1. < Polymyalgia Rheumatica (PMR)

3 1/2 years of chronic pain~ Still looking for solutions~please help

Posted by nowforyou @nowforyou, May 19 12:18pm

Do I have Polymyalgia Rheumatica (PMR)???
Please help if you can...

I was researching Mayo and came across the support groups. I posted on a muscle ache group and someone directed me to this PMR group. I have not heard of PMR before.

I have been fighting symptoms of chronic pain for 3 1/2 years now. Started out of the blue in Jan of 2021 after being SO active in 2020 and walking/hiking 2400 miles. Pain started about the 3rd week of Jan. 2021. Stayed on the couch with heating pad for weeks.

I hurt so bad in my muscles in my neck, shoulders, shoulder blades, mid back, and for the last 2 years, my right arm. (shocks and electrical impulses run down my arm-diagnosed as "frozen shoulder." I have had about 12 or so injections of predisone into my back, shoulders, neck, arm, and hips as well as 4 epidurals into my L5-S1 area of my spine to help with the hip pain. I cannot sleep on my sides anymore for several years. Now diagnosed with sleep apnea because the tissue has "relaxed in the back of my throat." I cannot sit in one place for more than an hour otherwise my muscles ache and burn so badly. I have to pull my arms and shoulders back all the time to try to "reset" the pain. Sometimes, it seems like I cannot possibly hold my head up any more on its own.

For over 3 years, I have had PT, accupuncture, 3 types of trigger point therapy, continous Chiropractic care, xrays of hips and back and neck, heat, cold, natural herbs and remedies, I do yoga 3 times a week, and recently, trying to combat all this pain on my own and losing faith in our doctors, I started weights and eliptical 3 times a week. Also, just to confuse things more, I have had full blown VIRAL Meningitis 9 times since 1986. Each time was confirmed with a spinal tap, and blood work. In hospital for a few days. Can't even get into the infectious disease clinics in our area to try to finally find out why this is happening, so I do not have to go through that anymore.

I have had so many blood tests done. The only one abnormal was the CK 1 month after going off Simvastin. And then my Cortisol level a month ago (see below).

Finally thought of the correlation of myalgia after 7 months on Simvastatin, then discontinued the statin in March of 2021. At that point, finally a CK level was drawn, after one month of being off the statin, and the CK was still elevated.

Now, I still have pain, still have complications of not using my muscles from being in so much pain, and now, have an insufficient Adrenal gland, or Addison's because of the sterioid injections into muscles and hips I received to help alleviate the pain somewhat. The endocrinologist I saw 2 times finally ran some bloodwork and did the "Gold standard" test, ACTH/Cortisol and my cortisol came back extremely low, and even lowered during the test after receiving the IV ACTH. 3.9 and it should be at least 18. The doctor used strong language with me as to how serious this is and that I should go on hydrocortisone daily, however, it does have serious side effects such as diabetes, HBP and weight gain, and that once I have been on it for 2 weeks, I would would have to be on it for life. I went to my PCP and had a 2nd opinion and weighed my options, and couldn't afford natural medicine, and was denied going to Mayo to get to the bottom of this, so after 10 days, finally went on the hydocortisone. One month later, I am self-tapering off the hydrocortisone and going to Zoom with my PC in 3 days. I asked the endocrinologist if we could do a CT scan of the adrenal gland, and she said this is not customary. I have since been told by others, to GET a scan and that one should be done before meds are taken, but that perhaps insurance won't pay, and that's why doc's are saying to just go on hydrocortisone.

I am chasing diagnoses and being farmed out for my care and doctors are not owning it. I am ready to give up again. I get close to giving up after rejection after rejection of my appeal of a referral I got to Mayo in AZ, but insurance won't cover it, even though it will be 11 months before I can see a Neuromuscular specialist where I live in NM. I do not feel that is a reasonable wait.

So much more that I would love to discuss with you and anyone else with similar symptoms. I also had COVID in December, 2023, and a really strange "virus attack my lungs" in November, 2021. Couldn't breathe and was put on oxygen and nebulizer for a few weeks.

Thank you, thank you, thank you for the help you may possibly give to me. I am at my wits end.
Kate D.

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

tuckerp | @tuckerp | May 20 9:06am
In reply to @nowforyou "Good morning, Thank you so very much for all of the wonderful information. I am going..." + (show)
@nowforyou

Good morning,
Thank you so very much for all of the wonderful information. I am going to be 61 in a few days so I was definitely over 50 when this started 3 and 1/2 years ago.

