Post PMR damage - help!

Hi all,

I developed PMR in 2010 and had a relapse in 2011. I had a lot of the 'nasties' to cope with, but avoided diabetes thank heavens. I gradually recovered last year, 2014.

I have been on dose of 30mg twice and the last time I really struggled to reduce down to my present doses of 5,4 and 3.5mg depending on how I feel and what the day might bring as regards stress.

I still have pain, but not that of PMR. It affects my knees and shoulders mostly and I sometimes have a sort of numbness down left arm into hand. This comes and goes and I think it's pressure on the ulnar nerve caused by inflammation. Keeping warm helps a lot - If I get cold I'm in trouble - grinding pains in legs and arms.

I believe that I have suffered damage to my tendons and cartilage caused by the steroid, but wonder if this will reverse. It really upsets me to think I will be like this for the rest of my life.

My skin is also not as it was, but I moisturise every day and it certainly does not bruise or bleed badly as when I was on the higher doses. Muscle strength right down, but don't like to exercise too much incase I cause more damage.

Any advice will be wonderful! Why don't I ask my doctor? The last time I saw him he just looked bored when I mentioned pain - especially when reducing pred. I was on 5mg and he said I must reduce, and now I only have scripts for 1mg and 2.5mg.


6 Replies

  • You should ask for a referral to physio to get help with rehab - in the meantime you can help by walking, it is as good an exercise as any.

    Three years ago I was in a worse state than you are - because I was on crutches because of an inflamed achilles tendon due to being given the wrong antibiotic while taking Medrol and the effect of a statin for 10 days. I could barely walk 250 yards into the village! Now I can walk for 2 or 3 hours comfortably, not fast but steadily. We have just done a 2 week tour in China and had I known what it was like I probably wouldn't have booked it as we were out all day with just a lunch break and tended to get off the bus and then walk to do the sights and pick up the bus somewhere else 3 or 4 hours later. However - I managed fine! I did miss out a few bits with a lot of steps - but the week after the tour I did climb all 5 stories of the Yellow Crane tower in Wuhan - and there were nearly as many steps to get to it as there were to get up it! I'm not saying this to boast or say everyone can do it too - it is to show the difference between 2 1/2 years ago and now. I am still on pred and have been on pred for over 6 years - and all I have done is slowly build up the distance I walk. We used to go into the village to do the shopping at first, first on crutches and then more and more without them. I took them with me but carried them so I had them "just in case". We built up to be doing a half hour or so walk around a circle where I could abandon it and do a shortened version if it felt too much. At first I did the short bit in 40 mins, now I do the long version in about 25 mins. I also started by just doing a few of the stairs (I live on the 2nd floor) and going back down and catching the lift. Now I do the stairs all the way almost every time unless I am carrying something.

    I can't tell if I'm back to pre-PMR - I'm more than 10 years older for a start. You too are older than pre-PMR. But with a gentle approach to exercise you will get very much fitter. If you don't use muscle you lose it - and even just a few days in bed is enough to do the damage - but it is also quite easy to build that muscle again if you go about it correctly. It doesn't need to be the gym and weight training or running - walking is far better in every sense than running or jogging at any age or state of health.

    You can't damage your muscles as such unless you are very silly. But doing 10 minutes walking and then resting for a few mins and repeating that won't harm. It doesn't matter if the exercise is all in one lot or in small bites. Even with PMR, exercising in this way and gradually building it up is safe. A study is about to be done to see if it will help with the fatigue as well. Patients will be asked to wear a pedometer and will be given a target to build up to.

    If you have access to a warm pool where they have aqua aerobics that is also a good exercise because you have the water to support you. I did a class most days for the 5 years I had PMR without pred - that wasn't my choice, the doctors couldn't diagnose it - and it kept me mobile! It was after I had to stop (for various non-PMR-related reasons) that the PMR really got bad. You need to discuss it with the instructor and explain you will be doing it at YOUR level, not that of the rest of the class. It helps to have a warmish pool though. I also did Pilates and that strengthened my back muscles a lot. That was also adapted for me by the superb instructress - and I did it at MY level, but that was the way she worked anyway, always warning us not to overdo it. I also did a bit of Iyengha yoga - heavily adapted!

    Surprise, surprise, I'm also going to suggest you try a few sessions of Bowen therapy. It may not help but it could help the pain. You will know in 3 sessions if it is going to make a difference, often even sooner, so it isn't an open-ended never-ending drain on your purse. You may need a couple of sessions every 6 months or so - but I find it as good as a massage session with no sore muscles afterwards!

    And frankly - if you can, find another doctor. He sounds useless.

  • And in fact - having just finished that post I turned to the Guardian and found an article about a scientific study on how exercise affects our immune systems which says:

    "They found that exercise actually stimulates a powerful anti-inflammatory response, a key part of the body’s naturally built-in healing processes. While intense, long duration exercise sends this response into overdrive – thus temporarily compromising the body’s ability to defend itself – regular moderate-intensity exercise can combat the low-grade inflammation underpinning many chronic diseases ranging from diabetes and cardiovascular disease to dementia, various cancers and depression."

    They didn't include PMR but they could have.

    “Inflammation underpins most of these chronic diseases,”... “And it makes these patients very vulnerable to small, minor infections. Because their cells are so inflamed, their immune system is constantly switched on and, when it has to actually respond to a bacteria or a virus, it doesn’t handle it so well. In healthy individuals, the effect of exercise is to give a boost to the immune system, but for someone with a chronic condition, they first have to get their immune system back to normal and the anti-inflammatory effect can help with that. In our studies, we see the beginnings of this after just 30 minutes of walking on a treadmill. Big improvements then follow after six months of regular exercise.”

  • Like you I have found Aqua aeroboics, Pilates and yoga do- able and re energising. Without them I'd have felt very fed up. All can be done at your own level ... Just let the instructor know you have some restrictions ( mine shoulder and left wrist ). I started 6 months in to Pmr only occasionally having to cancel out. All help to keep strong mentally and physically. I have made a few new friends too- a bonus!

  • PMRpro,

    Thanks so much for your lengthy reply - lots of suggestions.

    I live in a three storey house and climb stairs a lot. Also carry heavy shopping upstairs, and garden, but I must admit, do not walk as often as I used to. I think that might be the answer considering how much it helped you. It's not my muscles I'm concerned about, it's my joints.

    My GP has left the practice and is not being replaced until October, but, hopefully will not need to see the new one.

    Will dig out my trainers and see how it goes.


  • Well - how about carrying the shopping up in much smaller batches! I struggle carry anything, even now, Luckily we have a lift from the garage. And in the early stages of really bad PMR it was that lift that saved me! We had moved to a 2 up 2 down terrace in preparation for our move here and there was no loo downstairs. It was hell. I came here and the difference not having to climb stairs was unbelievable. I got moving again, the rheumy gave me 6 weeks of pred (very grudgingly) and I realised it WAS what I suspected: PMR. The rheumy was useless but a different GP gave me pred when the rheumy wanted to give me some old drug where you can't go out in the sun - I was moving to Italy!

    Truly though - walking is wonderful exercise, doesn't overdo it for your joints and you can do as much as you like. FREE!

  • Thanks again,

    I guess I try and lift and carry to help build my muscles again - I used to have great shoulders and bicepts and could climb stairs two at a time, no prob!

    One good thing that has occured by doing heavy lifting is bone density at about 87% - the same as it was when I was first ill.

    Tomorrow is "walking day"! It will be pouring with rain but hey, I'll have the park all to myself.

    It's on the flat all the way round.


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