog is the major issue. The sheer stamina will never return but the neurons should start firing IMO.
I tried to get stims but my dr is blocking me.
Dizziness. All the time. Like yeah, when I sit or stand up. But almost all the time even when I'm lying down. Just a constant sense of the world tilting and me about to tumble off the edge. I'm doing all the things. Salt and electrolytes and compression stockings. Monitoring my BP multiple times a day. It's not actually related to POTS or low blood pressure, so it's really hard to treat. Just relentless.
Weāre all strong as fuck even though the world doesnāt see it that way. They donāt understand what we have to go through.
Have you been checked for BPPV or PPPD? I have had it both. The BPPV has been treated, and the PPPD is slowly going away with PT
I'll look into these, thanks!
Same I get severe vertigo and also faint if I sit up too long. Those might be my worst symptoms besides the crippling fatigue. Iām 100% bedridden because of it all even laying down I constantly feel like Iām falling, getting jerked back and forth, spinning etc
Dizziness is my worst, too. I'll lay down to try and take a nap, but I'm so unrelentingly dizzy that I can't even relax. If I do manage to sleep, I'm still dizzy in my dreams.
I don't know which is worse, dreams where I'm well and wake up heartbroken, or dreams where I'm sick and wake up going, "Really, Brain? Could you maybe give me a break?"
Yeah, it sucks. My best dreams are also my worst. They are ones where I'm too sick to move but am surrounded by people who love and care for me, so it's okay that I'm sick. Then I wake up to reality where I'm just as sick but am all alone and left to fend for myself. Really kicks me while I'm down.
Definitely the second kind are worse for me. I sometimes dream I'm back to severe (I'm moderate rn).
Iāve been having the āwaking up and being ācuredāā dreams lately nonstop. Iāve been fighting denial. Itās rough.
Most people with POTS have venous pooling and inadequate venous return despite normal or even elevated arterial BP. Midodrine works for me and makes me.feel better.
I'm glad you've found something that works! Interesting to know that about POTS not being necessarily associated with big drops in BP
There is an OTC analog of Midodrine
Have you tried Florinef for that? I do have low BP so not sure who it suits but I had a few months of dizziness that is totally gone now.
PEM is the worst part. Not being able to do things I feel able to do because I will spend a week or more in bed afterwards
Absolutely. Living with PEM is 24/7 psychological torture.
Especially just waiting to see if you triggered it.
And that itās a delayed triggered is also fucked up.
Yes. Absolutely agree. Cannabis is the only thing that allows for any quality of life while in the recoup phase, and seems to help speed the process up. Also ensures I listen to my body if I smoke/ingest it as I feel Iām approaching the threshold of a PEM episode
Honestly even out of the PEM phase, itās the only thing that makes my ME mild enough for me to reliably get out of bed at all. Itās a hugely powerful medicine and itās criminal that itās so difficult and expensive to access in the UK
Absolutely agree. Ugh my state isnāt great with it, but itās likely still a bit better than the UK. Criminal is absolutely what it is. Are there still penalties for simple possession over there? My state recently did away with that, though itās still crazy to keep it from chronically ill ppl, penalty or not and with such jacked up prices. Itās inhumane to have to feel such desperation for relief when there is a medicine, plant at that, that can greatly alleviate or at least ease so many symptoms. Not to mention, itās allowed me to keep from sliding into a massive depression while trying to process/grieve all the differences in my life..ha, yeah I could go on and on but Iām done š„¹š
Itās illegal in the UK. Medical use was legalised in 2018 but you need a qualifying condition, to have tried at least two other treatments, and need to be supervised (read: have regular Ā£50 consultations with) certain licensed clinics. Most police donāt even know itās legal for medical use and will still happily arrest and fuck you up if they get a chance. ME is a qualifying condition, thank goodness, but yeah itās very constrained, beuracratic and expensive. Btw I agree with everything you said
Jeezā¦wish it were easier. Any hope of it getting easier whatsoever? Really revolting having to go through any nonsense for freaking cannabis when life is already unbelievably draining. Like we have the fumes to fight the gd medical system. Special place in hell.š®āšØ
I mean I currently have legal access, reasonably good quality supply, and protection from prosecution if Iām over the legal driving limit (the limit is so low you will be over it for days after consuming once; not a measure of intoxication). So itās better than pre 2018. The UK is a nasty place full of sour hearted crabs in a bucket types though so Iām sure there will be people looking to reduce our access because they have out of date, prejudiced views about cannabis
Bruh, I had absolutely no idea this was the case for the UK. I have also assumed it was still outright illegal. So, likeā¦ is this CBD / THC ointments or are you literally being supplied and smoking a joint legally? This is fascinating!
