RA, Fibromyalgia or something else? Leg pain - NRAS

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RA, Fibromyalgia or something else? Leg pain

IndigoDingo profile image
12 Replies

Hi everyone. So I have these pains, usually in my legs, often lower legs but sometimes thighs too. Not muscular or bones, not joints. Weird just below the skin sort of fizzy pain, sometimes a bit achey. Like it could be my nerves or even blood vessels. Often worse when I am in bed. My Rheumatologist says it is Fibromyalgia. Maybe it is. But she kind of diagnosed it as "oh that can't be RA pain as it's not your joints so it must be Fibro" and then said "one day I would learn to tell the difference"! Now, I'm not saying it isn't Fibromyalgia, but I just feel the way I was diagnosed was almost like it was too hard to really think about what else it may be, and now I have RA and Fribromyalgia, that's job done - put it all in a bucket and give up. It took me years to get my RA diagnosis after many docs dismissing my pain. By the time they took me seriously I had visible bone erosions on x-rays - but apparently I hadnt been in "enough pain" until then! And then I also eventually got a diagnosis of low blood pressure which explained a lot too. I still feel this pain may be something else...maybe RA, maybe blood pressure related. Anyone have any similar experiences? Thanks people x

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IndigoDingo profile image
IndigoDingo
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12 Replies
springcross profile image
springcross

What medications are you on ID?

IndigoDingo profile image
IndigoDingo in reply to springcross

Just methotrexate, 20mg once per week via tablets. A bunch of supplements (folic acid, Vit D, Vit B, Glucosamine etc.) - all prescribed) Ibuprofen occassionally when it gets a bit much. You think it may be that?

Mmm 🤔 I have mentioned similar things to my Rheumatologist but as RAwasn’t controlled nothing was said. I suffered this last week rang Gp who said it was my statins ( been on these 8years no problems) got odd heavy thighs today and I often get tingly burning on the inside of my ankles mentioned to a gp just shrugged her shoulders . No one mentioned fibromyalgia

Brychni profile image
Brychni in reply to

yes to the tingly ankles!

charisma profile image
charisma

Rheumatologists treat people with Fibromyalgia too. Yours probably knows the signs and symptoms inside out. But you can always ask for a second opinion or join a Fibromyalgia community and see what they think?

springcross profile image
springcross

I would ring your rheumy nurse and explain exactly what you have said here. Best to get it checked out to be on the safe side. Good luck. x

barbieg profile image
barbieg

I have Fibromyalgia and RA but the Fibromyalgia was diagnosed 30yrs ago by a consultant. Not sure if it’s still the same but there are lots (can’t remember the exact number now!) pressure points on your body. I had nearly all of them so was immediately diagnosed with Fibromyalgia. Think you would benefit from joining the Fibro forum who would be able to tell you more.

oldtimer profile image
oldtimer

That sort of 'fizzy' pain sounds like the feeling I get in my lower legs. I described it as like having a sparkler landing on your skin feeling. I was told that it was due to small fibre peripheral neuritis and there was no treatment. Sometimes it's bad and sometimes just goes (almost) away.

in reply to oldtimer

That describes it perfectly oldtimer. Medics haven’t bothered to give me an explanation. At least I may have an explanation now

GranAmie profile image
GranAmie in reply to

nononoo.. it's Pratchett's ' Wee Free Men' again.....

GranAmie profile image
GranAmie

your post triggered a PMR memory.. squatting down to pick wild strawberries ... got stuck and couldn't get up again.

Brychni profile image
Brychni

yes

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