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New to PMR

Posted , 8 users are following.

tiggersue
tiggersue

Hello, I am new to forums but could really do with some help coming to terms with PMR. My story so far is that I have been complaining of random pains all over and a feeling in my legs like they are going to cramp up but don't, guess like they are going stiff, tingling or fizzing feeling as well. Lots of pain between my shoulders as well. the doctor did a CRP test which was raised, not sure of the number and it was raised so she then did ESR which has come back today at 37. I have an appointment to discuss the result but she said she thought it would come back raised and said if it did she would diagnose PMR and start me on steroids. I am terrified of taking them. Are the feelings in my legs known by other sufferers? Today my right hand has seized up in terrible pain, is this PMR? Any help would be greatly appreciated.

1 like, 22 replies

22 Replies

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  • biddy
    biddy

    Posted

    I have had PMR for 12 yrs, and was told by a friend in late 2010 to take magnesium citrate 3 times daily, this has helped tremendously.
  • freesia
    freesia

    Posted

    biddy, is that magnesium citrate, not calcium citrate with magnesium? Sorry, I don't want to second-guess you, I just want to make sure! I do take magnesium but it's part of a calcium citrate supplement. I used to take them separately.

    Have you been taking steroids for 12 years?

    Take care,

    freesia

  • freesia
    freesia

    Posted

    P.S. I know that magnesium is supposed to help with muscular aches and pains, so it probably is magnesium.

    Thanks!

    freesia

  • biddy
    biddy

    Posted

    It is magnesium citrate, I get it from Holland and Barrett, and take it 3 times daily; it has certainly helped ,when pain is really bad I have to take distalgesics which are now sadly withdrawn but I got a few in stock in before they were as I cannot take other pain killers or opiates.

    No, have not been taking preds for all this time as I was not diagnosed until 2006, I had even been privately twice for a diagnosis which was wrongly given the both times, when I changed Doctors my new one tested me and confirmed PMR which was a relief as I did think it was more serious.

    I understand PMR does not always go away ,I spoke to the original PMR help group founder who still has it after many many years.

  • freesia
    freesia

    Posted

    biddy, thanks so much for your response. It's good to know that the magnesium gives you so much relief. PMR is so frustrating. You must have been relieved to finally get a diagnosis and find out what was the matter, even though it's not something anyone wants to hear!

    I've gotten a second opinion lately after 2 years and 3 months on steroids and I'm not sure it was correct. I'm considering going for a third opinion at a huge expense to me, but it would be worth it. I know I need to get off steroids, but it seems like my rheumy is in an awfully big rush and as you know, you can't rush PMR. It makes up its own mind when it will leave, if ever.

    I'm sorry for people like the PMR group founder who still has it after so many years. I hope that doesn't happen to too many people....

  • lily58584
    lily58584 tiggersue

    Posted

    I'm reading some posts that are 5 yrs old.  I'm sure they are still important.  Just don't know if I'll get any response.  I'm Lily.  2 months ago I experienced frighten pain, inability to walk and hospital stay.  Long story short I'm a 64 yr old with osteoporosis and Ambon a low dose 5 mg if prednisone.  We t to a rheumatologist last week, and he told me to go on leflunomide.  I read all the side affect any many have me worried, BUT one that stood out was permanent hairloss for anyone with male/female pattern baldness.  I know people will think that is vain but I recently recovered from hairloss from a different Med.  Took 4 yrs.  is there any other Med that doesn't cause this?  I also read that the prednisone might also cause it to.  I went to Dr Mercolas site andcread about diet.  Anyone have any answers as what choices are out there, or should I just shave my head now?

    • EileenH
      EileenH lily58584

      Posted

      What is your diagnosis? That has a great bearing on what drugs might be of use. 
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