Ehlers-Danlos Syndrome (EDS) Community

Meet, discuss & support other patients or families living with Ehlers-Danlos Syndrome (EDS). Contribute to topics, or just share what's on your mind.

Start a discussion now (you must be signed in)

Conversations tagged Bones, joints, muscles

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...

TaniaLT
moderator

EDS & Asperger's/Autism

I just took my recently-diagnosed EDS son, Giorgio, to see a specialist paediatrician, Dr Nelly Ninis, at St Mary's Hospital in London yesterday.
She told me that they were seeing an increasing number of young patients that have both EDS and Autism Spectrum Disorders. This was also mentioned to me a while ago by Lara at EDS-UK.
Dr Ninis, who has a particular interest in EDS & POTS is thinking there may be some sort of connection, maybe genetic.
Does anyone have any other anecdotal evidence of this?

Sha2004 - I received my HEDS official diagnosis from the geneticist this past Friday. She immediately said I needed to be taking certian supplements, which it just so happened I already HAVE been taking. She specifically mentioned vitamins C and D, along with magnesium. She said that patients report sporadic help from CoQ-10 and carnitine, but she only recommends those if the patient is at his or her wits' end and nothing else seems to be working. Now, I personally take vitamin D3 and a super C-complex, magnesium, omega-3, glucosamine & MSM, potassium, a strong probiotic, and my specialty multivitamins. Before bed, I eat a banana for th epotassium and take a homeopathic preparation by Hyland's called Leg Cramps PM, as I get charley horses in my calves at night sometimes. (I also take a beta blocker and the usual pain meds as needed, but you asked about vitamins/supplements.)

I have taken Ubiquinol (a form of CoQ-10) but haven't noticed much difference, so I stopped taking that a couple months ago. If I'm having trouble sleeping, I'll take some Valerian Rest. My supplements, with the exception of the C-complex and potassium which I get from the pharmacy over the counter, all come from one of two specialty companies. One focuses on fibromyalgia/chronic fatigue and the other deals with MTHFR plus a lot of the same things as the other one. The vitamins are exclusive to the second company; the other supplements I take can vary between the two companies, so I go with whichever is cheaper and/or on sale.

If you want more specifics on dosages and such, friend/message me and I"ll fill you in. I'm nto a doctor and I don't want anyone to think I'm providing medical advice. I'm not. This is just what I've been doing and seems to work for me so far, based on years of my own research and talking to other people with these conditions. Your mileage may vary. :)

That's weird you say that because all three of my children have Autism and my youngest has been diagnosed with EDS, my older two are going to the doctor , because they are showing signs of the condition also.

TaniaLT
moderator

My eldest, 16, who also has Asperger's has also just been diagnosed this week but as he is built like his father, strong and muscly, he is less affected. He 'just' gets pain in his back, ankles, wrists and knees,and some intestinal discomfort.
We're just going to get him physio help as as he's male, it's less likely he will be as severely affected as his brother or myself.
It's clear, to me, there is some kind of relationship between the two but it is unlikely to be proved anytime soon!

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...

TaniaLT
moderator

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.

TaniaLT
moderator

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!)

TaniaLT
moderator

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

TaniaLT
moderator

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