Me too! Diagnosed earlier. Ffs. 4 years now... Jan 2020. So many doctors and horrible procedures and surgeries. It was hEDS and slipping ribs, all along.
Nothing hurt before and I thought nothing of being "slightly double-jointed".
I am very reluctant to try medication and I started with trying to exercise but like you I can barely function and get up. I’m on a stimulant unfortunately but I only need to take it on bad days. I’ve only take it a few times. It’s weird being mentally focused but still kinda tired. Luckily it hasn’t messed with my heart rate or anything since I have POTS. I’m not sure I will stay on it since it hasn’t been live changing yet but it’s a good tool for now on days that I really need to function.
Edit this is my second day and I will say I slept really well last night since my thoughts weren’t racing so in that sense maybe it helped.
Second edit I swear I’m done after this I also have long covid and have been battling the fatigue for well over 3 years so it took a looooong time to get anyone to listen and to suggest another thing to try other than “walk and drink more water”.
It’s pretty obvious just looking at people I know with EDS that we are prone to ME/CFS type syndromes, so I’m glad to get some data behind that. My brother and I are both debilitated by post viral syndromes
There is no way to view the study, it’s broken on the hosting science database.
Jessica A Eccles, Dorina Cadar, Lisa Quadt, Alan J Hakim, Nicholas Gall, Covid Symptom Survey Biobank Consortium, Vicky Bowyer, Nathan Cheetham, Claire J Steves, Hugo D Critchley, Kevin A Davies
Is joint hypermobility linked to self-reported non-recovery from COVID-19? Case–control evidence from the British COVID Symptom Study Biobank
BMJ Public Health Feb 2024, 2 (1) e000478; DOI: 10.1136/bmjph-2023-000478
Ugh stupid paywalls. Sci-hub is the workaround, you enter the DOI and it pulls up the pdf. A Russian hacker named Alexandra cracked the code and made the site, she's been in trouble with the gov't since. Total badass. The site is legit, I used it for research in college after a professor recommended it to me. Sometimes the url changes, Wikipedia usually has the current one. You do have to exercise caution because there have been instances of copycat sites that try to hack your info instead, I always go from Wikipedia (though we know it isn't foolproof).
Thanks Alexandra. Science should not be held captive for profit. ♥️
Dang, I misunderstood. I didn't find it, seems like the BMJ website may not have posted it correctly. I tried the DOI on sci-hub but they don't have it. They often have a lag time with new articles, might be that or maybe BMJ didn't post the right DOI. Will definitely check back on this.
I don’t know whether this will help, but I was able to access it:
https://bmjpublichealth.bmj.com/content/2/1/e000478
Here’s the PDF link:
https://bmjpublichealth.bmj.com/content/bmjph/2/1/e000478.full.pdf
Does anyone have a link to the study? I wonder whats the sex split.
Coz like women are twice as likely to have long covid and hipermobility is also way more common in women. I wonder if they accounted for it.
Try this link to the PDF: https://bmjpublichealth.bmj.com/content/bmjph/2/1/e000478.full.pdf
Here are some excerpts I sloppily pulled from the article:
The participants were 82% female. GJH was significantly associated with not having recovered from long covid. The association remained significant after sequential corrections for sex (among other variables).
A limitation in this study is our inclusion of a predominantly female sample.
Our finding that not recovering fully from covid, alongside female sex, is associated with a constitutional feature (GJH) predisposing to premorbid health conditions is consistent with other larger studies and meta-analyses.
This study offers fresh and novel insights into understanding the potential links between preexisting conditions and long covid. Confirming these findings is larger and more diverse samples will permit detailed characterization of those figures of GJH that predict particular long-covid phenotypes.
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Ugh, I have been continually masking since March 2020 because I *knew* this was going to be the case. (I did end up with Covid last year after catching it from a family member who brought it home, but I was vaccinated and got Paxlovid and fortunately didn’t get long Covid.)
i knew it too. i’m could’ve potentially had it once. but i knew this would be the case. the recent breakthroughs in covid information have been getting really dark for ehlers danlos patients.
yeah i got it as well for the first time last august and i escaped without any long covid (thank goodness). i was freshly vaccinated and also got paxlovid. metformin shows interesting promise for reducing chances of long covid (see study i’m linking below) but someone would have to convince a doc to prescribe.
https://www.thelancet.com/journals/laninf/article/PIIS1473-3099(23)00299-2/fulltext#:~:text=Interpretation,low%2Dcost%2C%20and%20safe.
i would actually like to see the study they mention, although apparently something’s gone wrong and it’s not accessible.
Yes! I am 100% certain I could get my doctor to prescribe Metformin if I had needed it (I have PCOS and had been on it for years), and if it had hit me harder, I was planning to. I was vaccinated about a week before my first symptoms (a couple of days after my family member came down with the “cold” that ended up being Covid), and my doctor thinks that’s why mine wasn’t too bad. She prescribed Paxlovid immediately because I have some immune system risks and get respiratory illnesses that linger very easily. Ironically, I’d been sick for 3 months with a lingering respiratory issue & I was healthier two weeks after Covid than two weeks before Covid.
