Still waiting for diagnosis

Over the last 15 years I have been variously diagnosed and subsequently undiagnosed with various conditions including IBS, rheumatoid arthritis and fibromyalgia. Currently have no diagnosis again, but still all the problems. A friend suggested I list my symptoms here and see if anyone recognises my condition as matching theirs, so here goes:

headaches, face and jaw pain, eyes feel dry and difficult to focus, permanent sore throat, frozen shoulders, tender elbows, stiff fingers, sore thumb joints, lower back stiffness which then pulls and goes into spasm, hip and thigh pain, groin hurts lifting legs to walk, legs seize on going upstairs, tailbone hurts to sit, knees swollen, stiff and painful, lower legs swollen, especially just above the ankles, balls of feet hurt to walk on, feel as if all my elastic has hardened and can't stretch, so sleepy I am in danger of falling asleep while driving home from work, often lose my words in the middle of a sentence. Probably others that I can't think of now, but that is the gist.

Any ideas gratefully received as my GP seems to have given up on me.

8 Replies

  • I am so genuinely sorry to read of your suffering and struggling with illness and I sincerely hope that you can find the answers that you so desperately desire and deserve.

    Sadly many of the symptoms of Fibro are similar to symptoms of other illnesses, and many Fibro sufferers also have other conditions such arthritis and spondylosis etc so it really is impossible to say?

    I want to genuinely and sincerely wish you all the best of luck.

    All my hopes and dreams for you


  • have you been in an accident or had some sort of trauma xx sounds awful but a lot of drs are just guessing and don't av a clue ,if a bllod test cant find out they are at a loss xx hope u feel better soon x

  • Thanks. No accident but did have an unexpected baby aged 40 and have not really felt great since (baby now 14).

  • when backs go into spasm its to protect an injury xx you av so many things but no diagnosis yet xx how then they diagnose fybro then undiagnose it xx ask for a second opinion and kick off till they sort you out its the only way sometimes x I don't av a lot of faith in the nhs xx bet that was a shock pregnant at 40 lol nice one tho xx

  • Dear Mab3k. this could have been me writing this! Every single symptom you write about I recognise in myself. Maybe not all at the same time but definitely all of them. The worst for me at the moment is migraine headaches and the worst painful neck I have ever had. I fall asleep sitting up, forget what word comes next, can't spell anymore. My eyes are permanently weepy. I use a stick because I can't trust my legs anymore.

    Two years ago I had major back surgery and then 6 months later my partner died. I believe that that trauma bought these symptoms on. I only got the diagnosis this January after months and months of scans and non-diagnosis.

    I am now on a pain management course (the end of the trail it seems) as the prognosis is not known.

    I feel so sad for you because I am so sad for me!!

  • It is so hard isn't it, not knowing where all this will end. It makes me feel powerless and unable to make important decisions. Should I try to continue to work or should I stop? Am I making things worse by trying? How do I ask for help if I haven't got a name for my difficulties? What do I say to people who ask how I am? Are things going to improve or is this how I will be for the rest of my life? Muddling on through at the moment hoping for some answers at a rheumy appointment in September.

    It does help to know other people are experiencing similar stuff, my thought are with you too.

  • have you had a back injury? x

  • Back trouble on and off since age of 16. Spent my A level years in a support belt and no sport allowed, osteopath said sacroiliac problem and told me to stand with pelvis tilted (which modern physios say is totally wrong!) 6 weeks flat on my back with suspected slipped disc aged 25. Episodes of acute lower back pain ever since but xrays etc show nothing abnormal and physio/chiropractor has not helped. Dr now seems to assume it is all part of whatever it is I have got.

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