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

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

@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.

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.

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.

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/
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The following is a good overview of polymyositis and it also compares PMR and 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.

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 😊

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 😊

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