Has anyone on here been referred to physiotherapy for the pmr?

[Abigail1]

[PMRpro Ambassador]

Being referred for physio when you have PMR can be very useful provided the physio knows about the limitations due to the PMR. Physio on its own can't/won't do anything to cure or improve the PMR, only pred can do that, but it is important to keep mobile and prevent bad habits in movements (walking and so on) which you tend to develop to reduce your pain and which can become ingrained with time and lead to other problems. It also helps avoid muscle wasting due to taking pred which can sometime happen.

Different people respond in different ways to physio - I always benefited from massage for example but some people find it makes them worse and good physios know they have to be very careful. I had myofascial pain syndrome too (small foci of inflammation, especially in the lower back, which cause sort of knots of spasmed muscle) and the physio was able to work on that too by special mobilisation techniques. They may be able to help if you have bursitis as part of your PMR - there are differing opinions about that.

You must be careful though to not overdo any form of exercise, whether it is physio or anything else, because when you have PMR it takes your muscles much longer to recover from any set of repeated exercises. I was bothered with claudication - the pain you get with repeated use of a muscle because the blood supply is not good enough which goes away when you stop and then comes back when you start again - and that did limit what I could manage. What I did find very useful was aqua physio in the warm pool - cool pools often make the stiffness worse.

Good luck

[polkadotcom]

I was referred for physio quite early on and ultimately (after ruling out massage which definitely wasn't right) I was given acupuncture which did help tremendously. It kept me going through one very cold winter.

I do agree with PMRpro, you do need to know your own limitations and you need to be able to convey those to the physio involved. I'm sure it's right to say that less is best with PMR muscles, it can be so easy to overdo it and that is a short road to trouble.

[Green_girl]

I agree with PMRpro that a warm pool is best and swimming, if done properly, with the back in alignment (means putting your head in the water!), is an excellent form of exercise because the water is holding you up. I also find doing my exercises in the steam room very good too. I was not referred to physio - but already had a physio for a my back. They have to be well trained and know the limitations and the effect of pred on the body - but if you can get a good physio they can help the recovery and make you feel better in yourself as well - and even make the pain less for a short while. I also had some reflexology which was amazingly good - and even helped with sleep!

If you have a referral Abigail1, do take it up. it is worth exploring - but make sure you ask if the physio can deal with our condition.

[Hidden]

First GP said that Physio would be good once the blood tests were normal. However she left the practice before that point and another GP was dismissive. As she was generally unhelpful I referred myself to Physio and paid privately. The Physio was very gentle and I was just stretching exercises and coping strategies with some massage. All helpful or soothing but the best suggestion was a microwaveable heat wrap for my neck which helped me cope through the winter. After three sessions with the Pysio she assessed me as well enough for a special Pilates class for people with health problems. I found this okay on most days if I was careful and took it slowly but a definite no no when dropping the dose as it was too exhausting.

Take it slowly and gently would be my advice with plenty of rest.

[trish29]

Hello Abigail1.. I have had physiotherapy 2 my left knee but the Physiotherapist was reluctant to give me much exercises because she was aware that it could set off a PMRFlare-up, this was on the NHS but i have been going privately for about 3years to a wonderful Osteopath and had Massage and Ultrasound to my Knee, kneck , shoulders and Fortunately my Osteopath understands PMR and only gives me light treatment. It is through her that I joined PMR/GCAUK and met lots of nice friends who unfortunately suffer with this same condition. I think its wise to have these light treatments but they can be expensive and there is usually a long waiting list for the NHS. I would advise it though particularly in the winter months when the body seems to stiffen up more. Take care trish29

[Celtic PMRGCAuk volunteer]

Abigail

When my pains first started I thought they were due to my longstanding spinal problem and went to a physio. Big mistake! After a few sessions, I was good deal worse and ended up being completely unable to walk. It was to be a whole year before I was diagnosed with PMR with the added 'bonus' of GCA!

