Update on pain: Hi everyone, We’ll talk about... - PMRGCAuk

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Update on pain

2013mayo profile image
31 Replies

Hi everyone,

We’ll talk about quick reply, I sent an email to rheumatologist this morning and a nurse phoned me about 1/2 hour ago, he discussed the pain I’m experiencing and talked it with a rheumatologist and said because my markers are not up it can’t be PMR and therefore it must be osteoarthritis. How so many joints can all hurt at the same time is beyond me, I know osteoarthritis and this is not the same pain.

Where I go from here is anyone’s business.

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2013mayo profile image
2013mayo
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31 Replies
DorsetLady profile image
DorsetLadyPMRGCAuk volunteer

Not good…..sorry to hear that.

Constance13 profile image
Constance13

He’s wrong! Quite a few PMRers have low blood markers - especially if they have had PMR for a long time.I have inflammatory arthritis as well as PMR and I can usually tell the difference between the two things (not always though). Can you speak to your doctor? A lot of patients go by what their doctor says rather than their rheumy.

2013mayo profile image
2013mayo in reply toConstance13

Well I’ll try, problem with my doctors is once they get a specialist saying one thing they are very reluctant to go against them .I may well just up my pred and see what happens, regardless of what’s been said.

PMRpro profile image
PMRproAmbassador

Well - we know he is wrong! The markers can lag a long way behind ...

123-go profile image
123-go

A diagnosis of osteoarthritis over the telephone is surely a miracle! You could try writing to your rheumy respectfully requesting at least an X-ray to confirm (or otherwise) osteoarthritis and stating your reasons.

All this head banging against a brick wall is so stressful!

2013mayo profile image
2013mayo in reply to123-go

O h I agree, can’t understand why they are being so difficult

PMRpro profile image
PMRproAmbassador in reply to2013mayo

Makes them feel powerful ...

Rugger profile image
Rugger in reply to2013mayo

My rheumatologist arranged an X-Ray recently so that she could see if I have a form of arthritis, rather than inflammation due to PMR or GCA. The report was no arthritis! She is an excellent 'detective'!

Where are you in the UK? I'm sure someone could recommend another rheumatologist not far away.

2013mayo profile image
2013mayo in reply toRugger

Hi,Oxford, the rheumatologist at the Nuffield orthopaedic centre are specialist, I don’t just see one of them, they seem to vary from time to time.

I’ve phoned my doc today and waiting for phone call, I’m in terrible pain and can’t continue like this, I know osteoarthritis pain and it’s not that, further more be had hip replacement so I can’t have arthritis in that hip.

PMRpro profile image
PMRproAmbassador in reply to2013mayo

Hmmm - not the first time someone from the Oxford area has had problems with the doctor's thoughts about PMR. And a diagnosis over the phone is NOT acceptable.

Oxford? Know what my next move would be if I could achieve it.

PMRpro profile image
PMRproAmbassador in reply to2013mayo

I was informed by a rheumy early in PMR that my hands and the knee that were painful were OA, she could "feel" it. Thirteen years later I had an x-ray for a return of similar pain in the knee - it got right royally mangled in a ski accident, it is to be expected. x-ray said no sign at all of any arthritic changes. Then there was the MSK "specialist" (a physio with an extra bit of paper to his name) who said that since I could touch my toes I couldn't have a back problem. Apparently wasn't familiar with hypermobility which comes with its own problems. And I have a scoliosis.

2013mayo profile image
2013mayo in reply toPMRpro

Hi Yes I too have hyper mobility, it doesn’t help with diagnosis of various joint conditions.

Pixix profile image
Pixix

Hard luck…hope you find your Doctor is helpful.

jinasc profile image
jinasc

Find another Rheumy would be my next step........................

Nextoneplease profile image
Nextoneplease in reply tojinasc

This is quite often said on here jinasc - but what’s the best way of finding one?? Sorry if I’m being dense….😊

jinasc profile image
jinasc in reply toNextoneplease

You are not dense.

Send me a PM with where you live and where you are prepared to travel too. I might just have one near you.

Off for some lunch now - will drop in later.

Nextoneplease profile image
Nextoneplease in reply tojinasc

Thanks all 😊

Actually I feel quite stable PMR wise at the moment, although of course that could change at any moment.

