Well well confused again AND what's a PM & R ?

After you last rheumy appt i was fearful to return to this other for a second time. This one said " I don't believe it's PMR, if it was you'd be better by now ." Said anyonexwoild feel better taking 12 mg of steroids for pain of anythingv🤔Seems to think 1 1/2 yr is to long to have it. That since April i should have lowered farther from 20, than the 10 I was currently taking. I explained pain is handled except for extremes in fatigue and night hits me in joints. Gave me a schedule to lower prednisone and said to see a PM&R doc. Honestly I'm not sure how they can help? My blood work of august looked ok only "slight elevation, nothing to worry about. " 🤷‍♀️All I know is currently trying 9 mg with the methotrexate and I'm in bed 12-16 exhausted and heavy .Mentally- I'm fight my mind not to giving up on my body 🤷‍♀️

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  • I wish these doctors would realise that they have the power to transform a patient's experience of a disease with words and a compassionate attitude. It is astonishing to me that a person would spend over a decade training for something only to fail at the most fundamental level.

    You seem to be doing pretty well to me.

    The fatigue is a killer and it is a present from PMR and steroids I'm afraid. Whenever I can ,I put myself to bed, brushing away all the guilt and conditioning about " sleeping your life away" etc. Inexplicably I can feel bright enough to go for a long walk or clean my house sometimes.

    Are you honestly, still trying to do everything you used to?

    I miss my little grandson sooo much and although sad that I don't get to look after him anymore, I must admit I have hardly any pain now. The fatigue and the awareness that I'm taking strong drugs is there, so I don't feel great.

    Not sure I understand the term PM&R doctor. Frankly, any doctor could be better than the energy stealer you've got.

  • Long ago I've given up "trying to be my old self" I'm ok with that. My gosh I went to listen to a musical group one night; the next day a couple of hours at a house warming and bam down for 3 days. This I wish to solve :)

  • Thought I'd already posted this: "Physical Medicine and Rehabilitation (PM&R) physicians, also known as physiatrists, treat a wide variety of medical conditions affecting the brain, spinal cord, nerves, bones, joints, ligaments, muscles, and tendons."

  • That's what my google returned, but still haven't ever heard of such. Asked my MD before googling and she said basically they are PT directed . Sigh

  • I actually know of one - not personally. It's just a fancy name...

  • Anyone is going to be an improvement on THAT one!

    Sorry - I get so angry at doctors who insist that PMR only lasts a short time. Are you in contact with that chump? Send him this reference:

    clinexprheumatol.org/articl...

    The conclusion come to by one of the top groups in the PMR field: "PMR is not a benign condition, as often reported, since one third of patients need steroid treatment for more than 6 years"

  • Honesty if it weren't for this group I would believe them, but after all of your comments and MANY others post, I seem to know better than believing their points of view.

  • Oh its all so very scary that we look to these "specialists" and really a lot of them don't know wht they are doing. No way would my rheumatologist give me a prescription for the steroids after taking me off from an alternating of 2.5mg phase of 6 weeks. She just stopped them (I have this PMR circa 18 months). As far as she was concerned I was now cured - it ended up with me out of work for over a week I got so bad with the pain. I had to go to my GP who put me back on a low dose 2mg til I could get some hold on it. So these forums are invaluable - so we are not all doing the wrong thing just because the "specialist" is reading from something or other and thats how we all should go.

  • Indeed true- I've learned to take this site and doc suggests together

  • I went to a physiatrist on my journey to diagnosis. I am in CT, USA. She gave me the most thorough physical exam, asked all kinds of questions, and ordered PT (shoulders didn't work at all at that point). She was kind and concerned. She prescribed pain killers and then muscle relaxants. When I called and complained that neither worked, she answered that it was the last piece to the puzzle. The bloodwork came back, she referred me to a rheumatologist. Rheumatologist basically looked at everything done, told me I had PMR and gave me prednisone. I would go back to this doctor in a heartbeat. She was like a caring detective, but it seemed like her job was to figure out what was wrong and get you to the right person.

  • That's a great experience and I shall let you know what mine says here in Cleveland Ohio. Though a referral back to a rheumatologist wouldn't behoove me. That's whose sending me to the disease detective :)

  • Dang pressed send before I finished- how are you feeling now?

  • Hi, for the most part I'm doing very well. I just slide down to 1.5 mg. I have been able to slowly increase my activity level over time. Not back to where I was originally but not bad. I seem to wind up with myofacial knots fairly easily. I happened to get one in the piriformis muscle earlier this week and I'm having difficulty getting it to settle. Just came back from having it worked on. It's going to take at least one more session I'm afraid. I think the hardest thing for me has been how unpredictable this journey is. I know if I overdo things (or stress) it causes problems but sometimes I think I'm managing fine and then I'm not. It's frustrating. Good luck with the fatigue. I found that difficult but it does get better. Remember to pace yourself. Good luck

  • Wonderful to hear. I hope for continued health on the uprise for you

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