Miss diagnosed once again

Well I have just found out today I actually have fibromyalgia after being diagnosed with lupus and connective tissue disease. I am quite dis heartened and annoyed as there no medication I can actually take to get rid of my pain as I have tried it all last year from my gp's thinking I have nerve damage...

I don't want to feel like that's it now at 21 and being ill for a year I'm just going to be left and have to deal with my pain for the rest of my life

9 Replies

  • Have you had your calcium level checked ? A high calcium result could indicate hyperparathyroidism, this would cause bone pains amongst many other symptoms. If calcium is high, Parathyroid, Phosphate and Vitd tests must be done at the same time as another calcium test.

  • I do have an underactive thyroid had that 6 years now

  • Parathyroids have a different function and are not connected to thyroid disease. Is your thyroid well controlled ? If not that can cause many symptoms, do you have any thyroid results to post ?

  • Hi Joanne. Its not always pills we need to help with pain,you are very young,how are you at swimming? I have hydrotherapy and acupuncture both provided by nhs. Ask to be referred to a physio for some gentle stretching excise and ask physio about sorting out some hydro sessions,,in between just simple paracetamol could help but I find aquatic the best over the 14 years I,'ve had fibro .stay on our forum for loads of help and advise,it can get more manageable.

  • I apologise Leanne my tablet puts words in. I got your name wrong!

  • Well I will be starting swimming now this Monday so see how that goes.. but my rhumy spose to of referred me to go hydrotherapy in August but I haven't heard nothing since ao may have to chase that up.

  • I would chase that appt hun...

  • Hi Leanne22p I'm sorry that you have been misdiagnosed & now been told you have Fibro but I'm afraid this is a story that is heard over & over again. Because everything else has to be eliminated before a Fibro diagnosis can be given. This can and does seem to take a long time atm unfortunately. Hopefully this will change in the very near future as new research & technology come on.

    Hopefully you won't be just left because there are various treatments and medication that will help with the pain.

    It takes time to understand & come to terms & manage it but there is lots of various things you can do. You have to learn to look after yourself properly and pace yourself. As Caz said, swimming is very good.

    Peace, luv n light

    Jan x

  • Hi Leanne22p

    I am so genuinely sorry to read this and I sincerely hope that you can find some resolution and relief to your pain issues. It may help to make a list of potential medical tests that you could ask your GP for to ascertain if you have any anomalies that could be addressed that may help decrease your pain?

    I think bantam12 suggestions are excellent as if you have any thyroid issues as well this could increase your pain levels. Both NurseGladys123 and Janet28 gave you some wonderful advice also. I want to sincerely wish you all the best of luck, and please take care of yourself.

    All my hopes and dreams for you


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