What’s the theory behind the connection between Ehlers-Danlos Syndrome (EDS) and ME/CFS? (Other than CCI/AAI)

[RobeAnJa]

I now suspect I had EDS all my life without knowing. I will get tested for it in a couple of weeks. I will also get an MRI of my brain and neck.

I got sick from covid in april and I’m trying to understand the connection between EDS and ME/CFS. I have POTS now and I know about the connection between POTS and EDS (and MCAS). I have also read about CCI and other spine and brain conditions. But I can’t find much research or other information about EDS and ME/CFS.

I don’t think all who have EDS and ME have it from ”mechanical” problems in spine and/or brain? Why do people with EDS have an increased risk of getting ME/CFS?

 

[MikeC]

If I were to guess, it's because with EDS, the body is constantly using up energy to keep everything intact and because of this we are in a constant state of fatigue.

 

[xebex]

I don’t think there much science proving anything yet but My understanding is that a virus causes breakdown of collagen creating an acquired EDS state, lax ligaments in neck and spine cause down pull on brain stem and triggers symptoms, if you already have genetic EDS you’re going to be affected much more aggressively. I believe this is just a part of the picture though. I think EDS is a constant stressor on the body which eventually causes a CNS and/or ANS dysfunction in genetically susceptible people. I believe over time you can develop the collagen breakdown resulting in POTs due to lax collagen in blood vessels and or spinal instability. I think depending on where the majority of collagen breakdown occurs could result in the different subtypes we see.

 

[RobeAnJa]

I don’t think there much science proving anything yet but My understanding is that a virus causes breakdown of collagen creating an acquired EDS state, lax ligaments in neck and spine cause down pull on brain stem and triggers symptoms, if you already have genetic EDS you’re going to be affected much more aggressively. I believe this is just a part of the picture though. I think EDS is a constant stressor on the body which eventually causes a CNS and/or ANS dysfunction in genetically susceptible people. I believe over time you can develop the collagen breakdown resulting in POTs due to lax collagen in blood vessels and or spinal instability. I think depending on where the majority of collagen breakdown occurs could result in the different subtypes we see.

Yes, that’s a very good summary of what I have managed to read so far. Thank you.
My POTS came about three weeks after covid infection. That’s very short time. I’m not sure if the collagen breakdown could be that fast. I certainly have had seriuos collagen breakdown, it’s unreal, so it’s giving me problems now for sure.

 

[pattismith]

EDS is comorbid with immunodeficiency and auto-immunity, these may be factors predisposing for ME/CFS?

 

[leokitten]

I don’t think there much science proving anything yet but My understanding is that a virus causes breakdown of collagen creating an acquired EDS state, lax ligaments in neck and spine cause down pull on brain stem and triggers symptoms, if you already have genetic EDS you’re going to be affected much more aggressively. I believe this is just a part of the picture though. I think EDS is a constant stressor on the body which eventually causes a CNS and/or ANS dysfunction in genetically susceptible people. I believe over time you can develop the collagen breakdown resulting in POTs due to lax collagen in blood vessels and or spinal instability. I think depending on where the majority of collagen breakdown occurs could result in the different subtypes we see.

I can’t find what I’d read long ago in the literature, but I remember it’s not the viral infection per say but the aberrant and prolonged immune response to the viral infection that we get in the beginning that depletes collagen and can produce an EDS-like state for some.

I vividly remember getting way more flexible ligaments after the acute viral infection which triggered ME. It was really weird (on top of everything else). Over a long time it came back to more or less normal (like the ligaments slowly built up again) and I was lucky I didn’t permanently fall into an EDS-like state like others with ME have.

 

[xebex]

I can’t find what I’d read long ago in the literature, but I remember it’s not the viral infection per say but the aberrant and prolonged immune response to the viral infection that we get in the beginning that depletes collagen and can produce an EDS-like state for some.

yes that makes total sense

 

[MikeC]

If the the acquired type of EDS is caused by an infection, is it possible for the collagen issues to return to normal at some point?

In my case it's looking more like full blown EDS even though I was asymptomatic for all of my life until now.

