PMR

[29Pain00]

I felt like every bone of my skeleton hurt. Going to my chiropractor didn’t help. My usual go to med for OA ,Aleve, didn’t touch it. Had xrays and MRI. Rings that I had worn for years suddenly were too tight. Hand specialist said that was what jewelers were for, have my rings resized. After reading MRI doctor said my back and neck had issues. He said I could try neck therapy because that might help pain in shoulder and hands. I have had neck and back issues for years. I know my body and this was different. Gave some of my shoes and socks to granddaughter as they hurt my feet and toes. Could not walk across my kitchen floor barefoot due to pain. I would often sleep in my recliner as it was the only place that didn’t seem to put pressure on my joints. I was visiting with my brother and he got up and wanted to know why I was sleeping in the chair. He had recently been diagnosed with PMR which I had never heard of. After comparing what was going on, he said you have the same thing. Since I still had ten days before I was going home, he gave me some of his prednisone. (He is a doctor). Within 24 hours I was a new person. In less than week, I was golfing with no pain, rings I hadn’t been able to wear in over a year slipped right on my fingers. Shoes that hurt, didn’t hurt anymore. Can walk barefoot without pain. Sometimes waited for a couple hours to make bed, changing it was a real challenge. Can do both now without a thought. Went to my primary care doctor when I got home. She was reluctant to give me a prescription but because I had already seen so many specialist and had documented everything, agreed to try it on low dosage 10mg. Then she wanted me to go to 5mg. 10mg worked quite well but after a week of 5mg went back to 10mg. See Dr. Again next week and pray she lets me continue. She did say hands and feet pain was not part of PMR. I would have to disagree with that as once I had pain in all my other joints there was no other place for it to go. I know this is long but hope it helps someone else. I know I am able to do more and more things everyday and feel like I have been handed a new life.

[Hidden]

Hi 29pain00

Thanks for telling about your experience, it very common for some people to spend months in pain looking for a reason. Feet and hands are definitely part of my pmr. I had to go up 2 shoe sizes and ended up strapping my hands up and bracing them as even touching them was hard sometimes. There is a research paper about hands and feet being part of pmr, but i cant remember it. I am sure someone else will! Welcome🌻

[Christophene47]

Not sure how a physician could categorically state that PMR doesn't involve hands and feet. It is a systemic disease; it has bothered my hands, some fingers, now ankles and feet as well as many other places. So you are not alone.

[pmrgcavictim in reply to Christophene47]

The GP I saw yesterday informed me that PMR ONLY AFFECTS THE UPPER BODY. I wonder if he knows what PMR is.

[Noosat in reply to pmrgcavictim]

That response is crazy? When I was diagnosed all the pain was in my lower body, especially my thighs

[Purplecrow]

Hi, in my non-medical opinion, your doc sounds misguided and uninformed about locations of all the possible PMR pain. I have had pain in wrists, fingers, hands, forearms, shoulders, back, hips, buttocks, feet, and knees. Pain seems transient and unpredictable, other than obvious strains from carrying too heavy packages, and overuse during a moment of zealous activity.

Sorry your doc is messing with your pred, you are really the one who should have the reins with regard to tapers and reductions of prednisone.

My PMR journey is 5.5 years and I have recently experienced a flare brought on by life stressors, and physical exertion.

My rheumy monitors me, but lets my symptoms guide my treatment.

The experts will weigh in soon, offering more technical advice...i just send best wishes, and

Kind regards, Jerri

[jinasc]

Explain to your GP. that as PMR = the oxygen supply to the muscles is impaired, result pain....................muscles are all over your body, including tiny little ones on your hair.

[polymy]

I disagree too with your doctor. My hands have always been affected to the point that when off pred I couldn’t even bend them. I think I would change my GP. Find one who who knows pmr when he/she sees it.

[PMRpro Ambassador]

I wrote about "hands and feet are not part of PMR" yesterday. They are if you develop RS3PE syndrome which is quite common in patients with PMR, more so than in GCA. It can affect up to knees and elbows - and PMR itself is acknowledged to affect proximal muscles in limbs (biceps and quads).

See Table 1 in this paper (the paper itself is a hard read although the PCP should be able to understand it so show it to her and the figs and tables are self-evident) says RS3PE is "very common" in PMR

academic.oup.com/rheumatolo...

The Leeds research group have looked at it and they are pretty confident hands and feet are part of PMR.

Like Poopadoop my hands and feet were really bad and I had to change shoe size and style - those shoes are now useless as my feet are back to their old size. Birkenstock ruled for years!

[piglette]

Had your doctor ever heard of PMR before you went to him with it? It strikes me as amazing he put you through so much. Having said that, so did my GP. I even suggested PMR (based on Dr Google) to him and he looked at me as if I were mad. He said I had a virus. A long term virus! I went to a rheumatologist privately in the end. You are on quite a low starter dose, but it may work for you. Normally people start at around 15-20mg.

[Jackoh]

Need a new GP me thinks!!

[Linny3]

I am astonished how all our symptoms mimic each others regarding the feet. I have gone thru some really bad times with my feet. A ton of money spent on xrays, mri, different braces. Then to find out it was pmr. I too had to buy a whole new wardrobe of shoes because my feet and ankles were so swollen and sore. My feet are back to normal now and the pain has returned to my back. One thing though, upping prednisone did not seem to affect my feet. I only increase by 1/2 mg. In the past that was enough for any other part of my body.

Good luck to all with this maddening disease.

[daworm]

you should go up to 15mg and start the slow journey downward that we are all taking...great you finally found out..sounds like me the first time I had a bout of this...no one ever really figured it out that time but a Rheumy gave me a short course of prednisone and I had heavy duty pain pills, everything went away after 4/5 months luckily...this time I knew what it was and the pred worked right away...its not always a miracle like at first but I wouldn't want to be without it...and I haven't had many side effects at all....currently down to 5mg..

[kamille]

Hi, thank you for your post. I have pain in hands and feet with swelling. I feels sometime like a tourniquet or like a Blood Pressure cuff pumped up too high. This occurred horribly on an airplane with a long flight. So am I on track with it being part of my PMR? My face swells also.