"Ehlers Danlos Syndrome / Hypermobility / PoTS / fibromyalgia"

About: Royal Alexandra Hospital / Trauma & orthopaedics

(as the patient),

I began having problems with joint and muscle pain, fainting and extreme fatigue a few years ago. My symptoms were always worse in the run up to my period and so at first my GP thought I might have a gynecological condition. This was investigated and nothing was found. After several months I saw a rheumatologist and, once other conditions had been ruled out I was diagnosed with fibromyalgia. I lived with this diagnosis for several years and received pain management advice, pain killers, antidepressants and physiotherapy. When I moved to Scotland I saw a physiotherapist who noticed I was hypermobile.

To cut a long story short I mentioned being hypermobile on social media and a relative got in touch to tell me that there was Ehlers Danlos Syndrome (EDS) already in his side of the family. I asked my rheumatologist here to be refer me to the specialist clinic in Sheffield to see if I had the same type of EDS as my cousin. They did genetic testing and found that I had EDS Type III the hypermobility type. My cousin has Type 1 (Classical).

Thanks to the referral from the rheumatologist, going to the specialist clinic was tremendously reassuring for me as it confirmed that I was not 'imagining' the problems I had been suffering from for many years. They automatically tested me for PoTS too as many people with EDS also have this. I was found to have PoTS with reflex syncope which explains why I faint so frequently. Increasing my salt and fluid intake has reduced my fainting dramatically. I feel it was a long journey to get to where I am now. I don't feel that I was always listened to or treated appropriately but I was lucky that eventually I did get the right diagnosis. I use a variety of self-management strategies to keep myself going. I am still in chronic pain and get tired easily but my life and stamina have improved. I see a rheumatologist here in Renfrewshire and he received advice on managing my case from the specialist clinic so I no longer have to attend there.

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Response from Paul Cannon, Head of Administration, Acute Services Division, Greater Glasgow & Clyde NHS

Dear rovingricey

Many thanks for sharing your story with us. I was heartened to read that you have reached a place where you understand your diagnosis and can manage your health going forward. I know from my limited experience of patients with EDS that it can be a while before this diagnosis is reached because it is relatively uncommon but I was pleased to read that your stamina is improving and that you are being helped locally.

Kind Regards

  • {{helpful}} {{helpful == 1 ? "person thinks" : "people think"}} this response is helpful

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