At my wit's end: I have had fibromyalgia for a... - LUPUS UK


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At my wit's end


I have had fibromyalgia for a number of years, so all usual symptoms - widespread pain, fatigue, IBS, insomnia, etc. Why is that any further symptoms are always put down to this??

I had a slipped disc 7 years ago but it was undiognosed for 8 months so progressively got worse. Top and bottom of it, I ended up with 3 operations and now left with nerve damage and constant pain in my back and down my right leg and foot.

I also started with tingling in my hands and feet, lose my balance which makes me stumble over

On a medication review I mentioned that my arms were going dead while I was asleep and this was waking me up. My GP referred me to a physio to check for carpel tunnel. On her assessment she referred me back to my GP because my overall symptoms were very similar to MS. So I saw a neurologist. He did several tests and these came back negative to MS and Parkinson's. So discharged by him although he did mention cognitive therapy. As if I've not managed to live with illness for so many years as well as bringing up 3 children and working.

Then a few months ago I started with tightness and pain across my chest. Several more visits to the GP and no conclusive reason for this.

Lots of symptoms I have ignored or put down to the fibromyalgia or I just end up thinking I never get anywhere so just don't bother to mention to the Dr.

But with the chest pain I have done some more research and thought of lupus.

I do get a red blotchey rash across my face and chest which stops across the top of my arms. This first appeared about 3 years ago but thought nothing of it. It comes out if I get warm or in the sun, but then goes off again.

I suffer with dry, itchy ears and skin but again never tied this with anything else.

So I asked my GP if I could get tested for lupus. I had the blood tests a week or so ago and just went for the results today and guess what everything has come back at normal levels.

Could it still be lupus???

4 Replies

Hi Ambs5,

I'm sorry to hear that you have had so much trouble trying to get a satisfactory diagnosis for all your symptoms. Do you know which blood tests your GP did for lupus?

Have you been referred to a rheumatologist to investigate your symptoms and potentially trial a course of treatment?

Negative blood test results don't necessarily rule out lupus completely, but they do make it less likely as a diagnosis. It may be possible that you could have a condition like undifferentiated connective tissue disease (UCTD) which is sometimes referred to as 'probable lupus' or a 'lupus-like condition'.

Ambs5 in reply to Paul_Howard

Not too sure on all blood tests but my GP did say they were the indicators for lupus. I know it included liver function, antibody count and some unpronounceable things.

I'm just very frustrated, with each new lot of symptoms and the subsequent tests always come back negative and it feels like a bit a brick wall each time. Not that I want anything serious to be wrong but I just would like an answer.

It's also frustrating because with no definite diagnosis I can't get any help or join any support groups.

My notes relating to the blood test just state no further action. So my GP certainly sees no reason to refer me to anyone else.

I did see a rheumatologist when the fibromyalgia was diagnosed. But as normal then discharged and have to get on with it.

I'm not sure what else to do or where else to go but to live with things.

Paul_HowardAdministrator in reply to Ambs5

It may be worth having a conversation with your GP and explaining that you have these concerns and would like to be referred to a rheumatologist again to be investigated for lupus or other autoimmune conditions that could be causing your symptoms.

Ambs5 in reply to Paul_Howard

Ok thanks for the advice

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