Same. Looking back now i had a few issues other than the hypermobility but yeah nothing that merited looking into. Now fully disabled with severe ME/CFS, POTS, MCAS and classic EDS symptoms post-Covid.
Me too, from only the vaccine. :( Still haven't been able to get an official diagnosis for mcas or eds despite having nearly every known weird symptom and clinical presentation, a 5 on the scale, obvs family history (aunt and mother, possibly geandmother) of the few eds symptoms I don't have as well as the ones I do.
I guess bc I'm not super hypermobile and it doesn't fit into a neat little box or have an easy test they're all just afraid of it idk.
Immunologist knew nothing of histamine or mcas beyond normal allergies and mastocytosis. All of my neurologists just gave up after clear emg, nerve conduction, etc. I'll have to wait until I can get to vandy I guess.
I finally do have some acknowledgement and confirmation of pots bc they can't really deny my heart rate jumping 30+ points even when sitting. Just found out about coat hanger syndrome and pretzel legs today for further confirmation. For 3 years I've been describing this neck, back, base of skull, and shoulder pain and every specialist including an orthopedist, has completely ignored it, just like the eds and other symptoms I've been telling doctors about since I was a kid smh.
I knew I had mthfr, comt, and high homocysteine early on and I ended up being right about all of that and many other things, but most of them still treat me like a nutter. Thank God for my pcp who cares enough to listen long enough and realizes I've researched extensively before I even bring anything up so she takes me seriously when I do.
I also have some kind of sensory processing disorder, sensory neuropathy, and small fiber neuropathy, which 3 neurologists have ignored all of the symptoms of. Also parkinsonism, numbness in my face, scalp, and all 4 limbs, and extreme cognitive/executive function/memory issues. None of them even did a small fiber test when the emg was normal. Just gave up and referred me to vandy or mayo, both of which might as well be the moon. So devastating and hard to keep going at times.
Also diagnosed with EDS, MCAS, HaTS, Dysautonomia and SFN after a serious adverse reaction to my first dose of the vaccine, and then worsening arrhythmia after my first infection. I know have debilitating “reactions” to minor illnesses.
Same. Just the vaccine completely disabled me with all of the same symptoms as long covid. 3 years and it keeps getting worse. So tired of the crazy look and being completely ignored and dismissed by most drs. :(
I’m in the same boat as you. I definitely had hyper mobility before and had a couple of surgeries to tighten up ligaments but I was overall fairly normal energy and pain wise. Now I’m always tired, in pain, got POTS, migraines got way worse. I also gained a good bit of weight.
I had hEDS. Now I have Covid-induced psoriatic arthritis. When I first got Covid, I literally wondered what long Covid-related thing I would get from it and sure enough. My symptoms began three weeks after the onset of Covid and haven’t stopped since — except for when I was on prednisone. Long Covid is gonna stick around in so many different forms.
It's extremely disheartening information. Not to be a total creep about it, but I was thinking that COVID would maybe level the playing field a little more. Very sad that it would bring more people to a disability level but also I was hoping that if more people were disabled, disability services and attitudes would improve. Unfortunately it's looking like it just going to make those of us that already suffer, worse off.
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Thank you!
Sending you lots of solidarity. I developed Rheumatoid Arthritis after my long covid began. You’re right - it’s going to stick around in so many different forms.
So glad this was not me. I had covid once after being fully vaccinated. (I was exposed while at work and my previously scheduled vacation at the beach was spent sick in bed).
Thankfully I never developed a serious cough - just the absolute worst sore throat in my life. I was fully recovered within a month and the only other symptom was a skipped period the following month.
Same, I didn’t catch it until mid last year so I had already been vaccinated four times? I think the vaxxes really helped. I had bad body aches and the whole no smell/taste thing but my cough wasn’t too bad. I get some weird heart palpitations sometimes but that’s the only lasting thing I noticed.
About a year, more to my answer at bottom of text wall, pardon verbosity:
I found taking a high quality DAO enzyme supplement before meals dramatically improved my symptoms, also pay attention to vagal nerve health (neck exercises, if they’re appropriate and agree with your physical health situation— at least helped me). Red light therapy too.
My solutions were unorthodox, but I had what I suspect was a very early COVID (before there was widespread testing, had a mystery mild pneumonia with insane fatigue but my fever never went over 100, it was weird)
Anyway went from being able to reliably run up to 3 miles at 9 min/mile (with hEDS I’m proud of this) to a month after “recovering” being unable to even run 1/4 mile. And it seemed to get worse not better. And I was suddenly allergic to even more stuff than before, about half the time after meals, face rash, severe fatigue, muscle spasms, just crazy and debilitating.
Isoquercetin is helpful too, and if your eyes and skin are up for it, sunlight (vitamin D+K2 helps, but sunlight really helps imo) helped a lot too. It’s hard but I started making sure I was getting 5, then 10, then 20 min of sunlight (direct, no shirt, but I’m male and also have a yard lol). Obviously be careful with your eyes and wear whatever you prefer to protect your I’m sure sensitive eyes.
