Fibro or PMR

Posted by glinda47 @glinda47, Aug 8 8:36am

In Jan of this year, I began to have bi-lateral pain, which began in my thighs and groin, then moved up into my shoulders and upper arms. Very painful. After seeing a rheum and others, though markers were often a bit high, after an US, they weren't convinced I had PMR. When I developed Baker's Cysts, that didn't suggest anything to them. Very painful for me.

My overall condition kept me from working out, heck, I could hardly dress myself, drive, wash my hair, etc. I had been very flexible and in great shape. Within a short time, I was unable to get down on the floor. My mind went to my poor, dearly departed pup who used to walk around in circles in her old age, trying to find a way to lie down with what we assumed to be arthritis. I was doing the same thing.

I can't take steroids so really haven't taken anything besides 1 Advil per night. It takes the edge off, but it caused some tachycardia so I had to stop that. I've had other similar heart issues, so I switched to Tylenol, which does exactly nothing.

I can go for days feeling like I'm on the road to recovery, but then if I do anything, such as walk for 30 min, vacuum, grocery shop and check myself out, a mild tai chi class, I pay dearly.

I might try CBD without THC (can't tolerate) or LDN.
The PA I met with about cannabis suggested I might have fibro. I think she might be right.

I would appreciate any feedback that might help me figure out what's going on and if you've ever tried CBD or LDN with or without success. Details are welcome. I'm also considering acupuncture, but don't want to waste time and money on it. Thank you so much. I'm tired of driving all over the place seeing docs who are rushed, horribly silo'd and unhelpful. It only adds to the pain.

Interested in more discussions like this? Go to the Fibromyalgia Support Group.

glinda47 | @glinda47 | Aug 12 10:33pm

In reply to @2coolbaby "I’m coming to you as someone who has both PMR and Fibro for 15 years! That..." + (show)

@2coolbaby

I’m coming to you as someone who has both PMR and Fibro for 15 years! That was a mess to get figured out and still working on treatments. So realize you can have both and it’s more common than I realized.

One way to tell if you have PMR is… are you stiff in the morning for a while? I mean moving is stuff and slow until you get loosened back up. The bilateral pain in your thighs and upper arms is pretty convincing for PMR. Add in stiffness and you need new Drs if the one you have isn’t diagnosing it for you. Are they a rheumatologist?

Fibro is different. For me, pain is where my body touches something. Lay on my side and my side will hurt for hours or longer. Put my elbow on something for a few minutes and my elbow hurts for hours. I’ve got memory foam covered in a silky microfiber all over furniture in my house as even textured material will cause pain. Anything not very soft does too.

The issue with having both is that their treatments are very different and you won’t know what’s working because you’ll still be in pain unless you treat both!

I have been on prednisone for the PMR for 5 years, but my pain levels went crazy whenever I tried to wean down. My inflammation and sed rate was never normal, but reducing really shot them up. My dr got me on Kevzara injections recently and suddenly my blood tests were normal again and my arm and thigh pain reduced tremendously and morning stiffness was gone. I’ve been reducing my prednisone and hope to be off of it in about 12 weeks.

But suddenly my fibro pain came to the forefront so I’m talking to my rheumatologist about prescribing cymbalta and hoping it works. If you have both, you have to treat both or you’ll still be in pain.

I’m not sure why you can’t take prednisone, which is a first line treatment for PMR, but if it’s a medical reason, then you could possibly get approved for Kevzara as an alternative,

I’ve read that you can have PMR with normal CRP and sed rate in 13% of patients. Maybe stick that number in their face.

I hope you do get help for whatever ails you. I’ve been 15 years of a pain filled life and only recently seeing hope for a much less painful one recently. I hope your journey is much faster than mine was.

Oh and get tested for Lyme disease. I found I had cdc verified Lyme, which is likely what messed up my immune system and started me on this autoimmune disease path. You will never get better if those buggers are floating around and creating havoc!

