Question about EDS

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Does anyone know if EDS can occur at any age? Before becoming ill this year, I lived an active life doing things like mountain biking, hiking and jogging. I never experienced dislocations which I hear is common in EDS. Ever since I got sick, I've been noticing symptoms of eds such as stretchy skin, hypermobile fingers, muscle tone becoming flaccid, bluish tint in eyes, and easy bruising.

I was under the assumption that eds is something that is inherited however I was symptom free for my whole life up until this year. Can EDS occur spontaneously like this or are there diseases that can mimic eds?
 
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I’m a covid long hauler with exactly the same experience and questions as you.
We have discussed it some in this thread.

I have asked in some Ehlers-Danlos syndrome-groups if they have heard of people being fine for over 40 years and then a virus reveals EDS. Some say it’s impossible because EDS is genetic and you usually have problems early in life. Others say it could be possible. Another theory is that the virus leads to breakdown of collagen to a state similar to EDS but it’s not ”true” EDS.
Hypermobile EDS does not have a genetic marker. All other forms do. So that opens for a discussion about what ”true” EDS is.

Elevated hydroxyproline, wich indicates degradation of collagen, was reported at the 2018 Stanford Symposium on ME/CFS. It seems that finding has not been published yet. (Image from Jen Breas twitter)

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That's an interesting theory. I never had covid unless I was asymptomatic; however, I did have a bunch of blood tests recently, some viral related. The ones that came back abnormal are below:

Blood results:
Natural Killer Cells, Functional 12 Normal (this surprised me because this is usually low with CFS)

Abnormal
CD4/CD8 Ratio: 0.84 Low
Sex Hormone Binding Globulin 58 High
Mycoplasma Pneumoniae IGG 2.96 High
EBV IGG 73.30 High
HerpesVirus6 IGG 1:40 High
Varicella Zoster Virus IGG 450.50 High
Creatinine, random urine 18 Low

Lyme and co-infections
Quest - All negative
Igenex TBRF Borrelia immunoblot IGM Indeterminate, IGG Positive
Igenex Babesiosis ducani IFA IGG 80, <160 may or may not suggest active infection
Bartonella Quintana Quest and Igenex negative
Galaxy triple draw reactive on 1 of the samples
 
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Hi,

I am in the same bucket, I have been seen by Doctor Marco Castori a connective tissue disease specialist see report here:

https://forums.phoenixrising.me/threads/romanian-with-cfs.81794/#post-2305477

I quote him from the consultation in my case "We only know about 10% in genetics at the moment hypermobility by itself is not representative for diseases, hypermobility is present in 10-20% of the normal population for a hereditary connective tissue disorder you need to have a lot of things and a clinical history that is points out to this".

Kind regards,
Nasaud
 
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I noticed that symptoms like a heavy/sluggish feeling body, bouts of extreme tiredness, random aches in forearms/wrist and around the shoulder blades and air hunger all started happening when the skin changed. It became thinner and stretchy. Also when I attempt to exercise my muscles even for a little, they become exhausted quickly. A "feel the burn" feeling in the muscles you get when lifting heavy weights which takes longer to go away than before I became sick. It also seems like I lost the fatty tissue around my hands, fingers, wrists and feet.

I wonder if eds can be asymptomatic and then all of a sudden become problematic later in life or if CFS causes issues with muscle tissue and collagen or if a bacteria/virus can mimic EDS and CFS.
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Elevated hydroxyproline, wich indicates degradation of collagen, was reported at the 2018 Stanford Symposium on ME/CFS. It seems that finding has not been published yet
I'm personally convinced that collagen has gradually broken down in my body over the decades of suffering with ME. Its a key- result. So then I believe that leads to further- declines as all the ligaments are weakening, deep tissues are degraded. Connective tissue also, which then is not transmitting electro- magnetic information correctly. Subcutaneous fat missing as well.
 
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Thanks for sharing the video. It was very informative. It's a shame these types of conditions are not well recognized within the medical community because if they were maybe we'd have treatments to at least relieve some symptoms. The thought of having to feel this way indefinitely makes me depressed.
 
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It is known that COVID activates mast cells. The latter can release MMP-2 and MMP-9 which degrades collagen. Mast cells are located in connective tissue.
Yes, I’ve been trying to calm my mast cells since July. It’s not easy.
 
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I noticed that symptoms like a heavy/sluggish feeling body, bouts of extreme tiredness, random aches in forearms/wrist and around the shoulder blades and air hunger all started happening when the skin changed. It became thinner and stretchy. Also when I attempt to exercise my muscles even for a little, they become exhausted quickly. A "feel the burn" feeling in the muscles you get when lifting heavy weights which takes longer to go away than before I became sick. It also seems like I lost the fatty tissue around my hands, fingers, wrists and feet.

I wonder if eds can be asymptomatic and then all of a sudden become problematic later in life or if CFS causes issues with muscle tissue and collagen or if a bacteria/virus can mimic EDS and CFS.
View attachment 40403 View attachment 40399 View attachment 40400 View attachment 40401 View attachment 40402

I am almost the same like you I think my skin is more lax I had 119kg now I have 95kg I had 83kg the measures are irrelevant without seeing a connective tissue disease specialist.

We can be very bias about ourselves and subjective
 
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The only thing I've tried so far is a glass of white tea daily. I heard it can help but I don't think it's helping in my case. Skin is still stretchy and elastic.

I don't even know what type of eds I have, hopefully not veds. Btw, can all forms of eds cause a heavy body & exhausted feeling along with exercise intolerance with occasional air hunger?
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Strawberry

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Yikes! You have all the classic signs. While I was diagnosed 35 years ago as hyper mobile, I do think it’s turned into vascular. I won’t even call it EDS as I can’t get tested, but I think you’ve nailed it. Collagen peptides helped my hair and nails a little bit, but nothing to write home about. So in my opinion, another worthless diagnosis. Haven’t heard anything that might help.
 
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Yikes! You have all the classic signs. While I was diagnosed 35 years ago as hyper mobile, I do think it’s turned into vascular. I won’t even call it EDS as I can’t get tested, but I think you’ve nailed it. Collagen peptides helped my hair and nails a little bit, but nothing to write home about. So in my opinion, another worthless diagnosis. Haven’t heard anything that might help.
Do you know if EDS can spontaneously occur late in life? I ask because I lived a symptom free and active life for many years. It wasn't until earlier this year when things started going downhill.

Oh and is there anything that you know of that can help with the air hunger? It's on and off throughout the day. Some days I feel somewhat normal but it's been particularly bad for the last 3 days. I'm not sure why. My pulse oximeter shows 97% yet I can't shake the feeling of air hunger when it hits. The only time I feel 100% healthy is in my dreams :(.
 
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Strawberry

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You sound like a COVID survivor/longhauler. Unfortunately I have no advice as I’ve had this 25 or more years, depending on symptoms. I get air hunger when I’ve massively overdone it. I don’t know your story so can’t say much else at the moment!

Hope you get answers, but if it’s short term, you have a better chance of getting through this than me.
 
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I'm sorry you have been dealing with this for so many years. I truly feel for everyone here who have to face these horrible diseases daily.

I was doing somewhat ok with very little air hunger for the last few weeks. Don't know if this is coincidence but after having an ACTH test by my endocrinologist not too long ago, my symptoms seemed to have become worse. Perhaps I overdid things earlier this week as well. I hope one day, better treatments will be a reality for all of us.