1. Community
  2. Bones, joints and muscles
  3. Polymyalgia Rheumatica and GCA

I have not been diagnosed yet

Posted , 6 users are following.

sandra28555
sandra28555

i am constantly in horrific pain and I can't stand in one place. My legs have been severely swollen and the dr. says I have peripheral vascular disease. I am using the Ted hose to my knees. They help with the swelling but are very painful to wear. There are no Rheumitologists in this area so who would you people recommend I go to?

0 likes, 19 replies

19 Replies

Next
  • ptolemy
    ptolemy sandra28555

    Posted

    Why do you think you have got PMR? Do you have bilateral shoulder pain and or bilateral hip pain? Did your doctor take any blood tests? Did they give you any medication for your symptoms?
  • FlipDover_Aust
    FlipDover_Aust sandra28555

    Posted

    If swelling of the legs is all you have then it's highly unlikely that you have PMR. I could recommend a rheumatologist but I don't think it would be much use to you since I live in Canberra, Australia!
  • Oregonjohn-UK
    Oregonjohn-UK sandra28555

    Posted

    Sandra - I would concur with the others - it dosent sound like it's PMR?  Has your GP recommended you go to a rhuemy? If there is none in your local hospital there shound be one in a city nearby.
  • sandra28555
    sandra28555

    Posted

    It isn't just my legs swelling. I hurt everywhere! I can't even stand to sit on the potty, there is so much pain in my hips. My whole body is wracked with pain. I am so tired all the time that I nod off when my friends visit but I can't shut my eyes during the night. I can't understand why people who want to diet can't and I would give anything to just shut my eyes and let it all go away. My doctors can't find any major problems and I am so sick of seeing them. I don't know what I have but I just can't take much more.
    • ptolemy
      ptolemy sandra28555

      Posted

      If you have vasculitis I can imagine you have a lot of pain. Have you been offered anything to help this? 
  • sandra28555
    sandra28555

    Posted

    They haven't given me anything for that. However, I do go a pain clinic where they give me pain medication for my back and bilateral hip pain.
  • Anhaga
    Anhaga sandra28555

    Posted

    Oh Sandra, how awful for you. Do the pain meds give you any real relief?  If you take someone with you to the doctor, or even the emergency department, that may help you get more of the care and attention you so need, as your companion will be able to support you.
  • sandra28555
    sandra28555

    Posted

    My husband goes with me. He is so very good to me. I am allergic to Lyrica so I am unable to take that. The pain pills are all I have and they do nothing that I can tell. I would stop them but I am terribly afraid of what would happen. Does the steroid help you people? Please give me any advice you can as I will try anything at this point. Thank you so very much. Sandra28555.
    • FlipDover_Aust
      FlipDover_Aust sandra28555

      Posted

      has anyone suggested it mught be PMR? have you tried prednisone? It's a pretty sure way of finding out if it's it PMR - it either works or it doesn't!

      I'd be demanding a short but high course of pred!

  • snapperblue
    snapperblue sandra28555

    Posted

    For us to be helpful, we may need some more information.  How long ago did this start? Was it sudden?  Where specifically is the pain?  Does it occur on movement? Is it worse at certain times of the day?  Is movement stiff or just painful? (I understand that when the pain is really bad it may be hard to sort out fine distinctions, but telling us where the pain is worst and what triggers it will make your situation clearer.)

    PMR pain varies a lot, but there are common themes.

    PMR does not cause swelling, but that does not eliminate PMR- there is no reason you cannot have two things wrong at once.

    A trial of prednisone is the obvious next step because it is one factor doctors use in diagnosing PMR.  For most people with PMR, 15 mg of prednisone gives pretty prompt relief- the pain is greatly reduced or may be gone.  For a minority, it takes a somewhat higher dose.

    If you are in an isolated area without access to a rheumatologist, perhaps your doctor could call one for a consult?

    I hope you get relief soon!  Keep in touch!

     

  • sandra28555
    sandra28555

    Posted

    Just an update for myself: today I was diagnosed with PMR and will begin taking prednisone in the morning. I am not sure that changes my status here as they are both horrendous things to have. I am very sorry for those who have small children to care for because I could not do that at this point in my life. 
  • sandra28555
    sandra28555

    Posted

    I have only taken 2 days of prednisone 50mg and haven't noticed any relief yet. I am really struggling to know what to do. I had never heard of polymyalgia rheumatica before I was diagnosed and from what I can find, food plays a big role in reducing the inflammation. Apparently I have been eating fruit rather than vegetables. Can anyone help me with this? I am so stiff and sore all over. Thank you for any help.
    • ptolemy
      ptolemy sandra28555

      Posted

      If you are having no relief from 50mg it is unlikely you have PMR. It is normal to start on 15mg. You may have fybromyalgia which does not respond to pred for example or even vit D deficiency.
Back to top
Next

Report or request deletion

Thanks for your help!

We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.