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.

Self diagnosed PMR and got my PCP to write me an order for Prednisone, because can't see my Rheumy till next Friday. Started on the Prednisone and was 60% better by the next morning. Confused because both my C-Reactive protein and Sed rate were normal. How can this be? I had pain in every muscle group. Look forward to my appt on Friday and see what she says.

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@notacopy

Self diagnosed PMR and got my PCP to write me an order for Prednisone, because can't see my Rheumy till next Friday. Started on the Prednisone and was 60% better by the next morning. Confused because both my C-Reactive protein and Sed rate were normal. How can this be? I had pain in every muscle group. Look forward to my appt on Friday and see what she says.

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Not all that surprising. While the sed rate and c-reactive protein are excellent indicators of PMR, they are not absolute. Almost weekly I read on this forum and another forum from people who have the same circumstance as you. The hard part is sometimes the person has a doctor or rheumy who insists it can't be PMR because these markers are normal. It absolutely can be.

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@jiminmich

Good morning
A little over a month into prednisone currently at 15mg and all is OK, except the weirdness my body feels.
Question: I have an insect bite sight are that doesn't seem to be healing with normal treatments and time. Redness an some heat associated to the area after a week...so I thinking the prednisone has diminished my body's abilities to heal normally.
My guess I probably need a antibiotic to assist? Just another path perhaps someone's been down or maybe will soon.
Sleep duration has lessen, currently between 5 and 6 hour and feel rested and not needing to return to bed..
Hope everyone has a great weekend, the fall colors here are still pretty vibrant and pleasing to the eye. Best wishes to all.

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Good Morning crew,
I think this system is a sorry excuse for a Broke Back Health Care system. Not putting you folks down, whom are willingly gave up your time to help another old soul on the path going no where health care treadmill. Been waiting for nearly six weeks to hear from the RHEUMATOLOGIST. These folks don't have the time or the decency to call and say find another avenue. Hay I, Just want to confirm what I have and tell me what I have to do to navigate this journey of a old persons Affection. Yep I still have enough brain sense to be Pissed Off.
Thank you all for your advise and concerns and suggested treatment for which I believe was probably a Spider bite. It actually appeared to be a creator when the blister was broken. The heat in the area has subsided, so that's a better place. Been waiting to hear from my nurse navigator all weekend but they to are on the Covid Standard Time, of what appears to be a less than a 5 day week schedule?? For antibiotics scrip. Yep I dare you, don't ever require treatment on the weekend. HOW DID WE GET TO SUCH A DARK PLACE ? That said, Thank you all so much to all whom have contributed.
Back to PMR still on the 15mg of the prednisone and holding till the next reduction and doing ok, because no pain and I actually have a portion of my simple old person life back I actually have a spark of ambition again. But not doing very well on the sleep side of thing 6 hours tops. Blood pressures are a bit high in the am and low in the late evenings, ranges 132/83 thru 98/66 but that said my pause is 10% higher running primarily in the mid 80tys.
So has anyone heard the phrase (dead man walking) is a good analogy from where the journey begun. If we ran our business like this system we would have been bankrupt long ago, kinda like our country, (right)?
Hope everyone has been able to enjoy the fall colors and moderate temperatures, but like all good things coming to the end as mother nature gave us a pretty hard frost last night, 30 as I awaken this morning. Have a blessed week. Please excuse spelling and grammar as my mind was adrift back in the day at school.

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@raven1955

Not all that surprising. While the sed rate and c-reactive protein are excellent indicators of PMR, they are not absolute. Almost weekly I read on this forum and another forum from people who have the same circumstance as you. The hard part is sometimes the person has a doctor or rheumy who insists it can't be PMR because these markers are normal. It absolutely can be.

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Thanks! And the speed at which I'm recovering to me is a pretty clear indication that it's PMR. Also the suddeness and intensity with which it first appeared.

Thank you all for being here.

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@johnbishop

@jiminmich, Is the red area around the insect bite growing bigger? You might want to use a pen or marker on the edges of the red area to see if it's getting bigger which might mean an infection and require an antibiotic or treatment. I would definitely talk to my doctor if the red area is getting larger. I've used Neosporin on insect bites and cat scratches and it seems to help.

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Thanks so much was able to get started on the oral antibiotics this evening.

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@johnbishop

@jiminmich, Is the red area around the insect bite growing bigger? You might want to use a pen or marker on the edges of the red area to see if it's getting bigger which might mean an infection and require an antibiotic or treatment. I would definitely talk to my doctor if the red area is getting larger. I've used Neosporin on insect bites and cat scratches and it seems to help.

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Thank you for the information and concerns. Was able to start on oral Antibiotics this eve.

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@freeme

If it continues and starts spreading, you could be developing cellulitis which is a very urgent matter and needs to be treated with oral antibiotics asap.

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Thank so much currently on oral antibiotics this eveening.

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Up at 3am again 2 days in a row, lol.
On 12mg pred now taking 4.5 mg LDN and Plaquenil.
Funny, my PMR also started with a hamstring tear last Dec, (great long , strong hamstrings I have), the inflammation spread up my entire leg and glutes, and it took a month to heal. I blame too much pickleball. Classic PMR hit weeks later.

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@notacopy

Thanks! And the speed at which I'm recovering to me is a pretty clear indication that it's PMR. Also the suddeness and intensity with which it first appeared.

Thank you all for being here.

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Up to 20% of PMR patients do not have elevated markers. I am one of them. My PMR hit a year ago July. My CRP started slowly elevating only recently and I have now been diagnosed with GCA. Even with GCA my CRP is only a little over the normal range. But I was diagnosed by temporal biopsy that showed giant cells, as I had symptoms. Everyone’s body is different. It’s too bad the doctors often tend to go by the average and not the span of humanity.

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Physical therapy on my biceps almost set me back and gave me a mini flare. I asked my GP for a referral for my knees but the referral was for general PMR symptoms. 🤷‍♀️ ..l convinced my P.Therapist to just help me to strengthen my knees and surrounding muscles.
Much better now. At the beginning of my diagnosis 9 months ago I had to hold off on my water aerobics for a couple of months. I had lots of intermittent fatigue and needed to rest. Slowly 🐌 and steadily my strength has increased. I hike...but sometimes I'll tell my husband " I've got about 20 more minutes till I poop-out" I'm back at water arobics three times a week again. I'm down from 20 mg of prednisone to 6 mg My functional doctor combined my prednisone with LDN Which helps make the tapering process easier.
I now feel hopeful for the future. Slow and steady is my motto. My doctor also recommended trying something like the Terry Whals. Protocol.
I recently discovered I have SIBO So I'm on an even more restrictive diet at the moment. But I basically have no more pain only a little bit in the morning. **I forgot to mention that I split my dose. I have most of it in the morning and 1 mg of prednisone before I go to bed at night so that I get a good night sleep and wake up without any pain, mostly.

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