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Recurrence?
In Jan 2024, PMR started in my quads, groin, ads and abductors, hams and rear end above hams. That lasted a few wks or so and then shoulders and upper arms joined the gang. Saw rheum and she did an US and said my tendons were inflamed but she didn't think it was PMR. Blood work showed slight elevation of ESR and Sed rate. She also checked for rhabdo because I asked for it and other rheum values. Nothing showed. I was glad she didn't think it was PMR but what was it? And what to do about this pain? I felt she was wrong. And still do. She responded to my concern with, "Perhaps tendonitis." I couldn't keep taking ibuprofen per my cardio. Acetaminophen didn't work. Steroids were a no go for me. Too many contraindications.
In a month or so Baker's cysts developed along with everything else. So painful. So, I just took one Advil per day and suffered through for months. I was about to go on LDN after much research and finding an amazing doc who treats my daughter for long covid with LDN.
Finally during the summer of '24, the pain began to leave my legs. I couldn't believe it. Baker's cysts much better, perhaps gone.
Shoulders and upper arms were much better but certainly not as pain free as my legs.
I was thrilled anyway. Markers were normal.
I started carefully working out again...missed it so much and my cholesterol levels did too. Began walking over the summer. Went back to strengthening gently in the fall.
Then in early winter '25, I broke my wrist. It was horribly painful from the time I fell on it for weeks after casting. 6 wks in cast, then 6 sessions of PT which was a surprise as wrist is still stiff and painful. But they released me, so.....that's another issue.
During the time I was casted, my body took a beating from favoring one side over the other. My shoulders and upper arms got much worse. I do have slightly torn rot cuffs, prominent arm worse. That showed in the US and pretty sure there is more deterioration from overuse. Not sure what's going on with that.
Over the last few wks, my Baker's cysts are back, and I feel some pain coming and going in the thighs and other areas from the initial '24 condition. I wonder if this damned thing is coming back.
Right before I got this the first time in '24, I had increased both my cardio and strengthening workouts to include much more pressure on my thighs. I think that may have had something to do with the PMR but not sure. Definitely something auto-immune going on as well. So I also wonder if starting exercise again has stirred it up.
Has anyone had similar experience? I did not get covid or flu shots this year.
Thank you.
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I am not a doctor but have had PMR for years. Have you ever tried prednisone? I suffered for some time and then figured out what it was. My doctor prescribed prednisone and after the first dose my pain was virtually gone. My sed rate was elevated but sounds like yours is not. Might be worth a try if you doctor agrees.
Glad that worked for you. Can't take steroids. Contraindicated for so many reasons.
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1 Reaction@glinda47 There are other treatments for PMR. I thought those side effects were possibly more serious than steroid side effects. Leaving me in a conundrum. I resisted steroids for several years. First doctor wanted to start me at 40mg per day. No way!!! I found a Rheumy who was willing to work with me. Started at 10mg per day, was on them with tapering for less than a year. Check out options with your doctor. In the end I only wish I had found my Rheumy earlier.
You can always get a 3-5 day steroid Rx to see if that gives any relief. Short term use of steroids should be safe for most people. Talk with your doctor.
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2 ReactionsThanks, ja. Glad you found that rheum too!! It boggles the mind how some docs have no problem throwing large quantities of very potent drugs at patients without a blink of the eye.
SMH.
I might very well try a predpak or something like you described involving small doses of pred over a short period. But I think if this thing returns in full blown manner, I will go with LDN.
Really appreciate your kind feedback and wishing you pain free and fulfilling days.
Please know the a Medrol Dose pak is not prednosone. It it a different steroid. If you do have a trial run, please make sure it is what you are expecting.
Also, please consider what you might be asking/expecting of your body should you decide to not treat the pain. Stress on your body due to pain, can, over time, cause it's own set of problems. This is something I did not properly factor in initially to my decision making process and I wish I had.
I wish you a successful journey as well.
I'm referring to pred, not medrol.
I'm intimately aware of pain and its effects not only physically but mentally as well.
Sorry you are too. Thank you for sharing.
I haven't been diagnosed with PMR, yet! But over the years have progressed to what I'm dealing now. About excerise......I have had to stop a lot of things and try VERY SLOWLY to increase ......major hip gluten muscles......I've had bursidus, ect! Don't be hard on yourself...! Be kind to yourself.....do what you can, but keep in mind what triggered your pain in YOUR body....HUGS
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1 ReactionI wish I *knew* what triggered the pain....will never know for sure unless some stunning discoveries are made about PMR and the current mess in our country, we can forget medical advances esp for something like PMR.
At any rate, sounds like you're doing better than most, so my wish for both of us is not to get any worse.
I will work out until I absolutely cannot. Trying to increase both cardio and wgts now. We'll see. Take good care and thanks for posting, ft.
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1 ReactionWhen I'm well.....I'm very active,.....taking care my 83 year old husband with Parkinson's, live on a 5 acres.....lots to do around here...?2500sq ft house, dog, cat, chickens, firewood( making, stacking, bring to the house,etc...and the rain won't stop to get caught up on the GRASS! But have learned over the years with what I have been diagnosed with fibromyalgia, spine issues...etc....do what I can, when I can and try not stress about it.....which has been the hardest! HUGS TO EVERYONE WITH THESE KINDS OF PROBLEMS
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5 ReactionsYou are incredible!!!! I cannot believe all you do, but I have to say, I think it keeps you going.
So sorry about your husband. My brother had Parkinson's. It's rough.
I do not know how you do all of this. I hope you have some help and support.
Much love and light to you and your husband.
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