Question about EDS

[Strawberry]

I do 100% believe we can get collagen issues in older age, but I don’t know if this has anything to do with EDS. Absolutely viruses can create EDS hyper mobility issues, but actual EDS? I’ll leave that to the scientific.

For air hunger issues, I would just say go to bed and rest. Also, I think my best friend hadCOVID early on, and she got huge help from a pill that helps smokers- which she is. Here is a link.

https://smile.amazon.com/dp/B07XM8G...olid=1KHDKRUB9R0U1&psc=0&ref_=lv_ov_lig_dp_it

It says it’s currently unavailable, but there might be similar products if you search.

Best of luck and at least have faith that scientists are interested in COVID long haulers. There is hope.

 

[MikeC]

Thank you Strawberry. I appreciate your help.

 

[RobeAnJa]

Unfortunately I have no advice as I’ve had this 25 or more years, depending on symptoms.

Did your collagen degradation start at onset of ME/CFS or later?

Best of luck and at least have faith that scientists are interested in COVID long haulers. There is hope.

I realise that as a ME/CFS sufferer you think that any interest in long haul covid is more than what you are used to see for ME/CFS. But I think that there is not much interest in us long covid sufferers sadly. Most scientists are working with the acute illness or the vaccines. I don’t think our long lasting complex issues are very attractive to work or invest in.

 

[Strawberry]

Did your collagen degradation start at onset of ME/CFS or later?

I didn’t know it was collagen degradation until scientists said it recently. Also, I am not even sure what to call my onset. Do I call onset when I became chronically ill? Or earlier when I had muscle issues? I’ve been hyper mobile all my life. But I’ve seen so many people become hyper mobile, or become severe and have it diagnosed as CCI/AAI issues... There is a connection somewhere.

 

[RobeAnJa]

I didn’t know it was collagen degradation until scientists said it recently. Also, I am not even sure what to call my onset. Do I call onset when I became chronically ill? Or earlier when I had muscle issues? I’ve been hyper mobile all my life. But I’ve seen so many people become hyper mobile, or become severe and have it diagnosed as CCI/AAI issues... There is a connection somewhere.

I was thinking when you got ill or your ME/CFS started. But it seems like you had some problems before. I’ve had no problems all my life until now. Not hypermobile at all. But now it feels like I’m falling apart only seven months since covid.

 

[RobeAnJa]

Do have muscle wasting and weight loss too? @MikeC @Nasaud

 

[MikeC]

@RobeAnJa

No real weight loss although the fatty tissue in my hands and wrists disappeared. No doctor has an answer to what is happening to me. I suspect EDS, dysautonomia and ME/CFS.

 

[RobeAnJa]

@RobeAnJa

No real weight loss although the fatty tissue in my hands and wrists disappeared. No doctor has an answer to what is happening to me. I suspect EDS, dysautonomia and ME/CFS.

I’m losing fatty tissue too. Disappearing under my heels and around spine, knees and elbows. My hands are boney. It’s scary. I lose muscle mass. I eat good and am able to go for gentle walks and even light exercise every day, but the muscle wasting just keeps going.

 

[dyllanmurphy]

Same exact thing happened to me. Completely healthy, no history of joint dislocations, extremely active as a kid, athletic - all the way going into my mid/late 20's - at that point I was very fit / muscular. Lost some muscle mass first, then joint inflammation, urinary frequency, then joint pain / weak joints, then lost firmness in muscles, then cognitive problems, and then connective tissue/collagen issues last, including thin skin, easy bruising, etc.

I fit the criteria for EDS Hypermobile type, but I have a hard time believing that EDS can have a sudden adult onset like that.

My symptoms were reversed on doxy and cefdinir for a period, before slowly relapsing after stopping the meds.

Could be an infection triggering a catabolic state (causing your body to use up protein and collagen), or an infection directly causing collagen degradation (like Lyme). Or it's possible the doxy inhibited the inflammatory chemicals that cause this degradation (cytokines, MMPs).

Still trying to find a diagnosis. Funnily enough, fatigue has never been an issue for me.

 

[RobeAnJa]

@dyllanmurphy That’s interesting. Thanks for sharing!
How long ago did it start for you? Do you have dysautonomia?
I have POTS and right now I’m mostly investigating MCAS. I don’t have fatigue or PEM but my POTS and muscle weakness limit me very much.

 

[dyllanmurphy]

@dyllanmurphy That’s interesting. Thanks for sharing!
How long ago did it start for you? Do you have dysautonomia?
I have POTS and right now I’m mostly investigating MCAS. I don’t have fatigue or PEM but my POTS and muscle weakness limit me very much.

5 years ago..

I've been evaluated for POTs and I don't have that, but I have a lot of the symptoms associated with dysautonomia.

That video you posted on the Pentad was very helpful and the whole process seemingly mirrored what I want through.

The causes from that video are still vague. The resolution is also vague. But it does seem like a much more accurate descriptive account of the bodily processes involved in the degradation I'm experiencing, and there are some thoughts for palliative treatment so I guess that's good.

What I'm wondering is whether the "cause" of my condition is due to an active infection or some ongoing "insult" or instead whether it's due to something that can't be changed / cured (like damage to the nervous system).

 

[RobeAnJa]

That video you posted on the Pentad was very helpful and the whole process seemingly mirrored what I want through.

The causes from that video are still vague. The resolution is also vague.

