Fibromyalgia

[Nogodsnomasters]

I have a suspicion that I have fibromyalgia, I've read on the NHS website that the treatments are therapy (had it, several times), exercise (don't need a GP for that) and painkillers (I use over the counter painkillers and I'm not really willing to take anything stronger as I have health anxiety and they frighten me). So based on the above, is there a point in even attempting to get a doctor's appointment to discuss my suspicion and symptoms? I have previously been the GP over some of my symptoms in the past individually and nothing has ever come of it more than routine blood tests which have come back normal but I've not gone about all of them together and there are definitely new symptoms since I last went (years ago). Two of my sister's are already diagnosed with it and I believe I've read it runs in families? They're both on strong prescription painkillers and still suffer regardless.

Anxiety itself is a symptom of fibromyalgia listed on the NHS website so it could be either way around I guess. I do have anxiety and have done for 14yrs. my headaches would definitely be consider tension type ones however I'm not tensing my legs, feet, ankles, wrists etc and these are all areas I experience pain along side the usual spots of neck, shoulder, back.

You do not get PIP based on a diagnosis. It is awarded based on whether you have difficulties in relation to the PIP descriptors - so can you cook a simple meal, wash and dress yourself, communicate, mobilise etc. Can you do these things reliable, in a reasonable timeframe.

Have had these things tested several times. Last time being around August 2022.

I think fibromyalgia is usually properly diagnosed by referral to a Rheumatologist. However so many people seem to think they have it that I 'm not sure if this is still the case. I had a client at work recently whose GP diagnosed it and wouldn't refer him to a Rheumatologist. I expect they are overwhelmed.

I would be wary of a GP diagnosing Fibromyalgia unless they have some specialty in that area. The symptoms overlap with so many other possible causes. A rheumatologist is the best way to go, they know exactly what they are looking for.

It is very difficult to get. An ex work colleague was awarded it for difficulties relating to fibro despite still working full time but only because she worked in the area of benefits so took it to appeal, got help with the appeal from someone experienced in doing appeals and got her consultant to write very specific letters etc to support her claim. It really depends how the fibro affects you and what it prevents you doing or the difficulties it causes. Everyone will have different severities, so just depends if awarded enough points for an award.

I was diagnosed with Fibro last year. Years and years of being in pain and they diagnosed that. I always thought it was a made up thing. But while I was speaking to a neuro surgeon and out my trigeminal neuralgia I mentioned the fibro diagnosis and I didn't want to seem silly believing in it and I flippantly added 'oh I know it's just a we don't know what is actually wrong with you diagnosis' and he cut me off and said they absolutely do know what it is they just don't know how to properly treat it yet. Basically it's a nerve problem, they don't know how to behave and get mixed up and misfire. That is why if you feel a light chill, sometimes it can feel like your bones are cold and you get severe pain etc... he said your nerves know something is going on, but isn't sure if it's OK or not so immediately go on the defensive and tell your body you're in pain. This very respected surgeon had nothing to do with my diagnosis and didn't need to defend it and make sure I knee it was real.

I suppose people have varying degrees of disability with it. There’s no way I could work during a flare up

This is a massively helpful post for me. I've just had it suggested that I might have fibro by the musculoskeletal person at my gp surgery. Have had blood tests and a referral to physio as next stage. I thought all my symptoms were a combination of old ligament/tendon injuries flaring up, beginnings of arthritis in joints and/or menopause related. But no redness or swelling and matched issues on both sides. Hrt has helped a bit and have just upped my dose and started on joint supplements. Am only a week in since the change but I'm not sure it's making much difference, yet.

I've also suffered from anxiety and depression for years, I thought relating to my cycle as improved since hysterectomy, but realising also that I've always been very sensitive to the touch (legs especially painful) and can only ever cope with a very gentle massage as I just simply hurt all over. Sounding and feeling really pathetic so this is quite reassuring to read. Most people I know would have me down as a really positive person, but it's exhausting keeping up the charade. Sorry OP, just needed to get that off my chest! Sympathies to you, it sounds to me like you need to request a referral.