I also have CFS chronic fatigue syndrome. High dose B1 had done wonders for that. You can Google it. I take 1500 mg a day and it changed my life in that department.

Good luck!

Jump to this post

2cool, thank you for sharing your story. 15 years with not one but two debilitating diseases. I am flabbergasted by your strength and resiliency. You so thoroughly deserve to finally get to a better, more comfortable place. My wish is that you'll go into full remission from both of these disorders. Never give up. I don't think you will.

Thank you for all the info and kind thoughts. From your description, I don't think I have fibro, no pain resulting from touch, just intra-muscular. My shoulders and upper arms still hurt the most, esp the right one which has the rot. cuff overuse issues. The rest of the body, when the Baker's cysts are flaring, for now, is OK. I believe walking 1/2 hr every other day has helped, but who knows?

My very best to you.

covidstinks2023 | @covidstinks2023 | Aug 13 8:04am

In reply to @2coolbaby "For CFS I use high dose B1 and it’s changed my life. Google it." + (show)

2coolbaby, Thank you so much for the recommendation of the B1.

I wish that the B Complex had enough mg of all of the B vitamins in it so we wouldn't have to take separate higher doses of B vitamins. I'm so glad it has helped you. Blessings & Hugs.....

thenazareneshul | @thenazareneshul | Aug 13 11:17am

In reply to @2coolbaby "I’m coming to you as someone who has both PMR and Fibro for 15 years! That..." + (show)

@2coolbaby

The issue with having both is that their treatments are very different and you won’t know what’s working because you’ll still be in pain unless you treat both!

I’m not sure why you can’t take prednisone, which is a first line treatment for PMR, but if it’s a medical reason, then you could possibly get approved for Kevzara as an alternative,

I’ve read that you can have PMR with normal CRP and sed rate in 13% of patients. Maybe stick that number in their face.

I also have CFS chronic fatigue syndrome. High dose B1 had done wonders for that. You can Google it. I take 1500 mg a day and it changed my life in that department.

Good luck!

Jump to this post

Wow.

I thought I was the only one. I have both fibromyalgia, and PMR too. The fibromyalgia is a new (this year) diagnosis. Though it appears I've had it for decades. Nice of them to get around to reading my charts seriously, finally. The polymyalgia I've known about since 2014. You are right, one should get tested early on for Lyme disease, to clear up that question and get treatment if that's what it is. I didn't have it, but was tested early.

Right now, I am not being treated for the CFS (fibromyalgia) as I just fired my Pain Management doctor. He should know better, he's an anesthesiologist. I do not tolerate any doctor who treats me like I'm a masochist. If I have to suffer needlessly, it will be for not letting some doctor with no compassion have at me. There's a question as to whether I can even take Cymbalta. I also have chronic kidney disease (just found out recently) and it's at stage 3a, which is just before I get to throw in the towel (stage 3b) and not hope my kidney's (1 or both) can recover from decades of doctors just telling me to take ibuprofen for all this pain. That, or Tylenol, which I do get to keep taking. What a buncha...

I just had an epidural (L5) putting in a steriod, that turned into an unplanned lumbar puncture. So, they sent me home with no pain med but telling me I was going to have a whopper of a headache. They got that one right. That doc was even the one who confirmed I must be off of all NSAIDs, permanently. Also, I'm already taking St. John's Wort (for depression) and as it's the only pharma one so far that I'm not seriously allergic to. Next week when I finally see the Nephrologist, she and I can discuss it all, what I can and what I can't take. I also have MSC. That's Multiple Chemical Allergies. Being allergic to a tri-cyclic antidepressant way back in the 70's sensitized me to all the neuroleptics. They do like to shut us up. The fact that I'm alive is just plain a multitude of miracles.

