Hypermobility syndrome

cupatea

Hi,
Just wondering if anyone has been diagnosed with hypermobility syndrome please?

filo87

Hi! I have Ehlers-Danlos/hypermobility syndrome.

cupatea

I am trying to find out where to go for specialist help with this problem.

Been given a diagnosis(not for myself but family member) but don't know where to go next.
Need someone to formulate a plan to deal with the variety of symptoms that seem to be part of the condition.
Any suggestions appreciated
Thank you

filo87

Have sent you a private message.

raymick

Hi my 17 year old daughter has been diagnosied with eds she has always had symptoms and through her own research she found out that she could have eds. It still took along time for us to come across a doctor that had heard of it and referred her to a rheumatoligist. We thought that we would get somewhere now but all we have had is a few physio sessions and she just seems to be going downhill we have not been sent for any tests and they basically tell her that it is all in her head and she needs to keep up the exercise. No pain killers seem to work and she is missing alot of school. Are there any GP's that specialise in eds. She has spinal pain, IBS, migranes sore shoulders, problems walking, bad breath, insomnia, fatigue, elastic skin, low blood pressure, pounding heart and is anxious all the time

filo87

Hi raymick. I know how your daughter feels. Unfortunately, EDS isn't well recognised or understood in this country. Sent you PM with info on a support group that might be helpful to her.

TanyaT

Could someone please pm me details also as i can only find specialist in the uk please, tks

filo87

PMed you TanyaT.

miss no stars

filo87, would you mind PMing me any info you have too? Put my back out and physio found it very difficult to believe me when I said I had it...