I have fully recovered from PMR - there is hope after all
Posted , 24 users are following.
I just wanted to let everyone know that after five and a half years I have eventually made a full recovery from PMR. This forum was the most helpful part of my journey - the encouragement, shared knowledge and advice (especially on reducing prednisone dosage) was a lifesaver. I even introduced my GP to this site. Thank you sincerely, fellow sufferers.
?I was diagnosed at age 58 and seemed to get it rather severely but now it has gone without a trace, I haven't lost any muscle strength, and my energy levels are back to normal.
?My PMR began suddenly one month after my mother died of cancer ( I cared for her at home while working full time and also looking after my husband who had torn his quadriceps tendons from his kneecap and was on crutches). My mother died in January, I had a flu jab in the first week of February, and in the second week of February I found one morning that I couldn't get out of bed without help. What caused the PMR? Take your pick! Both stress and flu vaccination together would be my guess, but there's no way of knowing.
?For those of you who are having trouble reducing prednisone, don't despair! I always took as low a dose as I could bear - always lived with a fair amount of pain because I was conscious of the side effects of the drugs. Halfway through I got stuck on 10 mg and thought I would be on it for life, but then slowly I reduced until I got stuck on 4 mg for about 3 months. After that I reduced slowly, slowly as advised in this forum until after 5 years I could feel the PMR starting to let go of its stranglehold.
?At the end I was actually taking half a mg every second day - nibbling a bit off a 1 mg tablet and saving the remainder for two days later. After a fortnight I thought it was too ridiculous for words, so I stopped taking any medication. Believe it or not, the rotten PMR flared up quite severely as if it was saying 'Hey - I was using that!' I refused to go back onto prednisone because I'd have had to take a higher dose, so I persevered with the pain until it eventually dissipated and I returned to my old self. I still can't do a full leg squat, but maybe that's old age working against me at 65!!
?It's a wonderful thing to be able to do the things that I couldn't do for 5 years. I can use my heavy cast iron casserole dish because I can actually lift it out of the cupboard now. I can wear a t-shirt because I know I can get it off by myself. I can try on new outfits and new bras without help, and I can dry myself properly after a shower because I can swing my arms above my head. No longer do I have to fall onto the bed after work to have a nanna nap, and I can enjoy a brisk walk and even my bicycle is getting used again.
?The only advice I can give to anyone who is newly diagnosed is don't push yourself to do stuff that you used to do. You need to rest, accept your limitations, and look after yourself. After years of swimming through treacle, there is light at the end of the tunnel.
12 likes, 28 replies
ClaireJG Neralie
Posted
Congratulations on recovering from PMR! You mentioned that you worked full-time while looking after your mother. Did you carry on working after you developed PMR? I have been on long-term sick leave after initially returning to work for several months and subsequently struggling to manage the long commute and the busy working day. I dropped a day a week, but it was still too much. I'd be interested to know if you carried on working, because it's been impossible for me. Despite the Occupational Health Department appreciating that I can't currently work, my GP gave me a certificate for three weeks today! To be fair, I hadn't see him and only emailed him with an update and a request for a certificate, but I think he's unrealistic....
Neralie ClaireJG
Posted
Clair, I did reduce my working hours to part time after the onset of PMR. I was fortunate enough to have a sedentary job so it was just a matter of getting to work. I was within easy walking distance of my workplace which was lucky as I didn't drive while I had the PMR - couldn't turn my head to look for traffic because of my stiff neck, so I felt I was a danger on the road. Walking to work took twice as long as it used to, but I warmed up as I got along. Had to psych myself up to step up a 5 inch gutter - my legs were like stiff logs. I found working was a distraction, but it was difficult to concentrate. I made some weird mistakes, but I worked with a wonderful supportive group and had a very understanding supervisor who had suffered from chronic fatigue syndrome, so made many allowances for me. I used to be completely exhausted when I got home from work. I would flop on the bed and feel as if I would never get up again......but with PMR you have to get up and get going because you stiffen up with lack of movement. What a ghastly condition it is - you have to live with it to know what it's like......relentless pain and exhaustion day after day.
Elijo Neralie
Posted
Co reasonongratulations Neralie!!! You have written a very sensitive description of your PMR journey. I strongly do feel that stress is a strong causative factor as it was in my case also. Mybrother died, my sister became hostile to me for no reason, we had gone to Spain where I had a terrible fall, hurt myself and struggled through the tour, had court case regarding shoddy dental work, had trocanter bursitis (treated with depra medrol with relief. Shortly after I became somewhat disabled, started on 40 mg. prednisone gradually reducing, now down to 4 mg. I have reduced to 3.5mg. previously resulting in a flare. Went back to 5 mg, now reducing slowly again. My MD said 3 mos. ago that I should just stay on 5mg. Now he says I do not have PMR now since previous blood work didn't show it. My blood work was never way off during this journey, and I've learned that to be a fact from this wonderful site. He's gotten me too confused. He didn't even order a test for my last recent appt., but is ordering it before my Dec. appt. I did say to him that if I don't have PMR then why am I taking prednisone? No answer. He is claiming it's arthritis now. I responded that the PMR aches were different, then told him that he never had it so may not be aware of how it feels. So I'm doing the reduction again. I hope you stay well and again congratulation! Sincerely, Elinor
Elijo
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Neralie Elijo
Posted
Elinor, I agree that stress seems to be a common factor in many sufferers. I didn't feel stressed at the time when my mother and husband needed me so much because I was too busy to think about it, but I realized how exhausted I was after it was all over.
?You are right about recognizing the PMR aches as being different from arthritis pain. My sister actually diagnosed a work colleague with PMR because she recognized the 'walk'. Her colleague had been trying to find the cause of her muscle pains and her doctor had no idea what was wrong with her, but my sister realized she was walking in the same funny stiff way that I was, and suggested that she had PMR, which turned out to be right.
I found the best way to describe the aches to people was to tell them to imagine that they had painted a whole house inside and out without a break in the days before. Imagine how you would feel after painting ceilings with your arms above your head, climbing up and down ladders carrying heavy cans of paint and rolling paint on walls and squatting down to do architraves. That's just how you feel all the time with tired aching legs, arms, shoulders, neck and hips but it doesn't get any better with the passage of time.
Michdonn Neralie
Posted
Congratulations, hoping we all can join you OFF the devil's tic tac. Thinking positively and smiling. 🙂
Neralie Michdonn
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I was lucky that I got on well with the prednisone - it seemed to suit me, but I knew what it was doing to me long term so I treated it with respect. It's a lifesaver as far as managing inflammation goes, but not something to take lightly.
linda17563 Neralie
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keep well......
Guest Neralie
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TheRaven Neralie
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Great to hear from someone who's found the light at the end of the tunnel! Thanks for sharing the good news and your thoughts about our common enemy. I'm only a little over a year into the fight and hoping to get below 15 mg before too long. Sometimes I think I'm my worst enemy, trying to keep to the same level of work as before PMR along with the same hours. I am really convinced that stress is a major item with PMR both at the start and throughout the time we have it. Its gone well the last couple months at 15 mg but the last couple days I've found the familiar muscle pains kicking me again. Hoping it eases off in a couple days but if not I'm prepared to take the pred back up a notch or 2.
paula50188 Neralie
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Joystick Neralie
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Neralie - bless you for posting this and holding out hope to those of us newly diagnosed. Thank you so much.
susan91476 Neralie
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Good for you!