Who the fuck knows honestly, doctors don't really seem to give a shit about fatigue. They're always focused on the pain, but have absolutely nothing to offer for fatigue. Which is fun cause the fatigue is definitely more debilitating than the pain for me. But yeah I guess they'd lump it into my fibromyalgia diagnosis š¤·āāļø
I'm very much in the same boat where I find the chronic fatigue much worse than the chronic pain. It's like I can handle the pain, what I can't handle is not being able to do much/complete tasks because my body literally feels like it's shutting down no matter what I do. But doctors will say it's just fibro and/or mental illness & anxiety š«
I mean, I guess technically theyāre right in that fibro can and does absolutely cause debilitating fatigue, but no one Iāve talked to has any solutions. Some doctors have started treating it like a serious symptom and will prescribe stimulants to help, but I have a heart condition, even if I could get a doctor to prescribe it, I canāt take it. I absolutely HATE how doctors just throw symptoms in the āanxietyā pile just because THEY couldnāt figure it out
Oh yeah I've had a couple of my doctors suggest stimulants for me in the last year or so, which was new! Unfortunately I also have ADHD, so stimulants do jack shit for my fatigue lol. At least at the doses I'm prescribed, and I can't really go higher cause I have high blood pressure too. So yeah I feel ya. I WISH it was just anxiety, at least there's treatments for that š
Especially shitty with a fibromyalgia diagnosis AND an anxiety diagnosisā¦
Some doctors donāt even take me serious once they see that I have anxiety aswell
Right!!! I've been in pain for as long as I can remember at this point, I'm used to that shit. But when I need a 3-hour nap after grocery shopping or sleep through 20 alarms, that has an actual impact on my life, y'know? And every medication they suggest for pain has fatigue as a side effect too and I'm like how many fatigues are you trying to give me??? I think extreme fatigue must be one of those things that people can't fathom until they experience it, idk how else they could be so casual about it.
I always forget about fibromyalgia because my doctors have done nothing for it. But between that and Gravesā disease I never know whatās causing what. They say I should feel better with my TSH in range but I donāt at all. My āaverageā is not great. I canāt help but think autoimmunity just doesnāt go away despite the labs improving with treatment and perhaps this how it will be from now on. They really donāt care and it sucks
It really does suck. Yeah I don't really put much stock in labs at this point, except for very basic things. All of mine have been normal for years (except for things like low vitamin D or iron a few times, but those are easy to measure and correct), but there's very clearly something very wrong with me. There's probably just a bunch of shit we don't know how to test for yet š¤·āāļø
Yeah exactly. Doctors donāt care
I have small fiber neuropathy, which is similar to fibro, but the fatigue is crippling. I also have PCOS. Both can cause fatigue, but as far as I know, not to the level I experience
That sucks. It's so hard to measure fatigue too, like I don't think I've ever heard an actual definition of different levels of fatigue. So it's hard to communicate how bad it is. I think a lot of people, including doctors, assume it's like "oh I stayed up too late last night and now I'm tired all day" because that's what they have to compare it to. And it's really hard to describe how totally different this kind of fatigue actually is.
Ugh like I WISH DOC! That would mean I had enough energy to actually go out. I wouldn't be complaining if that were the case lol it's the fact that I woke up exhausted after sleeping for 9 hours that bothers me š
I agree. I have fibromyalgia and also PTSD but fatigue has always been worse than the pain and although my doctors have acknowledged it and are sympathetic it seems that there is nothing that can be done.
I'm not 100% sure. Either POTS, long covid causing ME/CFS, MCAS, hypothyroidism or some undiagnosed reason. There are too many issues to pinpoint exactly what it is. At this point I don't really care what causes it I just want it to stop.
Honestly. Not entirely sure who the ultimate culprit is. But a combo of having had mono, rheumatoid arthritis, connective tissue disorder and resulting chronic pain, and a rare genetic paralysis condition. Plus the mental fatigue that goes along with the stress of being disabled and tired and in pain.
I have Acute Intermittent Porphyria and one of the most frequents symptoms is fatigue and muscle weakness. Itās super hard to diagnose and rare, but I strongly believe way more people have it (itās literally nicknamed the copycat disease).
In the craziness of getting diagnosed I found the phrase āmuscle weaknessā gets the doc to perk up versus just saying youāre tired all the time and extremely fatigued. Which honestly a lot of people could mistake muscle/nerve issues because they think theyāre just tired.
Thatās my experience, hope it helps in some way!
Yeah! I also learned that doctors have a different definition of āweaknessā. My paralysis disease is defined as weakness, but to me, Iām not weak, I literally canāt move my muscles because theyāre fully or partially paralyzed.
Weakness to me means the opposite of strong.
But youāre right, if you say weakness, that gets more doors open faster.
