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Deep aching migrating pain in lowr legs/arms?
LONG 3 yr story made short: With the onset of COVID Nov 2020, I began experiencing deep migrating aching pain in my buttocks, lower legs and arms/hands. 4 months later after a dose of Ivermectin to treat what my PC diagnosed as Long Haul Covid, I woke up in such excruciating pain, couldn't walk, get out of bed/out of a chair by myself, and the radiating aching pain was awful (especially at night). 1 year later, after my 2nd bout of COVID, I couldn't raise my arms and my shoulders, neck and collar bones were attacked the same way. I'm an ACTIVE, FIT, HEALTHY 52yr old. Finally, after 2 years of bloodwork, imaging tests, MULTIPLE drugs trials and alternative treatments to find the answer, I was finally diagnosed with PMR. Prednisone is the only thing that has given me my life back. HOWEVER, prednisone does nothing for the deep aching, radiating, migrating pain in my legs and arms. In my 3rd year I have found that IV ketamine treatments and avoiding dairy, eggs, meat, and sugar have helped tremendously. This pain seems to be mentioned here and there in the PMR forums I'm on, but no doctor I've talked to recognize it as part of PMR. Anyone else experiencing this pain? I want to know what is causing it so I can address it.
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@kberlyhouse, I'm wondering if you have multiple conditions. There are a lot of diseases that mimic PMR that you might want to check out the symptoms for each. Prednisone got rid of all of my pain within hours of the initial dose. The fact that you still have pain in the legs and arms does make it sound like it might be something in addition to PMR.
--- Diseases that mimic polymyalgia rheumatica (PMR): https://www.medicalnewstoday.com/articles/diseases-that-mimic-polymyalgia-rheumatica.
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4 ReactionsThanks so much for that info! Very helpful. We have already ruled out most of those with testing but My doc is now testing me for ankylosing spondylitis. I don’t really seem to have the symptoms for that but waiting for a test result.
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2 Reactions60 years old / Current 7.5mg Prednisone I've had pain like that but mostly shoulders and now wrists. When I got PMW 6 months ago I went on a Vegan diet with no gluten, dairy, oils, or anything acidic. It is working along with exercising atleast 3x a week.
How many mg of Pred are you currently on?
Good morning ! So, @tjmjsjwj (your username is a high Scrabble score ! ) replied to a conversation that is 2months old. I'm curious @kberlyhouse -can you tell us what happened to you ? and the ankylosing spondylitis testing? Do you have a history of spinal issues ?
I was Dx wth PMR in April. 30mg Prednisone tapered to 7 mg now. I have just had MRI of both legs for deep searing pain in my thigh that has persisted for last 5 months and PT not helping. sitting in car and driving specifically makes it worse. The MRI shows inflammation at top of right femur.
"Finally, after 2 years of bloodwork, imaging tests, MULTIPLE drugs trials and alternative treatments to find the answer, I was finally diagnosed with PMR" <
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2 ReactionsHi @nyxygirl! Thanks for checking back. I do not have ank-s. Test came back negative. I was referred out by my Rheumy (who I told needed to read some forums to understand PMR better!) to a Georgetown U hospital Rheum. He was awesome. He confirmed that I do have PMR and also Long COVID. PT also did not help but made my condition worse. I’ve tried Kevzara- no relief as I tapered below 4mg all symptoms increased. My new Rheumy says I’m doing all I can. Meaning that there is no other answer pharmaceuticals other than Pred. Soooo I’m doing sauna 4-5x a week and will start alternating red light therapy soon to help reset my immune system. This is a case of immune system gone haywire so I have to address it from that perspective. Still on 5mg pred daily as that level allows me to exercise and function. Still have the roving pain in legs and arms. That has been helped greatly by eating a vegan diet (I miss meat and eggs!!), but I do eat some fish. Hope that helps!
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2 Reactions@kberlyhouse thanks for your update -
"forums to understand PMR better!-"-- have you visited this site ? PMRandIL6.com. ? scroll trough the slides AND at the end there are some videos under the resources tab . https://www.pmrandil6.com/resources/
scroll down to get to the short videos.
- "I’ve tried Kevzara- no relief as I tapered below 4mg all symptoms increased." you might need more time to realize benefits is my understanding !
" immune system gone haywire "- ha ha ! I've never thought of that way since there is some basic research going on and understanding about which immune cells are infiltrating the shoulder and hip areas ! I like this figure below :
Good luck and thanks again for replying : )
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2 Reactions@nyxgirl yes, thanks! I've watched those videos. I was on Kevzara for a full 3 months, no impact. thanks for the image -- great picture to understand it.
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