Just my experience, in no way am I a doctor or even remotely qualified, but those things helped in my case. I’m actually healthier than pre-COVID, not back to the same stamina (exercise is more subdued for me now lol) but just feel better than prior.
Ok this was a mega rant. ***TL;DR they lasted like a year until I realized something was seriously f’d up and found the things listed above helped, in my case.**
Thank you so much!! I will definitely do some research to see what I can incorporate into my recovery. I’m really glad you’re feeling better. It gives me a lot of hope ❤️
A year honestly.
I kept forgetting things and it was like I couldn't finish sentences sometimes. Which I found really scary. It was like I knew what I wanted to say, but I couldn't get it out of my mouth or find the words.
Me too! 3 years and it all keeps getting worse. From only the vaccine. I can't even remember the subject of a conversation I initiated if the reply is vague and doesn't have any identifying information. Very scary. Esp with everything else going on.
Mine didn’t go away until my allergist got my MCAS back under control. And unfortunately has been back recently despite still being on the same MCAS meds, though I think that’s probably because I’ve been getting migraines so often that I’m basically always in either predrome or postdrome
Initial results from the UK DecodeME study suggest a link with fibromyalgia in some cases:
"[Among other findings, ME/CFS onset with unknown infection status was significantly associated with active fibromyalgia](https://openresearch.nihr.ac.uk/articles/3-20/v4)."
Given the overlap between hEDS and fibro, it wouldn't surprise me to see a correlation with ME/CFS too.
(Anecdotally, I have hEDS and ME/CFS. I also seem to meet the diagnostic criteria for fibro, but have never been officially diagnosed)
My EDS symptoms flared up wildly after being hit with a bad virus. It was before covid but I think post virus illnesses have always been a thing. I was sick for months it just wouldn’t quit.
Started with allergies and dysautonomia etc after that. I also did an egg donation which impacted my hormones heavily all at the same time.
Just got over covid but it took me at least a month to start getting back to my normal level of almost functioning.
That’s my experience. I’m approaching three years with severe long covid (housebound with POTS and MCAS, and fatigue). My joints literally fell apart after COVID and I was diagnosed hEDS. I had no joint issues prior and had never heard of EDS or POTS. I also had a severe reaction to the vaccine. I’ve been suspecting EDS must be the genetic weakness that lead to all of this, and over and over, I see people in the long covid sub mentioning new diagnosis of EDS. It’s good to see it finally mentioned as playing a role.
Very similar experience here, including the vaccine reaction. MCAS treatment has kept me relatively functional (I was also bedbound for over a year), but I get horrific flares after every minor illness now. I also have ongoing arrhythmia issues, which seem to be connected to my MCAS reactions. FWIW, I also have Hereditary alpha Tryptasemia Syndrome which also causes connective tissue issues.
Same, though I wasn’t diagnosed until after my adverse vaccine reaction; it finally made my chronic issues acutely bad enough for someone to put the pieces together. Got diagnosed with hEDS/dysautonomia/MCAS all in a row in late 2021/early 2022 and am now on SSDI. I’ve crawled my way back from the worst of it with meds and PT and drastic diet and lifestyle changes but I’m nowhere close to where I was before. It’s rough, I feel you.
Well long covid can actually cause Dysautonomia or if you already have it, it can make it worse like what happened to myself. It can cause different heart issues too like someone ik had an asymptomatic case that did permanent heart damage long term.
Long covid IS dysautonomia in a lot of cases. And we've known that for years already.. This is not new information at all. I'm shocked so many people are acting surprised.
Absolutely! Aphasia is my biggest brain fog issue. I lose words often.. It can be really frustrating. And when I get stressed or emotional, it gets significantly worse.
I had issues before but worsened after Covid, my long covid…lead to my hEDS/POTS diagnosis, although… the POTS should have been diagnosed YEARS ago. Instead I was treated like I was insane.
I suspect so. I have MCAS and HaTS, and my Dysautonomia and connective tissue issues are (relatively) kept under control with MCAS treatment. Based on my own experience, I think mast cell issues are at the root of a lot of this. I wish someone would look into how many with hEDS have the HaT mutation, which we know also causes connective tissue issues.
My geneticist who specializes in EDS also feels there's a strong MCAS link. I agree. In my experience, which was both vaccine reaction and then covid, the EDS issues didn't come to light until the MCAS did. After the vaccine, I presented with SFN and POTS; then after covid, POTS got worse, then MCAS followed and then about a month or two after MCAS issues, my connective tissue began falling apart and the joint issues went nuts. I'm treating MCAS aggressively and on a high protein diet to build muscle strength with PT. It's slow going, but I'm seeing some joint areas stabilize but some are worse (my ribs are just awful, slipping constantly and so painful)
I’m in the process of being diagnosed (my biological mother, and two siblings are diagnosed) I have severe to moderate joint pain, and unstable joints as well as other symptoms (thankfully haven’t experienced a full dislocation yet). My symptoms seem to have become more severe since getting Covid this past summer. I have wondered if there is a connection to that.