You can have PMR with normal CRP and sed rate in 13% of patients, for sure. Where I live, Rheumatologists do not see or take care of people with chronic fatigue syndrome, aka fibromyalgia. Because my CRP and send rate isn't in the range they take seriously. Hence, me not being treated for it for decades. It's only Seattle, it's not like we have modern medicine here. Silly me, I expected healthcare professionals in all the main specialties. Anyway, I arrived from Alaska with 2 broken feet. No joke. They don't (or didn't then) do feet when someone is on Alaskan Medicaid, which I was, at that time. They cut them off, if needs be. One foot had a major unhealed break, the other foots bones were falling apart inside. Both have been repaired now. Seattle does have a few really good foot surgeons.

I used to take high complex B vitamins, it's good to be reminded of it. Most of all, it helped me think my way out of serious situations and into better ones. A Vietnam Vet told me to do it. Though I saw something recently about not taking any additional niacin (?) supplements. It was one of them normally in the B complex OTC's.

On my Polymyalgia Rheumatica, we had to literally move to get it into remission. I was living in Alaska, the cold part, and developed an intolerance to cold (and to heat, already). I tried the Prednisone and got mood swings plus 90 lbs. My doctor that never mentioned either. A later PCP up there broke the news to me I'd "most likely have to move on out of Alaska." It worked. No joke. I can't afford the Oprah injections for my new-to-me obesity, but by losing slowly, I've lost 20 lbs now. Better late than never. The PMR went into remission about 5-6 months after we moved on down from Alaska to Washington.

If I have to endure a cold situation too long, the PMR tries to raise it's ugly head. Keeping warm then, puts it back asleep. No joke. At first, I had good Pain Management specialists who gave me hydrocodone, while scheduling me for back and S/I injections. God bless 'em. They did a great job. I hope it goes much better for you. If you get a doctor that doesn't take you wanting as many real solutions, instead of permanent opioids seriously, find your self new doctors. Life is too
short.

The definitive test for PMR is to take high dose oral Prednisone, and if it seriously reduces the pain by the next day, that's PMR.

glinda47 | @glinda47 | Aug 13 11:29am

What a story. I can't believe with your medication sensitivities, you can take steroids.
Stay warm!!!!!!!!

bozzardi | @bozzardi | Sep 28 11:19am

In reply to @glinda47 "Thank you for sharing your story and your status today. I'm sorry you have so much..." + (show)

Please be aware…I have been on prednisone for two months now! I have been diagnosed with PMR and Fibro….Rhuemy said this was PMR….no relief what so ever…..soooo, it is then Fibro……ESR’s are high with PMR, not with Fibro have had two blood tsts no change in ESR…..now we do the Fibro thing…..pain pills….gentle weights and stationery bike thing..very careful diet..(have ulcerative colitis anyway have to watch my diet always) I would take warm soaks but can’t get in and out of tub…so showers……I have just ordered infrared hand held gun….hoping this helps with the muscle, ligament, tendon pain…..forget sleeping..cannot nap in daytime and can’t sleep at night…I am 91 yrs old and have a myriad of other ailments…heart, arthritis,COPD…etc..etc…….sooooooooo that’s my story and I am sticking to it…..any and all suggestions more than welcome….take care and God Bless all….!!!!!!!!

glinda47 | @glinda47 | Sep 28 11:35am

In reply to @bozzardi "Please be aware…I have been on prednisone for two months now! I have been diagnosed with..." + (show)

You are amazing. My primary wishes for you are strength and sleep!
At 91 to be doing so much for yourself and with a great attitude. I respect you and your perspective greatly.
Wishing hard for you to feel the best you can and grab joy whenever you can.
Please take care of yourself...you are a treasure.

bozzardi | @bozzardi | Sep 28 11:55am

In reply to @glinda47 "You are amazing. My primary wishes for you are strength and sleep! At 91 to be..." + (show)

Well, thank you my Dear….i attribute part of my activity to having a 3 yr old great grandson living with me, he keeps us on our toes all day, everyday….If he comes and grabs you by the finger to sit on the top step of the stairs, and read books.. you go, no matter the difficulty in getting up…..thanx again…!!!!