Can PMR get in every muscle in your body

[jwb43]

I'd like to know if it's normal to have PMR muscle pain in every muscle in your body? I have bilateral muscle pain in every muscle group except my stomach and my chest.

[DorsetLady PMRGCAuk volunteer]

Hi jwb43,

Just had quick look through your other posts, and note you say you have had PMR type symptoms for about 4 years without much treatment apart from a few weeks on Pred.

If that's the case then if it is PMR it has had plenty of time and opportunity to work its way around your entire body, so I wouldn't rule it out. As a matter of interest have you been tested for other illnesses during that time?

PMRpro had PMR undiagnosed for about 5 years, so I'm sure she will be along shortly to give you her expert opinion.

Sorry can't be more positive, but think you certainly need more investigation.

[jwb43 in reply to DorsetLady]

Thank you all for your answers. I'm very concerned about where this will all lead since I just cannot tolerate prednisone. As much as I hate this pain I think it's better than the severe Side effects I receive from taking prednisone. I feel like I'm between a rock and a hard place. Does anyone know of any cases of untreated treated PMR. That's assuming it doesn't evolve into GCA also.

[mzz70-70 in reply to jwb43]

I am so sorry you cannot tolerate Prednisone. Its such a wonder drug for PMR and without it I would be in the funny farm now ! I did try to stay away from Pred at first but gradually the pain went through all my body and I could hardly get out of bed. Eventually gave in to 15mg of pred and the results were almost instant. Yes there are side effects, with me it was extreme fatigue and the full moon face but with the tapering every 6 weeks these side effects diminished, albeit slowly. I cannot imagine putting up any longer with the pain of PMR. I tried over the counter painkillers for 6 months but they did nothing at all except make me feel sick.You really are between a rock and hard place but my advice would be to take 15mg of pred and in time with tapering the side effects will be less, so dangerous to go untreated. Good Luck....Mazz

[PMRpro Ambassador in reply to jwb43]

You could ask to try methylprednsiolone (injections or oral) or prednisolone or one of the other corticosteroids. I have horrendous side effects with methylpred but not the others, you may be OK with one of those.

But if you have PMR and can't/won't take prednisone the only thing you can do is discuss it with a rheumaotlogist and possibly try DMARDs - they do help some people. Or you investigate the possibility of tocilizumab - there are some US rheumies who have trialled it as pilot studies in PMR. Others will reassign the dx as rheumatoid arthritis, trial you on a DMARD and then try tocilizumab, which may then be reimbursed. It needs to be - it is expensive.

But really - those are your options. There are no other ways of managing PMR. Basically, you take pred or you live with the pain. Some people claim really way-out juicing vegan diets help - yet to see any proof though.

[PMRpro Ambassador]

If you aren't on pred then yes, eventually you can hurt all over! I did.

[lesley2015 in reply to PMRpro]

Me too PMRpro, and I also developed the CGA as not diagnosed sooner

[tangocharlie in reply to PMRpro]

Ditto the hurt all over, that's exactly how I described it to my GP, nearly 5 years ago

[HeronNS]

When my doctor asked me where I hurt and I said "everywhere" she said I needed to be a bit more specific (this wasn't the doctor who diagnosed me). But polymyalgia actually means "pain all over" or "pain everywhere".

[Sallyaches]

Before being on Prednisilone my muscles were so affected that in my shoulders and arms they were painful to touch. I was sitting on the edge o f the bed most nights for a few hours as even lying still hurt and I couldn't face anymore movement. I would take a lot of convincing to refuse Prednisilone in that state.

[jwb43 in reply to Sallyaches]

I have not gotten that bad yet and it has been 4 years. But it is spreading through my entire body and I can no longer exercise of walk very far. So frustrating.