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Radman

Posted , 8 users are following.

sami5555
sami5555

Hi Radman and Eileen and all you sweet dollies,

I have been on this sight for 5 years. Always too scared to post. This sight has been everything to me and I love you all..

I started feeling pain in my hips and legs walking and especially sleeping 6 years ago. When my hubby and I would go for our nightly walk my legs would hurt and especially just going up a curb, then sitting on the couch watching tv and if I would go to stand up I would be in so much pain . So stiff like i was 100 years old. I lived with that for probably a year not knowing . Thinking I was just getting old. Holding a paperback book hurt my arms so much I decided to go to my DR.

I told him I know Im getting older 55, but is this normal? He said no and ordered blood tests.

My blood test showed normal. That one auto Immune test showed high or positive sorry cant remember right now but will look later.He Sent me to a rheumatologist. Rheumatologist was great and we went slow trying to figure it out. I was reluctant to go on prednisone. i finally agreed to go on 15 mg prednisone After a week I was feeling so great. Been on the same journey as all of you. At one point decided to be off pednisone but could barely move. Went back to Rheumatologist and had to go back on prednisone to enjoy life again. Right now I am on 7 Mg. i know i should probably be on more to help with pain but I am getting by. i work on my feet 4 days a week. Im a bad ass and try to push through. lately my heels have been really aching and I remember that from the early days PMR. Does anyone else have that?

Also Eileen, i am getting my blood test again for the low cortizol level. Which I think has to do with the prednisone. It may account for my extreme fatigue some days.

Thank You to everyone on this site for your love and kindness to all of us who all of the sudden came down with this crazy PMR..

0 likes, 9 replies

9 Replies

  • r.d.s26296
    r.d.s26296 sami5555

    Posted

    Sami thanks so much for your contribution and joining in with us 'DOLLIES'

    You certainly are a fighter, and haven't taken a negative attitude to this debilitating disease ...

    i'm amazed you only started at 15mg pred, as I was started at 25mg for very similar symptoms as yourself

    I understand that the quantity of pred is prescribed according to the patients weight ....? and severity of the symptoms ..

    Anyway, good for us you are on board, and may I add that I wish you a speedy painless future ...

    • sami5555
      sami5555 r.d.s26296

      Posted

      Hi Radman,

      Thank you for writing back and all the other sweet dollies. I realized when i wrote back it was just to you and not the whole group. Thats ok, a few people saw it. I love the responces. Makes me feel not alone.

      I forgot to mention that when i went off all prednisone thinking maybe I did'nt need it, I was in so much pain. Could barely turn my stearing wheel to drive. i remember tuning to move something in the back seat of my car or my maybe to grab it and and the pain shot through me like a lightening bolt. After that i went back to my Rheumatologist and begged to go back on prednisone. 20 mg was the bomb. i felt absolutely no pain. Wish I could live on that but I know we can't.

      So you are in theUk. I think a lot of us will be so interested to anything you will post. Especially a Dr. Im in the USA and Im probably using the wrong terminology.

      My daughter is In Nottingham getting her masters. . We are coming out in December to visit for the first time. Please keep in touch as I am on board to hear all of your journey.

      Thank you so much for caring about all of us.

      Btw. My name is Sheila I guess a few years ago when I was goofing around trying to go on this site and was nervous i used a different name.

      Please keep us updated.

  • margaret22251
    margaret22251 sami5555

    Posted

    Hi Sammi, what an interesting story so similar to my own, as i started with the hips, tried to get out of bed no such luck.

    Interesting what you said regarding your heels, as i had that, had a ct scan and they found i something called mid foot OA

    was given injections there and then, they did help but was not offered anymore as i am on pred and have injections in my bum! every so often, also i have shoes made at the hospital to help walking, just had a review and they said i need a new design of shoe.

    I must admit i have been well cared for at the hospital i go to, they dont like like me going with my pile of papers with questions, but thanks to Eileen and others i am always well prepared.

    Have a good day

  • Vicki200252
    Vicki200252 sami5555

    Posted

    Hi Sami

    my symptoms where nearly the same as everyone with pmr and I have heal pain and my feet feel like they are burning.

    I started on 60 mg, but my doctor since then has taken the dose down drastically in 80 days I WENT FROM 60-10 then down to 7 , all the pain come back and the doctor couldn' t believe it. She put me back on 25 mg and drastically took it down to 10 again. That's when I STUMBLED ONTO THE FORUM , I have learn't so much from everyone.

    I have my 1st specialist appointment on 6th November and I can't wait.

    I am on 9mg and I have decided to stay there as I'm in so much pain , head , neck , legs, pelvic girdle, arms, shoulders, my eyes are even burning, finding turning in bed difficult again.

    Don't mean to sound ungrateful to my GP but i'm not going off quickly, she wants the specialist to see me in pain , well she can jump i'm not prepared to go lower atm as my pain today is extreme.

    • sami5555
      sami5555 Vicki200252

      Posted

      Awww. So sorry you are going through this. Happy you found this awesome forum. I can hardly wait for November 6th for your specialist appointment. Please hang in there. You will be ok and you have all of us.

  • Vicki200252
    Vicki200252 sami5555

    Posted

    Hi Sami

    my symptoms where nearly the same as everyone with pmr and I have heal pain and my feet feel like they are burning.

    I started on 60 mg, but my doctor since then has taken the dose down drastically in 80 days I WENT FROM 60-10 then down to 7 , all the pain come back and the doctor couldn' t believe it. She put me back on 25 mg and drastically took it down to 10 again. That's when I STUMBLED ONTO THE FORUM , I have learn't so much from everyone.

    I have my 1st specialist appointment on 6th November and I can't wait.

    I am on 9mg and I have decided to stay there as I'm in so much pain , head , neck , legs, pelvic girdle, arms, shoulders, my eyes are even burning, finding turning in bed difficult again.

    Don't mean to sound ungrateful to my GP but i'm not going off quickly, she wants the specialist to see me in pain , well she can jump i'm not prepared to go lower atm as my pain today is extreme.

    • margaret22251
      margaret22251 Vicki200252

      Posted

      Go armed with information make a list of questions you need to ask they wont like it bu as i was told my someone on this forum whoses body is it. good luck

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