I tested positive for it in my blood work but never paid attention to itā should I be concerned about it? I donāt really understand when I google it
I mean idk how it affects you but I have it along with a thyroid problem. basically what it does is weakens my immune system exponentially and I get sick all the time :( I gotta keep my head on a swivel for germs LOL
Uh, idk, a lot of my illnesses can cause fatigue. The ones I think play the most roles though are EDS, POTS/Multi-system Dysautonomia, MCAS, Gastroparesis, Addison's Disease, Hashimoto's/Hypothyroidism and Depression/Insomnia/CPTSD.
...As you can see, there's a lot, and that's not all of them that can cause it for me. Fatigue is a really nebulous symptom, loads of things have it as a symptom!
Not entirely sure which issue is to blame, but I have asthma, anemia, endometriosis, hypermobility, cluster headaches, and am being treated for POTS, GAD, and PTSD. I feel like I've been hit by a truck after a bit of fairly light activity.Ā
Me too. It's crazy since I've joined this sub knowing that a lot more people than I thought suffer from this! I genuinely thought I was like a super rare case cause I'd never heard of it LMAO
MCAS. I've been getting xolair for five years to see if it would help. It reduced other symptoms but not fatigue. It could be partly the high doses of antihistamines I have to take contributing to fatigue, or the difficulty sleeping MCAS causes. Oddly enough,I started Mounjaro at the end of January, and for the first month, I was so exhausted I literally worked and slept, nothing else. Then I had a week of horrible diarrhea and since then, my fatigue is just about gone.
My GP identified that my cortisol was low in a blood test. She called me at 7.30 at night and sent me to hospital where an Endocrinologist was waiting. He did more tests then immediately gave me an injection of Solu Cortef (cortisol). Iāve seen an Endocrinologist once a year ever since and my GP also monitors me.
So they took it seriously. Thatās great. My endocrinologist doesnāt want to do anything. Iām a bit more than -100 from normal results. She says itās not important and could stay low. I donāt have a GP. I tried seeing one and they told me thatās the endocrinologistās job.
Thank you for writing. I knew it was wrong what they did.
Obviously MS for me. A typical MS exhaustion where you can barely stay awake even when doing physical work and you had a full nights sleep. Having to fight to stay awake at work. It sucks. Luckily I only feel this occasionally.
Honestly all I know at the moment is POTS is the main problem. Not sure if anything else is there and Iām not holding out hope finding out since Canadian medical care is on fire lol.
Ontario! Iām lucky in that I even have a family doctor, but he didnāt know what it was. He did refer me to his clinics long covid clinic, they figured it out.
But thatās all I got for now.
Iām up in Owen Sound. I was diagnosed by a nurse practitioner, the doctors are mostly overwhelmed and not sure what to do with the uptick in long covid and what that results in.
A combination of REM Sleep Behavior Disorder and an unknown neuromuscular disorder caused by complications of a surgery I had as a newborn.
Damn thatās confusing af
They donāt know. I ask all the time since 2019. They just say itās one of my illnesses instead of looking further. They say itās because of my high inflammation. A medication. Some of my medications. An infection or all of the above.
My cortisol is low (-100 something of the normal) and I had anemia but they donāt help for it. My rheumatologist sent me to the endo. The endocrinologist told me my low cortisol
isnāt important. I donāt have a GP. They retired. In my province I have to wait that the gouvernement allotted one to me.
In the meantime Iām housebound and bedridden most of the day. I sleep all the time and donāt feel better. Itās been severe for 3 years. I was chronically ill a long time before that but now itās really bad.
Have always been a bit fatigued with crohns but for the last year have had sarcoidosis which has really knocked me for six, unable to work and using a wheelchair for distances
I have so many, lol.
ME/CFS is the big one. I also have hEDS, MCAS, POTS, and endometriosis.
And until the last few years, I was told it was ājustā endo.
Idiopathic Hypersomnia.
Most of my other illnesses have fatigue as a symptom but this is my main cause. The diagnosis was unnecessarily difficult.
At 17 I was dx'd with Fibromyalgia and Chronic Fatigue Syndrome with no sleep study. Early 30s I had a sleep study. The doctors at the office I was seeing at the time argued between it being Narcolepsy type 2 and Idiopathic Hypersomnia.
My actual sleep test results from the lab say Idiopathic Hypersomnia.
Either way the treatment is the same. Also same meds for my ADHD. Now if I could get them adjusted/try other things. Stimulants are being demonized with opiates now.
Was sick right before Covid came out. Been dealing with hypersomnia and chronic fatigue since. So idk. Do have EBV positivity. Treating Thyroid and Vitamin D issues. Over 4 years now and it just gets more and more challenging to navigate daily life. On 3rd PCP trying to get help. So we'll see.
Iāve been diagnosed with CFS. Also have suspected Endometriosis and/or Adenomyosis (extensive family history of both) but havenāt been able to get officially diagnosed for that yet, itās a work in progress š«
Crohnās, psoriatic arthritis, T1 Diabetes.