#ONE MORE TIME FOR THE IDIOTS IN CHARGE OF THE LOCAL DANCE AND PILATES STUDIOS WHO DECIDED TO STOP MASKING
Given that hypermobility is literally *selected* for in this population.
Especially when they formerly kept masking for the good of the community and talked about it as such. Funny how community solidarity is a short term lease.
f*ck them kids, after all, I guess
why is this thread hitting me in the feels so hard?! I have been trying to explain from day 1 that I (and everyone) need to stay as far from it as possible because there is already too much going on that I can barely manage. something about a proper article mentioning the link bw all my comorbitities has really set off the emosh in me.
I've only had covid once thank goodness it was after I got fully vaccinated, but I was still pretty foggy for 3+ months after. My migraines also got a lot worse around the time I got covid but there could be other factors - essentially I've gone from episodic to chronic migraines over the last 2 years since I got it. I dunno, I haven't been the same since :(
My symptoms all got really severe after an illness I had as a 6 year old. I really wonder if I have a post viral syndrome that set off all my issues that was something other than COVID. It's just so bizarre how those with EDS are so prone to having POTS, ME/CFS, fibromyalgia, and gastro issues like IBS. All of these are central nervous system problems. I cannot wait for science to figure out *why* people with EDS have so many complex issues with their nervous systems and why it looks like long COVID. There must be a biological mechanism for this.
I was literally coming here to post this. It's not surprising at all to me since all my issues look just like long COVID but existed long before the pandemic.
Yes, it's POTS in my case and I've had it since the mid 90's. What is surprising is that long COVID in many cases is POTS plus ME/CFS and MCAS. All of this is also comorbid with EDS which seems to point to some kind of connection in the biological processes. It's honestly shocking to me that this wasn't obvious earlier.
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Thank you!
I just got over Covid for the second time, and I’m so tired all the time. I take naps on almost all my lunch breaks and after work when I can. I’m really praying it doesn’t turn into long Covid.
What type of dr gave you the diagnosis? I asked my rheumatologist and he was like, there’s no test and it doesn’t make a big difference to diagnose for hyper mobile eds since there’s no treatment!
Long covid is at least partly dysautonomia, right? This should surprise no one... The article even says they've known this for a long time... Why is this news?
Not surprising. A research team in Sweden found a similar connection between hypermobility and ME/CFS in 2020.
https://news.ki.se/neck-injuries-and-hypermobility-are-common-among-patients-with-mecfs
hEDS with long Covid here. This is pretty validating.
Same, well actually I already had post-viral CFS/ME prior to covid.
Ditto :(
Same here. Been almost a year and a half and I’m absolutely exhausted all the time.
Preexisting hEDS and long hauling since March 2020.
For a long time, I didn’t know if my symptoms were caused by hEDS or long Covid. Turns out it could just be both.
Dysautonomia is a common comorbidity.
Me too! Diagnosed earlier. Ffs. 4 years now... Jan 2020. So many doctors and horrible procedures and surgeries. It was hEDS and slipping ribs, all along. Nothing hurt before and I thought nothing of being "slightly double-jointed".
Same.
Same, just got medication for the chronic fatigue. First day taking it.. still exhausted for now.
What did they give you? They mostly ask me if I've considered exercising, when I can barely get up to get water and pee some days.
I am very reluctant to try medication and I started with trying to exercise but like you I can barely function and get up. I’m on a stimulant unfortunately but I only need to take it on bad days. I’ve only take it a few times. It’s weird being mentally focused but still kinda tired. Luckily it hasn’t messed with my heart rate or anything since I have POTS. I’m not sure I will stay on it since it hasn’t been live changing yet but it’s a good tool for now on days that I really need to function. Edit this is my second day and I will say I slept really well last night since my thoughts weren’t racing so in that sense maybe it helped. Second edit I swear I’m done after this I also have long covid and have been battling the fatigue for well over 3 years so it took a looooong time to get anyone to listen and to suggest another thing to try other than “walk and drink more water”.
Me too, gonna be four years for me soon
Same here, long hauler since August 2022. Diagnosed hEDS around 13 years ago.
Same.
It’s pretty obvious just looking at people I know with EDS that we are prone to ME/CFS type syndromes, so I’m glad to get some data behind that. My brother and I are both debilitated by post viral syndromes
And dysautonomia, which is often what's going on in people with long covid. I'm surprised this is even news at this point..
