Lupus and fibromyalgia : Hello l haven’t been on... - LUPUS UK


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Lupus and fibromyalgia

alisoncrowther profile image

Hello l haven’t been on the website for a little while .I have just been wondering if anyone on here has been diagnosed with fibromyalgia as well as lupus I went to see my new rheumatologist on Friday and he said I also have fibromyalgia which has left me feeling so confused about it just wondering if the two illnesses run together can anyone give me any thought on this thank you

3 Replies

Hello alisoncrowther

I have a diagnosis of UCTD (plus myositis). One of the main symptoms has been extreme fatigue - so much so that I have become more or less housebound. After 18 months of treatment, my rheumy declared that my fatigue etc was well in excess of what he thought could be explained by the UCTD alone. Despite the fact that I have no significant pain, in his view, I also warranted the additional diagnosis of fibromyalgia.

Trying to clarify this has not been easy. But here's my rheumy's version of things:

- FM is the result of one's brain developing faults in the way it interprets neural inputs. This might mean, for example, that normal positional (proprioception) inputs get misinterpreted as pain, and/or an abnormal response is initiated eg levels of neurotransmitters are chronically unbalanced. To muddy the waters still further, there seems to be no way of determining how the two conditions interact, or of how the medication we take affects the whole system. It may be that the auto-immune response has kicked it all off by somehow producing inflammation in a part of the self-regulation system, or in a part of the central nervous system that produces feelings of pain or fatigue. Who knows? It seems that all we can do is try different treatments or interventions and see what happens.

I appreciate that this answer is probably not very helpful to you. But that's all I got :(

Hi Alison I have had lupus for 25 years and am only now having a flare up causing major pain. I went to see rheumatologist last month who decided that I had fibro after just 15 minutes of prodding. I had mostly the same pains when diagnosed with lupus which impersonates rheumatoid arthritis so I also am doubting the fibro diagnosis .... I'm off to see the doc tomorrow to ask for steroids (which apparently don't work for fibro) if the steroids work then I know it is lupus. If not then I will try the fibro meds just to see if they work 😁😁😁 if you follow my post I will put up whether or not the steroids work as soon as I can tell .... take care and good luck love Esther x

I have had fibromyalgia for 20 years-no treatment other than leaflet from physio . Lupus diagnosed 3years ago -treatment hydroxy . Now going for rheumatoid appt due to severe lower back pain. Once you have autoimmune problem you get more- I have four . Good luck

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