Just a quick question

I have been diagonised with fibromylagia and conective tissue disease ( gp tells me that is some sort of overlap disease) any way have been waking with shoulders and neck shoulder blades into mid back aching so go to get up and have trouble moving as hips back legs and feet hurt to move and very stiff if feels as if ive been hit by a dozen busses my back seems to hurt mainly on the right side and spasms as if i have been shocked by elctricity short and sharp my question is this caused by fibromylagia or the conective tissue disease 😔

11 Replies

  • Hopey was your diagnosis made by a rheumatologist or just by your GP? If just the GP then they need to refer you to a rheumatologist who specialises in connective tissue diseases.

    I have so far been diagnosed with hypothyroidism and Rheumatoid Arthritis with Raynauds and Sjogrens as add ons. I don't have Fibromyalgia but I did have pain similar to that which you describe when my RA was presenting as polyarthritis. I have shooting pains a lot just now too as I'm tapering off steroids slowly. I think this is inflamed tissue compressing the nerves. That's what I've decided anyhow as it worsens when I'm off medication for inflammation.

  • Yes have been diagonised by a rhuematologist but have been told fibromylagia and not to worry about the ctd because it appears to be under control (positive anti RNP) rhuemy wont commit to what ctd just says that i have to wait and see so not sure what is causeing what so frustrating

  • I feel your frustration loud and clear Hopey because it's pretty similar to mine. Having been diagnosed with RA four years ago and tried four DMARDs (severe allergic side effects) my old rheumatologist took me off everything and advised me that as my RA is non-erosive so far, and as I don't tolerate drugs well - he felt it best that we just wait and watch to see where this goes. I've had five hospital stays this year and don't know if any of the symptoms relate to my ct problems or whether just a very unfortunate run of bad luck. I'm now trying to wean myself off Prednisolone and am just starting blood pressure tablets. It's terribly confusing!

  • I had a lot of these pains when flaring and before I started taking hydroxychloriquin. I have Lupus SLE, APS, Raynauds and Osteoarthritis. Sometimes it's hard to tell which causes what so now I try not to guess and just treat it!

  • I am already on plaquinel and lyrica just wasnt sure if it was just fibro or something else just a bit concerning

  • I agree with Twitchytoes you need to see a Rheumatologist, I really hope your GP hasn't made this diagnosis off his own back when he is not qualified to do so. I am under a Rheumatologist because I was originally diagnosed with fibromyalgia 4 years ago as I suffer with pain/stiffness in my shoulders/neck/back/hips/feet and ankles. I then moved area and went to see another Rheumatologist who was really attentive, as she learnt about my personal condition she suggested that as I am worse in the mornings for a couple of hours and my inflammatory blood markers (CRP. ESR, PV) are raised that I could have Polymyalgia Rheumatica. I also have Bursitis in my shoulder and think this may be the case with my ankles too. She suggested I try steroids and if these made me feel better then I should take them for a couple of years, which I have now been doing for a few months. My Mother was recently diagnosed with a connective tissue disorder and following this they tested my blood in case I have one too, it showed positive for a lot of the antibody tests and they have just started to seriously look into me having a CTD, they also think that I have Sjogrens syndrome. There are a large number of diagnoses/diseases that can cause pain such as ours and you definitely need to consult a Rheumatologist and get blood tests done, you may have fibromyalgia but you could have any number of other diseases/disorders and you won't know until you see a specialist. Hope it goes well for you. Take care.

  • I agree with the others that you need to see a rheumatologist. I have very similar pains to the ones you're describing plus few other things & have been diagnosed with connective tissue disease. Depo medrone injections have been great, even though they last for few weeks only, tried Quinoric- allergic reaction, now on mepacrine, six weeks in, definitely seeing impoved quality of life. Don't be fobbed off & hope you get the care you deserve soon xx

  • Thankyou for your replies maybe its just a waiting game

  • Hello Hopey

    Just to add my suggestion. Try to get yourself a memory foam mattress or mattress topper. I have found it has helped with some of the pain I get at night and in the mornings. Obviously it isn't a cure all but it certainly was money well spent in our house.

    I still get a lot of pain when I am in a flare but at other times the pain is manageable and I can get going quicker in the mornings.

    Just a suggestion. Hope it helps.

    Sarah x

  • Hi Hopey

    my Rheumatologist says I have UCTD and Fibro. I had the same problems as you. I am now on Methotrexate, Tramadol, Pregabaline, Quinoric and Paracetamol and this concoction works for me. I still get flares sometime but I am much better than I was 2 years ago.

    My Rheumatologist told me not to worry about which one of my ailments is playing up, just treat it. They all seem to be connected. This seems to me good advice, as I used to tie myself in knots about which one it was!

    I wish you relief and much patience

    Ursi x

  • Thank you for your coment and good wishes 😀

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