My CK was high but not off the charts high when they performed the test about a month after going off simvastatin. They have performed a CPK, CK as well as said rates several times over the last few years and they're not out of range anymore.

I have never been on oral prednisone, other than a few months before all this started and I had some sort of virus in my lungs according to the pulmonologist. I couldn't breathe and they had to put me on oxygen, a nebulizer and prednisone for a couple weeks. Never was determined what I had. In light of COVID emerging a few months after that, they now say that it may have been COVID.

It's a tough situation indeed. And I have a lot of respect and empathy for anyone going through this. If I spend too long sitting even by 10 minutes too long, I pay for it for the rest of the day.

Hopefully I will be able to get some answers this Wednesday when I speak with my MD.

Thanks again for all your help! And good luck with your journey.
Kate

Jump to this post

I hope you get help. PMR can also lead to GCA. Swelling of your temporal artery that can cause blindness. Many believe COVID started their PMR. Mine started 2 weeks after the vaccine. Who knows? Doctors have no idea. Stress most likely. My ESR and Sed Rate were not elevated . My HS-CRP was elevated but the Dr would not attribute that to PMR. Point is many do not have any markers. Pain will usually start in one place but moves throughout the body. I could barely move anything by time I started steroids. Xrays and MRI's will show some bursitis. PMR is not considered a muscle wasting disease but lack of activity can be. Be careful of cortisone shots. My orthopedic Dr told me they will eat up the joint. I used dexamethasone as my steroid. Relief in about 4 hrs. You need to start with a fairly high dose to see if it works but quickly taper to where the pain is just manageable. Then continue to try to decrease dosage. The steroids can be worse than the PMR. But they give your life back. I have no experience with newer drugs such as Kevzara. I was able to wean off Dex in 6 months. I have had 2 small flares. but basically pain free the last 2 years. I saw Michael Pham at Phoenix Mayo. John has sent plenty of links but here is another.
Good Luck Mike.
https://www.uspharmacist.com/article/polymyalgia-rheumatica#:~:text=Polymyalgia%20rheumatica%20(PMR)%20is%20an,%2C%20and%2For%20pelvic%20girdle.

REPLY
1 reply
DadCue | @dadcue | May 20 3:35pm

Muscle and joint pain is a symptom of adrenal insufficiency. Hydrocortisone is the preferred treatment but Prednisone will also work.

Myositis would account for the symptoms you are describing.
https://my.clevelandclinic.org/health/diseases/24170-myositis
Muscle weakness in the area of the throat is consistent with myositis. An elevated CK level is also consistent.

Myositis and pulmonary complications are part of the clinical picture too
https://pubmed.ncbi.nlm.nih.gov/20692542/
------------------------------------------------------------------

The following is a good overview of polymyositis and it also compares PMR and polymyositis.
https://www.webmd.com/arthritis/polymyositis
I'm not a doctor but I think you should reconsider steroid treatment. It seems like you will need steroids sooner or later.

"Sometimes, it seems like I cannot possibly hold my head up any more on its own."

You need a thorough evaluation sooner rather than later! Myositis can cause this symptom too but I wouldn't want to speculate about this one.

REPLY
1 reply
nowforyou | @nowforyou | May 21 9:19am
In reply to @kmekate707 "@nowforyou so sorry to hear of the pain you’re enduring. I relate as I don’t have..." + (show)
@kmekate707

@nowforyou so sorry to hear of the pain you’re enduring. I relate as I don’t have a diagnosis and also struggle. I understand wanting to know what it is so you can stop throwing darts at what it may be and get the correct treatment. I lean towards PMR or Epstein Barr virus or Ehlers Danlos. There are three phases of the latter, hypermobile, pain and then stiffness. I also wonder if it’s that we have been floxxed with fluorquinolone classes of antibiotics? Such as ciprofloxacin. We may never know.
My niece has Ehlers and it is a hereditary trait and that antibiotic is like an internal bomb to people with that from what I have I have read. The sudden onset for me in 2014 is what trips me out. I went from being in the gym 5 days a week to unable to get off the couch without pain overnight. Am currently getting my medical records to try and see if I was given that med back then. I will be 53 in August if the Lord’s will. So I was 42ish when this started.

