Question

[Patmar]

Does physio or massage of any sort help PMR?

[PMRpro Ambassador]

Physio should only be done by a therapist who REALLY knows what they are doing in PMR. While some SAY they do, it doesn't always follow - as one lady discovered when her physio kept asking why she was taking pred!

"Normal" physio where you are given repetitive or sustained exercises really is contraindicated in PMR - they just play into the problem in PMR and can leave you in pain afterwards for some time until your muscles recover. The blood supply to the muscles is poor in PMR, it improves with pred as it reduces the inflammation that is the cause of the problem, but the underlying autoimmune disorder that causes the symptoms we call PMR is not changed by the pred and your muscles remain intolerant of acute exercise. That means they don't signal that you have overdone things and then take much longer than normal to recover. Going for what is a normal walk can have a similar effect to running a long distance race without training!

Celtic on here will probably tell you more about what they were told by an experienced physio at a support group meeting - gentle massage (deep massage can release more cytokines, the inflammatory substances and cause even more PMR symptoms in the short term) and very gentle mobilisation are OK but not anything like sticking you on a static bike for 20 mins which I have come across! Hydrotherapy is ideal if you can access it. I did aqua aerobics in a warm pool and at my level not that of anyone else in the class - that is very important. A cool pool was out of the question, I just seized up.

Otherwise, walking is good. A current clinical study in the north of England is issuing pedometers to patients and encouraging them to increase the number of steps they walk. Start with short walks and build up slowly - and it is a good idea to make sure at first you don't get stranded somewhere! You can be doing any sort of gentle exercise and suddenly you feel as if you have hit a brick wall of fatigue - there are a lot of stories in circulation about embarrassing incidents of that sort!

If you are used to doing a lot of exercise then you can probably carry on - but at a much lower level and for shorter periods, at least at first. It depends on how badly your PMR affects you and it really is important not to get over-tired - that just contributes to the fatigue and it can even lead to a flare of the symptoms if you are not very careful. You WON'T "cure" your PMR by exercising your way out of the illness.

Appropriate rest is essential - you will probably manage far more by doing it in small bites. Say 5 or 10 minutes walking, a short rest, rinse and repeat. But it is very individual, like everything in PMR.

[Hidden in reply to PMRpro]

This is very interesting ,my physio seems to think that the more exercise I do the better for me . She made me feel as though I was shirking . Here are your exercises for the week off you go and do them is the idea . I stopped going to her .

[PMRpro Ambassador in reply to Hidden]

Then she hasn't a clue about PMR and you made a very wise decision!

[Runrig01 in reply to PMRpro]

I have been seeing physio since February, I'm lucky in hat I can self refer. I have made headway since February, and can now with some effort rise from floor to standing.

A week on Tuesday, I start a 4 week course of hydrotherapy, and am optimistic having read your views. X

[bunnymom in reply to PMRpro]

Thank you for the explanation of how the muscle don't send fatigue messages. Sometimes I am finding I have overdone when I didn't feel it at the time. That explains it!

[OrwellMan7 in reply to PMRpro]

PMR and Arthritis and Acupuncture.

Both I and my 86 year old mother have PMR, Mine is diagnosed whilst mums is not yet. Her GP says she just has arthritis and he seems to be opposed to steroids. Her condition and her symptoms are getting much worse and I can identify with them. We sent her to a rheumy privately who gave her an injection in her bottom which gave some relief but was not conclusive on a prm diagnosis saying he would see her again on the NHS, BUT WHEN?

Now she is in a no manS land not knowing where to turn to. She is considering acupuncture, but having just had a massage which, as you have said in this thread , is not a good idea to her cost, is wondering about the value or otherwise of acupuncture, Can anyone help?

By the way following my earlier post , PRM and Diabetes,I saw the rheumy who dismissed the letter from the GP in which she requested him to take me off pred and onto mexa. He said once on that drug you will be on it for life, also the blood readings which concerned the GP , caused him no worries, even saying they were good... for me. Thank you and best wishes to you all.