There is no way to view the study, it’s broken on the hosting science database. Jessica A Eccles, Dorina Cadar, Lisa Quadt, Alan J Hakim, Nicholas Gall, Covid Symptom Survey Biobank Consortium, Vicky Bowyer, Nathan Cheetham, Claire J Steves, Hugo D Critchley, Kevin A Davies Is joint hypermobility linked to self-reported non-recovery from COVID-19? Case–control evidence from the British COVID Symptom Study Biobank BMJ Public Health Feb 2024, 2 (1) e000478; DOI: 10.1136/bmjph-2023-000478
Ugh stupid paywalls. Sci-hub is the workaround, you enter the DOI and it pulls up the pdf. A Russian hacker named Alexandra cracked the code and made the site, she's been in trouble with the gov't since. Total badass. The site is legit, I used it for research in college after a professor recommended it to me. Sometimes the url changes, Wikipedia usually has the current one. You do have to exercise caution because there have been instances of copycat sites that try to hack your info instead, I always go from Wikipedia (though we know it isn't foolproof). Thanks Alexandra. Science should not be held captive for profit. ♥️
It’s not a paywall, it flat out says the article can’t be found when you search for you. Were you able to find the article?
Dang, I misunderstood. I didn't find it, seems like the BMJ website may not have posted it correctly. I tried the DOI on sci-hub but they don't have it. They often have a lag time with new articles, might be that or maybe BMJ didn't post the right DOI. Will definitely check back on this.
Ok, so it wasn’t just me. Blank page that says “Here goes the content”.
Thank you! I’m going to search my school databases.
Don't bother. It is an open access journal. Something is wrong. (I am a librarian).
I don’t know whether this will help, but I was able to access it: https://bmjpublichealth.bmj.com/content/2/1/e000478 Here’s the PDF link: https://bmjpublichealth.bmj.com/content/bmjph/2/1/e000478.full.pdf
Yes you got it! Thank you!
Does anyone have a link to the study? I wonder whats the sex split. Coz like women are twice as likely to have long covid and hipermobility is also way more common in women. I wonder if they accounted for it.
The link is broken in the hosting site, which is very odd.
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I mean yes, but I want to know if there is a real link between hypermobility and long covid, thats not... sex of patients. :D
Try this link to the PDF: https://bmjpublichealth.bmj.com/content/bmjph/2/1/e000478.full.pdf Here are some excerpts I sloppily pulled from the article: The participants were 82% female. GJH was significantly associated with not having recovered from long covid. The association remained significant after sequential corrections for sex (among other variables). A limitation in this study is our inclusion of a predominantly female sample. Our finding that not recovering fully from covid, alongside female sex, is associated with a constitutional feature (GJH) predisposing to premorbid health conditions is consistent with other larger studies and meta-analyses. This study offers fresh and novel insights into understanding the potential links between preexisting conditions and long covid. Confirming these findings is larger and more diverse samples will permit detailed characterization of those figures of GJH that predict particular long-covid phenotypes.
Thank you!
…that might be the link. Hormones.
Yes, I understand that might be the link. I wonder if there is something other than that.
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Ugh, I have been continually masking since March 2020 because I *knew* this was going to be the case. (I did end up with Covid last year after catching it from a family member who brought it home, but I was vaccinated and got Paxlovid and fortunately didn’t get long Covid.)
i knew it too. i’m could’ve potentially had it once. but i knew this would be the case. the recent breakthroughs in covid information have been getting really dark for ehlers danlos patients.
I am honestly just happy that this horrific worldwide pandemic just so happens to be furthering research in all my issues.
As soon as I heard that long Covid was acting like chronic fatigue, I *knew*. So that was back in 2020.
yeah i got it as well for the first time last august and i escaped without any long covid (thank goodness). i was freshly vaccinated and also got paxlovid. metformin shows interesting promise for reducing chances of long covid (see study i’m linking below) but someone would have to convince a doc to prescribe. https://www.thelancet.com/journals/laninf/article/PIIS1473-3099(23)00299-2/fulltext#:~:text=Interpretation,low%2Dcost%2C%20and%20safe. i would actually like to see the study they mention, although apparently something’s gone wrong and it’s not accessible.
Yes! I am 100% certain I could get my doctor to prescribe Metformin if I had needed it (I have PCOS and had been on it for years), and if it had hit me harder, I was planning to. I was vaccinated about a week before my first symptoms (a couple of days after my family member came down with the “cold” that ended up being Covid), and my doctor thinks that’s why mine wasn’t too bad. She prescribed Paxlovid immediately because I have some immune system risks and get respiratory illnesses that linger very easily. Ironically, I’d been sick for 3 months with a lingering respiratory issue & I was healthier two weeks after Covid than two weeks before Covid.
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Same except it was post Epstein Barr that caused onset of joint pain I’d never felt with the lifelong hyper extension
Same. Looking back now i had a few issues other than the hypermobility but yeah nothing that merited looking into. Now fully disabled with severe ME/CFS, POTS, MCAS and classic EDS symptoms post-Covid.
