... condition to talk to about their experiences
Hi Debbie, In 2011 at the age of 69 I came down with PMR. It came in four stages and responded to Prednisone within an hour. The first stage was both my leg muscles, knee to ankle. I woke up at 4:00 am with about 7 or 8 out of 10 pain which went away during the day and was gone by 9:00 pm. The cycle started the next morning at the same time. My doctor thought it was due to my statin and changed it which didn't help. After a month or so it went away. The next stage about a month later was whole body pain from my feet to my hands on both sides, same time cycle and same intensity. The doctor recognized it and put me on Prednisone which took the pain away in an hour. I needed to take the minimum dose to be free of pain and not cause cataracts, a possible side effect. Over the next months this stage went away and the 3rd stage came which was shoulders, arms, and hands. After that the 4th stage was the outer 1 inch strip and outer two fingers of both hands.
It hasn't come back but I eventually got cataracts, got artificial lenses and don't need glasses anymore. I hope this info helps. Best of luck, Dave Young
Hi Debbie Lou:
After 9 months of mystery pain and visits with multiple specialist drs., tests, etc. My GP mentioned PMR. Upon researching it fits me to a T. I'm not sure having a name to the condition helps any, but in some ways it does. I have been referred to consult with a pain management specialist but don't know how I feel about long term steroid use. However, I have gone from being an active healthy preschool and yoga teacher to barely being able to move through my day, completely spent by the end of the day and ready for bed by 8! If you'd like to share your experiences, I'm interested in how others are managing and dealing with this transformative condition. Peace. KW
I got PMR symptoms three days after getting a flu shot at end of Nov. this year. (I think the flu shot triggered the PMR, though doctor doesn't think it caused it.) Wasn't diagnosed until Dec. 19th. and was put on 20 mgs Prednisone and Meloxicam (NSAID). I'd never taken steroids before and innocently got on it, just glad to be out of pain. For me, worst part is in the a.m. when am super stiff in my legs and upper arms. Here's how I'm dealing with it so far: still taking the prednisone, but 6 days ago I quit the pain medication. Instead, I try to handle the inflammation to reduce the pain. (I watched a fascinating 2016 documentary about fasting and the results gotten in "re-setting" the body's systems, especially in those with arthritis or joint/muscle pain. Seemed encouraging, so am steering in that direction.
Note: fast should be medically supervised) Here's what I've been doing the last 5 o 6 days: I wake and immediately drink H2O, ginger water, matcha tea, detox tea, etc. I then drink a cup or two of organic chicken broth, and eat a few cubes of homemade "jello" (made from gelatin with a package of powdered daily vitamins gotten from Costco - they have a berry or mango taste, and few/no calories and contain no sugar.) With something in my stomach, I then take the Prednisone along with Vites A&D, C, B12, E, Garlic, Zyflamend (a "natural" anti-inflammatory), Turmeric/Curcumin, adrenal supplements. I then relax for a little bit, then move around until I'm loose enough to do light exercise. I bounce or jump on a mini-tramp for an hour, to get circulation going and reduce inflammation. I then soak in an Epsom Salt/Baking Soda hot bath for at least a half hour, and scrub legs, arms and belly with a massage-type brush (again to promote circulation and encourage reduction of inflammation. I drink 2 or more quarts of H2O or ginger water while in bath. I then have a few bites of organic sauerkraut for lunch on a 1/4 head of lettuce, with sprouts, Apple Cider Vinegar and a little flax oil. I take a probiotic capsule, maybe have another cup of matcha tea.
At night, I have a little broth or same as lunch, and have more gelatin cubes when needed or when snacky. At night, before bed, I have Zyflamend and Turmeric/Curcumin, and more adrenal supplements. I'm trying to do intermittent fasting, and/or be on a super anti-inflammatory, reduced diet (no: gluten, grains, sugar, dairy, nightshade plants, fruit, caffeine) So far, I seem to have a slight but noticeable improvement daily except when vary the above. I'm going to keep trying this and see how it affects my lab tests in two days... I'll go over it with my doctor next week. I just really want to get off the prednisone... wish me luck!
I'm 66 yrs. old and I just got diagnosed with PMR - started out with what I thought was an aggravation to an old knee injury (from working out 3 times a week) - went to knee doctor and he gave me a kenalog shot in the knee which was supposed to last 3 months, but only gave me relief for 4 days. At the same time one shoulder was starting to bother me but I didn't think too much of it at the time. I was getting ready to go on a week's vacation and the knee was very painful, so the knee doctor gave me a prednisone pack to get me thru my vacation - it worked great! But after I ran out of pills, the pain came back more aggressively, affecting the one shoulder first, then moved on to the other shoulder, then neck stiffness, then hands, then hips. I thought it was some form of arthritis.
But when I finally got in to see my primary doctor, he made the diagnosis of PMR almost immediately. I looked it up online and wow, these were my exact symptoms. So I got a 10 day supply (1 tablet per day) of 20mg prednisone and I am on day 3 - the pain has subsided substantially to where I can at least sleep, but hasn't gone away completely. Doctor also told me to stop taking my statin drug which I have been on for 25 years during this 10-day experiment, so that was weird. Anyway, the prednisone does help, but I'm skeptical that it's going to knock this out completely, so I'm probably headed to a rheumatologist in the future. This is nasty stuff. Glad I found this support group.
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