Dave

[PMRpro Ambassador in reply to OrwellMan7]

I'm with the rheumy who is saying not to use methotrexate - it isn't going to replace the pred if what you have is PMR.

At least one lady on this forum tried acupuncture and it did nothing. Quite why your mother's GP is so against trying steroids is a mystery to me - I wouldn't have thought it is likely to do a great deal of harm at 86 and she would possibly be a lot more comfortable - without trying it you can't tell can you!

If you are happy to continue to pay for your mother - why not contact the rheumy again and find out what is on his menu. Usually they put in a request to transfer the patient to their NHS list.

[OrwellMan7 in reply to PMRpro]

thank you, yes he has done that but of course the time delay, and not knowing causes her stress , on top of the pain and inability to move. I am looking at Bowen therapy for her. Interesting that her former GP diagnosed PMR and pred. then we moved her and her new GP dismissed the diagnosis and stopped the pred. The GP is Spanish and otherwise seems to be a good GP.tHANK YOU FOR YOUR HELP AND SUPPORT. Dave

[PMRpro Ambassador in reply to OrwellMan7]

Funny - some of the top experts are in Spain - but I suspect that many of the ordinary doctors don't see it much as it is far less common that far south. No chance of another doctor I assume?

Did the pred from the first GP help? A dose of 15-20mg should have achieved a notable improvement within a week or so. If it didn't - then the concept of PMR needed to be rethought.

[OrwellMan7 in reply to PMRpro]

Thanks for that, she was diagnosed in July last year by her then GP in Sussex, Herstmonceux, and prescribed 30 mgs pred. which worked quickly. On moving to Bexhill her new GP saw her blood results which were presumably clear and angrily asked who put her on pred, she next saw her now GP who happens to be Spanish, and seems to be pathologically opposed to steroids. Interestingly I was there when I had a severe flare and he approved me being on 30 mgs, as a temporary patient, that was back in February. So from July 2015 she started on 30mgs and tapered down to 2.5mgs by February 2016, at which time she had shoulder/arm pain. From the knowledge I have gained, from you and this forum, she tapered too fast ,too quickly. I think we need the private rheumy to come to a speedy conclusion and advise the GP to prescribe pred. Achieving this from where I live in Cumbria is the trick. I would appreciate your opinions please.

Dave

[PMRpro Ambassador in reply to OrwellMan7]

How bizarre - one rule for you, one for her. Unless you can contact the private rheumy I can't really suggest anything. Or can you speak to the GP and persuade them that 5mg pred keeps her pain-free and would they please consider that in the meantime. It would have to be face-to-face, preferably with your mother present, or they'll just quote patient confidentiality at you - quite rightly of course.

[OrwellMan7 in reply to PMRpro]

it transpires that the GP believes she has a suspect kidney function blood result, which she was unaware of. Today the private Rheumy has said he will see her on Monday as an NHS patient at Bexhill. The best news we could hope for. I f you are interested I will keep you updated. Meanwhile I am up to 10mgs and still stiff and fatigued, oh well.

Best wishes

Dave

[PMRpro Ambassador in reply to OrwellMan7]

Of course I'm interested - this sounds like a good result. As for your good self - you've been under a load of stress have you not? PMR and stress are NOT good bedfellows! Sit down for a rest - or have you got to shoot off to the deep south?

[piglette]

I have had two physios, both knew about PMR and both have been fantastic. They both said that ultra sound seems to help their PMR patients as it is very soothing.

[Celtic PMRGCAuk volunteer]

Patmar, yes as PMRpro has mentioned, a physio at one of our support group meetings was of the opinion that manual physiotherapy techniques are contra-indicated in patients with PMR and on long term steroids, especially at the outset, but he recommended a gentle stretching and exercise programme to help with the secondary effects of limited function.

I had a disastrous experience with physiotherapy pre-diagnosis when, because it was considered that my spinal injury was to blame for the pain, manual traction was tried on my legs at a couple of appointments, and this led to me being totally disabled. Once diagnosed and in the later stages of treatment (and wiser!) I only sought physio treatment whilst at the very low steroid doses to deal with knots in my shoulder muscles rendering me unable to sit back against a chair. This time the therapy just involved gentle massage, heat treatment and ultrasound, and it proved very successful.