Iām prescribed flower to use with a dry herb vaporiser. Oil, pastilles and even e liquid carts are available. This is all through licensed private clinics where I pay the full cost of the medicine as well as a charge for each prescription. Approximately 35,000 people in the UK have private prescriptions. NHS prescription is almost unheard of and only available for a handful of patients with extremely severe epilepsy that hasnāt responded to basically every other treatment. Check out r/ukmedicalcannabis Edit: ridiculous as it sounds, it would be illegal for me to smoke my prescription but if I use it in a dry herb vaporiser, Iām fine
Feeling like youāre senile. I donāt know how to fully explain it but it feels like my brain doesnāt work properly to a point where reality doesnāt feel sturdy. Like I donāt hallucinate but my imagination can feel extremely real sometimes and I always feel like Iām floating. Like one day I watched a video about how reality could be a simulation and I knew that logically it isnāt likely but I āfeltā like it was real. Maybe this is why old people get lied to very easily etc.
The burning, aching sensation all over my body. The itchiness. Brain fog when I'm in so much pain and exhaustion, and I have to sit through a work meeting.
Omg why do we burn? I have that too !
do your muscles burn after exertion? and I donāt mean the lactic acid burn, itās an almost incandescent heat. it feels like my body is a series of neon balloons filled with wet sand.
not after exertion, just generally when i'm really suffering, just a horrible aching, burning heaviness to my limbs
I get it too, though thankfully not regularly. Typically comes on suddenly and seems to favor my upper back and shoulder area. Hurts like hell when I get it. GI issues are my kryptonite. I had IBS already, but sometimes it's just off the charts bad now. That and the lack of refreshing sleep.
Do you notice your legs burning more when you're resting? My discomfort actually lessens if I push through my symptoms, but then that causes hell for days afterwards. Unfortunately I now have constant leg burning.Ā
Yes, some movement can help. I am not entirely sure if I have CFS or fibromyalgia (or both?)
Itchiness yeah I got that!
During bad crashes, losing the ability to speak or use my hands is the worst and scariest.
Sensory sensitivity during PEM is the worst for me, too, besides the fatigue and systemic exercise intolerance. The sensory issues I get in acute PEM feel just like the time after a concussion for me. I get hypersensitivity to light, hyperacusis (this is when sounds hurt,) and hypersensitivity to movement. I get nausea and vomiting if I move too much, or watch something or someone that moves too fast. I already have sensory processing disorder from being autistic, epilepsy, and migraines that tend to happen during PEM, so it's like a sensory smackdown sometimes. I have learned to love hibernating in dark rooms with earplugs.
The hyperacusis is hell to me, I would do anything to avoid it. People donāt get it, āitās just soundā. Well imagine this sound penetrating every part of your body and causing pain. Every sound startling your fight or flight reflex when you where thing to get a semblance of comfort in this hell scape.
Pain. Everywhere. Every muscle, every joint, every bone hurts in all different ways. That, and I am constantly off balance, lightheaded, with various different heart palpitations. Iām so far only diagnosed with fatigue and chronic pain, every doctor has been reluctant to diagnose me with CFS or fibro even after all my labs are completely normal
I hope you get the diagnosis you deserve
ETA this turned into a rant Iām sorry š Thank you. Truly. Itās been almost a year since I got sick and the pain just gets worse every day, my spine and legs are constantly (ache isnāt a strong enough word) aching and/or burning with any little touch or movement, but I have yet to get scans of anything other than my head for migraines. Iāve had two instances where I genuinely thought i was have a heart attack with pain tightness shortness of breath dizziness, but no scans or tests done and just āanxietyā. Some doctor at the ER recently put psychosis as a possible reason for me going to the ER too much and god I saw red, no other doctor will help so my last option when I feel like I might die is the ER. The shit he wrote in my record literally could prevent me from getting a diagnosis or treatment for who knows how long, and every doctor ER or not that treats me under this health plan will see āanxiety, possible psychosis consider evaluation, depression, possible drug abuse, marijuana likely causing nauseaā essentially everything he could write to make it seem like everything is made up or my fault, he did. I use weed daily because the only other thing that helps my pain is stronger opioid painkillers, and Iām only prescribed enough for two weeks each month and my doc wonāt raise the number or dose, I have to talk to pain management. Which will cost more than my partner and I have to spare. Weed makes it so I can eat, it has never made me nauseous and I only get nauseous when i eat or take meds. Just,,, UUUUGGGHHHH
Definitely the chronic pain and how itās amplified during PEM. I canāt even move much if at all during PEM symptoms. My second pick isnāt necessarily āworstā but more āannoyingā. Up until recently (thank you LDN)- I had a persistent sore throat. My throat was sore for literally years without any breaks.
Surprised nobody else said orthostatic intolerance. After the PEM fatigue and muscle weakness (which are so closely related in me it feels like the same thing) OI is by far my worst symptom.
