I was diagnosed with PMR in march this year besides swears (glows!! ) woods and sweats! Which I find embarrassing And so uncomfortable another thing is my legs don't seem to work very well, first it was like tapping in my calves and now afew months later I find them weak and difficult to move, I'm ok in the house but now need a 3 wheeled alter to help me outside. I thought it was from the PMR or steroids - 0n 10 mgs- but yesterday asked the doc ( I was there for something else and never see the same doctor) if my leg problem was from the PMR or steroids, he said he didn't think so and for me to contact physiotherapist. He is the doctor I asked if he would refer me to a rheumatologist and said that was what he the gps were here for and that I didn't need a rheumatologist. Now I am worried it could be something more sinister - any ideas please?? Also for some reason I'm no longer getting th healthinlocked notices in my email box!!

13 Replies

  • My legs have never been that brilliant and I tend to walk round like a penguin. They have got weaker over time, my GP said it is steroid induced neuropathy, although I am not sure she really knew. She gave me a large pot of conditioner as a booby prize. I must admit whatever it is really is good for dry skin.

  • Piglette, THankyou at least you got a present !! Yes I walked like a penguin long long before PMR , ha ha now it's more like a shuffle or even like a robotic gorilla like polkadotcom or should I say like her husband thinks!!!

  • My GP told me she has lots of people with PMR, apparently we are an "old" village, but walking was not a problem for them. (I reckon she only has a couple of patients.) One feels such an idiot as if you are making it up.

  • Legs that don't want to cooperate are not uncommon in PMR. So I don't think I would worry too much until you have seen a physio and they say there is something not right.

    As piglette says, there is this assumption it is pred-induced something or other - that is the default in PMR when they don't know! Yours has obviously never had PMR or anything resembling it. A good GP can mange PMR fine as long as it isn't complicated - but I'm really not sure it is right to refuse a patient a referral. However - a lot of rheumies aren't much better even after you have waited months for a referral - but until you try you don't know! Some really are outstanding.

  • PMR targeted my legs from the beginning, bad news for someone wanting to dance. Most of us have leg problems, some due to PMR, some to Pred, most of us waddle about to begin with because it feels as if there is a tightness in the hips and the big muscles in the legs feel weak. My husband had some choice descriptions of me - the Robotic Gorilla was the best one.

    The good news is that it will get better in time. PMR certainly taught me patience if nothing else. Be kind to yourself, none of this is your fault and concentrate on what you can do, rather than what you can't. Try to break up big jobs/chores into smaller bites. You will hear us preaching 'pacing' ad infinitum.

    It might be a good idea to see another GP to try and get a referral to a Rheumy. If the current one doesn't know that steroids can cause muscle weakness, then you need someone who does. If you have to self refer to a physio find one who knows about PMR-affected muscles being intolerant of repetitive exercises and deep massage. They will only make things worse.

    Not sure about your problems with notices, but I do know that HU have been making changes to the news feeds recently and it hasn't been wholly successful. Perhaps logging out and in again might help?

    Do come back to us with any questions or queries.

  • HU keeps logging me out - in the middle of a session, never at the beginning of one!!! If nothing else - I now know my password. I think...

  • PMRPro!!!! THankyou yet again, I feel relieved and will find a rheumatologist - I've been recommended one in Cornwall recommended by someone on this wonderful forum . Funny how you're logged out in the middle of a session, it's called Sod's law. Ha ha.

  • Polkadotcom thanku so much. This forum is brilliant, thank goodness for it and you administrators and members.

  • I talked my rhuemy into a referral for PT. he said my muscles were just weak from reconditioning but when I responded that I couldn't condition them without hurting myself (sprained ankles, ripped meniscus) he gave me the paperwork. I was hesitant before starting but am really finding pool therapy helpful. The water is warm and supports. You as you work.

  • A man on the forum some time ago was a fire-fighter and training for a marathon when PMR struck. Through the fire service he got physio in a hydrotherapy pool - and within 2 years was back to running. Men do respond differently - but I'm sure the hydrotherapy made a big difference.

    Hardly hydrotherapy, but in the 5 years I had PMR without pred I kept mobile and fairly fit by doing aquaerobics in a warm pool every day Mon-Fri. Couldn't do it on the days the heating was down, but as long at it was about 28-30C it was fantastic. No option to do that now - and I do miss it. I had a few sessions in the hospital pool after a major flare a few years ago - and I credit it with starting my recovery.

  • Hello

    I have posted on this website previously about my current problem.

    I have had PMR for 3 years now. Almost succeeded to come off Prednisolone in Feb this year - had a relapse. Started again on 15mg. Pain then under control. After 3 months my Doc told me to reduce to 10mg - this caused extreme pain in my left leg - could hardly walk. This finally resolved itself. Then my Doc reduced me to 7.5mg - again my legs played up. Had to keep sitting down. Another Doc saw me and raised the dose again to 10mg. After three days everything was fine. However, as I was unaware of the fact that you should go easy on exercise,( nobody told me) I walked for far longer than I usually do, and the next day and every day since then (6 weeks) I have been housebound, as I cannot stay on my legs longer than 2/3 minutes before my thigh muscles start to seize up and cause pain.

    Saw a different Doc who seems more sympathetic to my case and hopes to eventually reduce me more slowly. Have a a blood test - do not know the results yet. Will be seeing the Doc again in 10days. She has raised the Pred dose to 20mg.

    My theory, however, is that the current pain in my legs is caused by too much exercise to already weakened muscles. If this is the case, I understand that it will take much longer than usual for this to resolve itself.

    Do you agree that this is probably what has happened considering the fact that the extreme pain began the day after my walking? How lond do you think it will take to resolve itself?

  • I honestly don't know - and it could take a long time. There are experts who believe that over-exertion can actually trigger PMR. But after 6 weeks and on 20mg I would expect things to be improving.

    However - personally I would suspect something more than "just" PMR. I suffer badly with myofascial pain syndrome which is often found alongside PMR and it causes low back muscle spasm - which can manifest as referred pain into the thigh muscles. Is that a possibility?

  • I am now feeling somwhat improved now - have been on 20mg for 5 days - hopefully by the end of the week I will be more mobile.

    Thanks for your reply

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