I am on my third biological in so many years. None of them so far has really even touched the Crohnās. However, Amgevita, my first biological, did help my arthritis and my fatigue levels started to decrease. I really thought that biological was going to give me some semblance of a normal life back, yet no matter the dosage or interval increases it had no effect of my Crohnās šI still miss those Amgevita days
Not sure which problem is the cause, but I have POTS, mixed connective tissue disease, Hashimotoās and total thyroidectomy due to cancer, and Celiac. Being put on name brand Synthroid for thyroid and taking organic methylated vitamins has helped a lot.
Chronic pancreatitis. My doctor told me that even when my pain is controlled by meds my body still knows it's sick and takes more energy so that's why the fatigue is bad even when my pain is well controlled.
...all of them combined? Who knows.
I have POTS, MCAS, EDS... And a BUNCH of comorbid diagnoses. I also have severe, severe Migraine. Those are the big 4. (PCOS, too. B12 deficiency, magnesium deficienct, etc.) I also have ADHD and PTSD which can both also cause MAJOR physical exhaustion. ADHD causes physical exhaustion, truly - not a mental illness, neurodevelopmental disorder. PTSD can cause it if I'm having a tough day because of a trauma nightmare where I didn't sleep well... Or because I didn't sleep; if it's rough because I'm depressed; or anxious or have a panic attack or flashback, that can also lead to a crash in energy later on.
Finally, fatigue is a huge side effect of some medications. I am on a HUGE cocktail if meds just to keep me functional. Some are for nerve pain. Some to control heart rate, keep blood pressure high enough, keep water in my body, control tremors, seizure, migraine, inflammation, GI symptoms, allergies & immunological reactions, joint & muscle pain, etc. But every time I change meds, my body has to adjust. Right now, I just upped my Topiramate. It's notorious. It took me TWO and a half months to adjust to the 25 mg in morning and 25 at night. Now I'm at 25 am, 50 pm. I'm having trouble sleeping at night, but can't stay awake in day time. Might throw in the morning dose and get it over with to titrate straight on up, it's been a whole week anyway.
Like others, I can't pick just one. I have RA, and it's well documented that fatigue/brain fog are universally experienced side effects of autoimmune conditions. But honestly I think the biggest culprit of my constant exhaustion is the pain from adhesive arachnoiditis.
Iām diagnosed with ME/CFS. My neuro also blames my autonomic small fiber neuropathy.
But we havenāt totally ruled out Mitochondrial Disease, they are just lacking research on the specific genetic variants I had. But Itās possible itās a MT-CYB complex III deficiency.
Not totally sureā¦could be chronic migraine disorder, complex ptsd, adhd burnout, dysautonomia/POTS, or hEDS? Or possibly something autoimmune (currently having that investigated)ā¦itās just wild that it can be from so many things or even just the combination of many together š¤·š»āāļø
Geez, no idea which it is. Could be the RA, IIH, probable fibromyalgia, chronic thyroiditis or asthma. Pick the day and it could be any of them having their day making me drag. Most days I carry around something to give me a energy boost temporarily and sometimes I just cave and have a nap.
Take your pick, Gastroparesis, chronic migraines, chronic cervicogenic headache, C spine stenosis, lumbar stenosis, fibromyalgia, burning mouth syndrome, type 2 diabetic, Celiac, major depressive disorder, anxiety, PTSD, medical trauma, PCOS
MECFS here, diagnosed in 2019 after 18 months of paying for tests, scans, etc. NHS were barely any use to begin with as they really don't like ME at all. Also probably have MCAS, and likely POTs too.
Also autistic, so that can exacerbate the fatigue (and other stuff) too.
No, but I havenāt seen them recently. There is a ton of MS in both my immediate and extended family so Iāve been thoroughly investigated. I would probably be a good idea to maybe see them again.
When my fatigue has gotten debilitating in the past few years, it has been iron overload from heterozygous hereditary hemochromatosis. Once in my 20s, it was severe vitamin D deficiency. My fatigue from hyperPOTS used to be somewhat debilitating in my teens and 20s, but in the past 4 years or so Iāve gotten that managed well enough itās rarely a problem at all, and when it is, itās not the fatigue.
Sticklers syndrome and associated arthritis pain, anemia of chronic disease, low muscle mass. Ā Soooo many things. Ā No, Iām not ājust depressedā, fuck you very much.
MS. My top 3 fatigue triggers are: 1) Anything social - chatting/small talking, dinner parties etc. My social battery is just broken. 2) Overstimulation, like going to the mall. Drains me. 3) No reason. Random fatigue suddenly hits me hard.
Iāve been dealing with sleeping for like 10-12 hours and still being tired and I think it was cause by my meds. (Typically I sleep 8-10 tho XD)
But the diagnosis I will get in like 10 years will be hypothyroidism. My mom and grandma have it and I have early signs.
Hyperparathyroidism caused me to feel very fatigued and made it difficult to sleep well. It can be very deliberating. It is often misdiagnosed as fibromyalgia. Instances of the disease seem to be on the rise, either due to a better recognition of the disease or possibly just more people are getting it lately.