I agree the video is interesting, but the theory is not complete and most of it seems to be a theory that has not been researched. I treat myself with MCAS protocol (antihistamines, Quercetin, vit C and some other stuff) and feel a little better. It’s not doing anything about the collagen or muscles though.

What I'm wondering is whether the "cause" of my condition is due to an active infection or something else

My Me/CFS doc thinks I have an active infection. I got corona virus in april and he thinks its persisting or reactivated EBV. I’m seeing him again next week. I might suggest trying Doxy together with an anti viral. It was interesting that you mentioned Doxy, I read about it before and was planning on trying it some time.

 

[dyllanmurphy]

I agree the video is interesting, but the theory is not complete and most of it seems to be a theory that has not been researched. I treat myself with MCAS protocol (antihistamines, Quercetin, vit C and some other stuff) and feel a little better. It’s not doing anything about the collagen or muscles though.



My Me/CFS doc thinks I have an active infection. I got corona virus in april and he thinks its persisting or reactivated EBV. I’m seeing him again next week. I might suggest trying Doxy together with an anti viral. It was interesting that you mentioned Doxy, I read about it before and was planning on trying it some time.

I wouldn't use an antibiotic without a very good reason. A weak/leaky gut, which might be induced by antibiotics, seems like it's a major part of this "pentad" (and in general, if you think of the gut as a balance of beneficial bacteria pumping out vital chemicals, and bad bacteria pumping out pro-inflammatory compounds, you can see how an upset of this delicate ecosystem can lead to adverse outcomes).

In short, if the underlying problem isn't fixed with the treatment, the use of doxy will have made things worse in the long run.

 

[RobeAnJa]

Could it be that RAAS (renin-angiotensin-aldosterone system) got dysregulated when this happened to us? In May, about a month after my covid, I was convinced I had diabetes. Extreme thirst and urinated even more. Maybe I lost fluids from all these tissues because of dysregulation of RAAS causing low blood volume and fluid loss? Maybe it’s not sudden onset EDS or connective tissue disorder, but instead that our tissue is in a ”dehydrated” state.

https://www.healthrising.org/blog/2...onic-fatigue-syndrome-pots-renin-aldosterone/

https://www.healthrising.org/blog/2020/10/10/ras-bradykinin-covid-19-chronic-fatigue-syndrome/

https://www.sciencedirect.com/science/article/pii/S1568997220300823

 

[dyllanmurphy]

Could it be that RAAS (renin-angiotensin-aldosterone system) got dysregulated when this happened to us? In May, about a month after my covid, I was convinced I had diabetes. Extreme thirst and urinated even more. Maybe I lost fluids from all these tissues because of dysregulation of RAAS causing low blood volume and fluid loss? Maybe it’s not sudden onset EDS or connective tissue disorder, but instead that our tissue is in a ”dehydrated” state.

https://www.healthrising.org/blog/2...onic-fatigue-syndrome-pots-renin-aldosterone/

https://www.healthrising.org/blog/2020/10/10/ras-bradykinin-covid-19-chronic-fatigue-syndrome/

https://www.sciencedirect.com/science/article/pii/S1568997220300823

Among my first symptom was frequent urination. I think the video you linked on the "pentad" goes into this, and the description sounded plausible. Blood pools in the lower half of the body, then the kidneys think there is a fluid overload and start functioning to expel fluids in the body, leading to hypovolemia.

This could explain the urination that occurred early in our conditions. And what caused this? It's questionable, but the doc suggests some sort of vagus nerve injury.

Licorice root addresses this fluid imbalance, I'm planning to get on it very soon myself. Ill keep you all posted.

 

[MikeC]

What do you guys score on the Beighton?
https://www.ehlers-danlos.com/assessing-joint-hypermobility/

A 4 or higher out of 9, is considered to be a good indication of hypermobility syndrome or Ehlers-Danlos Syndrome.

Mine is a 5. I still think it's weird how I went from healthy to sick with what appears to be EDS along with dysautonomia and ME/CFS. Then again not much is known about EDS so maybe it is possible for it to occur at any point in life.

 

[RobeAnJa]

What do you guys score on the Brighton?

I score a solid 0 when I do this at home now. I’m going to get an EDS evaluation at a ME/CFS clinic in two weeks. It’s standard for all their new patients.

Then again not much is known about EDS so maybe it is possible for it to occur at any point in life.

I found a pretty interesting presentation, I think it’s by Dr Pradeep Chopra who says ”EDS is not a disease. It’s a form of the human body.” Dr Chopra would probably say that EDS can occur at any time in life.
https://www.ehlers-danlos.com/pdf/2018-EDS-Webinar-Chopra.pdf

 

[MikeC]

Thanks RobeAnJa. I might have to look into chiari and cci. It makes sense being hypermobile and all.

 

[RobeAnJa]

I watched that Pentad video again and it’s freaking me out. That spiral is nasty. And he says stuff like ”it’s all falling apart for them”. Are you guys getting worse with time? @dyllanmurphy ? It has only been a few months but I can’t imagine feeling like this or worse for the rest of my life.

 

[MikeC]

How bad are things for you right now?

For me, it feels like my life is over. I don't like to think of the future anymore. My body feels so heavy that I'm in lying down from about 12 or 1 pm until bedtime. If I exert myself beyond my small limit, I get added air hunger with increased heaviness.