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physical therapy

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karen81902
karen81902

Does your Dr. having you going to   physical therapy  for pmr?  and If yes for how long?

0 likes, 24 replies

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  • EileenH
    EileenH karen81902

    Posted

    I'm copying and pasting the reply I gave to a similar question on another forum - I'd just give you the link so you can read the lot but it will be taken for moderation!

    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!

    MrsO 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.

    MrsO's response was:

    "yes, as 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."

    Physio won't help the PMR - it MAY, done properly, help prevent loss of muscle strength due to pred leading to muscle atrophy if that is required, but you are always at risk of aggravating the fatigue and pain/stiffness of the PMR. If you have what I call "add-ons" to PMR, such as myofascial pain syndrome or piriformis syndrome, then physio may help there - but it must be properly targetted at mobilising the trigger points and releasing the muscle spasm that both of them can cause, adding to the PMR problems.

    • karen81902
      karen81902 EileenH

      Posted

      Sounds like my PT does not knw what she is doing. Are massages good or bad. I have been getting massages and I thought they felt good, but are they doing more dmage? i am so confused.
    • EileenH
      EileenH karen81902

      Posted

      They aren't doing damage, no - if you feel OK with them that is fine. But some people feel it makes their PMR flare up. That is probably because the massage releases inflammatory substances from hard areas in the muscles into the body - which do the same as the inflammatory substances in PMR - so they think it is causing a flare. I can't cope with physio but I can cope with massage and really do enjoy it - and I feel good after it. I sometimes feel a bit sore the next day or so but I'm expecting it so it doesn't bother me. Others, though, are unable to move afterwards - then it is silly to carry on.

      Everyone is different and on the thread I copied that reply from others said they benefitted from certain things at the physio. One lady finds ultrasound therapy helps, another used low light laser therapy and believes it helps her reduce her pred dose. You do have to try various things to some extent - what works for me may not work for you, what one can access may not be available where someone else is. I find something called Bowen therapy very helpful and so do a lot of others. There are some ladies for whom it did nothing to help at all. The low light laser therapy is not easy to access for most people - but there are a lot of practitioners in Canada it seems.

    • karen81902
      karen81902 EileenH

      Posted

      Thanks for th einfo  It is a big help in figuring out my journey.
    • karen81902
      karen81902 EileenH

      Posted

      Now a few food questions then maybe I will be done for the day.  I have cut out sugar and wheat and most dairy.   I really like goat cheese on my salad is this good or bad.  I can pass on it if it is bad.  Trying to do the paleo diet.  How about oatmeal? 
    • EileenH
      EileenH karen81902

      Posted

      There is nothing "good" or "bad" you can identify in general - even sugar and wheat aren't "bad" in moderation although you don't NEED sugar and could live very well and more healthily without any added sugar.

      There is no good reason I know of to avoid dairy either - unless you find YOU feel better without it. Many adults are intolerant of lactose if they eat/drink too much milk or soft cheese at one time - but most hard cheese is low in lactose anyway. If no dairy improves your symptoms fair enough - otherwise, dairy is a good source of calcium and protein.

      Each of us has to experiment a bit. I'm allergic to something in the structure of modern hard durum wheat and it gives me a rash - I can eat other sorts of wheat. I left out nightshade vegatables - it made no difference. I have avoided alcohol, it made no difference. But others have found it made a difference when they didn't consume one or the other.

      Everyone is a bit different.

  • nick67069
    nick67069 karen81902

    Posted

    I will offer alternative opinion about exercise. It is very individual, just like PMR. If you were active before PMR, then there is a chance that you will be able to regain most of conditioning gradually, with activities at very moderate level.  In my own experience and several others here, over 4-6 months of steady progress, it is possible to go back to almost the same level.  Again, it all depends of your pre-PMR level of activities.

    Combination of gentle massage, streatching for flexibility and some aerobic exercise, including walking will, in my experience, help recovery.

    here is a "log" of my own progress

    https://patient.info/forums/discuss/pmr-and-excersize-experiment-in-progress-492585?page=0&order=Oldest#main-reply

    • EileenH
      EileenH nick67069

      Posted

      I don't regard exercise and physiotherapy as the same thing. Exercise in moderation at your own personal level is a good thing - but everyone is different and by no means everyone can do the exercise you are able to.

