After almost three years since diagnosis, I knew I was deconditioned and asked for a script for PT. Now I am wondering if it's doing me more harm than good. Having exercised most of my life, I know what a good work out soreness feels like. After PT, I feel relapse type of pain, especially in my quadriceps (front of thighs). Of course, none of the therapists have heard of PMR. They are very pleasant, but not really addressing my problem of using stairs. Has anyone else experienced this with PT? Wondering if I would do better with a personal trainer, or maybe the time isn't right. What I need is that little stairway you see on TV used by wounded veterans or accident victims , but where I go, they don't have it. Ideas anyone?
PHYSICAL THERAPY : WHEN IS THE TIME RIGHT? - PMRGCAuk
PHYSICAL THERAPY : WHEN IS THE TIME RIGHT?
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Christophene
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•
DorsetLadyPMRGCAuk volunteer
I think you are trying to do too much too soon. Your muscles don’t take kindly to repetitive or strong exercises.
You need to build up slowly - a daily walk or something like Pilates, Yoga or Tai Chi to start with probably would be beneficial. Nordic Walking is also good.
I think you are right; I started to get rid of fatigue and low mood in June, and I have been doing too much of everything. Think I will just rejoin my gym which has pilates, etc. and can use the pool. I also located a mini stairwell to work on at home ; stairs (like we see wounded vets using on TV); that should be enough.) If I can master going up and down normally, the question becomes can I duplicate that on the real stairs. At the moment, I have a stair raise installed, but I would like to get rid of it.
My GP was very open to switching me from oral steroids to IM depo methylprednisolone based on Dr. Gasputa ,et.al. 1998 article on the lesser side effects of IM steroids as opposed to oral meds. That was just a couple of days ago and I feel no worse or better yet and happy not having to think for myself about dosing. He gave me my first injection on Thursday and go back in 3 weeks for the next.
It might be too late to benefit since I am 3 years into the PMR "journey", but it's worth a try; he was so eager to be helpful. Except for a 7 pound weight gain, and walking much slower than is normal for me, I haven't been aware of too many side effects.
I will take this opportunity to thank all of you who responded to my PT question. As always, this group is the best.😊
It is important that whoever you have knows about PMR. I prefer an osteopath, mine is brilliant.
The physio I see has a number of patients with PMR, she seems to understand it and tailor the exercises accordingly, including Pilates. I know what you mean though. I don’t get the feel good effect that my OH gets. We have classes just for the two of us and I dread it sometimes. I am not sure how you would track someone like that down, or the rehabilitation exercises you are thinking of. I guess they are severely rationed in the NHS. I expect you’ve already been all over the Internet?
Thanks for your response. I have always enjoyed exercising for many years starting at age 5 with classical ballet which was my mother's doing. I stayed with it until 14. Physical Ed. was always mandatory through college; thereafter, I would pick up a class in adult evening classes until I finally found a job where I could leave early enough to catch classes at a nice, local gym. I never "wanted" to go, but as soon as I got there. I was happy to be there. The therapist who evaluated me thought my muscles still strong, but needed help with balance and coordination of movement.
Probably right. But once you start feeling better, it's natural to want to go back to how things always were before PMR. But PMR is still there so I have to slow down in general. But happily, I feel more normal than I have in many moons.
It's nice you have a supportive hubby who takes classes with you, but wouldn't your needs be different than his, or does the therapist have you doing different things?
Can you share exactly what the therapist has you do? I noticed that everyone who responded to this inquiry started PT between 2.5-3 years into PMR. Is that a coincidence, or is that when people with PMR start to get enough energy back? Of course, we are all different. Exercise is good, but I have had an injury to my foot requiring surgery, and now have a large paraesophegeal hiatal hernia which I had no idea about until it showed up on scan and is compressing my left lower lung. I think it must be injury related because I have no reflux or digestive issues, thankfully. Some people think it could have been happening from free weight lifting over time. Surgery is not recommended because of degree of complications, but that is because of the mesh they use which here in the USA has led to large class action suits.
It might have happened anyway, but I don't like looking 5 - 6 months pregnant. There are a couple of surgeons in Florida who are still repairing them the old-fashioned way without mesh. The young doctors are not learning these old skills.
The classes we have are two for the price of one and she does provide different exercises for each of us. My husband travels a lot with his job and is very tall and this causes various joint pains. I am trying to strengthen my muscles that have become weak from PMR and being more sedentary.
It sounds like you have pushed yourself a little far and are suffering from delayed onset muscle soreness (Doms). It's quite frequently experienced when you start exercise or overdo repetitive movements. If it gets really achey and sore then painkillers can help or something like capsaicin cream. Try a modified version of any exercise and hopefully with someone who has a working knowledge of PMR.
