balancing healing therapies, food and drugs during this journey

Posted by wendypics @wendypics, 2 days ago

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.

Interested in more discussions like this? Go to the Polymyalgia Rheumatica (PMR) Support Group.

wendypics@wendypics
I am kinda lost for words here. The picture painted of Santa Fe is Shangri-la like. I am assuming you developed pmr after leaving New Mexico. And that leaves me to wonder how much pmr exists in New Mexico.
Your journey is very unique, much food for thought.
I moved to a rural area, supposedly fresher air, 25 years ago and still developed pmr at age 70. There is a direct relationship between pmr and aging. Are genes or is the environment to blame?
I wish you well in your healing.

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@wendypics Hi. It sounds (reads) like you’re doing everything right. Yes, it’s a journey. Several of us refer to it as such.

Relief starting at 10mg of Prednisone per day is really good, for any body weight.

While I’ve not experienced Reiki in a professional setting, I more than appreciate good massage therapy. Both machine and of course human.

I view food as ammunition and my diet is strictly based on what is good for me. Taste has little relevance. Results are the reward. My wife keeps asking me if I like those foods. I just grin and reply that I do now.

I drink a lot of water everyday. Stay hydrated and flush toxins.

I’m a big believer in cardiovascular, in combination with the diet and supplements. My thinking is that the more times per day that I can get those nutrients and oxygen to each and every cell in my body, while also rapidly removing waste and toxins from each cell, the healthier I am and the sooner this journey will be over. There are other journeys that I’d like to do, like my Bucketlist.

Because Prednisine can cause bone loss, I’ve added a more focused regimen of resistance exercise which immediately follows my cardiovascular, which I forgot to mention immediately follows a cycle of long intense stretching.
Muscles and joints.

Equally important as everything else, is sleep. Good sound sleep. 8-9 hours, every 24 hours. 7-8 is better than nothing, but sleep is crucial. It is when our bodies repair and heal.

You probably know all this, but I thought I’d throw it out there.
Thanks for your post. Please keep us informed and keep sharing your journey. I want the best for you and wish you the best.

REPLY
Profile picture for pmrsuzie @pmrsuzie

wendypics@wendypics
I am kinda lost for words here. The picture painted of Santa Fe is Shangri-la like. I am assuming you developed pmr after leaving New Mexico. And that leaves me to wonder how much pmr exists in New Mexico.
Your journey is very unique, much food for thought.
I moved to a rural area, supposedly fresher air, 25 years ago and still developed pmr at age 70. There is a direct relationship between pmr and aging. Are genes or is the environment to blame?
I wish you well in your healing.

Jump to this post

@pmrsuzie

“Are genes or is the environment to blame?”

The million dollar question.

I used to teach to my students that mutation is a force of nature. It is a built in survival requirement. Most of the time it has negative consequences. But, sometimes, rarely, it is beneficial to the species and promotes survival. That is its purpose. And, the species survives.

I know it is hard to view PMR as anything but negative, physically.
Mentally, it certainly fosters humility. And for some, there may be a final positive physical result.

Best wishes.

REPLY

I believe there's a genetic factor to PMR. My younger sister had it a few years before I did. I also think covid has something to do with it. I developed vertigo, then PMR and now SMM all after a bout with covid last summer. Finally, our immune system takes a beating during our life and so I think as we age it becomes less efficient. Maybe it's just a perfect storm.

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No matter where we live there is no magic bullet to counter the effects of aging or the effects of our DNA that determine how we respond to our physical wellbeing. We have to listen to our bodies and nourish and treat them with respect to give us the best service for the healthiest outcome until the end.
Knowledge is power, which has helped through my PMR journey.

REPLY

There is definitely a genetic component. PMR and GCA are the most common in people from Scandinavia and northern Europe and their descendants. I have PMR and GCA, and my genetic test said I was 90 percent from the UK, and 9 percent Scandinavian.

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I was diagnosed quickly with PMR because there is a family history of it.
My Mother was Norwegian and my DNA says I’m 60%. I had fibromyalgia in my 40’s and now at age 78 PMR. Started on Prednisone 8 months ago. . Currently have tapered to 2 mg but am starting to realize more discomfort and may have to slow the process down . I think age + genetics play a big part.

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Profile picture for stonewheel @stonewheel

@pmrsuzie

“Are genes or is the environment to blame?”

The million dollar question.

I used to teach to my students that mutation is a force of nature. It is a built in survival requirement. Most of the time it has negative consequences. But, sometimes, rarely, it is beneficial to the species and promotes survival. That is its purpose. And, the species survives.

I know it is hard to view PMR as anything but negative, physically.
Mentally, it certainly fosters humility. And for some, there may be a final positive physical result.

Best wishes.

Jump to this post

@stonewheel it's funny, my docs never mentioned genetics. I like your positive outlook

REPLY
Profile picture for stonewheel @stonewheel

@wendypics Hi. It sounds (reads) like you’re doing everything right. Yes, it’s a journey. Several of us refer to it as such.

Relief starting at 10mg of Prednisone per day is really good, for any body weight.

While I’ve not experienced Reiki in a professional setting, I more than appreciate good massage therapy. Both machine and of course human.

I view food as ammunition and my diet is strictly based on what is good for me. Taste has little relevance. Results are the reward. My wife keeps asking me if I like those foods. I just grin and reply that I do now.

I drink a lot of water everyday. Stay hydrated and flush toxins.

I’m a big believer in cardiovascular, in combination with the diet and supplements. My thinking is that the more times per day that I can get those nutrients and oxygen to each and every cell in my body, while also rapidly removing waste and toxins from each cell, the healthier I am and the sooner this journey will be over. There are other journeys that I’d like to do, like my Bucketlist.

Because Prednisine can cause bone loss, I’ve added a more focused regimen of resistance exercise which immediately follows my cardiovascular, which I forgot to mention immediately follows a cycle of long intense stretching.
Muscles and joints.

Equally important as everything else, is sleep. Good sound sleep. 8-9 hours, every 24 hours. 7-8 is better than nothing, but sleep is crucial. It is when our bodies repair and heal.

You probably know all this, but I thought I’d throw it out there.
Thanks for your post. Please keep us informed and keep sharing your journey. I want the best for you and wish you the best.

Jump to this post

@stonewheel thank you for writing. I really like everything you said. I'm wondering, are you on prednisone now?
I'm so frustrated that I can't ever get 8 to 9 hours of sleep. Occasionally, I'll get six straight, but not often. I do stay in bed at least eight hours so even though I wake quite frequently, I hope the rest helps my body.
Strength training and resistance training are new to me so I'm just getting started. I'm lacking in discipline when it comes to getting to the gym for that, but I'm working on it.

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Profile picture for jeff97 @jeff97

There is definitely a genetic component. PMR and GCA are the most common in people from Scandinavia and northern Europe and their descendants. I have PMR and GCA, and my genetic test said I was 90 percent from the UK, and 9 percent Scandinavian.

Jump to this post

@jeff97
I must be the exception to the rule… my ancestry is from Asia Minor. I guess it’s not improbable that I could have genes from the parts of the world of people who are more susceptible to PMR but I’ve never had an ancestral analysis done.
All I know is that my mother had it and that is my genetic link.
I suppose that centuries ago people may have migrated to Asia Minor from those countries. And I am more light skinned compared to others in my culture… so who knows?🤷🏻‍♀️

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