Polymyalgia Rheumatica (PMR): Meet others & Share Your Story

thank you John. Although I am careful for sodium intake, I do have low eGFR (low kidney function), but started back on Juniper essential oil and berries and it has helped tremendously - went down 2 lbs in 2 days. I do have a history of Dactilytis.

that certainly works for me - start with 2 x 12 oz warm water with lemon in it

Thank you Amanda, I waited a couple of days to respond as I wanted to see what is or is not working. Yes, I have mantras and affirmations, and I print off and post in areas of the house that I can see them often. Most of my mantras, etc. start with wording which is believable for me. "I am willing to release/accept/open the way to..." - whatever ending is for what I want to happen.
My biggest challenge has been that at times I have felt guilty - as a holistic practitioner "I should know better" So self judgement was huge. I now allow others to help me both with physical help and with allowing myself to be vulnerable and truthful. "yes, today is a crappy day, but I'm looking forward to tomorrow!" Changes? yes! I am not owning the pain, and therefore in that moment, I find it somehow isnt as important. Difficult to explain without sounding arrogant, but it just doesnt seem to be holding me hostage in the same way. When I start to control my life/health I turn to this "prayer"
Good Morning Sasha, this is God (or Universe/Spirit/God of your understanding)
I will be handing your problems today.
I do not need your help.
Have a good day
God/Universe/Spirit

I have had PMR for 8 months, I started with 10 mg of Predisione daily when I went from 8 to 7 daily, my symptoms in the morning are un bearable until I take the 7 around 10 am and by noon felling better. But lately the weakness and stiffness is also in my swollen hands and fingers which are new. By noon can bend fingers without much difficulty but still swollen.

I am curious if anyone else developed pmr shortly after being diagnosed and treated for lyme disease.

Has any one tried ldn?

My recent flare up now presents as bi-lateral Dactilytis (sausage fingers). Very painful at times, unable to make a fist and often unable to use my hands. I understand it is another auto immune response and dactilytis alone does not show up as increased inflammatory markers. Ice, gentle mobility exercises and compression gloves have helped me. Let your doctor know…💞

New Member
I am a 70 yr. old male, I was diagnosed with PMR in Feb. 2021 and started 20 mg prednisone for about 5 weeks and on March 10th my Rheumy dropped me to 15 mg. He has me take my dose at bedtime (about 10:30 pm for me) to help with morning pain. When i was on 20 my pain was low perhaps a 1-2 on a 10 scale and mostly in my hands/shoulders/pelvis. After a few days on the 15 mg my pain began to get worse by the day in the evenings. I would say went a 4 level in my knees, shoulders and pelvis along with my hands. Doc put me back to 17.5 and then tapered a bit slower. In July I started taking my daily dose at 7:00 a..m.

Doc has me taking a multivitamin and glucosamine as well as a Calcium/vitamin D3 supplement. I bought some Mag glycinate for the cramps and it seemed to help.

Today I am down to 5mg and I still have some early morning pain and pain when I stand after sitting for a bit. Pain in my hands is gone and shoulder pain is reduced, but I still have pain in the pelvic/hip area especially bad (level 7-8) if I try to stoop down low. Pain is in the 2-4 range typically and occasionally I take arthritis strength tylenol. Pain gets a little worse at the beginning of a new lower dose.

My experience with the prednisone is that it starts helping a lot about 2 hours after I take the dose and I feel pretty good for about 12 hours and then it seems to wear off slowly for 3-4 hours. Pain slightly elevated at bedtime.

Most days I walk 2-3 miles. i can tell I don't have the same energy level I had prior to PMR. My brain is frequently a bit foggy, not sure if age or PMR related. Anyway that is my story so far in this journey.

Good luck to you all in tapering ,and finding remission.

I find this forum very helpful!
Thanks,
John

Glad to have you join and thanks for the story on your journey. I am going to suggest you take calcium citrate if you are not already doing so. You can do the research on the differences and reasons to take calcium citrate vs calcium carbonate and even discuss with your doctor if needed. I discovered calcium citrate years ago when I traveled on business. Flying dehydrates you and can result is muscle cramps. Calcium citrate provides me with rapid relief from a cramp. I realize everyone is different, but simply wanted to float the idea out there.
I wish I could walk 1 mile, but for now I am content with what I can do. One mile is my current goal.

Thanks jabrown, I will give the calcium citrate a try.