A month into my diagnosis with PMR

Posted by edinnola @edinnola, Sep 21, 2023

Hello everyone. I'm a 59 year old male diagnosed in mid August with PMR. I'm an active guy that played baseball (infield and pitches) twice a week. Im also a RN that walks almost 3-4 miles per shift. I last pitched June 11th, and by June 18th I could barely move. It started in both my hamstrings (which the doc said that they were both torn) and hips, and the pain moved to both my shoulders. Three MRIs, 3 ER visits, and a neuro team consult, plus orthopedic and GP appointments, and everyone was telling me that I'm just getting older and muscle tears happen from overuse at my age. It took almost 2 months of suffering with this before a friend, that's a teammate on my adult baseball team who happens to be a rheumatologist, diagnosed me because he heard I was having problems while he was out of town. I sent him a photo my MRI of my shoulders, and he called and asked what was going on? I told him, and he set up an appointment (New Orleans is where I live). He told me what I have, and he told me to look it up. Every freaking symptom that is listed I was experiencing. As a RN I'm not the best patient. I haven't worked since July because of the pain and not being able to move. I'm better than I was before steriods, but I'm not near where I was prior. Am I ever going to be able to move like previously before? The prednisone is insane...hunger and restlessness.
The photo is from the 1st day I was able to lift my arms over my head after starting the steroids.
My hips are and hamstrings are recovering but my shoulders.
I never heard of this as a nurse of 18 years of practice. Depression is no joke and not being able to lift a gallon of water at times is crazy.
Thank you for letting me vent. I'm not sure if I'm to the acceptance stage yet, I'm trying though.
I'm on 20mg a day and I take a delta-9 gummy to help with the sleep. It seems that 3 AM is a common time waking up from what I have read.
I'm just looking for answers and guidance.
I have just started Physical Therapy 2x a week too.

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

@jiminmich

So far everyone else has written my story or journey with PMR. I get it, those experiences are surely shared.
Thank you

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Hi Gang,
As my mind replenishes its self over night. I'd like to get down to the (HEART OF THE MATTER). What markers, paths, or other health issue to we commonly share? Other being on the Back side of 60 or 70....?
Do we have issues of digestive track disorders or organs not hitting on all cylinders? That perhaps in my simple uneducated mind that may have been responsible for the onset of this
monster we all have in common. Even in light of most of our folks saying they have normal blood test results......but wait a minute my Neutrophilis were at 5.9 since 9/7/22 and still remains on the high side at 5.82 as (6) being the high side marker. How far do we have to be above that threshold before its noticed or perhaps is a factor?
Does have been vaccinated and boosted still had Covid twice during this poor health period.
Is there a non answer that a digestive track disorder may have triggered my immune system to create this imbalance that attacks the muscular skeletal system. Which leaves you with a sense that the, lights are out and nobodies home fog were even the smallest of chores are a mountain to climb. Tiredness and lack of energy seems to prevail. Even simple things become very annoying, that were once just a daily routine.
Well I am in the early stages of treatment, begun with Prednisone about two weeks ago. With an nearly over night recovery, where prior getting out of bed in the morning was a real struggle or just turning over in bed was painful. What possessed my control center to go out of complete control. You get it, enough questions for now. Have a blessed day.

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For those of you looking for a little more information on trying to understand and learn more about PMR, I thought you might find these references helpful:

--- Link to YouTube videos post on PMR at HealthUnlocked
https://healthunlocked.com/pmrgcauk/posts/146562715/you-are-not-alone-a-special-announcement-made-on-behalf-of-jinasc-about-a-very-special-dvd
--- "I suddenly felt I'd aged": a qualitative study of patient experiences of polymyalgia rheumatica (PMR): https://pubmed.ncbi.nlm.nih.gov/25638304/

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@jiminmich

Hi Gang,
As my mind replenishes its self over night. I'd like to get down to the (HEART OF THE MATTER). What markers, paths, or other health issue to we commonly share? Other being on the Back side of 60 or 70....?
Do we have issues of digestive track disorders or organs not hitting on all cylinders? That perhaps in my simple uneducated mind that may have been responsible for the onset of this
monster we all have in common. Even in light of most of our folks saying they have normal blood test results......but wait a minute my Neutrophilis were at 5.9 since 9/7/22 and still remains on the high side at 5.82 as (6) being the high side marker. How far do we have to be above that threshold before its noticed or perhaps is a factor?
Does have been vaccinated and boosted still had Covid twice during this poor health period.
Is there a non answer that a digestive track disorder may have triggered my immune system to create this imbalance that attacks the muscular skeletal system. Which leaves you with a sense that the, lights are out and nobodies home fog were even the smallest of chores are a mountain to climb. Tiredness and lack of energy seems to prevail. Even simple things become very annoying, that were once just a daily routine.
Well I am in the early stages of treatment, begun with Prednisone about two weeks ago. With an nearly over night recovery, where prior getting out of bed in the morning was a real struggle or just turning over in bed was painful. What possessed my control center to go out of complete control. You get it, enough questions for now. Have a blessed day.

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"Well I am in the early stages of treatment, begun with Prednisone about two weeks ago. With a nearly over night recovery, where prior getting out of bed in the morning was a real struggle or just turning over in bed was painful. What possessed my control center to go out of complete control."