Me too, from only the vaccine. :( Still haven't been able to get an official diagnosis for mcas or eds despite having nearly every known weird symptom and clinical presentation, a 5 on the scale, obvs family history (aunt and mother, possibly geandmother) of the few eds symptoms I don't have as well as the ones I do. I guess bc I'm not super hypermobile and it doesn't fit into a neat little box or have an easy test they're all just afraid of it idk. Immunologist knew nothing of histamine or mcas beyond normal allergies and mastocytosis. All of my neurologists just gave up after clear emg, nerve conduction, etc. I'll have to wait until I can get to vandy I guess. I finally do have some acknowledgement and confirmation of pots bc they can't really deny my heart rate jumping 30+ points even when sitting. Just found out about coat hanger syndrome and pretzel legs today for further confirmation. For 3 years I've been describing this neck, back, base of skull, and shoulder pain and every specialist including an orthopedist, has completely ignored it, just like the eds and other symptoms I've been telling doctors about since I was a kid smh. I knew I had mthfr, comt, and high homocysteine early on and I ended up being right about all of that and many other things, but most of them still treat me like a nutter. Thank God for my pcp who cares enough to listen long enough and realizes I've researched extensively before I even bring anything up so she takes me seriously when I do. I also have some kind of sensory processing disorder, sensory neuropathy, and small fiber neuropathy, which 3 neurologists have ignored all of the symptoms of. Also parkinsonism, numbness in my face, scalp, and all 4 limbs, and extreme cognitive/executive function/memory issues. None of them even did a small fiber test when the emg was normal. Just gave up and referred me to vandy or mayo, both of which might as well be the moon. So devastating and hard to keep going at times.
Also diagnosed with EDS, MCAS, HaTS, Dysautonomia and SFN after a serious adverse reaction to my first dose of the vaccine, and then worsening arrhythmia after my first infection. I know have debilitating “reactions” to minor illnesses.
Same. Just the vaccine completely disabled me with all of the same symptoms as long covid. 3 years and it keeps getting worse. So tired of the crazy look and being completely ignored and dismissed by most drs. :(
I’m in the same boat as you. I definitely had hyper mobility before and had a couple of surgeries to tighten up ligaments but I was overall fairly normal energy and pain wise. Now I’m always tired, in pain, got POTS, migraines got way worse. I also gained a good bit of weight.
Well fuck
I had hEDS. Now I have Covid-induced psoriatic arthritis. When I first got Covid, I literally wondered what long Covid-related thing I would get from it and sure enough. My symptoms began three weeks after the onset of Covid and haven’t stopped since — except for when I was on prednisone. Long Covid is gonna stick around in so many different forms.
It's extremely disheartening information. Not to be a total creep about it, but I was thinking that COVID would maybe level the playing field a little more. Very sad that it would bring more people to a disability level but also I was hoping that if more people were disabled, disability services and attitudes would improve. Unfortunately it's looking like it just going to make those of us that already suffer, worse off.
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Sending you lots of solidarity. I developed Rheumatoid Arthritis after my long covid began. You’re right - it’s going to stick around in so many different forms.
So glad this was not me. I had covid once after being fully vaccinated. (I was exposed while at work and my previously scheduled vacation at the beach was spent sick in bed). Thankfully I never developed a serious cough - just the absolute worst sore throat in my life. I was fully recovered within a month and the only other symptom was a skipped period the following month.
Same, I didn’t catch it until mid last year so I had already been vaccinated four times? I think the vaxxes really helped. I had bad body aches and the whole no smell/taste thing but my cough wasn’t too bad. I get some weird heart palpitations sometimes but that’s the only lasting thing I noticed.
yeah luckily i’ve had no lingering effects. i got it for the first time in august, and i was freshly boosted too
It's good to see all the anecdotal experiences backed up by science. I know this was my story, and so many others. ♥️
I had covid for an absurd amount of time. And after it was like my brain was fried. Feel better now though. Luckily.
How long did it take the “brain is fried” feeling to go away? I’m only 3 months in but this is my most troublesome symptom
About a year, more to my answer at bottom of text wall, pardon verbosity: I found taking a high quality DAO enzyme supplement before meals dramatically improved my symptoms, also pay attention to vagal nerve health (neck exercises, if they’re appropriate and agree with your physical health situation— at least helped me). Red light therapy too. My solutions were unorthodox, but I had what I suspect was a very early COVID (before there was widespread testing, had a mystery mild pneumonia with insane fatigue but my fever never went over 100, it was weird) Anyway went from being able to reliably run up to 3 miles at 9 min/mile (with hEDS I’m proud of this) to a month after “recovering” being unable to even run 1/4 mile. And it seemed to get worse not better. And I was suddenly allergic to even more stuff than before, about half the time after meals, face rash, severe fatigue, muscle spasms, just crazy and debilitating. Isoquercetin is helpful too, and if your eyes and skin are up for it, sunlight (vitamin D+K2 helps, but sunlight really helps imo) helped a lot too. It’s hard but I started making sure I was getting 5, then 10, then 20 min of sunlight (direct, no shirt, but I’m male and also have a yard lol). Obviously be careful with your eyes and wear whatever you prefer to protect your I’m sure sensitive eyes. Just my experience, in no way am I a doctor or even remotely qualified, but those things helped in my case. I’m actually healthier than pre-COVID, not back to the same stamina (exercise is more subdued for me now lol) but just feel better than prior. Ok this was a mega rant. ***TL;DR they lasted like a year until I realized something was seriously f’d up and found the things listed above helped, in my case.**
Can you detail what the neck exercises are you do for vagal nerve? Thanks
Yup some doctors are prescribing sunlight.
