Pain outside joints?

[BubbleMonkey]

Hi there. I was recently diagnosed with Palindromic Rheumatism (like RA it's autoimmune arthritis, but there's no lasting damage caused). It explains a lot about how I'm feeling, but the one thing I'm unsure about is some pains I get outside of my joints. They tend to happen when I'm in a flare up, but it will be in places like to one side of my back or in my ears. I've had at least some of these pains investigated and no issues have been found so now I'm wondering if it's possible my PR is the culprit.

I know PR can cause skin discomforts, tiredness and stuff as well as the joint pain, but can it also cause other pains? Does rheumatism cover things outside of joints?

So I was wondering... Does anybody else get pains outside of their joints? Could my PR be a plausible suspect for my pains? I'm not worried about the pains or anything, but it would just be nice to know or at least have some idea of where they're coming from.

Thanks for any responses. It's nice to be able to talk things through with people on here cos I basically have no other info source.

[AgedCrone]

Short answer is Yes!

I was diagnosed with Palindromic Arthritis 18 years ago (not sure if PA is the dame as PR?) & at that point I didn't have any pains in my joints.....my main symptoms were pains between joints eg between shoulder & elbow, between hip & knee, & in my back.

I was told then the PA would either develop into rheumatoid arthritis, or just fade away......but as I had a positive rheumatoid factor the former was most likely, & I was diagnosed with RA two years later.

18 years later I have very little joint damage having started on DMards very early on. I'm now on Rituximab & so far doing well on it.

[BubbleMonkey in reply to AgedCrone]

Thanks for your reply. I would assume they are the same yeah (I doubt the word palindromic features in many conditions :P).

It's good to know it's possible and that somebody else has experienced something like it. Honestly I'm still a bit stuck in the negative mindset from "it's all in your head" kinda reactions from docs so I'm glad to have somebody who can back up my experiences a bit.

I'm glad you're doing relatively well with what's come your way and hope things keep positive for you.

Thanks again.

[AgedCrone in reply to BubbleMonkey]

There was a very good article in the NRAS magazine about a young woman who kept going back to her GP telling him about these pains that come & go.....she was eventually sent to a psychiatrist because she never managed to see the doctor when she had the swollen painful areas...& kept getting the old,old story " it's all in your mind"!

I'll see if I can find it on the NRAS site ...I think you would find it very interesting reading.

[BubbleMonkey in reply to AgedCrone]

Oooh. That would be an interesting read for me. Unfortunately I had some MH issues a while back and that kept on becoming the focus of stuff. To be fair I guess it's pretty difficult for a GP to recognise obscure conditions like this, but it's still been so frustrating.

I'm pretty sure I only got my rheumy referral so I'd stop bugging them. Worth it though. Feels so much better to have answers at least!

[AgedCrone in reply to BubbleMonkey]

The average GP doesn't have much knowledge .(or interest.) in RD's. When I first went to my GP with Trigger Finger,& the pains in my arms I was told I should expect aches & pains at my age...I was in my fifties & refused to accept that, so I went off& paid to see a Rheumatology Professor Privately....& he diagnosed PA & referred me to a rheumatologist at UCHL, who had a special interest in PA....unfortunately he retired but as I moved house at that time he referred me to a colleague & I have been with him ever since.

It seems to me, caught early PA can be well controlled,& if your rheumy has diagnosed you he is obviously on the ball...so stop worrying & enjoy the Christmas holiday.

[BubbleMonkey in reply to AgedCrone]

Thanks

My rheumy appt was a one off thing, but now that I have he diagnosis at least I can show I'm not crazy.

[AgedCrone in reply to BubbleMonkey]

But don't relax & think it's all over.

You may be lucky & it just goes away, but as soon as any of your symptoms get worse hot foot it back to the rheumy.

I'm convinced starting Dmards very early kept the PA under strict control & enabled me to have a half way decent retirement.

No tennis of course,bu plenty of travel visiting friends all over the world, which if I'm convinced was only possible because my treatment was overseen by a rheumatologist,& I didn't just rely on GP's who shove Prednisolone at you & because you are not in agony, you go along with this advice.

Keep control of your own health.

[BubbleMonkey in reply to AgedCrone]

Thanks for the advice.

Yeah given my GP practice decoded to put me on maintenance dose of vit D when my consultant wants me on the strong dose for the rest of my life (he was not best pleased when I told him) I will be asking for a referral for any PR related stuff even if I need to pay for it.

I don't really trust them for anything long term by this point.

Don't get me wrong I can see why there's the issue and I don't think they're bad at their jobs, this stuff just isn't their job- it's too specialist.

[helixhelix]

Don't have it myself, but as something close to RA it seems logical that it could create the same random pain that RA does. The description from the rare disease centre (below) suggest that it can cause similar systemic symptoms....

rarediseases.info.nih.gov/d...

[BubbleMonkey in reply to helixhelix]

Thanks for taking the time to reply and providing that link.

[janmary]

Yes, I have a sort of muddled Palindromic/RA diagnosis - seropositive, but random and non- symmetric (although it's getting more typical as the years go by)... But I have been told that the RA inflammation affects tendons as well as the joints themselves, and inflammation in a joint can put pressure on nerves - both reasons why pain can be felt away from the joint itself. Its hard when it comes and goes to explain or even understand yourself what's going on sometimes.

[BubbleMonkey in reply to janmary]

Thanks Hearing it explained like that helps it make sense more.