Christophene• in reply to
Thanks for responding. No one knows what PMR is here. It's always poly-what? Yes, I have been overdoing, but after 2 years mostly in bed reading, it 's good to feel alive again and want to do lots. This morning I was thinking of booking a trip to Venice, a city I know well, and then I thought how am I going to walk across all those pedestrian bridges? Wait , you are thinking faster than your body can move. Slow down.
I started with a PT for my shoulders shortly after diagnosis but my doctor gave strict instructions that she was work on stretching/range of motion only. I had lost quite a bit. Later I went back to a different PT who had had previous experience with PMR patients. She quickly announced that I would only keep getting hurt if I tried traditional machines and exercises. I was only to have therapy in the warm therapy pool and could walk, slowly building up time and distance.
• in reply toTooSore
The right kind of physio makes a big difference.
That makes alot of sense. That's why I am going to rejoin my gym which has the warm water pools as well as regular the regular swimming pools. The PT, while very nice, is doing what you were told is not good: machines, weights, etc. She with an MS in PT has never heard of PMR. None of them there have.
My therapist recommended swimming several times a week. I do that and enjoy it.
I decided to ask my rheumy to prescribe PT, and he recommended stretching and light exercises. The problem was his diagnosis was FIBROmyalgia, likely due to the fact that my bloodwork had just gone under the mark. He used to say he thought I had both. As it turned out, the exercises the therapy dept had for that was completely different than what you'd expect for PMR... lots of reps and strength building. I explained to them the problems I had initially (2 years ago) and said I could use some help now with stretching as well as basic movements like easily rolling out the bed in the morning. I also provided a referral from my GP which clearly stated my diagnosis: PMR. Well, apparently that was the clincher. They were supposed to call me to schedule for the following week. That was LAST week and I haven't heard back from them. Fortunately, I've seen a new rheumatologist (my third), got a shot, and am currently pain free enough to walk or ride my bicycle around the block for my physio. So much for physical therapy.
I have tried seeing a Physio but all I keep seeing is triage people who push me on to someone else. I am now waiting on a referral to hydrotherapy to see if that will help. I have just carried on doing my orienteering and find no correlation between the exercise level and the reaction. In fact doing three days in a row, I felt best on the third day.
I just believe in keeping the muscles being used.
The usual thing with the NHS is treating the symptoms but no getting a cure. For our muscles to inflame there has to be a trigger but no one seems to know what it is and how you stop it.
Trust me if they would let me I would use them, but every time I think I'm able to do things, so far my muscles have let me down. Like seizing up completely half way around Tescos so that my legs wouldn't move. I needed help out of the store. I am desperate to get back to my normal life, OK not athletic these days but I was walking and gardening every day.
Good luck with physio I was reffered by my rheumy who suspects steroid induced myopathy, some weeks back.... still waiting.
• in reply toscats
Have I mentioned trying to walk backwards a few steps to confuse the old brain? I have to do this when I seize up.
scats• in reply to
No, I hadn't heard that, it's a good idea thanks.
These discussions do show the extremes of this disease.
• in reply toscats
It may work. I use it for muscle weakness so you never know. I like confusing the nerve/brain system for pain and immobility.
scats• in reply to
It doesn't take much to confuse my brain these days!
Can I be there when you try walking backwards?
I'll need someone to catch me!
That time in Tesco's they weren't going anywhere backwards or forwards, but if I try before it gets to that stage it might just work.
Oh I was just after watching you not catching you!!x
I didn't think you were up to the job anyway!
Please can we have a dislike button next to the like heart to save me having to reply to these answers.
No!!
Strangely I find walking backwards easier than walking sideways (both recommended to improve balance). Without holding on to something it's difficult and 'worrying'!
Interesting; because I can use the exercise bike better going in reverse. ; backpedaling. I also have a habit of reading a magazine starting on the last page and going forward..can't do that with a book.
What odd creatures we are!🤣
It is pretty hard to find the "good" PT. I had one at the beginning of the PMR journey and it was great. She understood limitations and was mostly working on stretching and range of motion. Then she got married and got pregnant... None of the others in the same clinic were not even close....
I an currently going to another place where I have found another good PT. Although he did not have any experience with PMR, he was listening and pretty soon we have worked out good understanding about my limitations and how to help me best. I always have targeted sessions. At the beginning I explain what pains/ problems I have and then we decide what to work on during that session.
My experience is that you need to find PT that will listen and work with you. Otherwise it is not useful and can even create problems.
I agree; it seems to me that the PT is more interested in personal matters like looking at floor plans of different apartment complexes and then sharing that with others who are there than paying attention to what she should be doing. I am still very flexible and my lower body muscles strong, but upper body not strong. But that's where the problem is; if she has me using bands to do rows for example, it starts to be painful so I stop. First therapist I had was better; he said never push through pain. But then he disappeared.
I also have a pre-existing lower back problem due to severe scoliosis with nerve involvement , not related to PMR. It is not visible as long as I am dressed. It took 2.5 years before my CRP was elevated. Sed rate still normal. Go figure?! That's the nature of PMR.