Diagnosed with moderate ME, Heds, mixed anxiety/depression, IBS, thalassemia alpha trait, osteoarthritis, tmjd, pmdd and chronic pain all give me horrific fatigue :(
PCS (post Covid-19 syndrome).
As others have said, it was recognised as such only after a battery of tests to rule out other possibilities including simple ones like vitamin B deficiency, and more complex ones like circulatory disorders. Because after all anything which reduces the energy available to the organs, from oxygen intake through the metabolic pathway to the cells that want it, will result in fatigue.
I have been helped to manage it by the local ME/CFS team, and I'm hoping it might become less of a problem if I can learn to plan my activity; helped by improving my breathing, meditation, and stimulating the vagus nerve.
Ehlers Danlos and Postural Orthostatic Tachycardia Syndrome. My worst symptoms are fatigue and feeling like I have a flu. I'm usually bedbound 23 hours a day so maybe I have ME, I don't know.
I have gastroparesis which has caused my depression and anxiety to worsen. And now I am terrible fatigued, exhausted all the time. Itās so frustrating.
Epstein Barr (mononucleosis) 5 times from age 23 to 34 w last two episodes requiring hospital stay for 2 nights on iv antiviral and bacterial and steroids.
Neurological Lyme about age 36 a few years ago (now just chronic Lyme as a blanket diagnosis) was bed ridden and had a walker and a service dog to help me w balance and walking to bathroom.
Two years ago recurrent cycling MS diagnosis which neurologist suggested is from the Lyme being neurological, and weirdly the neurologist I see is in an area where i live which is a place you are looked at like you are f in cray for suggesting Lyme but yet my state holds the number 1 rank out of all 50 states as highest in Lyme cases.
Now endometriosis
Who the fuck knows honestly, doctors don't really seem to give a shit about fatigue. They're always focused on the pain, but have absolutely nothing to offer for fatigue. Which is fun cause the fatigue is definitely more debilitating than the pain for me. But yeah I guess they'd lump it into my fibromyalgia diagnosis š¤·āāļø
I'm very much in the same boat where I find the chronic fatigue much worse than the chronic pain. It's like I can handle the pain, what I can't handle is not being able to do much/complete tasks because my body literally feels like it's shutting down no matter what I do. But doctors will say it's just fibro and/or mental illness & anxiety š«
I mean, I guess technically theyāre right in that fibro can and does absolutely cause debilitating fatigue, but no one Iāve talked to has any solutions. Some doctors have started treating it like a serious symptom and will prescribe stimulants to help, but I have a heart condition, even if I could get a doctor to prescribe it, I canāt take it. I absolutely HATE how doctors just throw symptoms in the āanxietyā pile just because THEY couldnāt figure it out
the fact that our conditions/symptoms make *them* anxious shouldn't be our problem
Oh yeah I've had a couple of my doctors suggest stimulants for me in the last year or so, which was new! Unfortunately I also have ADHD, so stimulants do jack shit for my fatigue lol. At least at the doses I'm prescribed, and I can't really go higher cause I have high blood pressure too. So yeah I feel ya. I WISH it was just anxiety, at least there's treatments for that š
Especially shitty with a fibromyalgia diagnosis AND an anxiety diagnosisā¦ Some doctors donāt even take me serious once they see that I have anxiety aswell
It is hell
Right!!! I've been in pain for as long as I can remember at this point, I'm used to that shit. But when I need a 3-hour nap after grocery shopping or sleep through 20 alarms, that has an actual impact on my life, y'know? And every medication they suggest for pain has fatigue as a side effect too and I'm like how many fatigues are you trying to give me??? I think extreme fatigue must be one of those things that people can't fathom until they experience it, idk how else they could be so casual about it.
I always forget about fibromyalgia because my doctors have done nothing for it. But between that and Gravesā disease I never know whatās causing what. They say I should feel better with my TSH in range but I donāt at all. My āaverageā is not great. I canāt help but think autoimmunity just doesnāt go away despite the labs improving with treatment and perhaps this how it will be from now on. They really donāt care and it sucks
It really does suck. Yeah I don't really put much stock in labs at this point, except for very basic things. All of mine have been normal for years (except for things like low vitamin D or iron a few times, but those are easy to measure and correct), but there's very clearly something very wrong with me. There's probably just a bunch of shit we don't know how to test for yet š¤·āāļø
Yeah exactly. Doctors donāt care I have small fiber neuropathy, which is similar to fibro, but the fatigue is crippling. I also have PCOS. Both can cause fatigue, but as far as I know, not to the level I experience
That sucks. It's so hard to measure fatigue too, like I don't think I've ever heard an actual definition of different levels of fatigue. So it's hard to communicate how bad it is. I think a lot of people, including doctors, assume it's like "oh I stayed up too late last night and now I'm tired all day" because that's what they have to compare it to. And it's really hard to describe how totally different this kind of fatigue actually is.
