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

Wow. Lots going on. You will find most of us spent considerable time trying to figure out what was wrong. Orthopedics, xrays, Dr appts, PA appts. Just about anything and they all take time. Meanwhile your pain is driving you nuts. Their is also a site on facebook with lots of information. The medical field has not been the best at diagnosing. Not sure of your age but if your younger than 50 they will rule it out. Even if thats not true. The two inflammation markers that most have is CRP and sed rate. However not everyone has those markers. Eventually the diagnosis may come down to the fact whether prednisone fixes it. Your PA or family Dr may be able to help at first but they will want a rheumatologist to diagnosis. Newer drugs like Kevzara target the IL-6 and help with inflammation. I had my PA run all the blood tests. They will want to run lots of stuff to rule out what it is not. I can send you a list of items I asked for. I got the list off the facebook page. The journey down the prednisone trail can be difficult to come off of. But it does stop the pain.

If you have seen multiple specialists such as a rheumatologist and endocrinologist I assume you have had an adequate trial of prednisone therapy.
Have the infectious disease doctors had you consult an immunologist
to see if you an immunodeficiency as well.?

Hi Kate @nowforyou, Sorry to hear you are still struggling to get a diagnosis. There are quite a few conditions that mimic PMR and share similar symptoms. Here's an article that might shed some light.
--- Diseases that mimic polymyalgia rheumatica (PMR): https://www.medicalnewstoday.com/articles/diseases-that-mimic-polymyalgia-rheumatica.

You are not alone and there are several discussions where members have questions similar to yours that you might want to scan through to see if any are the same.
--- Questioning PMR diagnosis: https://connect.mayoclinic.org/discussion/questioning-pmr-diagnosis/
--- Any difficulty in diagnosis of PMR?: https://connect.mayoclinic.org/discussion/any-difficulty-in-diagnosis-of-pmr/
--- Was I properly diagnosed with PMR?: https://connect.mayoclinic.org/discussion/was-i-properly-diagnosed-with-pmr/
--- Do I really have PMR?: https://connect.mayoclinic.org/discussion/so-i-really-have-pmr/

You might also find this YouTube video helpful.
--- Polymyalgia Rheumatica: A Rheumatologist explains:

I can’t add much, except that I had similar symptoms years ago when in my 40’s. Much pain and muscle weakness, 2 frozen shoulders at same time, stiff leg muscles, stubborn muscle knot in back, etc.

All happened within 1-2 years. Saw neurologist, rheumatologist, orthopedist, primary, endocrinologist, etc. Rheumatologist finally, after viewing tests results, labs, EMG, MRI, etc. wrote that it appeared to be PMR, except I was too young. She was stumped, as were the other doctors. So, I got cortisone injections into the areas, except not in my legs. Got PT, trigger point therapy, heat therapy, electrical stimulation, and eventually I improved. Pain pills didn’t help nor muscle relaxers. No oral steroids.

It hasn’t returned, thank goodness. I have various issues now…some from long covid, but not like the PMR symptoms. Last year I had ITBS, but it cleared. And, I just got over tennis elbow. I’m working out every day, so hope to keep things working well.

I hope you find something that helps. Have you explored getting treatment to settle things down?

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

Good morning,
I'll try not to duplicate my responses and answers within this thread. So thankful that so many people responded! Thank you for your response as well. Yes, I have seen several specialists and rheumatologists and endocrinologist, but I have not had a trial of prednisone therapy. The only type of steroid I'm on right now is the hydrocortisone for the adrenal insufficiency. From everything I've been reading, I'm pretty apprehensive going on prednisone therapy. It's scary. I'm having enough reactions and negative side effects just from the hydrocortisone. And they said that the insufficient adrenal gland is most likely due to the steroid injections of prednisone, so I'm doubly apprehensive having more prednisone.

No, no one has suggested any referrals to any doctors. I've had to be very proactive to get those appointments. It's unbelievable and the health care system is so broken here. I will check with getting an immunologist referral when I speak with my MD on Wednesday.

Thanks again and good luck to you!

Good morning John,

Wow, I am beside myself with the amount of information You have sent, thank you so very much! I've opened up every single one of your links and videos into separate tabs and I will watch them and read the information before my appointment Wednesday.

Thanks again for everything you do on this website and your volunteer mentoring.
Kate

Good morning Celia,
Thank you so much for your response and information and all of the details regarding your symptoms and situation. It sounds incredibly difficult. I am so happy for you that you were able to find relief for most of the symptoms through your cortisone injections.

It sounds like I have had a similar journey. And I have to also add that I did see two different cardiologists after going off of simvastatin, and they did a calcium score scan which concluded that there's no reason for me to be on a Stantin in the first place. There is nothing in my arteries at all. It's high cholesterol, but he said I'm protected by the good high cholesterol. I've always had high cholesterol, even when I was a vegetarian.

You gave me some good ideas, I've never had an EMG which I'm trying to have done, because my daughter has a very serious neuromuscular disorder called charcot Marie tooth. 36 years ago they said it was not hereditary because they tested me with an EMG. I don't think that what I have now is that but I'm trying to get into a neuromuscular doctor here at the University of New Mexico but it's an 11-month wait! And they won't pay for me to go to Mayo Clinic out of state. It's just awful, waiting and being in pain like this and trying to be proactive and figure out everything on your own.

Thank you, I did have trigger point therapy with saline, lidocaine, as well as cortisone but those didn't really help. I've also tried the TENS unit and pain pills and muscle relaxers, and those did not help either.
The prednisone epidurals into my back helped but only with the hip pain and the relief lasted a couple months.

I'm very leery of going on oral steroids. So many issues with my adrenal gland now that they just want to give me more steroids for when they said that the insufficient adrenal gland is most likely due to being on steroid injection therapy.

Thank you so much for your help and your insight and I hope you have continued relief on your journey!
Kate 😊

My recent issues, though I’m not sure of cause, were best treated with PT and dry needling. There’s a fair amount of discussion about it on this site.

@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.