Recent diagnosis of hypermobility.

[Clm1978]

Hi all, i have just been diagnosed with hypermobility at 39. In the last two years my health has deteriorated and in that time have also been diagnosed raynauds phenomenon, carpal tunnel, fibromyalgia, had surgery on both legs for varicose veins and recent bloods showed my vitamin D level was only 25nmol so have to start on 6 week course of 25,000 vitamin D3. Has anyone else had the same? For almost 6 months i had put my increased fatigue, muscle and joint pains and memory problems down the fibro but clearly the vitamin D deficiency has been the issue too.

Ll

[Tillyray]

Hi. I can relate to your health struggles. I suffered almost nightly cramp from age 11 into my 30's, and varicose veins in my calf appeared because of it at age 18. I had them stripped at age 26 -GP always Said they would go, they didn't!- No one understood why I had them😒..No Doctor understood my various symptoms and I was diagnosed fibromyalgia in my 40's. My health has steadily deteriorated in recent years, becoming much worse in the last four... After a long journey doing my own research to get answers about what was going on, I was finally diagnosed as having hEDS - hypermobility ehlers danlos syndrome- a few months ago. My son was also diagnosed with the same... I have now been in agony for nearly 2 years with constant ankle tendonitis due to subluxing joints, and I struggle to walk...Even though I saw GP over the years,they never did the right tests, and the various consultants were also clueless😕..Thankfully after seeing a private, specialist rheumatologist -Dr Hakim- the GP's etc, are now following his recommendations,and bloods to show the deficiencies have been done... It is early days, but I feel at last there is a way forward. I am currently taking prescribed folic acid and vit D due to the insufficient levels. I hope you are getting good medical care, and that you will soon feel some improvement...There is a lot of info on the Hypermobility syndromes association website, HMSA, and they also have a helpline. Very best wishes🙂 x

ps. I never quite accepted fibromyalgia could be the whole story. For me, I felt that it was too easy for the Doctors I saw to put all of the symptoms and illness that I struggled with, down to it being fibro. Some of which were incapacitating, and not even listed anywhere as fibromyalgia. But still I was fobbed off with 'its all fibro'.. It seemed as though having a fibro diagnosis meant an easy 'cop out' on the part of Doctors. They didn't understand what was going on, so said 'its because of fibro'😬..The final straw came for me, confirming what I thought. I suddenly developed unprovoked ankle tendonitis/ tenosynovitis that showed on MRI. Because tendons were so damaged,a rheumatologist tried to convince me I must have had an accident. No one would believe it had just come on..They wouldn't /couldn't understand, because they didn't have the knowledge...After a year, and still with it and a dropped foot - which I still have- they dared to tell me 'fibromyalgia' and a new one, 'hormones'!😲...I have since been told by my new knowledgeable specialist - who was also annoyed by the 'fibro tag'- that ' fibromyalgia is a collection of symptoms', often due to something else..and in my case the hEDS!.. He said,'subluxing joints are not 'fibromyalgia'!! 🙂

[Jk2833]

I'm in the same boat totally. I have a 5/5 score of hypermobility but I don't know if that warrants a diagnosis of EDS. I've had fibro for 12 years now And osteoarthritis. I've just finished that medication 25,000 vitamin and also a calcium medication.

No the wonder we feel so tired!

Unfortunately the vitamin med isn't sufficient for me as I have malabsorption so now taking folic acid daily and just waiting to see what's next with the professor.

Take care

Jk