[elainemwh]

I did find it really helped me. At one point I was having a sports massage every week. I have stopped at the moment and my muscles are definitely more stiff

[TooSore]

I am getting cranial-sacral therapy and find it very helpful. I feel a better sense of well ness, more like myself when finished. Almost like its a reset button. Also, I have gone when I had swelling in my knee because of a tear in my meniscus ( from walking) and the next day the inflammation was much improved.

[Doralouise77 in reply to TooSore]

TooSore - is cranial-sacral therapy something most physios would know how to do, or is it a specialized treatment?

Thank you,

Cheers

[PMRpro Ambassador in reply to Doralouise77]

I only know it as an alternative therapy so no, I doubt the average physio would include it in their repertoire. Some people who do Bowen therapy offer it and in some ways it is similar being a very gentle bodywork therapy. I haven't tried it - but if it works for someone I wouldn't reject it. Try it and see is the only way to know if it helps you.

[TooSore in reply to Doralouise77]

The therapist has special training but it can also be done by an osteopath (MD) which seems to be call manipulations. I think it's somewhat similar to Bowen therapy based on what I've read but I'm not really sure. I believe that there's a center near Boston where people can get trained.

[Doralouise77 in reply to TooSore]

I've had Bowen therapy once before for something else but it didn't help, maybe I should have done it more often though. And I don't pay for physio but would have to for any other types of treatments so that's always a consideration.

Thanks everyone for your input,

Cheers

[TooSore in reply to Doralouise77]

I am in the U.S. So I think insurance works differently but I am attempting to get the CS therapy paid for with a letter of medical necessity from my doctor. I was told to try the therapy 3 times, once per week before deciding if it helped. I thought it had after the first visit. I find the quiet rest is helpful - shutting off the world for a moment so to speak. But I also think my PMR was set off by stress. I am now attempting to find better ways of managing stress to hopefully help in my healing or at least help me not have a relapse down the road!

[haymog]

New to this first post, I have had PMR for eight years and was on pred for seven and a half of those, first two years 20 mm control worked well but each time on reduction it flared up again. I was refered to rhumy six months ago and had scans x rays and blood tests, he advised reduction to zero in four weeks followed by further tests then advised physio. after six weeks of Physio and continual pain he said nothing more he could do, returned to doctor and was given Naproxen only to be taken when needed and no more than two a day not to be taken daily. I have had no relief as they do not seem to have any effect. I now have difficulty dressing and moving in a morning and constant shoulder and neck pain, I am beginning to feel that I will never be free from this pain and have lost faith in my doctors. Physio may help you and it is worth a try so go for it. I am seventy three years old and have always been fit and active until PMR struck. I wish you more success and good luck with physio.

[PMRpro Ambassador in reply to haymog]

I am slightly taken aback that rheumy suggested reducing to zero over a period of 4 weeks and you were very lucky you didn't have an adrenal crisis!

I'm not surprised you have lost faith in your doctors. Are you in the UK? Maybe someone can recommend a rather more sensitive and forward thinking rheumy.

[haymog in reply to PMRpro]

Thank you for your reply PMRpro, I am in the UK and the first doctor a saw was excellent and really worked hard to identify PMR. However the medical center I attend seems to have a regular turnover of doctors and it is difficult to obtain continuity in understanding and treatment. After reading other posts I see that driving seems to have a bearing on flare ups, I used to make a five hundred mile round trip to my workplace in Scotland every week and and used to be in agony after each trip, this has become a real problem since I have retired and now sometimes find it difficult to drive a mile and a half to my allotment daily. Just being a passenger results in pain and difficulty moving or getting out of the car, I have no problems walking for two or three hours and only get pains after sitting for an hour or more. Any tips from others would be welcome.

[PMRpro Ambassador in reply to haymog]

As I say - tell us about where you live and maybe we can suggest a sensible rheumy! Chertsey is particularly good - but obviously as it's a bit further than 250 miles from Scotland it won't be close to you!