Then again it could be from fluoride in our water or toothpaste or the twice a year fluoride treatments I added at the dentist office not knowing it was a neurotoxin? As frustrating as it is we may never know and it may just be a matter of finding what helps with the pain.

I currently take 6000 mg moringa, an aleve one or twice a week, and stretch really good before getting out of bed and try to stay hydrated. Next week I am trying biomagnestism pairing. Yes, I am desperate. I’ve done the massage, acupuncture, PT, trigger point, hot and cold therapy, psychotherapy, cbd, thc, and a slough of supplements, various exercises, diets, prayer and meditation, you name it. This may just be life for me. Prednisone helps immensely but like you am leery; have only taken a couple one week rounds of it. Don’t want it long term.

Good luck to you! 🤗 hang in there.

Jump to this post

Good morning,
Thank you so much for all of the information. So many similar symptoms for sure. Especially being so active and then not being able to get off the couch almost overnight for me.

I will go back in my records and see if I had been on that class of of antibiotic.
It doesn't sound like Ehlers to me and I think I was tested for Epstein-Barr and it was negative.

I'll definitely look into the other things you mentioned as well. Thank you so much for your help and I hope that you can get some answers as well on your journey.

Good luck to you also!
Kate 😊

REPLY
nowforyou | @nowforyou | May 21 9:24am
In reply to @tuckerp "I hope you get help. PMR can also lead to GCA. Swelling of your temporal artery..." + (show)
@tuckerp

I hope you get help. PMR can also lead to GCA. Swelling of your temporal artery that can cause blindness. Many believe COVID started their PMR. Mine started 2 weeks after the vaccine. Who knows? Doctors have no idea. Stress most likely. My ESR and Sed Rate were not elevated . My HS-CRP was elevated but the Dr would not attribute that to PMR. Point is many do not have any markers. Pain will usually start in one place but moves throughout the body. I could barely move anything by time I started steroids. Xrays and MRI's will show some bursitis. PMR is not considered a muscle wasting disease but lack of activity can be. Be careful of cortisone shots. My orthopedic Dr told me they will eat up the joint. I used dexamethasone as my steroid. Relief in about 4 hrs. You need to start with a fairly high dose to see if it works but quickly taper to where the pain is just manageable. Then continue to try to decrease dosage. The steroids can be worse than the PMR. But they give your life back. I have no experience with newer drugs such as Kevzara. I was able to wean off Dex in 6 months. I have had 2 small flares. but basically pain free the last 2 years. I saw Michael Pham at Phoenix Mayo. John has sent plenty of links but here is another.
Good Luck Mike.
https://www.uspharmacist.com/article/polymyalgia-rheumatica#:~:text=Polymyalgia%20rheumatica%20(PMR)%20is%20an,%2C%20and%2For%20pelvic%20girdle.

Jump to this post

Hello Mike,
Thank you so much for all of your information. I'm so glad that you were specific on the medical tests and symptoms. My ESR and said rate were also not elevated, as well as my CRP. Only my CK.

Glad you have been able to find some relief and that you were able to wean off Dex.

Would be nice to be able to go to Mayo for sure. Doesn't look like that's going to happen for me though after three denials. Waiting 11 months to see my neuromuscular department at UNM. Ugh.

Thanks again and good luck to you on your journey!
Kate 😊

REPLY
1 reply
nowforyou | @nowforyou | May 21 9:30am
In reply to @dadcue "Muscle and joint pain is a symptom of adrenal insufficiency. Hydrocortisone is the preferred treatment but..." + (show)
@dadcue

Muscle and joint pain is a symptom of adrenal insufficiency. Hydrocortisone is the preferred treatment but Prednisone will also work.

Myositis would account for the symptoms you are describing.
https://my.clevelandclinic.org/health/diseases/24170-myositis
Muscle weakness in the area of the throat is consistent with myositis. An elevated CK level is also consistent.

Myositis and pulmonary complications are part of the clinical picture too
https://pubmed.ncbi.nlm.nih.gov/20692542/
------------------------------------------------------------------

The following is a good overview of polymyositis and it also compares PMR and polymyositis.
https://www.webmd.com/arthritis/polymyositis
I'm not a doctor but I think you should reconsider steroid treatment. It seems like you will need steroids sooner or later.

"Sometimes, it seems like I cannot possibly hold my head up any more on its own."

You need a thorough evaluation sooner rather than later! Myositis can cause this symptom too but I wouldn't want to speculate about this one.

