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.

There are tidbits all over the net, but I couldn't find a definitive source. So sorry you have so much to deal with. Hope you find a decent rheumatologist that can help you.

Rupture tendon and long bicep on right shoulder

So I had a ruptured biceps tendon, but the other tendons are heavily damaged, and all the movements of daily life make me suffer. I am looking for a rhumatologist and a physiotherapist specializing in the disease. If someone can help me...

I am so sorry, what a horrible injury. I hope you can find incredible docs to help you recover.

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.

Recherche de contact

Bonsoir,
Je recherche des contacts avec patients du SED III, vivant en Suisse,
pour échange d'expériences, infos, suivi médical.
Hors Associations.
Merci à qui veut bien m'aider et à ceux qui l'ont déjà fait aujourd'hui
par leur écoute et conseils.
Merci d'avance.

C'est pas grave, merci pour ta sollicitude. De toute façon j'ai fait mon petit bout de chemin jusqu'ici toute seule....je peux continuer encore un petit bout! :-) Du moins , j'espère. ;-)
Sereine année à toi.

Pour consultation en Farnce
1) tu as le centre de référence des maladie du tissus conjonctif a Garches pour Diagnostique et peut-être orientation ? (voir mes autres commentairess)
2) Tu as une équipe sur Lyon (qui est plus ou moins lièe a l'association AFSED, pour avoir les infos (Une école du SEd, un centre de soins etc...)
3) Tu as une association sur Paris ASED (liée a l'équipe Paris Prof hamonet) avec infos sur le sed + proposition de soin comme cure thermale
4) D'autres association dont SEd 66 qui a parfois des antennes locales dans différentes région de France et peut-être en Suisse ou a proximité...
5) Autres a découvrir

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!)