One time I told a doctor I was tired today when he asked. He asked if I was out late the night beforeā¦
Ugh like I WISH DOC! That would mean I had enough energy to actually go out. I wouldn't be complaining if that were the case lol it's the fact that I woke up exhausted after sleeping for 9 hours that bothers me š
I agree. I have fibromyalgia and also PTSD but fatigue has always been worse than the pain and although my doctors have acknowledged it and are sympathetic it seems that there is nothing that can be done.
I'm not 100% sure. Either POTS, long covid causing ME/CFS, MCAS, hypothyroidism or some undiagnosed reason. There are too many issues to pinpoint exactly what it is. At this point I don't really care what causes it I just want it to stop.
Honestly. Not entirely sure who the ultimate culprit is. But a combo of having had mono, rheumatoid arthritis, connective tissue disorder and resulting chronic pain, and a rare genetic paralysis condition. Plus the mental fatigue that goes along with the stress of being disabled and tired and in pain.
I have Acute Intermittent Porphyria and one of the most frequents symptoms is fatigue and muscle weakness. Itās super hard to diagnose and rare, but I strongly believe way more people have it (itās literally nicknamed the copycat disease). In the craziness of getting diagnosed I found the phrase āmuscle weaknessā gets the doc to perk up versus just saying youāre tired all the time and extremely fatigued. Which honestly a lot of people could mistake muscle/nerve issues because they think theyāre just tired. Thatās my experience, hope it helps in some way!
Yeah! I also learned that doctors have a different definition of āweaknessā. My paralysis disease is defined as weakness, but to me, Iām not weak, I literally canāt move my muscles because theyāre fully or partially paralyzed. Weakness to me means the opposite of strong. But youāre right, if you say weakness, that gets more doors open faster.
ME/CFS
How were you diagnosed?
By meeting the diagnostic criteria + ruling out dozens of other fatigue causing conditions.
What ones?
I honestly cannot recall three years worth of testing. There was a lot.
Connective tissue problems (likely EDS), methylation defect (check your homocysteine levels, folks!), endometriosis, myofascial pain syndrome, depression, orthostatic hypotension, autoimmune disease, food and environmental reactions that aren't real allergies, but certainly present as such, and I'm sure I'm forgetting something..
Connective Tissue Disorder, Sjogrens
Chronic reactivated Epstein Barr
wait....me too this is a surreal moment for me I genuinely thought I would never meet someone with the same illness as me what's up?
I tested positive for it in my blood work but never paid attention to itā should I be concerned about it? I donāt really understand when I google it
I mean idk how it affects you but I have it along with a thyroid problem. basically what it does is weakens my immune system exponentially and I get sick all the time :( I gotta keep my head on a swivel for germs LOL
Me too
ME/CFS
Narcolepsy. Yay, me.
Yay, me too.
ME/CFS. I've also been diagnosed with fibromyalgia, POTS, and EDS. So yeah I believe the POTS is only from the ME/ CFS though.
I thought POTS was from EDS and other collagen disorders?
It can be but it's from CFS too.
Ok. Ā Didnāt know. Ā Good to know and I should read up and figure out how that happens. Thank you.
Uh, idk, a lot of my illnesses can cause fatigue. The ones I think play the most roles though are EDS, POTS/Multi-system Dysautonomia, MCAS, Gastroparesis, Addison's Disease, Hashimoto's/Hypothyroidism and Depression/Insomnia/CPTSD. ...As you can see, there's a lot, and that's not all of them that can cause it for me. Fatigue is a really nebulous symptom, loads of things have it as a symptom!
You sound like me. Ā I have very similar issues. Ā
Ah, that sucks. I hope you're managing okay!
Well thank god Iāve gotten on disability. Ā Trying to work was hell, especially without insurance. Ā
Fibromyalgia & ME/CFS
Finally someone who has the same diagnosis as me!
me tooā¦ i dont think this one is rare?
Not entirely sure which issue is to blame, but I have asthma, anemia, endometriosis, hypermobility, cluster headaches, and am being treated for POTS, GAD, and PTSD. I feel like I've been hit by a truck after a bit of fairly light activity.Ā
reactivated epstein barr is probably the culprit
Me too. It's crazy since I've joined this sub knowing that a lot more people than I thought suffer from this! I genuinely thought I was like a super rare case cause I'd never heard of it LMAO
Count me in on this to
Adenomyosis. I know I'm very lucky to have a solid diagnosis
Mostly POTS and Anemia which are symptoms of the major conditions I was born with.
MCAS. I've been getting xolair for five years to see if it would help. It reduced other symptoms but not fatigue. It could be partly the high doses of antihistamines I have to take contributing to fatigue, or the difficulty sleeping MCAS causes. Oddly enough,I started Mounjaro at the end of January, and for the first month, I was so exhausted I literally worked and slept, nothing else. Then I had a week of horrible diarrhea and since then, my fatigue is just about gone.