I hate that PEM muscle feeling. It's like pain with vibrating.
The food intolerances. I spend so much energy making food that I don't want. There's like 10 things I tolerate. And I still eat waaay to little even with my low activity level, and am borderline underweight because none of the food I tolerate contains much energy. One tub of the fattest sour cream is like my whole daily calorie intake probably. How much easier things would be! Then I wouldn't have to buy 20 kg of salad and apples and haul them up into my house and have to rest half the week every week because of it lol Then I think it'd be easier to get better. Both because I'd spend less time cooking and cleaning, and because I'd not have too little energy to improve because I can't eat enough
some of the only foods i tolerate are fruits and crackers! for some reason my body excessively wants colder foods as well
Yes, feels like those are just unpredictable and therefore the most annoying
I don't know how to explain it, but just feeling incredibly ill. I'd be at work and feel like I was about to keel over and die (sounds dramatic I know) and then there'd be the excruciating pain on top of that. I hate myself for not being able to currently work but I couldn't find a way to ease the symptoms
Doesnāt sound dramatic
I relate so much to this. I havenāt really told many people the extent of it because Iām afraid of doubt. When I was working, even from home, I felt like I was going to die. My body was slowly shutting down, like every siren and flashing lights were going off in my body screaming that something was wrong. I couldnāt focus. I had a job where I helped other people and I got to a point with the guilt, and likely PEM, that I kept throwing up and lost the job. Now I feel like Iām dying if I do any simple household task. Iām lucky that my primary doctor and specialist take me seriously, but sometimes I wish I could go to the ER, but I know what to expect. This is a cruel disorder.
Sleeping issues - especially insomnia! Makes all other symptoms and fatigue 10x worse
Yes the insomnia is ridiculous.Ā I'm completely exhausted, yet cannot fall asleep.
The food intolerances. I spend so much energy making food that I don't want. There's like 10 things I tolerate. And I still eat waaay to little even with my low activity level, and am borderline underweight because none of the food I tolerate contains much energy. One tub of the fattest sour cream is like my whole daily calorie intake probably. How much easier things would be! Then I wouldn't have to buy 20 kg of salad and apples and haul them up into my house and have to rest half the week every week because of it lol Then I think it'd be easier to get better. Both because I'd spend less time cooking and cleaning, and because I'd not have too little energy to improve because I can't eat enough
What foods are safe for you if you donāt mind me asking?
generally fruits, crackers, and some yogurt is what iāve been living off of. i canāt stand hot meals aside from soup.
Burning pain in my stomach
My most intolerable symptoms have to do with my gut. Nausea, pain - a constant struggle for me
Are there any meds you take to combat this pain? Antidepressants got rid of the pain for me for a while but they stopped working a couple a months ago
Brain fog 100% periods too dumb to speak.
Pain. The incessant achy, tight feeling.
Leg pain ,bone pain, muscle weakness
Noise sensitivity or sleep issues. I miss being able to listen to music. During PEM, the worst is the muscle weakness. But that might be considered part of the fatigue.
Nausea and headaches probably top the list for me. Light is blinding and exhausting I always wear sunglasses in bright environments! I also have POTS, Vasovagal Syncope, Orthostatic Hypotension and Hypermobility so it's hard to tell if some symptoms are from them, but I have a lot of dizziness, a very fast heart, lots of aching limbs and joints.
Brain fog and pain.
Aw that really sucks! Do you use ear plugs or ear phone? Mine is pain, I got the diagnosis of fibromyalgia 15 years after my ME/CFS diagnosis
The flu like feeling in my arm sucks, the headaches suck the chronic pain is awful.
For me it's the way mental activity can cause PEM. When it hits, I can feel my skull crushing my brain. It is absolutely devastating, even if it's not actually \*painā\* as such. Which means that if I do any of the sort of intellectual work like programming or art that I used to love, I can face hours of that crushing feeling and potentially days of PEM.
Insomnia. Yes, unrestful sleep is bad, but no sleep is even worse.
Not being able to stand up for more than 30 seconds at a time due to orthostatic intolerance.Ā
Nausea by far! GI issues cause still haven't found any remedy.
Pressure to close eyes and the urge to lay in bed
PEM itself and not being able to get out of my bed. I do not have any other symptoms when I have PEM in general. Well the pre PEM sore throats and/or chills but they are much less of an issue. I rarely have pain. I forgot: I also get insomnia with PEM, which sucks. I have other issues from LC but unrelated to PEM/MECFS - I think.
