"Joint Hypermobility and CFS"

I believe my joint hypermobility contributed to being sick.

 

I have joint laxity and OI.

 

Hmm, this "smells" like Ehlers–Danlos Syndrome to me...

 

which same EDS would include "Dr Diana" Driscoll who has some interesting videos on youtube and her prettyill.com. She incorporates a focus on histamine as well. An optometrist, IIRC, with some authorship of published papers on EDS.

as for me, I'm the exact opposite jointwise - also tend toward hypertension not hypo, have good exercise and alcohol tolerance, etc.

 

I found this essay a while ago after being diagnosed with EDS myself. I wonder if I have EDS or "just" the CFS version of hypermobility. Or if it really matters? I've never followed up on the diagnosis which was not made by an EDS specialist as it didn't seem like there were really any treatment options.

I also found the Driscoll information on prettyill.com to be interesting...

 

Well then I don't have CFS, although I have some mobility/laxity within my ribcage only - one slipping rib and a gap in the sternum/xyphoid, the latter though was caused by injury/trauma.

 

I don't have any hypermobility, but do have PEM.

 

Hypermobility is also associated with being susceptible to mold issues - genetic pre-disposition.

 

I don't have joint hypermobility, and as a one-time gymnast, I think it would have shown up if there was any tendency in that direction. My daughter, who also has ME/CFS, does have joint hypermobility, though. It will be interesting to see what the genetic connection between ME/CFS and hypermobility is.

 

I wonder what is the relationship to having hypermobile joints and developing a post traumatic injury fibromyalgia? I've had ME for over 25 years but only developed FM after a serious accident. The rheumatologist I saw mentioned that my joints were hypermobile. Before ME I'd always noticed how flexible I was so that was not surprising.

 

I am mildly hypermobile.

 

Dr hyde mentions Enhlers Danlos Syndrome in his ME definition. EDS comes with chronic fatigue.This is what led me to getting dx with the hypermobile form (which like all forms is inherited). Joint Hypermobility Syndrome is not inherited.

I know Pocincki sees people with EDS but was it is not clear to me is what he thinks a CFS patient is. Certainly the complications from EDS - pain, fatigue lead people to assume CFS if they do not understandthere are other issues like PEM.

The interesting thing is that allergy goes with EDS and prior to CFS I had loads of allergy symptoms which i aasumed had gone away .......but had propably morphed into something else.

I suspect that there are people like me with EDS/POTS/ME.......with more severe symptoms than those mentioned by Peter ROwe. It could be that this is a specific condition that one day will have its own name.

Perhaps earlier dx of EDS may have saved me from developing ME (but not POTS). It certainly has helped in understanding the chronicity of the pain.

It seems that certain doctors attract certain types of patients. I found Pocinki interesting to listen to on his theories about sleep dysfunction in EDS patients. It seems these are the people he attracts to his practise which is a general medicine practice.

 

Such generalisations make me skeptical, and I've seen a lot of them in CFS related articles.

The article attributes the CFS-like symptoms and autonomic arousal to the muscles under constant strain, could this suggest that such symptoms in CFS are caused or perpetuated by the body being under strain from something?

Personally, my joints on the test list are straight or 90 degrees. At onset my neck and hamstrings became stiff and inflexible, although this has improved, I am still very inflexible when trying to touch toes. However, IIRC a physiotherapist once commented on how flexible or unusual my back was, so perhaps the range of motion has been shifted.

I do know someone with CFS-like symptoms (but not full CFS criteria) who has hypermobile joints and complains about them, I should tell them about this article. Also, in the comments section, Kim McCleary cites two studies which demonstrate a strong association of CFS with hypermobility.

 

yes I agree biblio - stiffness now seems to be part of EDS too - either too loose or too stiff - and may who are flexible when young stiffen up with age - but this article goes back a ways too - there is more recent and current research to follow




Ally

 

yes, some EDS doctors think that people who were flexible when young, but not flexible as adults, yet still have other signs and symptoms of EDS, probably have EDS. However new guidelines have not been written so that diagnosis cannot be officially made as of yet, in such patients. Some seem to have loose joints but tight tendons.

They might be waiting for more genes, but I'm told it's difficult to get research money because the forms of EDS not yet linked to genes are too difficult to diagnose (too many symptoms, so it seems too nebuous to funding committee), or something like that (I don't recall exactly). Like in ME/CFS, most EDS patients are undiagnosed. Most doctors simply have no idea how to recognize the condition.

I'm also told that if one has a hereditary connective tissue disease like EDS, it's then easier to get an acquired connective tissue disease (perhaps including ME?)

This may be controversial here, but some EDS docs think that the kind of fibro which cannot be cured by changing one's diet, treating candida, etc. (which would all be something else), is EDS (thus, fibro = misdiagnsed EDS, in this model).

EDS, as far as I can gather, expects a next-day exercise exacerbation of joint pain (supposedly if the joints were not properly supported during exercise--they say swimming, for example, should be ok, but walking would not). Since this is an immune reaction, I wonder if malaise would be expected as well. However I don't hear of cardiopulmonary problems being expected.

 

I have pretty solid joints, so I have no personal insight into joint hypermobility, but what I cannot understand is why it is difficult to diagnosis this. Can't you just pull your fingers back, and if they bend right back, that's a joint hypermobility diagnosis there and then. Or is it more complex than that?


If I place my hand flat on a table, palm facing down, and then try to bend my fingers back using my other hand, I can barely get to 45º. What angles can other people here get to? (I am referring to the angle between the table and the bent back fingers).

 

When I was a kid I could bend my pinkies back to touch the back of my forearm, though that involves the wrist bending back as well. Now at 35, my pinkie goes to 90 degrees pretty easily if I keep the palm of my hand flat on the table, even with chronic swelling.

I can easily stand with my legs straight and bend over with my hands flat on the floor. My legs bow backwards a bit at the knee if I have my feet braced against a wall while sitting down - enough to be noticeable and slightly creep people out. Also if sitting on the floor I can pend forward until my torso is nearly flat on the floor.

And I don't do stretching exercises or anything, and am pretty overweight My mom is also fairly flexible, but less so than I am.

 

That's incredible, Valentijn. Even after years of doing yoga (before getting ME/CFS), I could never get anywhere near that level of flexibility. My mother actually had to have an operation when a teenager to stretch the hamstrings in her legs, because they were too tight. I think I must have inherited this tightness to some degree, as every muscle, tendon and ligament in my body feels much more like being too tight, rather than too loose.

 

They only use the little finger or the thumb for that test. I hit 90º with the little finger (the other 3 fingers are more like 70-75º). I can almost touch my thumb to my forearm.

Have a few other symptoms of hypermobility, like serious chronic TMJ problems, and frequent back pain.

My body and the way it moves have also been described more than once as somewhat loose and floppy, and I have some unusual body proportions, such as palm to finger length.