We had a talk by a physio at one of our support group meetings and it was his view that the usual manual physiotherapy techniques are contraindicated in patients with PMR and on long term steroids. However, he recommended that a gentle stretching and exercise programme could help with the secondary effects of limited function.

When on very low dose steroids and heading for remission but with a very painful upper arm muscle and shoulder pain, I did resort to physio again but this time by someone who was well aware of the limitations of treating someone with PMR. He used heat treatment, ultrasound and gentle massage which proved most successful. So the message from these posts is 'gently does it'!

[dimas62 in reply to Celtic]

I too am struggling with the rest/exercise dilemma and would appreciate some advice. I have only recently been diagnosed with GCA/PMR. Was first on 40mg and now first reduction to 35mg from beginning of Dec. 'Luckily' I never had the extreme amount of pain that many seem to have suffered and have managed to work through a year pre diagnosis (but with extreme fatigue!) However I have a 12 year history of calcific tendonitis of the shoulder (3 operations in the last 6 years). Post op I needed to do a lot of physio as my shoulder arm and back muscles had wasted due to the immobility caused by the tendonitis. Hence I am firmly in the exercise / use it or lose it mentality but am not sure this is appropriate with PMR. 2 weeks into the first pred reduction I am getting more aches and pains in shoulder and hips again but how do I know if this is the PMR? When I started on the 40mg in October it was like I had a new lease of life. The excitement at being able to walk up a flight of stairs, walking the five minutes from the shop carrying a bag of shopping and not needing a nap when I came home from work! Could it be that I have just overdone it having spent a year so exhausted I did little else but struggle to work and sleep? The only exercise I really do is walking (even the thought of a gym gives me cold sweats!). Am I right to do as much as I can as long as the result is discomfort rather than pain, or could I actually be damaging muscles further?

[polkadotcom in reply to dimas62]

Dimas62, I suspect that you have been overdoing it. As you say, in the first excitement of being able to move normally you begin to feel you are Wonderwoman and can do anything! The walking as exercise is fine as the tendency to overdo things in the first couple of months can lead to problems. Stretching and gentle warm up style exercises are fine, but you have to remember that you are not cured, your condition is being managed and your muscles are not in the best of conditions. It is also not the right time of year to begin anything more ambitious - most of us find we stiffen up more during the cold weather. I have tendonitis too, and I find leg, arm and back stretches most necessary.

[dimas62 in reply to polkadotcom]

Thanks - that makes sense. Not helped by the run up to Christmas either I expect! Off to Tenerife in January so looks like a little swimming and people watching from under a shady umbrella will be the order of the day rather than climbing to the top of Mount Teide...

[rockyandzeus]

HI Abigail,

Although I was never referred to physio, I was already going to a wonderful chiropractor who is trained in ART (active release therapy). It took 18 mos. for me to get a diagnosis as I am an atypical PMR sufferer with no supporting blood work. Through all of this I worked full time and when I went to him, he would say 'it hurts here, and here, and here', and he would always be right. By keeping my spine aligned and reducing those 'trigger points' causing muscle spasms in neck, shoulders, and hips, I have been able to continue working. I also do a series of stretching exercises every morning that enable me to stay on my feet.

Massage was a disaster for me, yet I used to enjoy it.

Chiro, physio, acupuncture, massage, they are all tools that you must investigate to help you squeeze the most out of this silly disease. None will cure PMR, but if you find what works for you, you can keep on moving.

If the person treating you is unfamiliar with the disease, have them work quite lightly as the normal 'pain' that would go away after a typical treatment seems to get 'trapped' and can make you quite miserable for days afterwards.

All the best to you on your journey through PMR.

Dorothy

[Abigail1]

Thanks everyone for you're replies, I will make sure my physio understands the pmr.. When I get my appointment. Been more on the go for a few days, have spent today in bed, with the pmr/ gca... Left side of my jaw an left eye sore, an that's on 20mgs pred. An co-codyromol . Wish everybody on here a very happy an healthy Christmas.x