I don't know the answers to your questions but I'm at peace with whatever happened. I have read so many theories that it is safe to say that nobody really knows.

Autoimmune disorders can strike at any age so I don't think age explains everything. However, I do think "immune system senescence" has merit.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9261375/
Since PMR/GCA is primarily an age related condition, I think age is a factor for us.

I have another autoimmune condition called "reactive arthritis" which was first diagnosed at the age of 32. This condition derives its name from a reaction to an infection. Clearly age wasn't a factor because I was in my prime.
https://www.mayoclinic.org/diseases-conditions/reactive-arthritis/symptoms-causes/syc-20354838
There are many types of inflammatory arthritis and symptoms overlap with PMR. It is very easy to get misdiagnosed. When I was diagnosed with PMR in addition to reactive arthritis, the pain was the same except perhaps it was more widespread. My response to my rheumatologist when she asked if my muscles or joints hurt was I couldn't differentiate the pain and simply said it hurts everywhere.

A simple explanation that I think explains everything well is summarized with the following:

The body has ways of getting what it needs. I would speculate that PMR is the body's way of saying it needs more cortisol. Cortisol is the "stress hormone" which needs to be produced in response to stress of all types --infections, physical and/or emotional stress are some examples.
https://www.ncbi.nlm.nih.gov/books/NBK534809/
Prednisone is a corticosteroid that supplements the cortisol our body produces. In my way of thinking, PMR is a not so subtle way that the body says "more cortisol please."

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@johnbishop

For those of you looking for a little more information on trying to understand and learn more about PMR, I thought you might find these references helpful:

--- Link to YouTube videos post on PMR at HealthUnlocked
https://healthunlocked.com/pmrgcauk/posts/146562715/you-are-not-alone-a-special-announcement-made-on-behalf-of-jinasc-about-a-very-special-dvd
--- "I suddenly felt I'd aged": a qualitative study of patient experiences of polymyalgia rheumatica (PMR): https://pubmed.ncbi.nlm.nih.gov/25638304/

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Thank you for sharing and concern.
Any information is more than I knew several weeks ago concern this condition, yet astonished there are no definite answers.

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I believe you will get better eventually. For me PmR came on fast and hard. It hurt to roll over in bed and it was a slow painfull process even to get out of bed. As day wore on I could move better. Now 1 yr 9 mos later feeling pretty normal.. just a bit stiff in the AM and have tapered to 2.5 mg predisone. I will be so glad to be off predisone some day....but I've been grateful for its healing power.

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I understand how your feel, I was diagnosed with PMR in June this yr. I was an active person and I am a ultrsound tech. Trying to work Prn, but difficult to do because you never know what each day is going to feel like with the pain. I'm on Predinsone 10mg. 1 a day, and take tramadol about once a day, just so I can function. I do feel better than I did when this all started. My blood work shows inflammation. I know in time this should calm down and go into remission. I still want to do yard work and have my social life again. Good Luck with your treatments.

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@josie20019

I understand how your feel, I was diagnosed with PMR in June this yr. I was an active person and I am a ultrsound tech. Trying to work Prn, but difficult to do because you never know what each day is going to feel like with the pain. I'm on Predinsone 10mg. 1 a day, and take tramadol about once a day, just so I can function. I do feel better than I did when this all started. My blood work shows inflammation. I know in time this should calm down and go into remission. I still want to do yard work and have my social life again. Good Luck with your treatments.

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Again thanking another friend that's has lived the affects of this muscular monster.
So many things unanswered, like vaccinations, really when you can identify the reasons it occurs and be 100% sure the diagnosis is correct.
Thanks again.

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@jiminmich

Again thanking another friend that's has lived the affects of this muscular monster.
So many things unanswered, like vaccinations, really when you can identify the reasons it occurs and be 100% sure the diagnosis is correct.
Thanks again.

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Can't identify reasons why.

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@edwardh

lungranger77, thank you for posting. Apart from relating I particularly found your first sentence about empathy thought provoking..."Not sure yet if the empathy is helping me or feeding into the low lites too much." It is so easy to slip into what the good folks in AA refer to as "the poor me's".

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Thanks for your feedback. Staying objective is certainly the most optimal direction to go. I'm a little challenged in the area of emotional reactivity. For the most part , I'm glad to have joined the Mayo PMR club. The encouragement is awesome.

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@lungranger77

Thanks for your feedback. Staying objective is certainly the most optimal direction to go. I'm a little challenged in the area of emotional reactivity. For the most part , I'm glad to have joined the Mayo PMR club. The encouragement is awesome.

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Good morning,
Am on the reduction plan and begins Friday from 18 to 15 and had started with 20mgs, so it's finding that sweet spot, we probably are hoping to find. Since prednisone at least at this dose my blood pressure is pretty erratic,
High early morning, after my 1 or 2 mile walk it's normal range, mid-afternoon it's pretty much on the low side and I feel like a nap is a good idea. Of course hoping to wake up from that nap....just kidding. Been working, but don't get a lot accomplished. Working on a dose of blood pressure meds to help stabilize that condition. Beginning 3rd week Friday at 15mg. Tails of a journey.

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