I also have a large paraesophegeal hernia and not sure what is safe to do b/c this type of hernia can strangle the stomach which is a surgical emergency. Surgery used to be recommended, but statistically it happens so rarely that surgery is no longer recommended. But statistics are just that; statistics . And they do not apply to individuals. This hernia is also compressing my lower lobe of my left lung.
There is supposedly an excellent PT affiliated with one of the teaching hospitals in Philadelphia, PA, but she does not participate in any insurance program and charges over $450 an hour! Even if I was super rich , I wouldn't pay that; it seems so out of line and unprincipled. You can get some reimbursement from insurance, but not close to that rate.
I have stopped PT and will go about it my way ; I know I need balance work and work with stairs; I also notice that I am walking very slowly. I used to be a fast walker, a decent hiker, but now walking very, very slowly. Anyone else walking much slower than normal.??
I have just begun PT after a referral from GP. I am 2 1/2 years into pmr and at 9 mgs.
Aquarobics on Monday and gentle gym today, watch this space, feel ok so far. I needed to start moving more than just walking the dog, and also to get some of this pred weight off!! Good luck🤸🤸🤸
My son is a PT and has helped me tremendously throughout my PMR journey. His advice would echo much of what has now been said - pace yourself, build up slowly, listen when your body asks for a rest. Make sure stretching is built in - perhaps for you quad and hamstring stretches might be valuable. My son also introduced me to Magnesium oil - a spray used pre/post exercise which is aimed at helping with stiffness (DOMs or otherwise). My main exercises are walking and light weights plus the regular stretching. Whatever does it for you, I guess. All the best for your improvement.
Thank you for your best wishes. I really need balance work. I have fallen 5 times since January; luckily not hurt except for bruises. Two falls were in the last 48 hours; one a slip in the shower, and one fall in the middle of the night in my own bedroom of 44 years; my own stupidity; if I just put a light on, it would not have happened. The shower is very slippery; today, I used beach shoes with a grip sole and did not fall. That could be a solution?? I forgot another somewhat humerous fall; somehow in backing out of a walk in closet, I fell butt first into a laundry basket; not easy to get out of...but I did.
Something I do any time at home: I have 3 Nepalese very firm square 'cushions', (more like mini-pouffes) and started off with 2 one on top of the other and did step-ups at odd moments of the day - it noticeably improved my thigh muscles . I do 8 with left foot leading, 8 with right, then same stepping down on the other side and up backwards (erm, still with me?!) If your balance is a bit off have a sofa back or table to the side to steady yourself.
Good idea to have a sofa to fall into in case of loss of balance.
Right now you don't need a good workout. You need targeted but not too repetitious nor too strenuous exercises and a program which gets your body moving, a walking program, swimming if you like it, and a little bit, gradually increasing, every day. At some point you'll be ready to gradually ease back into the kind of exercise you are used to, but you need a fair amount of time to prepare for that stage. Be kind to yourself. Your muscles are currently intolerant of too vigorous exercise, nature of the illness, I'm afraid.
Right you are.!
I asked my Rheumy yesterday I f I could do any harm doing what I am doing and was pleased with confirmation that it was all good provided I kept it gentle. I was introduced to it in the 90s and gone through phases knowing it was doing good. On suspected of PMR and GCA and put on prednisolone I remembered its benefits to osteoporosis and started again plus reading 6 books about it. OK IT is Rebounding. I was jumped on before for mentioning it but with my Rheumy approving I would like to put it out there again. I have friends with spinal issues also allowed to GENTLY rebound. This DOES NOT MEAN exceedingly energetic trampoline type moves! My feet do not leave the pad and I started at 30 seconds for a week. Building slowly to about 4 mins a few times a day. I was on 60 pred. First benefit was lift to my spirits. 2nd was pelvic floor strength followed by overall core strength and balnce too. I do about a minute really slow before bed and sleep is better too. The best book is Albert E Carter's Rebound Exercise but that's hard to find. Margaret Hawkins is another. I am convinced and take the rebounder away with me in the caravan. ALWAYS GENTLY THOUGH and stop if anything aches. By the way I am 74 and been fairly active but not excessively so all my life.
And for those for whom rebounding is a step too far, heel drops are useful. Even walking downstairs helps the bones (walking back up good for the heart).
The problem I have is with stairs; the only way I can mount or descend the stairs is by taking one step at a time with both feet on each step; somewhat like a toddler would do it while still learning. It's a matter of re- learning. It wasn't so long ago that I could run up and down the stairs; I think this may be due to low back problems and a jumble of mixed up nerves in lumbar spine. But PMR doesn't help either. Thanks for your response.
I've had a similar problem off and on the past few months. The hip which hurts from referred pain from my spine was really bad for a while, but seems better now. Perhaps physio and my exercises plus time have helped. Hope you have improvement soon.
I will certainly search for the book. Sounds very worthwhile.
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