My immediate priority is to try to help my eyes out. I’ve had one cataract done, but as I still have to wear varifocals, I have double vision practically all the time (due to the imbalance between the eyes). Optician says they can’t change my lens for the operated eye for another couple of weeks - and then I’ll need another change after the second cataract is done. Plus new prescription sunglasses! All a bit complicated, expensive and literally headache inducing!! I’m sitting here now peering at the screen with one eye closed…..

So I will follow up the rheumatologist issue but now isn’t the moment. Sorry!

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply toNextoneplease

All a bit complicated, expensive and literally headache inducing!! I’m sitting here now peering at the screen with one eye closed….

Tell me about it! ….😜 When only possible to have one cataract done it has to be long vision, so even with one lens plain, one varifocal, spectacles don’t work out cheap either…but at least prescription doesn’t change now…..but I do have 4 pairs….

You might find patch over bad eye until it’s operated on helps to focus when doing close work!

Nextoneplease profile image
Nextoneplease in reply toDorsetLady

Thank you DL 😊 I have been thinking about you, I have to say x

Actually close work is not so bad (which is why I can see the screen reasonably well). I just wear reading glasses, which work okay with the implanted distance lens.

It’s middle and distant that’s the problem, as my operated eye now has an implanted distance lens, plus the varifocal one in my ‘normal’ specs - so it doesn’t know how to focus and ends up wandering all over the place, giving me double vision….😳 I can’t not wear the specs as I then can’t see much with the non operated eye…..So social occasions, watching tv, even just chatting across a room, are very difficult. Hey ho, hopefully might be sorted out around the end of May 😬 x

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply toNextoneplease

“…so it doesn’t know how to focus and ends up wandering all over the place, giving me double vision”

Remember that distinctly, not a pleasant feeling…..but as you say only temporary. 👍

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply toNextoneplease

Ask on a new post for recommendations giving area prepared to travel. , although I do believe jinasc has a list - sure she'll pm you...or you could pm her.

PMRpro profile image
PMRproAmbassador in reply toNextoneplease

Depends where you live, if you can travel and if you can afford a private session ...

jinasc profile image
jinasc in reply toPMRpro

Sometimes depending on the Gp we have managed to get an NHS referral. Just means a bit longer wait. Some on the list don't do private.

Just switched someone last week. Hope it works out. 🤔

Grammy80 profile image
Grammy80

Oh! I do hope you can get this sorted out. I know, sometimes we just have to prioritize and it seems doubly difficult (no pun intended) when it is simply difficult to see. 💖

Nextoneplease profile image
Nextoneplease in reply toGrammy80

If this is for me, Grammy, thank you 😊 I tried the hospital today but they have no appointments before 8 March. Tried the optician several times - no reply at all ! Will try again tomorrow.

Thanks again 😊xx

Grammy80 profile image
Grammy80 in reply toNextoneplease

Most certainly my message was for you. Sometimes even being on the phone for extended periods with no results is exhausting...most of the time. Recently when I had trouble with my eyes, my insurance company (here in the states) rejected the eye drops the doctor prescribed. I wanted them so badly I asked how much it was out-of-pocket, it was $2,000. Imagine! My doctor put in a special preauthorization and I heard nothing. After a week I started calling the insurance company and after an hour and a half and three representatives later; they approved it. We all have to push for what is right and you seem to persevere~! I truly wish you the best and we all know the virus isn't helping. Take care~💖

CarolF1312 profile image
CarolF1312

I have the same issue with my Rheumatologist. Whilst she reluctantly continues to treat me for PMR she thinks that my problem is probably OA as my bloods are never massively raised.My question , could OA in neck, shoulders, hips appear almost overnight ? I thought that would be a gradual deterioration.

PMRpro profile image
PMRproAmbassador in reply toCarolF1312

Your bloods SHOULDN'T be raised if you are being treated properly!!!

OA rarely appears overnight - nor really do lots of other things. Except PMR.

CarolF1312 profile image
CarolF1312 in reply toPMRpro

Even before I started Pred ESR and CRP were raised but not significantly above norm.

2013mayo profile image
2013mayo in reply toCarolF1312

I feel exactly the same, how can my neck my arms and my hip (that’s had hip replacement) all be hurting at the same time with OA.

PMRpro profile image
PMRproAmbassador in reply to2013mayo

Highly unlikely I'd have thought, Especially OA in a hip prosthesis!!!!!

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