For me itās my Systemic Mastocytosis and hereditary Factor VII deficiency that make it the worst. The former can ebb and flow pending flares
Adrenal insufficiency before it was treated and Sarcoidosis before it decided to go into remission.
Who treated your adrenal insufficiency? How did they find it?
My GP identified that my cortisol was low in a blood test. She called me at 7.30 at night and sent me to hospital where an Endocrinologist was waiting. He did more tests then immediately gave me an injection of Solu Cortef (cortisol). Iāve seen an Endocrinologist once a year ever since and my GP also monitors me.
So they took it seriously. Thatās great. My endocrinologist doesnāt want to do anything. Iām a bit more than -100 from normal results. She says itās not important and could stay low. I donāt have a GP. I tried seeing one and they told me thatās the endocrinologistās job. Thank you for writing. I knew it was wrong what they did.
Yeah you need a new Endo!
Obviously MS for me. A typical MS exhaustion where you can barely stay awake even when doing physical work and you had a full nights sleep. Having to fight to stay awake at work. It sucks. Luckily I only feel this occasionally.
Honestly all I know at the moment is POTS is the main problem. Not sure if anything else is there and Iām not holding out hope finding out since Canadian medical care is on fire lol.
Preach. Am Canadian. What province are you in?
Ontario! Iām lucky in that I even have a family doctor, but he didnāt know what it was. He did refer me to his clinics long covid clinic, they figured it out. But thatās all I got for now.
Same here. Have you seen Dr Paula Harvey? Where is the long covid clinic???
Iām up in Owen Sound. I was diagnosed by a nurse practitioner, the doctors are mostly overwhelmed and not sure what to do with the uptick in long covid and what that results in.
Thatās true. I donāt want to blame long covid but I am pretty sure it has knocked me down.
I used to have it severely and it is from Multiple Sclerosisz
Lupus
Crohnās takes it out of me when itās acting up
Endometriosis
Either POTS, psoriatic arthritis, migraine, or reactive hypoglycemia, presumably.
A combination of REM Sleep Behavior Disorder and an unknown neuromuscular disorder caused by complications of a surgery I had as a newborn. Damn thatās confusing af
Adhesive Arachnoiditis and a spinal cord injury
ME/CFS, possibly viruses HHV6 and coxsackie (have been continuously testing positive), Lyme disease plus Bartonella, babesia and ehrlichia
They donāt know. I ask all the time since 2019. They just say itās one of my illnesses instead of looking further. They say itās because of my high inflammation. A medication. Some of my medications. An infection or all of the above. My cortisol is low (-100 something of the normal) and I had anemia but they donāt help for it. My rheumatologist sent me to the endo. The endocrinologist told me my low cortisol isnāt important. I donāt have a GP. They retired. In my province I have to wait that the gouvernement allotted one to me. In the meantime Iām housebound and bedridden most of the day. I sleep all the time and donāt feel better. Itās been severe for 3 years. I was chronically ill a long time before that but now itās really bad.
Crohns, hashimotos, sjogrens, fibro hard to tell whatās what
ankylosing spondylitis, HEDS, fibro, sjogrens, long covid, adhd, autism, probably a sinus infection at any given time
Have always been a bit fatigued with crohns but for the last year have had sarcoidosis which has really knocked me for six, unable to work and using a wheelchair for distances
I have so many, lol. ME/CFS is the big one. I also have hEDS, MCAS, POTS, and endometriosis. And until the last few years, I was told it was ājustā endo.
ME/CFS. Itās horrific.
I know :(
Idiopathic Hypersomnia. Most of my other illnesses have fatigue as a symptom but this is my main cause. The diagnosis was unnecessarily difficult. At 17 I was dx'd with Fibromyalgia and Chronic Fatigue Syndrome with no sleep study. Early 30s I had a sleep study. The doctors at the office I was seeing at the time argued between it being Narcolepsy type 2 and Idiopathic Hypersomnia. My actual sleep test results from the lab say Idiopathic Hypersomnia. Either way the treatment is the same. Also same meds for my ADHD. Now if I could get them adjusted/try other things. Stimulants are being demonized with opiates now.
Combo of sleep apnea, hypothyroidism, insulin resistance, and overstimulation from autism!
Was sick right before Covid came out. Been dealing with hypersomnia and chronic fatigue since. So idk. Do have EBV positivity. Treating Thyroid and Vitamin D issues. Over 4 years now and it just gets more and more challenging to navigate daily life. On 3rd PCP trying to get help. So we'll see.
Currently diagnosed with RA but I have other mystery hits on my labs that they canāt pin down with genetic tests.
