3 1/2 years of chronic pain~ Still looking for solutions~please help » Mayo Clinic Connect (2024)

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.