I have all of the classic signs like highly elastic skin, easy bruising, hypermobile joints, blue/grey sclera, piezogenic papules on heel upon standing and gorlin sign. I also score a 5/9 on the Beighton. Anything 4 or more is positive for hypermobility.

 

[RobeAnJa]

In my case it's looking more like full blown EDS even though I was asymptomatic for all of my life until now.

This is me too. I think my mother is the one that has it. Asymptomatic all her life like me, until Covid unmasked it for me.

 

[xebex]

If the the acquired type of EDS is caused by an infection, is it possible for the collagen issues to return to normal at some point?

In my case it's looking more like full blown EDS even though I was asymptomatic for all of my life until now.

I have all of the classic signs like highly elastic skin, easy bruising, hypermobile joints, blue/grey sclera, piezogenic papules on heel upon standing and gorlin sign. I also score a 5/9 on the Beighton. Anything 4 or more is positive for hypermobility.

hmm this is hard to say, but based on my experience and IF the theory is true then YES - so far i seem to have a relapse remitting type of ME, it first started wth that classic bobble head feeling that EDSers with CCI get- i couldn't lift my head up, but over time it got much better and i had very mild CFS for about 6 years - i then got hit by moderate severe, and then again over time i improved, now, again i'm in an almost severe state but this time the instability seems to be in my thoracic spine due to an injury which probably made everything worse - i'm starting to lose hope that it will clear up though

 

[MikeC]

xebex, were you ever evaluated for EDS? I'm currently waiting for insurance approval to be seen at a genetic clinic. I get the heavy feeling in my head too. Sometimes it feels like my whole body is made of lead. It starts out sort of ok in the morning but worsens as the day goes by. Any bit of exertion brings back the heaviness feeling almost immediately.

 

[bensmith]

Not sure how to quote but yes i think you are right @xebex . I think i had eds before cfs, and now have almost instantly developed t/o/g nueroalgia. I always had a cranky neck but nothing like this.

Sorry @MikeC thats crappy : (

 

[xebex]

xebex, were you ever evaluated for EDS? I'm currently waiting for insurance approval to be seen at a genetic clinic. I get the heavy feeling in my head too. Sometimes it feels like my whole body is made of lead. It starts out sort of ok in the morning but worsens as the day goes by. Any bit of exertion brings back the heaviness feeling almost immediately.

No I haven’t been evaluated I don’t score any points on the Beighton hyper mobility test however I do believe that The immune issues in ME causes some kind of collagen breakdown, you can see it in my skin. I believe it causes a very “subtle” change to blood vessels too which means we over constrict and dilate causing many of the symptoms we suffer.

 

[MikeC]

I had a skin biopsy come back positive for small fiber neuropathy. It's also highly likely that I have EDS. If the SFN is being caused by EDS then there is no way to reverse it. Both of these will progress with age so my life is pretty much over.

Right now I'm waiting for a genetics clinic to call me for eds evaluation.

That's good that you don't score anything on the beighton. You most likely don't have eds. Yeah, I think ME can cause collagen breakdown.

 

[dyllanmurphy]

Just a guess, but EDS like symptoms may happen as a result of the catabolic state caused by an underlying dysfunction / infection, and these also might cause a negative spiral of symptoms like fatigue and such through other mechanisms.

 

[bensmith]

Who is checking you for eds @MikeC ? What kind of doctor. Of its a genetic clinic? Never heard of that kind of doctor.

and anybody here, i guess the only treatment is surgery blood thinners and physical therapy?

i have iih, but prob need to strengthen my neckZ. Not strong enough for pt currently though.

 

[xebex]

@bensmith there is a Facebook group called me/cfs + brain and spine and then that links to other groups that might help.

 

[MikeC]

I will be seeing a geneticist at UC Davis. I think the first step is to see a rheumatologist. If they suspect EDS then they can refer you to a geneticist for further evaluation.

You can try testing yourself for hypermobility.
https://www.ehlers-danlos.com/assessing-joint-hypermobility/

 

[bensmith]

Ty guys maybe tested pos for 2. Thats good.

do you test pos on them @MikeC

thanks @xebex ill get in there eventually waiting atm.

 

[MikeC]

You're welcome. I scored 5 out of 9 points which is considered positive for hypermobility. EDS is unlikely with less than 5 points.