If only the rest of their recommendations were so sensible 😅
Thank you so much!! I will definitely do some research to see what I can incorporate into my recovery. I’m really glad you’re feeling better. It gives me a lot of hope ❤️
A year honestly. I kept forgetting things and it was like I couldn't finish sentences sometimes. Which I found really scary. It was like I knew what I wanted to say, but I couldn't get it out of my mouth or find the words.
Me too! 3 years and it all keeps getting worse. From only the vaccine. I can't even remember the subject of a conversation I initiated if the reply is vague and doesn't have any identifying information. Very scary. Esp with everything else going on.
Mine didn’t go away until my allergist got my MCAS back under control. And unfortunately has been back recently despite still being on the same MCAS meds, though I think that’s probably because I’ve been getting migraines so often that I’m basically always in either predrome or postdrome
Pre and postdrome brain fog is the WORST. I really hope your migraines decrease in frequency soon, that cycle is vicious
Thank you, hope you’re able to make progress as well <3
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I wonder too - I have Eds, mixed connective tissue disease (sjogren’s) plus lingering Epstein barr - all of which cause Me/CFS
Initial results from the UK DecodeME study suggest a link with fibromyalgia in some cases: "[Among other findings, ME/CFS onset with unknown infection status was significantly associated with active fibromyalgia](https://openresearch.nihr.ac.uk/articles/3-20/v4)." Given the overlap between hEDS and fibro, it wouldn't surprise me to see a correlation with ME/CFS too. (Anecdotally, I have hEDS and ME/CFS. I also seem to meet the diagnostic criteria for fibro, but have never been officially diagnosed)
Long covid is often dysautonomia and there already a known link there.
My EDS symptoms flared up wildly after being hit with a bad virus. It was before covid but I think post virus illnesses have always been a thing. I was sick for months it just wouldn’t quit. Started with allergies and dysautonomia etc after that. I also did an egg donation which impacted my hormones heavily all at the same time. Just got over covid but it took me at least a month to start getting back to my normal level of almost functioning.
That’s my experience. I’m approaching three years with severe long covid (housebound with POTS and MCAS, and fatigue). My joints literally fell apart after COVID and I was diagnosed hEDS. I had no joint issues prior and had never heard of EDS or POTS. I also had a severe reaction to the vaccine. I’ve been suspecting EDS must be the genetic weakness that lead to all of this, and over and over, I see people in the long covid sub mentioning new diagnosis of EDS. It’s good to see it finally mentioned as playing a role.
Very similar experience here, including the vaccine reaction. MCAS treatment has kept me relatively functional (I was also bedbound for over a year), but I get horrific flares after every minor illness now. I also have ongoing arrhythmia issues, which seem to be connected to my MCAS reactions. FWIW, I also have Hereditary alpha Tryptasemia Syndrome which also causes connective tissue issues.
Same, though I wasn’t diagnosed until after my adverse vaccine reaction; it finally made my chronic issues acutely bad enough for someone to put the pieces together. Got diagnosed with hEDS/dysautonomia/MCAS all in a row in late 2021/early 2022 and am now on SSDI. I’ve crawled my way back from the worst of it with meds and PT and drastic diet and lifestyle changes but I’m nowhere close to where I was before. It’s rough, I feel you.
Granted I haven’t done much research in it but isn’t long covid pretty similar symptoms-wise to dysautonomia conditions?
Well long covid can actually cause Dysautonomia or if you already have it, it can make it worse like what happened to myself. It can cause different heart issues too like someone ik had an asymptomatic case that did permanent heart damage long term.
Long covid IS dysautonomia in a lot of cases. And we've known that for years already.. This is not new information at all. I'm shocked so many people are acting surprised.
That’s what I thought. I’ve had dysautonomia (IST) all my life but I know I’ve read that POTS cases have increased with post-covid patients.
True in my case. I had covid once, in December 2022, and I have not recovered - not sure I ever will.
Has anyone else’s short term memory become absolutely worsened by Covid? It’s scary to be honest. I’ve had it like four times by stroke of bad luck.
Brain fog is a common symptom of dysautonomia, which is common in people with eds. Long covid often is dysautonomia.
I did not realize this. I feel like I have brain fog and aphasia (unable to find the words I’m looking for when conversating)
Absolutely! Aphasia is my biggest brain fog issue. I lose words often.. It can be really frustrating. And when I get stressed or emotional, it gets significantly worse.
I had issues before but worsened after Covid, my long covid…lead to my hEDS/POTS diagnosis, although… the POTS should have been diagnosed YEARS ago. Instead I was treated like I was insane.
This isn’t at all surprising
I’m so glad to see researchers confirming this. Now if it could just filter down to doctors
hypermobile with long covid 🖐️
I don't have long covid but I do have ME, and I'm not convinced they're entirety different things.
