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

Living with PMR

Posted , 19 users are following.

Guest
Guest

I was diagnosed PMR last Fall.   I was so bad I had to fall out of bed and roll just to get up.  Up untill then, I was a dancer, outdoors person.  Hiker, camper, kayak etcc...   I was on prednisone.  My weight ballooned.  I moved on to Celebrex.  My weight continued to go up.   I chose to go off the meds.  I want to lose weight.  However all I want to do is lay on the couch all day because I am in to much pain to do anything.  Walking is the only relief I have.     Does anybody have any recommendations of Natural remedies I can take?     I have been taking Jameson Body Guard but I still need Alieve to go with it.    Now I am not only in pain, but fat and depressed too.

0 likes, 129 replies

129 Replies

Prev Next
  • Guest
    Guest Guest

    Posted

    I totally agree with the other postings.  We are all taking our Pred because most of us have reduced our Pred too quickly and felt so bad. Yet felt  so much better when we increased it.

    I too have put on a huge amount of weight, mostly due to a newly sedentary  life with very little energy. We all know what you are going through but it is very important for you and your family that you continue to do what ever it takes to get rid of the pain and come back to life! 😍

    • Guest
      Guest Guest

      Posted

      Thank you. You are right. I see my staff pictures at work and I cringe.. But I at the same time I can't tie shoes and go up and down the stairs . So I guess I need to decide my priorities and stop being vain. 😕
    • EileenH
      EileenH Guest

      Posted

      When I put on so much weight I looked around me and thought "There must be a LOT of people on steroids!". I'm not supporting being overweight and, even less, obese and feeling it is fine. But there is a good reason for us gaining weight - some healthcare staff will say it's still from eating more than we should in response to the appetite pred creates. I believe though that by not eating the carbs in the first place you can do a bit to improve that craving for food that makes us eat so much and gain weight. 
    • Guest
      Guest Guest

      Posted

      I have learned a lot from this group. I am going back to the doctor and going back on Pred. This time I will be conscience of the easy weight gain. I will eat a low carb diet and get rid of sugars. I will go swimming and walk more. There is SO much experience here. I must thank everyone who has given me great advice
    • ptolemy
      ptolemy Guest

      Posted

      I am so glad we all convinced you. Take things easy and pamper yourself! 
  • Anhaga
    Anhaga Guest

    Posted

    busymom, I feel that my nutritional comments have kind of hijacked your conversation.  I hope you are feeling better today?  Here is the Piet Hein poem (T.T.T.) I mentioned in an earlier comment:  wink

    Put up in a place

    where it's easy to see

    the cryptic admonishment

    T. T. T.

    When you feel how depressingly

    slowly you climb,

    it's well to remember that

    Things Take Time!

    • Guest
      Guest Anhaga

      Posted

      I have been taking Jameson Body Guard, Vitimin B 6 & 12. I go doe massage therapy and I bought TA portable Shiatsu.Some days I need to take an Alieve but most days I have been handling things. I am wondering if Physio will help me...
    • ptolemy
      ptolemy Guest

      Posted

      I am amazed you can get adequate relief for PMR from what you are taking. I have a portable Shiatsu massager but have not used it since I got PMR as it is quite rough. I just get one of those lavender things you heat up in the microwave which I find a great relief particularly for any shoulder pain. Physio can also cause problems unless you can find a physio who knows about PMR. You can always try steroids for a few days and see if they work. I would be so worried about getting GCA and going blind by going down the route you are taking. 
    • EileenH
      EileenH Guest

      Posted

      Be very careful with physio - make sure the therapist knows about PMR. Normal physio often doesn't work for PMR patients - repetitive or sustained actions are the main problem with PMR because the blood flow is impaired and the muscle isn't getting enough oxygen/nutrients and the lactate isn't being cleared away so recovery takes much longer than normal.

      I coped with PMR for 5 years without pred - not out of choice - and have been on pred for over 6 years with little sign of an end. Would I have recovered faster had I been treated sooner? I'll never know - but I can tell you I would never again want to deal with PMR without pred. Now I can live a pretty normal life - I couldn't then.

    • Anhaga
      Anhaga Guest

      Posted

      I am going to see a physiotherapist who will be helping me deal with osteoporosis as well as the inflammation associated with PMR.  She has other PMR patients so seems to be aware of the issues.  My symptoms are really well controlled by the pred at the moment so I am being proactive in trying to deal with potential problems as I reduce my dosage further.  I avoid Aleve as I had a couple of really bad experiences with Naproxin and feel it is dangerous for me.  I know people here have recommended Bowen therapy or massage, but I've no personal experience of that.  I do know before my PMR diagnosis I tried both physiotherapy and regular massage therapy for the symptoms and neither were any use whatsoever.  Through this whole experience I have continued to do physio exercises that were prescribed for my arthritic spine years ago and it was when I started losing my ability to do these exercises that I finally managed to get a doctor who would listen to me and understood my symptoms for what they were.
    • Guest
      Guest ptolemy

      Posted

      Oh. I didn't realize I could.get that. I may have to talk to my doctor about thus. That's scary.
    • ptolemy
      ptolemy Guest

      Posted

      GCA is the big sister condition of PMR. Even if you take steroids there is the possibility of getting it, but the odds are much reduced than if you have no protection at all. I hope your doctor can give you some more information about PMR and GCA (Giant Cell Arteritis).
    • ptolemy
      ptolemy Anhaga

      Posted

      Anhaga I am probably a bit off topic but have you tried Tai Chi? It is supposed to be good for osteoporosis. 
    • Anhaga
      Anhaga ptolemy

      Posted

      Yes, I signed up for classes before I even had the diagnosis!  We have a class on Sundays at noon, and I have been practicing at home as well.  If there is an expression like "all thumbs" to describe the whole body, that would be me and tai chi, but I have been assured that I will grdually get better at it!
    • Guest
      Guest ptolemy

      Posted

      I am going to make an apt. And this time I have more information! Now I know what questions to ask. 😃
    • Guest
      Guest ptolemy

      Posted

      I am going back to Dr. Now I am more informed...
    • ptolemy
      ptolemy Guest

      Posted

      Good luck with your appointment.
Back to top
Prev 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.