Despairing for Pain relief: I am in constant pain... - PMRGCAuk


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Despairing for Pain relief

michaelegan profile image

I am in constant pain which is seriously impairing my daily life. The medication is not

doing anything to relieve it. I am having Cimzia injections every two weeks Tramadol 100mg four times a day, Paracetamol 1000mg four times a day and prednisolone 28mg daily. any advice on pain management

15 Replies

You do have a lengthy list of medical conditions, but it seems that the meds you are taking now don't work for PMR. If that condition is causing the pain then I think that you need to see your rheumy soon as they might need to be tweaked. I don't think that Tramadol does anything for PMR pain either - it doesn't for me. If it is the RA flaring it would suggest that the Cimzia isn't doing as much as it should.

As far as pain relief goes, I find distraction to be the key element. That and frequent rests help me cope on a day-to-day basis.

Thank you


Does your local hospital have a pain clinic you could be referred to? Is your pain being managed by one person or several from different Depts putting in their penny's worth?

michaelegan profile image
michaelegan in reply to SnazzyD

Thank you

I am sorry that you are in a nightmare spiral of pain and at a loss to which of your painful conditions is causing the most trouble. PMR does not behave like this on its own, 28 mgs of Pred. Should be controlling that aspect of your condition to manageable levels.

Is it possible for you to get a referral to a pain clinic at all?

I attended Mindfulness classes with a woman who was in constant debilitating pain, this gave her good strategies for managing it. People who meditate have also managed to lift themselves out of pain.

I agree with Polkadot about distraction ( easier said than done). When I care for my 2 year old grandson and get absorbed in painting, crafting and imaginative play, I forget how I'm feeling that day completely. Gentle walks, really noticing nature are helpful to me too.

The very worst thing for me is do sit there thinking "I feel so dreadful, I can't bear this,life is hardly worth living" believe me I've been there, that despair is dreadful and it intensifies the pain I'm sure.

So more discussions with the medics, research about pain clinics, Mindfulness classes, meditation classes, an absorbing hobby - maybe explore something that you used to do when young michealegan - did you ever make models or fish or paint or draw?

You cannot stay in this place of despair, bless you.

Very Helpful Thank you

PMRpro profile image

If you are supposed to have PMR then 28mg should be doing something - if it isn't I doubt whatever is causing the pain is PMR. Or, and it is possible, you are what is called "steroid resistant". That may not mean all corticosteroids though - 20mg of Medrol/methylprednisolone did next to nothing for me, 15mg of a form of prednisone provided the anecdotal miracle! Perhaps your rheumy would try methylpred for you if prednisolone does nothing.

That paracetamol dose is the absolute upper limit and I believe it has been recommended it should be reduced - certainly it is less for patients with certain other co-morbidities or weighing less than 50kg. Has your GP checked your liver values with you being on such a high longterm dose? He should do.

For pain management request a referral to a pain clinic - they are able to offer a lot of help on the NHS.

I've just been able to read your other posts - the fact tocilizumab did nothing also contributes to the suspicion it is not PMR as several people who are trying it in the US/Aus have found it helps and it does work in GCA.

If your pain is not being controlled at 28 milligrams of prednisone then I would start doubting that you have PMR. And I would start wondering why your pain is not being controlled with the ppain medication you're on now. Your situation is rather curious because PMR pain does not respond to pain medication it only responds to prednisone. However I would think any other kind of pain from any other type of source should respond to the other pain pills that you're on. So I'm in a bit of a quandary. But since you're not getting a response from either one of those types of drugs and your doctor treating you still doesn't know the reason why I think I would seek help from another doctor. I'm assuming you're seeing a rheumatologist. If not you definitely want to.

You don't say what the pain is. As the others have said it is prossibly not PMR as you are taking a reasonably high dose. Also you are on the top end dosage for both Tramadol and paracetamol. Have you been diagnosed with RA or PMR?

According to the Rheumatologist I have PMR Osteo & Rheumatoid Arthritis. The is mostly both shoulders and neck. I'm told it's bone on bone causing the pain

piglette profile image
piglette in reply to michaelegan

I think the rheumie may be wrong about the PMR, of course I may be wrong! Bone on bone is often caused by cartilage being worn away by osteo arthritis causing degeneration. Have you had an xray? Rheumatoid Arthritis tends to cause swelling and stiffness plus fatigue. It usually starts in the hands and feet but not always.

He says the PMR is controlled as the inflammatory markers are down. So far as the shoulder and neck he says the damage is done and he can't do anything about that. I should have mentioned that I have osteoporosis and suffer from atrial fibrillation so I am on a cocktail of medication and I suspect some interaction is happening as a result. Thank you for your helpful observations

piglette profile image
piglette in reply to michaelegan

Hi Michael How does he know the damage is done if you have not had an xray?

I'll ask him Thanks piglette

piglette profile image
piglette in reply to michaelegan

Good luck Michael.

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