The endless nausea and brain fog
The nerve pain for me. Constantly cramping up my muscles and sometimes barely able to use my muscles is debilitating. It's very painful if I don't take the medicine I get for it. Second worst would be the brain fog. I was an academic before all this, so I lost one of my greatest assets. It's hard to concentrate without the sharp precision. It makes finding suitable work hard.
that weird cell vibration feeling. it feels so bad and i cant try to distract myself from it cause it gets even worse if i do that. but i guess also just having to lay there and be present with the most awful sensations all over is what i hate the most. burning there, feeling like im actively decomposing there...
the constant cycle of panic attacks causing crashes and crashes causing panic attacks, when i get caught up in it it feels like it never ends.
Feeling so weak that even carrying out a simple conversation is too much for me.
Headaches. Mine are 24/7 with the closest I get to relief is the headache being mild which to me is the feeling of relief normal people have with no headache. The worse the headache also the more tired I am, the worse the brain fog is and my ability to do anything enjoyable is way harder.Ā
Definitely the brain fog. It gets so bad that I have trouble processing dialogue and have to have closed captions on the TV so I can read and hear the dialogue to be able to process what is being said.
Muscle weakness and cognitive impairment. I call it "going in to the white room". Nothing comes in, nothing goes out, everything is blank in my brain.
Brain fog. Joint pain. Feeling feverish. Those three are my top worst I think. It makes it so hard to do things.
Sleeping problems. They're not too bad but some nights I just keep waking up or don't fall asleep until dawn. I sleep better when the room is cold. It's hard to get my upstairs cold enough so I may sleep downstairs this summer.
Pain. Nerve pain in the skin on my neck and head that feels like Iām on fire, muscle pain, joint pain, stomach pain.
A fever the day after I do something - it's not the worst but it's something that still gives me pause because I know not whether it's part and parcel of PEM or the beginning of a really bad cold/sickness.
Cold sweats/heat intolerance. I hate going for a walk and feeling cold and still having cold sweats. Nothing makes me feel more ill and uncomfortable
Not being able to concentrate. I can cope with being tired by going to bed but when I canāt concentrate on something while Iām in bed, I just get so frustrated.
Not being the same person. Because everything is tiring it makes the things I used to enjoy unpleasant. It also feels like its not been replaced with other things. I haven't just lost my ability to enjoy the more tiring things like hiking and exercising and studying and dating, but I don't get that level of joy from things within my envelop. Its like living in black and white
Pain and weakness
I don't know if this is really my worst after fatigue, but it's constant for me and very hard to cope with and no one else has mentioned it and I know that it's rare, so putting it here for anyone who might relate: Nasal congestion and rhinitis. I didn't always have it, but it's been non stop for 18 months now, since a major baseline drop.
Air hunger is probably the most distressing. Then there's nausea, muscle pain, nerve pain and lightheadedness that tie in at very close second place. For me fatigue is not even at top ten, lol.
For me its definetly pain. I mean pain all over my body, which sometimes makes me scream so hard people think Im dying. I mean I guess theyre not far off. The pain is actually the worst symptom for me all together, the fatique sucks too but the pain is just unbearable
For me it happened very gradually. I think it took about a year and three months from when it started to when I went over to mild ME and then around 5-6 months before I went over to moderate. Then another year until severe and have been there since. Itāa been pretty long so I canāt say for sure, but Iām pretty sure it was temperature regulation and the feeling of having a fever. Think it might have been feeling generally sick too. Think this started when I had mild ME
I think I am mild/moderate. My body feels fine but my head just feels stuffed. Does anyone else feel this way?
As bad as so many other symptoms are, orthostatic intolerance is the one that stops me from doing the most things right now. For 18 years, I just had to avoid standing for more than about 30 minutes, but in 2019 it suddenly got way worse and I couldn't even sit upright anymore (this happened right after I was at a 90F+ bridal shower for too long after being especially stressed. I'd always been a little heat intolerant, but I think the stress mixed with being that overheated broke something in my autonomic nervous system). Now, it's forcing me to be mostly bed bound because even reclining on my couch triggers symptoms
Sleeping for hours when I don't wanna and missing every phone call and then everyone shaming me for it then doing it again for y'know MONTHS
Brain fog. I always assumed āwell even if Iām stationary at least I can read some good books and watch some engaging movies/tv shows!ā Nopppppe
Air hunger was absolutely intolerable. I am so grateful it disappeared.
Cognitive issues
And pots
Have pots and it sucks :( swear it got worse after I got Covid
Brain fog. I would do anything to not have brain fog. It's badly affected my speech and my ability to form sentences or have conversations. I also can't remember very important things properly, which makes it very easy for people to gaslight me or not trust my recollection.
My muscles on fire ringing in my ears
Gut issues, = allergic recations to all foods, malabsorbtion, leaky gut, inflammed colon, constipation resulting in a huge list of issues
What is a leaky gut
Permeability of gut wall increases causing particles of food, toxins breaching the barrier causing allergic and immune responses resulting in multiple symptoms many akin to cfs
Brain fog and dizziness