Jump to this post

Good morning,
Thanks for the excellent information and website links. This certainly gives me a lot to work with. I've been looking up all of the information you included.

This certainly does lead down a different path.

Makes staying on hydrocortisone seem less scary than going on prednisone for sure.

Thank you so much for putting the time into researching and posting those links, it's so helpful for me and I can imagine from any others as well.

Thanks again.
Kate 😊

REPLY
1 reply
DadCue | @dadcue | May 21 10:08am
In reply to @nowforyou "Good morning, Thanks for the excellent information and website links. This certainly gives me a lot..." + (show)
@nowforyou

Good morning,
Thanks for the excellent information and website links. This certainly gives me a lot to work with. I've been looking up all of the information you included.

This certainly does lead down a different path.

Makes staying on hydrocortisone seem less scary than going on prednisone for sure.

Thank you so much for putting the time into researching and posting those links, it's so helpful for me and I can imagine from any others as well.

Thanks again.
Kate 😊

Jump to this post

"The endocrinologist I saw 2 times finally ran some bloodwork and did the "Gold standard" test, ACTH/Cortisol and my cortisol came back extremely low, and even lowered during the test after receiving the IV ACTH. 3.9 and it should be at least 18. The doctor used strong language with me as to how serious this is and that I should go on hydrocortisone daily."

Frankly ... the thought of you coming off hydrocortisone is extremely scary!!! Don't even think about it. A low cortisol level is extremely dangerous!

I had adrenal insufficiency after long term prednisone use to treat PMR. My endocrinologist recommended hydrocortisone but she said I could stay on prednisone if I wished. Fortunately, my adrenals recovered after some time so I didn't need to take prednisone for the rest of my life.

REPLY
tuckerp | @tuckerp | May 21 12:13pm
In reply to @nowforyou "Hello Mike, Thank you so much for all of your information. I'm so glad that you..." + (show)
@nowforyou

Hello Mike,
Thank you so much for all of your information. I'm so glad that you were specific on the medical tests and symptoms. My ESR and said rate were also not elevated, as well as my CRP. Only my CK.

Glad you have been able to find some relief and that you were able to wean off Dex.

Would be nice to be able to go to Mayo for sure. Doesn't look like that's going to happen for me though after three denials. Waiting 11 months to see my neuromuscular department at UNM. Ugh.

Thanks again and good luck to you on your journey!
Kate 😊

Jump to this post

well. 4 more years and Medicare. Mayo phoenix takes Medicare but not any of the advantage plans. Just FYI.

REPLY
1 reply
nowforyou | @nowforyou | May 21 1:17pm
In reply to @tuckerp "well. 4 more years and Medicare. Mayo phoenix takes Medicare but not any of the advantage..." + (show)
@tuckerp

well. 4 more years and Medicare. Mayo phoenix takes Medicare but not any of the advantage plans. Just FYI.

Jump to this post

Thank you. That's the second time in the past week I heard that about original care paying to go out of the state but the advantage plans do not. I never thought I'd be in this situation I guess when I signed up for the advantage plan.
Thanks again!

REPLY
adrigibby | @adrigibby | May 24 4:43pm

Maybe you should try eating a 0 carb diet like I've been doing for 3 months now to get rid of this awful condition PMR. Anti inflammatory diets work well to treat autoimmune disorders. It does take a few months though.... I eat meat, stakes, chicken thighs, ground beef and eggs. THis way of heating cured my GI issues!! All my gut problems are gone, including fatty liver, after losing 20 pounds in 3 months and I'm now in my ideal weight.

There is much info on Youtube and how to treat autoimmune disorders. My rheumatologist told me, there is no cure for inflammation only prednisone!.. I said no thanks, I'll figure it out. I hope you find a way to heal this awful disease.

REPLY
nowforyou | @nowforyou | May 24 9:06pm

Thank you so much for the helpful information. I'm so happy for you that the zero carb diet is working for you.
None of the doctors have ever suggested anything about an anti-inflammatory diet for me because they don't know what I have. And they keep ruling out autoimmune and anti-inflammatory. I'll see my roomatologist in another week or so and I'm going to see if she can redraw some blood as well as some other tests.
I'm so glad you're able to stay off prednisone. I'm not on it either, but I am on hydrocortisone for my adrenal insufficiency.

Thanks again for all your help and good luck to you.
Kate 😊

REPLY
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