I'm new..unexplained symptoms?

Hello to everyone.I'm new on here..I've had a diagnosis of fibromyalgia for 7 years and I have IBS, also many symptoms I suffer (2 lists on A4) no one knows if they are connected to fibro or if they are due to something else.In ten years I've had MS diagnosed and retracted and Lupus suggested by one GP.

After a 7 month wait, I am due to see a rheumatologist for a follow-up appointment at Manchester Royal.The initial appointment drew no conclusion, but I was told I had some hypermobility in my fingers and knees and it seems like nerve pain in my legs.I have since had nerve conduction tests that seemed normal. I asked for the referral to Manchester myself for a second opinion, after being dismissed by a local rheumatologist with tendonitis after MRI showed inflammation (other symptoms ignored) that began October 2015.

Last October I developed unprovoked pain in my foot while I slept, it became severe and I could not weight bare (I felt ill at the time with my other symptoms) It was debilitating and In the week it began swelling and with painful tightening sensation.Foot and leg was ice cold with feint pulse detected in foot.I had lack of mobility in ankle.I was sent to a vascular surgeon who was unsure as to reason for lack of ankle mobility and past to rheumie. I could not walk on it and resorted to using crutches. I felt the same sensations in other foot to a lesser degree.Pale blotchy/patches have appeared intermittently on lower legs, and in the past months I have been ill with various symptoms new and old,and had constant ankle and feet pain which has caused me to be housebound.

A year on and I still feel ankle pains and tightening pain sensations in both feet (I have got use to it) I am unable to flex my foot,point my toes,and have ankle tendon swelling which is now being investigated by orthopedic surgeon with view to operation if there's any tare damage.But I can feel pain (lesser degree) and tightening sensations in other foot and ankle also, but it has normal mobility and so I am concerned operating will not be the answer as I feel it is a symptom of something else.I now feel almost constant other joint pains and regular joint swelling.

I have suspected for a long time that I have another condition, but it is taking time to get any other diagnosis than fibromyalgia,as the specialists do not join the dots of the other questionable symptoms I've had over the years, I.e bowel bleeding,persistent non-visible haematuria and varicose veins developing after an episode of severe cramp at aged 17, which I constantly suffered with almost nightly for 30 years and still regularly do, to name but a few.

After doing my own research,I can recognise myself in Ehlers Danlos and I hope this is picked up on at my appointment.I have somehow managed to struggle along but I worry my son who has some of the same symptoms I have and others, may also be going undiagnosed.

I would be happy to hear any view and suggestions, thank you.

Sincere best wishes x

4 Replies

  • I can relate to many of these symptoms. There is Elmers Dan lost in my family. Have been under hospital for almost three years without any results. Where do I go from here?

  • Hi Marie. I am sorry to hear you too are going through the same thing. It's difficult enough being ill and having to deal with an array of symptoms without the emotional rollercoaster of doctor/ hospital appointments.

    I hope you find your answers and can receive the right care and treatment soon.

    Best wishes x

  • marie. I just wanted to also say, don't give up on finding your answers and getting the right care you deserve...

    It appears it can be a long road..But you know your own body and how you feel,and if you've been gathering information as I have and educating yourself about your symptoms,your medical history and how they relate to the condition, then just don't give up when some doctor tries to fob you off because THEY don't have the answers...

    I believe we will get there in the end,and that feeling of relief will make this struggle worth it x

  • Tilly ray, thank you for your email. I know my family have had problems with a diagnosis, but doctors don't appear to listen to any family history. The more I read on the website the more I am convinced that Elhers Dan lost is the problem.