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balancing healing therapies, food and drugs during this journey
I'm calling this a journey after 10 months. It started intensely one morning... low back and across hips, and right should so tender I couldn't touch it. The inflammatory response was immediate and I could barely move. My doc ran blood tests and the inflammatory markets were WAY up. He said to try prednisone 10m for a week. Ahh, relief. And the minute I stopped it was back. Ibuprofen helped, so I began takin as little as I could daily, which helped enormously. But the pain started spreading from the top down. First both shoulders & neck, then hips, then knees.
I'm a holistic healer, so I started trying everything I knew about foods and lifestyle. Taking electrolytes actually helped. I switched to pure coconut water and continue daily, it's inexpensive and has lots of magnesium and potassium naturally. I began an anti-inflammatory diet and cut out coffee because I was afraid of the ibuprofen bothering my stomach. Fresh foods, as little processed as possible.
But the pain continued. Some days terrible and I could barely move. Sometimes at night I'd get up and take a hot shower and it worked. Other time, cold water on my joints worked better. Some days were pretty good and I'd get hopeful. But a lot of fatigue from interrupted sleep. I'm 71 so I was grateful that I didn't have a job to get to and could nap if I needed.
I also found morning qi gong exercises (on you tube) quite helpful to get me moving. I alternate some yoga, fascia stretching and only played an hour of pickleball when I felt able. Walked daily. I'm also a Reiki master/practitioner and when I would do a treatment on myself in the middle of the night when I hurt. Many times the Reiki energy would relieve my pain and I'd sleep.
It had been almost 2 months, I did tons of reading (as I'm sure everyone does) and I asked my doc to test for Lyme, Lupus, Rheumatoid, and a few others. (he had no suggestions at this point other than an inflammatory response can last quite awhile but usually goes away!). All my blood tests were negative and the inflammatory markers a bit lower, but my thyroid off. Thyroid meds adjusted. (I do a compounded thyroid, as the pharmaceutical versions mess up my stomach because of the binders they use!). He then suggested Meloxicam, which I started.
The meloxicam kicked in and although I wasn't pain free, it was much better and tolerable. Then I realized I was getting numbing and tingling in my hands and feet. It freaked me out, so I stopped Meloxicam and went back to Ibuprofen.
Then the pain moved into my muscles, mostly my hips and thighs!
We had recently moved from the high desert of New Mexico to Central Illinois. Maybe a reaction from the environment? Again I asked my doc for more tests.... regional allergens among others. All Negative.
So he suggested x-rays for osteoarthritis ... my shoulders and knees looks super healthy. That wasn't it either. At this point, even without a diagnosis of arthritis, he finally referred me to a Rheumatologist. But I couldn't get in for 2 months. So I worked with a nutritionist/kineseologist. He looked at the whole picture and found a lot of other things. Progesterone cream has stopped night time hot flashes. He upped my Vit D/K2, added Fish oils, and a balanced Vit B. Natural sleep aids. And a parasite cleanse (natural herbs) as parasites can end up in the muscles, not just the gut. I eat as little sugar as possible. I started feeling better but was still taking Ibuprofen when the inflammation started to build.
My fatigue was much better, pain levels lower but some days would flare. I decided to keep the rheumatologist appt.
FINALLY, after 10 months it only took this new Dr. 20 minutes of questions and looking at labs to diagnose me with PRM. He explained all the possible side effect, which terrify me. But I went on the 10mg prednisone he suggested. It took about a week, to be almost pain free. I realized my energy is back, my mood is definitely lifted. I'm glad I was already started on the vitamins that will help support my bones. And he knows I want to taper as soon as I can. It's been a month now.
I'm also dedicated to daily meditation, reiki treatments, getting more massages, clean eating, journaling and practicing gratitude. I've worked with clients for many years and know that our body holds patterns of pain and need trauma release. At 71, I thought I'd done a lot of this work, but I'm still digging emotionally having faith that my body will release and heal. As a holistic practitioner I realized I took this as a "failure". I now realize it's another life lesson ... about me, about the medical profession, and about our environment. I came from clean air of Santa Fe, where healthy food and open markets are a way of living, well water and sunshine are abundant. Where I live now I'm surrounded by cornfields where pesticides are sprayed regularly, There are no fresh food markets ... only chain grocery stores. I have found one farmer who doesn't spray and sells from a stand.
PRM seems to be unknown to many people, even doctors! It usually hits older people, over 65. I just wonder that as we get older if our bodies just can't fight the toxicity that now surrounds us... our environment, our food, our fabrics. I'd be interested to see if there's PRM in other countries where it's cleaner. And shame on those people who say joint pain & fatigue is just aging.
I truly believe I'll eventually get off the drugs and hope that with all the other things I'm doing I'll avoid the side effects of prednisone.
