Ehlers-Danlos Syndrome (EDS) Community

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Conversations tagged Bones, joints, muscles

rheumatological problems

Fatigue, which limits my activities

I experience join dislocation. In my thumb and right foot I have lost a joint, which makes it "down" a notch, it is much smaller than the toe next to it. My foot is therefore completely unbalanced and even wider than my left foot. Thumb joints that separate and I have small bones of the finger that have separated. I think that an articulation disappeared again .. and my current problem is the ruptured tendon and biceps in my left shoulder, my shoulder that makes me suffer and limit my movements, if anyone can point me to some information for rheumatological complications of EDS.

martacampabadal
moderator

Dr. Jan Dommerholt Webinar on “Physical Therapy for Ehlers-Danlos”

Jan is a recognized expert in the physical therapy diagnosis and treatment of persons with chronic pain syndromes, including EDS. He has lectured at EDNF patient and physician conferences.

See link to recording and slides on the following announcement page:​​
http://www.chronicpainpartners.com/physica...

ankle dislocating 13 times a day on average after falling on it?

I fell and completely dislocated my ankle, with complete bone separation. It loosened the joint massively and the only thing to get my ankle stop is putting it in a cast, how can I explain that to the orthopedic dr. Without sounding pushy? And how can I explain EDS and get him to listen. It'd be very appreciated.

Contact search

Hello,
I am looking for contacts for SEDIII patients, living in Switzerland, to exchange experiences, information and medical journey.
Outside of associations
Thank you to who would like to help me and those who have already done it, for listening and giving me advice.
Thank you in advance.

Notice: This text content has been translated automatically by a third-party service.

That's okay, thank you for your concern. Anyway, I walked my little part of the way all alone .... I can go on a little bit! :-) At least, I hope so. ;-)
Have a serene New Year to you.

For consultation in France
1)You have the reference center for disease of the connective tissues in Garches for Diagnostic and maybe orientation? (see my other comments)
2) You have a team in Lyon (which is more or less related to AFSED association for information (A school of EDS, a health care center etc ...)
3) You have ASED, an association in Paris (related to the Paris Prof Hamonet team) with information about the EDS + proposal of care as spa
4) Other associations of which EDS 66 sometimes has local branches in different regions of France and perhaps in Switzerland or nearby ...
5) More to discover

bonjour Hermandine,

Situ cherches un groupe de contact, tu peux rejoindre notre association Sol-sed. Passe par FB , il y a un groupe de paroles. Nous avons édité une brochure concernant le SED et nous organisons des rencontres une fois par mois.

Mireille Van Craen

martacampabadal
moderator

What the Joint hypermobility is?

In this article Dr. Jaime Bravo (Rheumatologist from Chile) explains some of the problems related to the Hypermobility, when this last represents one of the visible perceptive among those identified as one of the hereditary disease of the connective tissue.

http://www.infosalus.com/salud-bienestar/n...

(news published by Red Ehlers-Danlos Argentina in its Facebook Page)

Notice: This text content has been translated automatically by a third-party service.

martacampabadal
moderator

another link with a more complete article: :

Pain with the joint hypermobility (with a language for patients)
http://afibro.org/2011/09/el-dolor-en-la-h...

martacampabadal
moderator

Wearing a Compression Garment for Patients With Hypermobility Type of EDS

Faced with insufficient effect of drug treatment, other alternatives have been proposed to relieve these patients. Compression garments have been developed. They appear as medical devices targeted specifically for patients with hypermobility EDS type: in the symptomatic treatment of joint pain, in stabilizing joints by proprioceptive effect and of muscle globulization, and in the functional improvement.

The VETCOSED study is a quasi-experimental study of type "Before / After", monocentric, open. The study is realized in the Centre Médico-Chirurgical et de Réadaptation des Massues - Croix Rouge Française de Lyon, in association with the Pôle Information Médicale Evaluation Recherche des Hospices Civils de Lyon. This study concerns about 40 patients with EDS hypermobility type, which will be followed for 8 weeks: 4 weeks during which they will wear a compression custom-made garment, and 4 weeks during which they do not carry this garment.

For more information: http://clinicaltrials.gov/ct2/show/NCT0214...

Hi Margann yes you should give them a try- and we are friends already - you did it right first time! Good luck with the tablet!

Hi tania lt, thanks for luck with tablet i need, it , thankyou so much for conformation on friendship, are the stockings from a chemist or? Margann.

You can get them online but I got mine from my doctor on prescription (Altinen) or they would have been ver expensive. I just bought some cheaper ones that are thigh-high with no toes from Amazon. http://amzn.to/1wSA4qD
I couldn't tell you if they're good, as my 14 year old son decided he wanted them before I got a chance to try them. (he has PoTS too!)

Hydrotherapy for EDS

I've has the first two of a series of Hydrotherapy treatments - gentle exercises in a lovely warm pool, with a one-2-one therapist who is in the pool too.
I've been amazed how long I can stay upright and do the exercises for and the water isn't too hot that I sweat. There is much less pain doing things when in the pool.
I have increased pain at the moment, but I think this is just from using muscles I don't usually. It hasn't made my usual pain worse and the point of it is to strengthen muscles which I can't normally do because I can't stand up long enough and because they hurt.
It's actually such a thrill to be able to do something physical and enjoy it. Has anyone else had Hydro?

Graciela
moderator

Not on a long time. Water made so much force over me, that it was worse than trying to do it out on “land”.
Of course I have to be thankful for my electric wheel-chair, at home I have to walk and the Doc. Asked for 10 minutes straight from my room to the dining room in our flat. The cats think I am out of my mind, but he rather wants me walking here and keeping the muscles, than doing any exercise or therapy.
Away from home, just with wheels, like it or not.
Am happy for you Tania

Sadly there are only six sessions, but it may give me confidence to try the local pool, though not on my own.
Next week I finally have my autonomic assessment and an assessment for pre-rehab. Everything at once after such a long wait!
Glad to see you here Graciela! Thanks for your note too. I got an electric chair too for outside! And sometimes round the house if I'm not feeling good.

Graciela
moderator

Well Tania, I’m a goose, so I just get more practice on falling with a bit of charm and hurting the less possible. Although now I know the “unbreakable” girl, has grown and now the woman does brake from time to tiem