Fibromyalgia Action UK

Everything Has Changed!!!!

Hi, I hope you are all well.

Just an update really, I posted a while back as my gp had referred me to a rheumy Dr as he suspected Fibromyalgia.

I hadn't heard particularly nice experiences from others about rheumatologists and was very nervous about my appointment. (its bad enough when your second guessing you self as to weather or not its all in your head,lol!)

Any way , a million (or so it seemed) blood tests later, 2 rheumy appointments (4 months in between) and a whole lot of moaning ,groaning and sleepless nights, I finally got a diagnosis....! that is technically non-specific!

My Rheumatologist says he has diagnosed 'Inflammatory Arthritis' for now. He said " if I say rheumatoid arthritis then dr's will switch off to other important symptoms and if I say Lupus then the same will happen". Not entirely sure what that means?? So basically I have RA symptoms but a few lupus ones butterfly rash , mouth ulcers etc. S o I got a steroid injection which is AMAZING!!! I cannot stress enough how in just 1 day I have felt the benefit from this and I have been commenced on Hydroxy Chloriquine (misspelt?) which apparently are anti malarial pills that suppress the immune system in order to reduce the symptoms . They are used in RA and Lupus patients so whichever it doesn't matter I guess.

So finally after nearly 2 years of thinking I was going nuts and being told I had fibromyalgia I feel like im finally getting somewhere. I really think that patients should be referred to a specialist as soon as problems arise that are beyond a gp area of expertise (yes I know theres a system and I know its the nhs) but I could have begun treatment sooner that would have delayed further join damage, and im actually one of the lucky ones! I read recently that Lupus Patients usually wait several years and see many doctors before receiving a diagnosis.

How many people out there as being told by their gp " you have fibro , there's no treatment or cure and it doesn't damage your joints" - like I was, when they may have a disease that is actively damaging their joints? and the middle man (the gp) is delaying your treatment? Scary eh!

So I just thought I would let , well anyone who wants to listen know what my experience turned out to be and how one suspected diagnosis turned into something completely different, which proved that that referral was worth my while.

Take care, and Best Wishes to all of you.


1 Reply

glad the injection helped :)

your rheumy seems to be leaving the or open for more than one condition affecting you - as is the case for many of us.

I do apologise for the delay in responding to you, we don't normally miss a post.


sandra :)


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