I was diagnosed with PMR in may, am 55yrs old and now on 10mg pred.
I've not been feeling great on 10 but also not too bad! I've been on this dose for 6 weeks with some days better than others but manageable. I have got muscle weakness in one arm and one leg; saw my GP last week and he said it was the steroids. The tiredness I am now feeling is worse than ever. My half hour/ hour walk today had to be abandoned at 20 mins. My hips were quite sore and thighs very achy. I am reluctant to increase my dose what with the weakness and other lovely side effects. Just wondered if anyone else has experienced this? Any tips? Thank you.
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Jennykk
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What is the pain in your hips and thighs like? Do you also have low back discomfort/pain? Tell us a bit more.
If you have muscle weakness then your GP should be referring you for physio to learn ways of combating it. But I do wish that they would stop blaming pred for everything - there are other reasons for such problems. But all in all it sounds a bit as if you have either overdone it a bit - or you are starting a flare of the PMR.
If you were on a lower dose I wonder if your body is not keeping up with making its own corticosteroid because that can cause fatigue - but at this dose that should be OK. Instead of doing 1 half hour walk - do a 15 min walk in the morning and another in the afternoon. Or walk to somewhere for 15 mins where you can have a rest and then walk back. It doesn't have to be all in one dollop.
Thanks for this, its sooo frustrating! My hips ache and my thighs feel like they may give out at any moment, wobbly.
Yes I do get lower back pain intermittently but had that before the PMR struck. I do find it difficult to take it easy but this week have been forced to. I probably need to rest more. But being previously so fit and well and used to long walks its hard. I also am working 4 days a week, getting in and out of a car. Thats sometimes tricky.
Love the thought of doing walk in dollops! Many thanks. x
It is possible that you have something called myofascial pain syndrome - trigger spots that are concentrations of the same inflammatory substances that cause PMR form in pairs alongside the spine. One pair is in the shoulders, one pair about rib level and one pair where the dimples are on a baby's bottom. If the low back ones cause the muscles around them to go into spasm it can affect the sciatic nerve - and pain refers into the thighs. There can be achey pain and sharp pain - all depends. It often is found alongside PMR and I'm not surprised you had it beforehand. Cortisone injections are one way of dealing with it but something that a lot of people on the forums have tried with success is something called Bowen therapy. Have a look at a few other current threads where people have spoken about their experiences and google it for more explanations of both myofascial pain syndrome and Bowen. Bowen doesn't need a prescription, is very gentle and very effective - you just have to pay a bit I'm afraid! About the same price as a night out in the UK these days. If it is going to work you will know after 3 sessions at the most but some people notice a major improvement after just one session.
We were almost all active before PMR and it is a learning curve! But you will get there. Resting in between times and pacing is essential.
With the car try fiddling about with the driving seat position. I now have my seat in a totally different position to what I used to like. And push the seat right back before getting out, leaving it there for getting back in. Put your seat belt on and then adjust it forwards - probably further forward than you are used to and with the seat higher than usual. That may help the back discomfort - and if you haven't got one in the driver's seat, get yourself a lumbar support.
Really interested to learn about myofascial pain syndrome . I have had PMR for 6 years and was aged 55 when diagnosed. Incidentally, my mother also has PMR and is doing well on 2mg prednisolone at age of 83. I have found it impossible to reduce my dose below 4 mg so far, but I am determined to keep active with lots of dog walking, playing badminton, gardening, minding grandchildren and a part-time job. I have been suffering with pains around the rib cage, which make sneezing and coughing very painful. My G.P. has given me no explanation and I am now wondering if I have myofascial pain syndrome.
I am a new member of the forum and I have learned more about PMR in the last 3 days than I have over the last 6 years. Thank you!
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