RA QUESTION

[14penny]

why does my rheumy say it is not the RA causing muscle pain and big toe pain and numb feet and there is not much inflamation going on when I am in so much pain especially lower back and he says I need to see my GP but when I see GP they say i need to see rheumy Grrrrr. feel like a ball between 2 bats (batty bats) what am I supposed to do, has anyone had similar or have I just got a lazy rheumy.

[Deeb1764]

I had this question and I landed up seeing a private consultant as body was horrendous and got diagnosed with to go with my RA Fibromyalgia.I am not saying it is this but worth reading up on

[14penny in reply to Deeb1764]

Thanks Deebi.

[Wobbies]

Had the same experience. Saw a rheumy privately and then got referred to him on the NHs as he believed me.

[14penny]

Thanks Wobbies that was fortunate he worked on the NHS I saw a proffesor at Guys and he was so helpfull for another complaint I might try to get my GP to write to him as I know he covers RA.His name was Tim Spectre and I know he is very good just a bit worried my rheumy will wonder why I am trying to go elswhere. Thanks again.

[Summerrain14]

Hi lovely I think RA doesn’t necessarily affect these areas specifically or muscles but other conditions can cause pain and inflammation in the lower spine and muscles. Did your rheumy give you any thoughts of what was causing the pain? x

[14penny in reply to Summerrain14]

Thanks for reply and I am just wondering what to do as no one seems to have any idea and to top it all I turned a bit funny while ironing and got a sharp pain from buttock down leg which I think is sciatica and I know I have spinal stenosis with scoliosis, just not sure where RA plays a part in all this. Rheumy is not really interested in other problems.

[Mmrr]

I'm in a similar situation just now, the rheumatologist says my back issues are neurological, she hasn't examined me and all communication has been via the nurse as a go between. I do have a F2F appointment with her next week. I'm flaring and not too well. My neurosurgeon says my back issues are rheumatological. He has examined and MRId me, my facet joints are inflammed.

My GP is very good and is just hoping that something positive comes from my consultation next week.

Although not so common as small joint involvement spinal joints and hips can have synovitis.

Personally I would pursue the rheumatologist.

[14penny in reply to Mmrr]

My thinking too, I have tried and he says leaning back in his chair with a resigned look on his face saying back problems and pain everywhere are nothing to do with RA and does not give me much help as to what to do apart go back to GP and let them sort it out which is my only option, but thanks for reply.

[Mmrr in reply to 14penny]

Have you considered writing to your rheumatologist? I usually find writing gets things moving along.

[14penny in reply to Mmrr]

Thanks Mmmr, You know I never thought of writing to my rheumy it does sound like a good idea and I might give it a try, maybe they will read it a couple of times and think of something that could help, Take care.

[Mmrr in reply to 14penny]

By writing your concerns down, they are in your medical records and it cannot be denied what has been said. I always take a written update to every medical appointment asking for it to be scanned into my notes. My quality of care has improved immensely , and my appointments tend to run much quicker and smoother as the rheumatologist can get right to the matter of issues I wish to discuss.

She seems to like them and the neurosurgeon who operated on me last year, sang it's praises, he annotated my update as he asked questions with his own details and it was scanned into my notes.

[14penny in reply to Mmrr]

Great stuff I will try and do the same| Thanks

[Blodynhaul in reply to 14penny]

I have emailed my Rheumy a few times, as she is so hard to deal with & I felt I wasn't listened to & not having questions answered. It has helped a lot as she is taking me more seriously and I had a surprise session with her just to answer my questions following my email after having been rushed in and out without any discussion on starting a JAK & not being able to ask questions etc . So - yes very good to email. I find I can write better & not miss things out that way as so bad on the phone.

On your main point - I have the same issue that I'm convinced is separate from the RA - horrible, chronic pain in shoulders, upper arms & sometimes torso/diaphragm - agony to move in the night & to use arms daily - the connective tissue/muscles whatever they are - but in my view completely separate from the RA symptoms & joint inflammation. I was answered with disdain, impatience and incredulity when I questioned if these pains are 'something else'. Her answer was " O that's just chronic pain" ! I couldn't get more out of her, but was very upset with it being dismissed & no hope being offered for a way to improve it. Still hoping the new JAK I've been on a month may help with that side of things, but so far not!

But yes, write or email definitely. Good Luck!

[Sheila_G]

It sounds like you need a chat with your GP. Rheumatologists are specialists in their field and this sounds like it is another issue. Good luck x

[14penny in reply to Sheila_G]

Thanks Sheila all comments are very welcome. Take care.

[Tkat10]

I have had similar problems in the last couple of years where they are starting to say my problems are osteoarthritis related! Been diagnosed over 20 years now and now over 50 so many of what would have been badged as flares have apparently been rebadged! I am very good at when my ra is back under control at pointing out that whatever the problem was that they had said was osteoarthritis has miraculously resolved with the ra medication!

[14penny in reply to Tkat10]

Thanks for reply it is good to know what everyone is going through, Thanks again and take care

[Blodynhaul in reply to Tkat10]

Weird isn't it. Really makes you wonder sometimes if the specialists know what's going on or not! As time goes on, we know our bodies better & better & are better judges of it all. My rheumy in December also suddenly threw in that "of course" my hands have osteoarthritis too (as well as the longstanding RA). That's never been mentioned before though! Sounds like you definitely know the difference in your own body, far better than the rheumy!

[Mmrr in reply to Blodynhaul]

No disrespect to any Dr, but they don't know what is going on a lot of time. They are trained to look for the obvious, around 20 % diagnosis are not correct (more according to some research).

[Whitegate]

- in same boat as me and many more , I guess. Disc prolapse, RA and old age - all overlap. Keep active if you can.

[14penny in reply to Whitegate]

Thanks for reply I do try to do all of these things, Take care

[Valerietemps]

I wonder who is doing your blood work? It will show your inflammation rate. Also big toe pain can be gout which should also show in bloodwork. I saw my rheumatologist today with severe wrist pain, this can also be either RA or gout. I have had degenerative disc’s disease for years, this also messes with your spine and causes pain. Get copies of your blood work and get it explained to you.

[14penny in reply to Valerietemps]

Thanks for reply, I am making notes for when I next get to talk to rheumy thanks for your kind comments and I have joted it all down. Take care

[Green230461]

Keep asking questions until you find a sensible medic with an answer. When you find them keep them close! Don’t be fobbed off you deserve better! New year resolution find answers🙋🏻‍♀️

[14penny]

Just thinking, all of the replies I have had makes me really mad it seems there are doctors out there that are really good and others well I think we all can suss them out as you say the older you get you know your own body and how it reacts more and more and sometimes these doctors say the obvious as if it is a revelation - just saying xx