      Maybe that is where we misunderstand each other?

  • erika59785
    erika59785 karen81902

    Posted

    Physical ltherapy for my left shoulder never worked for me.  It just caused more pain.
  • reggie92967
    reggie92967 karen81902

    Posted

    Karen ior any other PMR cohorts, Any one experience extreme foot, ankke, lower leg swelling,v edema, since steroids. My PCP has been seeing me every 2-3 weeks, keeping great watch on me & monitoring steroids etc between my 3-month visits to my Ruematoligist. He says it is the prednisone. Have had 2- venous dopplers in the past 3-years, all showed ok Have sine liwer keg pain also. Support socks, ekevation helps allot. THANKS for any replies.
    • EileenH
      EileenH reggie92967

      Posted

      I have had lower leg oedema - but it was after bieng diagnosed with atrial fibrillation which wasn't obvious until I had a reaction to a drug but in retrospect had been there before, since PMR started. I'm sure someone would have said it was pred - my experience is that it was not but another not entirely obvious cause.

      Now my ankles puff up a bit in the evenings, excessively so when travelling, especially flying. Flight socks help, as does low sodium - it also happens when we eat out a few days in a row where the food has a lot more salt than I use normally.

    • track
      track EileenH

      Posted

      I am finding

      just recently I have some oedema in my feet, never to have had this problem in the past.  As you know I have had leg pain for quite some time now which is only abating vry slowly.

      My Dr sent me to a Physiologist for some exercices on legs and arms which are quite mild exercises and while there he took my blood pressure and said he was concerned about my heart rate being 118 ppm. When I returned home I took my b/prs again and the heart rate was the same, though my blood pressure has been stable.  I mentioned this to my Dr. and he did not seem concerned at all, and I also took along my readings of the PPM for him to view and he also did not seemed concerned.  My PPM fluctuates from 105 to 119.  I have always had a PPM in the 90's.  Of course he would send me to a Cardiologist if I requested it, but do I need it?  A stress test would be no good with this PMR, at least I think it would do more damage. 

      I have read where 

      some people can develope an Aneurysm in the heart from the Prednisone, also in the Brain.

      I realise the fast Heart Beat may mean heart is not pumping blood supply correctly.

      I do not cook with salt, but unfortunately realise salt is added to many things that we buy.

      Would appreciate what you think, and your good advice.

      Thanks,  Track

    • nick67069
      nick67069 track

      Posted

      Hi Track,

      That is pretty high HR, and I would investigate it further why.  Basically at our age ( ~70) max rate is about 150, so you have very small range to work with.  For a comparison,  I am 67, and my resting HR ( if I am sitting) is below 50. Only if I am doing some sort of exercise it will go over 100.

    • track
      track nick67069

      Posted

      Thanks Nick, appreciate your in put, I am a little concerned about it.

       

    • EileenH
      EileenH track

      Posted

      I really would ask for it to be investigated - the 90s is not too bad but if it has increased then there may be something going on. Some people do have a raised resting heartrate - my husband does, it is just him. Pred can also cause a raised heartrate - which is probably why your GP isn't worried - but as I keep saying, you shouldn't balme everything on pred and PMR. It isn't always! Rule out the other options and you can rest easier.

      The autoimmune part of the PMR can do other damage - that is where my atrial fibrillation is from, the electrical cells that trigger the heart contractions have been damaged. It is well controlled with medication and I also had raised BP along with the a/f - it's also well managed. 

      Even with PMR I managed most of an ordinary stress ECG which showed a mild abnormality which was either due to being a woman or to poor perfusion which could be associated with a heart attack - I had a medicated stress echocardiogram to investigate it properly and it was all fine, I'm just a woman! But it removed a lot of concerns that might have lurked at the back of my mind. My husband, on the other hand, started an ordinary stress ECG, they use a bike here, and was happily pedalling away when the doctor came in, looked at the trace and, having asked if he felt OK, told him to stop and "lie down here" - he had developed atrial fibrillation as a result of the exercise! Normally he doesn't exercise enough for it to happen...

      Developing an aneurysm is actually more likely with GCA - the vasculitis does damage to the aorta and also maybe other arteries and it is recommended that GCA patients be monitored for some years after being diagnosed.

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