Other connective tissue illnesses (beside EDS) w CFS?

[kangaSue]

do how do you get properly dx w EDS if you have "contrary" results?

I only know my way around the basics of EDS I'm afraid. This is an informative article on the different types of it though;
https://www.ehlers-danlos.com/eds-types/

 

[ellie84]

do how do you get properly dx w EDS if you have "contrary" results? ie, most ppl are hypermobile... is there a definitive blood test or other type of test (genetic)? what genes are associated w EDS? can i look them up in 23andme?

also, does a rheumatologist treat EDS?

thanks

I can tell you what I know.
All types of EDS, except hypermobile type, have an identified genetic marker. So according to clinical clues you could get a blood test to check for those. You can't see this from 23andme data. For hEDS the diagnosis is only clinical and based on the diagnostic criteria that you can see in the checklist someone linked to you before: https://www.ehlers-danlos.com/wp-content/uploads/hEDS-Dx-Criteria-checklist-1-Fillable-form.pdf . This has to be done by a physician expert in EDS, usually a geneticist, but not always. Here they explain how to assess for hypermobility: https://www.ehlers-danlos.com/assessing-joint-hypermobility/ . Then, as you can see from the criteria checklist, they can check for past hypermobility, if you are more stiff now than before. You can end up stiff from hypermobile, because the muscles try to do the work for ligaments (if ligaments are lax they can't be strenghtened, muscles can) and end up permanently contracted. So there the assessment is based on your past level of mobility. There are also a lot of other symptoms to hEDS (see criterion 2), so if you have hypermobility but don't have those other symptoms you could get a diagnosis of hypermobility spectrum disorder. All this information and more is on the Ehlers Danlos Society website.
There is no cure for EDS so there is no specialist that can "treat" EDS, you "simply" go to each specialist you need depending on the comorbidities that you happen to have (everyone is different). Although a reumathologist can be someone you refer to if you have EDS. For hypermobility you could be advised to do physical therapy. Appearently often muscles are hypotonic in EDS. Strenghtening them, especially joint stabilizing muscles, should help them do the work instead of ligaments without becoming stiff. It should also relieve fatigue often associated with joint hypermobility.
On youtube a lot of people with EDS post videos explaining life with this condition. For example, one is Amy Lee Fisher.
Someone correct me if I said something wrong.

 

[Pearshaped]

@ebethc are you talking about muscle stiffnes or other stiffnes re soft tissues? Check sklerodermia if its not only skeletal muscles.

 

[lenora]

are there any other connective tissue illnesses associated w CFS besides EDS?

cc: @JenB

Hello ebethc......I have 2 neurological illnesses (Syndromes...you know a collection of symptoms...I get so tired of hearing that!) both completely unheard of at the time. This would have been in the late '70's early '80's. One, Syringomyelia has been known about for centuries but since no one could see inside the spinal cord, cysts formed, pressed on the nerves which expanded to the muscles and the person became a quad, then later died. Yet no one knew why until an autopsy was performed. The MRI saved many lives including mine.

Next was Arnold-Chiari Malformation. Today it's fairly common, but then it wasn't. You can have SM (paragraph above) from say, an accident, but if you have ACM you always have SM because it's a genetic problem. The surgery I had, an early one, to save the cord was to cut into the cord itself and install a shunt. I never got over the pain caused before that surgery (by me...very bad pain) and then, the pain caused by a failed surgery. Later on I found out about one called ACM wherein the surgeon attacked the SM via the brainstem. My brainstem was failing anyway, so there was nothing to lose and it was successful...immediately successful. Of the two surgeries the brainstem (removal of lower plate of the brain) was by far the least painful and fastest healing. I had burning pain that I still have to this day and have always had the tightness described below.

Interestingly enough, a large number of people with SM/ACM or narrowed cord (can't think of name), and a few other illnesses also have EDS. It's certainly not uncommon among our group and we used to think we were the only ones who had it. I often thought there was something odd about by hypermobility with certain things, but nothing like people who have real EDS have. A variation perhaps?

I believe there are different types of collagen diseases but certain other diseases are good indicators;

Yours,

Lenora.