New to the group

[Char_Green95]

Hi everyone - I've just joined today after my recent diagnosis of eds and fibromyalgia. Anyone got any tips or advice in terms of coping?

[sunride]

Hi chachar_Green

Welcome to the group. I have just been recently diagnosed with EDS type 3/ Hypermobility syndrome, and fibromyalgia.

If like myself your finding it overwhelming, and confusing you have come to the right place. I personally have found this community really helpful the kind words and wonderful advice have helped me tremendously.

Best wishes X

[Char_Green95 in reply to sunride]

Thank you xxx

[Hidden]

Hi Hi! Welcome to this group. I have the same diagnoses, for me personally it's all about pacing and not overdoing it. and having some medication ready for if you are in a lot of pain. Physio is very good and found the pain clinic helpful too. Sometimes it's hard to find the right care but don't give up, ask your gp for referrals if you need them.

Take care and do let us know if you have any questions

[Char_Green95 in reply to Hidden]

Thank you very much xx

[Tillyray]

Hi and welcome.I have a fibromyalgia diagnosis and Hypermobility, and I am going soon to see a vasculitis consultant to rule a type of vasculitis in or out, and a Specialist at the Hypermobility unit to confirm diagnosis of Hypermobility and state which possible other EDS type it may or may not be.I also want to get further help from there for my various malfunctioning body systems.. My son is also attending as he is affected with Hypermobility and has a long standing diagnosis of ME..

I am suffering with recurring flare-ups at present, that afterwards leave me weak, with dizziness and fatigue for a long time after..I have constant excruciating pain in my leg vessels, pain in my feet and painful unstable ankles..

I potter about the house doing the odd thing - wash-up, put washing on etc-, then rest, then potter, then rest..on a better day -but still coping with pain and symptoms- I visit my grandchildren.Trouble is, a flare then follows, so I hope to get help for a better quality of life..It's awful right now, but I'm trying to make the best of it with DVD's and two gorgeous cats to cuddle🙂

You have come to the right place, everyone one here is kind, supportive and knowledgeable.

Very best wishes x

[Char_Green95 in reply to Tillyray]

Very sorry to hear about your situation. I hope you stay positive and virtual hugs from me😊

Thank you for advice xxxx

[rosesinbloom]

For coping I would say tgat pacing is essential, don't have too much to do too many days in a row, if you know you have to go or do something, rest the day or two before and don't have anything booked for the next couple.

It's not easy to do, but I do find it helps in the long run.

[Char_Green95 in reply to rosesinbloom]

Thank you very much for the advice x