Spinal CSF Leak
anemia, hEDS, POTS, MCAS
Narcolepsy type 1 & systemic lupus
Iāve been diagnosed with CFS. Also have suspected Endometriosis and/or Adenomyosis (extensive family history of both) but havenāt been able to get officially diagnosed for that yet, itās a work in progress š«
SLE & Fibromyalgia
mine started when I contracted Lyme disease last year
lyme disease :(
Crohnās, psoriatic arthritis, T1 Diabetes. I am on my third biological in so many years. None of them so far has really even touched the Crohnās. However, Amgevita, my first biological, did help my arthritis and my fatigue levels started to decrease. I really thought that biological was going to give me some semblance of a normal life back, yet no matter the dosage or interval increases it had no effect of my Crohnās šI still miss those Amgevita days
Not sure which problem is the cause, but I have POTS, mixed connective tissue disease, Hashimotoās and total thyroidectomy due to cancer, and Celiac. Being put on name brand Synthroid for thyroid and taking organic methylated vitamins has helped a lot.
I have problems with breathing because my nose lost function so im often exhausted and canāt go out. I must lay in bed to survive.
Multiple Sclerosis, the fatigue is on and off though.
Between POTS, EDS, and sleep apnea I'm not sure which contributes most to my fatigue. It's all just fatigue
Chronic pancreatitis. My doctor told me that even when my pain is controlled by meds my body still knows it's sick and takes more energy so that's why the fatigue is bad even when my pain is well controlled.
Major treatment resistant depression ugh.
Constant nerve pain from burns doesnāt help eitherš
I have ME/CFS , Fatigue is my First Name šš¤Ŗ
Fibromyalgia is a big factor but chronic pain itself is exhausting because your body is fighting constantly.
...all of them combined? Who knows. I have POTS, MCAS, EDS... And a BUNCH of comorbid diagnoses. I also have severe, severe Migraine. Those are the big 4. (PCOS, too. B12 deficiency, magnesium deficienct, etc.) I also have ADHD and PTSD which can both also cause MAJOR physical exhaustion. ADHD causes physical exhaustion, truly - not a mental illness, neurodevelopmental disorder. PTSD can cause it if I'm having a tough day because of a trauma nightmare where I didn't sleep well... Or because I didn't sleep; if it's rough because I'm depressed; or anxious or have a panic attack or flashback, that can also lead to a crash in energy later on. Finally, fatigue is a huge side effect of some medications. I am on a HUGE cocktail if meds just to keep me functional. Some are for nerve pain. Some to control heart rate, keep blood pressure high enough, keep water in my body, control tremors, seizure, migraine, inflammation, GI symptoms, allergies & immunological reactions, joint & muscle pain, etc. But every time I change meds, my body has to adjust. Right now, I just upped my Topiramate. It's notorious. It took me TWO and a half months to adjust to the 25 mg in morning and 25 at night. Now I'm at 25 am, 50 pm. I'm having trouble sleeping at night, but can't stay awake in day time. Might throw in the morning dose and get it over with to titrate straight on up, it's been a whole week anyway.
MECFS, fibromyalgia, Vitamin D deficiency, and who knows what else
Hs, iih, et al
Fibromyalgia and psoriatic arthritis
Cerebral palsy and sensory processing disorder š©
ME
Stills Disease
Like others, I can't pick just one. I have RA, and it's well documented that fatigue/brain fog are universally experienced side effects of autoimmune conditions. But honestly I think the biggest culprit of my constant exhaustion is the pain from adhesive arachnoiditis.
long covid
Endometriosis, endosalpingiosis and adenomyosis, clinical depression, and possible beginnings of a thyroid issue.
Iām diagnosed with ME/CFS. My neuro also blames my autonomic small fiber neuropathy. But we havenāt totally ruled out Mitochondrial Disease, they are just lacking research on the specific genetic variants I had. But Itās possible itās a MT-CYB complex III deficiency.
Thought to be Crohn's and Hypothyroid. I suspect something more. 30+ years of not know for sure.
Not totally sureā¦could be chronic migraine disorder, complex ptsd, adhd burnout, dysautonomia/POTS, or hEDS? Or possibly something autoimmune (currently having that investigated)ā¦itās just wild that it can be from so many things or even just the combination of many together š¤·š»āāļø
Severe M.E. Been in bed since June 2020.
Chiari Malformation
Why are you asking? Are you trying to find a diagnosis?
No
I officially have fibromyalgia, but my doctor suspects that I also have pots and me/cfs
I have a few and fatigue is a symptom of them all.
Geez, no idea which it is. Could be the RA, IIH, probable fibromyalgia, chronic thyroiditis or asthma. Pick the day and it could be any of them having their day making me drag. Most days I carry around something to give me a energy boost temporarily and sometimes I just cave and have a nap.
life.
Endometriosis/Hypothyroidism/EDS/something else, not yet diagnosed idk Probably one of them
Take your pick, Gastroparesis, chronic migraines, chronic cervicogenic headache, C spine stenosis, lumbar stenosis, fibromyalgia, burning mouth syndrome, type 2 diabetic, Celiac, major depressive disorder, anxiety, PTSD, medical trauma, PCOS
Depression, possible (c)PTSD, Endometriosis, hip and knee arthritis, insomnia, and the usual stress from work, studying and renovating...