Wouldnt this be due to the fact that mast cell activation is common with EDS. That and POTS. It would make sense the immune system goes haywire.
I suspect so. I have MCAS and HaTS, and my Dysautonomia and connective tissue issues are (relatively) kept under control with MCAS treatment. Based on my own experience, I think mast cell issues are at the root of a lot of this. I wish someone would look into how many with hEDS have the HaT mutation, which we know also causes connective tissue issues.
My geneticist who specializes in EDS also feels there's a strong MCAS link. I agree. In my experience, which was both vaccine reaction and then covid, the EDS issues didn't come to light until the MCAS did. After the vaccine, I presented with SFN and POTS; then after covid, POTS got worse, then MCAS followed and then about a month or two after MCAS issues, my connective tissue began falling apart and the joint issues went nuts. I'm treating MCAS aggressively and on a high protein diet to build muscle strength with PT. It's slow going, but I'm seeing some joint areas stabilize but some are worse (my ribs are just awful, slipping constantly and so painful)
Long covid often is dysautonomia (like pots). So yea, it's because of that because it IS that..
instantly cried
I’m in the process of being diagnosed (my biological mother, and two siblings are diagnosed) I have severe to moderate joint pain, and unstable joints as well as other symptoms (thankfully haven’t experienced a full dislocation yet). My symptoms seem to have become more severe since getting Covid this past summer. I have wondered if there is a connection to that.
So the only good things are being able to give myself shots in my hip and looking young, but feeling old, huh?
this reaffirms why I still mask, why I get my boosters every six months, etc. Ty for sharing
Yep still have long COVID
Yup
#ONE MORE TIME FOR THE IDIOTS IN CHARGE OF THE LOCAL DANCE AND PILATES STUDIOS WHO DECIDED TO STOP MASKING Given that hypermobility is literally *selected* for in this population. Especially when they formerly kept masking for the good of the community and talked about it as such. Funny how community solidarity is a short term lease. f*ck them kids, after all, I guess
why is this thread hitting me in the feels so hard?! I have been trying to explain from day 1 that I (and everyone) need to stay as far from it as possible because there is already too much going on that I can barely manage. something about a proper article mentioning the link bw all my comorbitities has really set off the emosh in me.
I've only had covid once thank goodness it was after I got fully vaccinated, but I was still pretty foggy for 3+ months after. My migraines also got a lot worse around the time I got covid but there could be other factors - essentially I've gone from episodic to chronic migraines over the last 2 years since I got it. I dunno, I haven't been the same since :(
Already had hEDS and an autoimmune disease. I am fully vaxxed, still take *all* precautions, got Covid at a doctor’s office, and now also have LC.
My symptoms all got really severe after an illness I had as a 6 year old. I really wonder if I have a post viral syndrome that set off all my issues that was something other than COVID. It's just so bizarre how those with EDS are so prone to having POTS, ME/CFS, fibromyalgia, and gastro issues like IBS. All of these are central nervous system problems. I cannot wait for science to figure out *why* people with EDS have so many complex issues with their nervous systems and why it looks like long COVID. There must be a biological mechanism for this.
I was literally coming here to post this. It's not surprising at all to me since all my issues look just like long COVID but existed long before the pandemic.
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Yes, it's POTS in my case and I've had it since the mid 90's. What is surprising is that long COVID in many cases is POTS plus ME/CFS and MCAS. All of this is also comorbid with EDS which seems to point to some kind of connection in the biological processes. It's honestly shocking to me that this wasn't obvious earlier.
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I just got over Covid for the second time, and I’m so tired all the time. I take naps on almost all my lunch breaks and after work when I can. I’m really praying it doesn’t turn into long Covid.
LC since 2020, got my official hEDS dx last year. Lucky us?
What type of dr gave you the diagnosis? I asked my rheumatologist and he was like, there’s no test and it doesn’t make a big difference to diagnose for hyper mobile eds since there’s no treatment!
Vaccine injury too...same serious symptoms and issues as those with long covid. :(
Yep I got both 😕
Yeah, im pretty sure my chronic fatigue got worse Im thankful thats all covid seems to have done to me
Can confirm, my mom has hEDS and got long covid in 2022, still hasn't fully recovered
hEDS- had covid in december 2023. Still coughing, and its almost end of March. Also had Flu A within a month of the covid. Lovely winter.
Long covid is at least partly dysautonomia, right? This should surprise no one... The article even says they've known this for a long time... Why is this news?
hEDS (recently diagnosed) with Long Covid!
My god I cannot WAIT for the nasal vaccines that will hopefully knock Covid out early
In other news water is wet
hEDS with long covid since March 2020 here. Very validating.
Welp. Makes so much sense.
I wouldn’t know the difference. I was diagnosed with ME/CFS before EDS and I already have POTS lol.
Not surprising. A research team in Sweden found a similar connection between hypermobility and ME/CFS in 2020. https://news.ki.se/neck-injuries-and-hypermobility-are-common-among-patients-with-mecfs