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@kjoed53 Virus's can trigger autoimmune diseases. I had a mild case of Covid and not long after developed GCA. The cases of GCA escalated during Covid so I see a strong connection. No one in my family has this, we never even heard of it. The one thing we do have is longevity. The women live into their hundreds. My Aunt (90 yrs) old has PMR but she's not blood related, her husband is married to my moms brother. She has been on a maintenance dose of 4 mgs of Prednisone for 20 years and doing well. She's always been active and just recently decided to slow down selling the house and moving into a beautiful apartment in a semi retirement community that provides meals and transportation but she's not ready to give up driving. I never expected this in retirement having been healthy all my life. It's like my mom always says, (she's 92) old age isn't for sissy's. 😂
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4 Reactions@kobellava
Thanks for sharing! I was told at the ER that vertigo follows a virus and is considered a trigger. As viruses go, covid has proved itself to be severely detrimental to our immune system. My sister may have had covid before her PMR because she had it twice, but I can't remember. My mom lived to 101, and probably would have lived longer if not for a serious fall that severely bruised her hip without breaking it, and the stroke that followed shortly afterwards. Maybe I'll benefit from the genes she passed on to me. She lived much longer than anyone else in the family though. Cancer doesn't just run in my family, it gallops, and on both sides. I may be following that trend as I was recently diagnosed with SMM in addition to PMR.
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3 Reactions@kjoed53 First I want to correct that my Aunt is married to my moms brother, not whatever I said in that post 😂 Your mom had a good long life and the chances are great that you will too! I've read about SMM and sometimes it advances but many times it doesn't, that's comforting news. My husbands siblings have all passed from cancer including his twin at age 60. He will be 70 next week and although he has health issues cancer isn't one of them. I think that Covid virus has wreaked havoc in a lot of people lives from reading other peoples stories on other forums. I'm sorry both you and your sister are dealing with PMR and I feel we'll get through these challenges, looks to be a lifetime battle for both PMR and GCA but my Aunt has done well. She won't be going to Guatemala to help the people anymore but at 90 she needs to relax! Wishing you all the best in your journey!
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3 Reactions@kjoed53 Yes. I think you have a good take on it. I tend to agree.
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2 ReactionsI did not get COVID-19, but I did get the initial double-vaccination in the beginning, and then 4 follow-up vaccinates when recommended by my insurance company and pharmacy. I believe in the importance of vaccines having grown up during polio, measles, mumps etc. I do wonder (even though the follow-up vaccinations were for different strains and mutations of the COVID virus) if it was just too much and PMR was triggered by too much of that similar vaccine.
@wendypics I am now on 0.5mg/day of Prednisine; I tapered down from 1mg/day just last week. I am also taking 200mg of Kevzara (self-injection) every 2-weeks, since mid-to-late January this year, 2026.
I told my PCP of 25 years, that I couldn’t sleep on Prednisone (40mg/day, originally) and he prescribed a sleep aid (Temazepam 30mg/evening, before bedtime. It works for me. He said it was less addictive long term than other options. I took it every night for 7 months during my taper. When I got down to below 5mg/day of Prednisone, I reduced the Temazepam to 15mg/night, for one month, and I easily stopped the Temazepam sleep-aid entirely when I tapered the Prednisone to below 2mg/day.
I’m still getting 8 hours of sleep every night. Once or twice a week, I’ll only get 6-7 hours of sleep, but I make myself stay in bed at least another thirty minutes on those mornings.
I wondered if I would have a difficult time omitting the sleep-aid, but my doctor was right saying it wasn’t very addictive. Perhaps, part of it is that I pretty much exhaust myself physically by the end of the day.
My wife (coincidently named Wendy) has been out of town the past three weeks, and that has helped me keep a steady schedule. Don’t tell her I said that.
@stonewheel I don't know if we'll ever get the truth about the vaccines. My husband had a terrible reaction to the 2nd one and was told not to take anymore. I had both shots but decided not to do follow ups. But I also got covid and was really sick.. so who knows if covid or the vaccines weaken us and the PRM comes on. No on in my family has ever had this. I'm just grateful the doc finally figured it out and now at least I have a plan and ma feeling better. Thanks for you comments.
I have to reassure myself sometimes that PMR was around long before COVID and the COVID vaccines. But, PMR does seem to be triggered by something. That something could be COVID, or a COVID vaccine is some cases. Just like stress can trigger PMR in other cases.
No one in my family either.
I hope you husband has recovered fully.
It took my cardiologist ten minutes to dx me. my inflammatory markers are high but not high enough for rheumatology to take me on as a patient. So, I dove in and did my research with my dr and she said she will treat me. I’m in low dose 5 mg of prednisone after a 10 mg full dose. Hopefully I’m at beginning stage but alas the info from this group gives me hope, concern and comfort that I am not crazy.
Bloodwork is different from clinical presentations
Nice that u were quickly diagnosed. I only had a pcp and never had other issues so he thought it was an inflammatory "episode" that would resolve more quickly. Encouraging that you were able to lower your dose... that's what I'm hoping for. Thanks for sharing