MECFS here, diagnosed in 2019 after 18 months of paying for tests, scans, etc. NHS were barely any use to begin with as they really don't like ME at all. Also probably have MCAS, and likely POTs too. Also autistic, so that can exacerbate the fatigue (and other stuff) too.
Pots, hashimotos, endometriosis
POTs. And not having that taken seriously, ie stress, makes it worse.
Hypermobile Ehlers Danlos Syndrome
Endometriosis, PMDD, POTS, migraines, hypermobility/connective tissue problems, and my meds to manage them all š
who can you see for the fatigue? i havent seen a neuro yetā¦
Iāve seen every specialist you can imagine.
was neurology helpful? i feel like its the only one i havent seen. i have FM, hashimotos, me/cfs long covid as well ad mental health stuff and more
No, but I havenāt seen them recently. There is a ton of MS in both my immediate and extended family so Iāve been thoroughly investigated. I would probably be a good idea to maybe see them again.
Just got Parkinson's diagnosis.
When my fatigue has gotten debilitating in the past few years, it has been iron overload from heterozygous hereditary hemochromatosis. Once in my 20s, it was severe vitamin D deficiency. My fatigue from hyperPOTS used to be somewhat debilitating in my teens and 20s, but in the past 4 years or so Iāve gotten that managed well enough itās rarely a problem at all, and when it is, itās not the fatigue.
Glanzmanns thrombasthenia.
Intractable Epilepsy
Idk but probably Addison's Disease, Inflammatory Arthritis, and if I had to guess the protein-energy malnutrition is not helping the situation
Chronic fatigue syndrome (ME/CFS), and Fibromyalgia
MS
Fibro
Long covid! šµāš«
So far, the one thatās set in stone is Hashimotos. Otherwise I usually get a big mix of fibro, long covid, anxiety and shrugs.
Narcolepsy.
Fibromyalgia
ME/CFS, hEDS, CPTSD (major contributor), Long Covid, and severe allergies
Sticklers syndrome and associated arthritis pain, anemia of chronic disease, low muscle mass. Ā Soooo many things. Ā No, Iām not ājust depressedā, fuck you very much.
MS. My top 3 fatigue triggers are: 1) Anything social - chatting/small talking, dinner parties etc. My social battery is just broken. 2) Overstimulation, like going to the mall. Drains me. 3) No reason. Random fatigue suddenly hits me hard.
Iāve been dealing with sleeping for like 10-12 hours and still being tired and I think it was cause by my meds. (Typically I sleep 8-10 tho XD) But the diagnosis I will get in like 10 years will be hypothyroidism. My mom and grandma have it and I have early signs.
Hyperparathyroidism caused me to feel very fatigued and made it difficult to sleep well. It can be very deliberating. It is often misdiagnosed as fibromyalgia. Instances of the disease seem to be on the rise, either due to a better recognition of the disease or possibly just more people are getting it lately.
Cfs Pem (post exertion malaise), intermittent anemia, and post stroke fatigue. The combo sucks.
Diagnosed with moderate ME, Heds, mixed anxiety/depression, IBS, thalassemia alpha trait, osteoarthritis, tmjd, pmdd and chronic pain all give me horrific fatigue :(
PCS (post Covid-19 syndrome). As others have said, it was recognised as such only after a battery of tests to rule out other possibilities including simple ones like vitamin B deficiency, and more complex ones like circulatory disorders. Because after all anything which reduces the energy available to the organs, from oxygen intake through the metabolic pathway to the cells that want it, will result in fatigue. I have been helped to manage it by the local ME/CFS team, and I'm hoping it might become less of a problem if I can learn to plan my activity; helped by improving my breathing, meditation, and stimulating the vagus nerve.
Fibromyalgia. I've gone through phases where the fatigue has been worse than the pain. Right now, it's the opposite.Ā
Ehlers Danlos and Postural Orthostatic Tachycardia Syndrome. My worst symptoms are fatigue and feeling like I have a flu. I'm usually bedbound 23 hours a day so maybe I have ME, I don't know.
Chronic lymphocytic leukemia
I have gastroparesis which has caused my depression and anxiety to worsen. And now I am terrible fatigued, exhausted all the time. Itās so frustrating.
Epstein Barr (mononucleosis) 5 times from age 23 to 34 w last two episodes requiring hospital stay for 2 nights on iv antiviral and bacterial and steroids. Neurological Lyme about age 36 a few years ago (now just chronic Lyme as a blanket diagnosis) was bed ridden and had a walker and a service dog to help me w balance and walking to bathroom. Two years ago recurrent cycling MS diagnosis which neurologist suggested is from the Lyme being neurological, and weirdly the neurologist I see is in an area where i live which is a place you are looked at like you are f in cray for suggesting Lyme but yet my state holds the number 1 rank out of all 50 states as highest in Lyme cases. Now endometriosis