PMR AND Fibromyalgia?!

[Alliswellforever]

Would certainly appreciate your experience if anyone of you have been suffering from Fibromyalgia for as many as 25 years and didn’t think your (newer) shoulder, hips, neck etc. pains were something different.

[Daisychain12]

Hi darling I’ve had fibro for over 25 years!! For most of this year I had new pain that was horrible. Pred got rid of it in a matter of hours although of course it didn’t touch fibro pain. What about you? Xxx

[Alliswellforever in reply to Daisychain12]

Hi! Thank you for your reply! Same here, but Dr. not convinced I have also PMR because of my age (51). I improved quickly and a lot with Pred, but she wanted an 80% to 90%

Improvement and I felt like 70 +- 10... Thinking maybe it’s the Fibromyalgia that’s blurring the effect?!

[Daisychain12 in reply to Alliswellforever]

Yes it is difficult. But the new severe pain I got was not like the fibromyalgia and it went away with steroids leaving behind the usual dragging muscle pain from the fibromyalgia xxxx

[PMRpro Ambassador in reply to Alliswellforever]

Anything that went with pred is PMR - and your doctor is being silly. Over 50 is what it says in the guidelines - and the patients wanted it to be lower! I was 51 when it started.

What's left of the pain? I had hip bursitis and tendonitis/synovitis in my hands and feet - they all took a couple of months to go because i had had them so long.

[Alliswellforever in reply to PMRpro]

Thank you sweetheart so much for your info. It really helps to feel comprehended, especially when is someone who is in a similar position! I feel I still have pain in arms, like rotator cuff or muscles around it. Some pain in knees, thighs, and “beautiful” Sciatica... We both are in the 51th club! Yeah! So glad you’re feeling much better! Gives me so much hope... Blessings

[tangocharlie in reply to Alliswellforever]

I was 51 when I got PMR, but it's taken 6 years to convince the rheumatologists who said I was too young to have it. Don't let them fob you off because of your age. I was told I had fibromyalgia as recently as 6 months ago but I knew that wasn't true. I'm not convinced there's even such a thing as fibro, I think docs just say that when they don't know what's wrong with you or even don't believe there is anything wrong with you.

[Louisepenygraig]

I've only just been confirmed as having Fibro even though I've probably had it for 30+ years. I gradually started getting more and more tired and started reading about fibro a couple of years ago. August 16 I went to the doctor to ask. He thought it was possible but, as he said, there are no tests for it. He offered me amitriptyline but, as I'd had a bad experience with it as an antidepressant I said no thanks. Blood tests were all normal. As time went on I got worse though and did start having some occasional pains in my neck that did feel different though. Spring 17 I went back to my GP. This time my ESR was high so GP thought I might have PMR. My rapid response to pred confirmed his diagnosis. I've never had the extreme pain and stiffness other people have mentioned though. Maybe it was caught early. Then I put the idea of fibro rather on the back burner and tended to put everything down to PMR! Just a few weeks back I saw a rheumatologist and he confirmed I had both. My GP has prescribed amitriptyline now. I've been taking it for nearly a week and most of my fibro symptoms have gone. I think the PMR pains are different and more consistent- mainly neck, shoulders and temples - whereas the fibro is more all over and in moves around. I've not managed to reduce my pred below 11mg but I'm tapering down from 15 again now. I'm hoping now I'll be able to distinguish better between pain from fibro, PMR or pred withdrawal but it's early days yet.

[Daisychain12 in reply to Louisepenygraig]

It’s very very hard to have both. I am still struggling to cope emotionally to be honest. It seems so cruel xx

[Alliswellforever in reply to Daisychain12]

Soooo True! I hear you! And I am struggling also, even more when I study Metaphysics, the power of positive thinking, etc. and having to admit an illness is definitely counterproductive...

[Daisychain12 in reply to Alliswellforever]

Yes. I love Louise Hay but I struggle to accept things as stoically as she does xx

[Alliswellforever in reply to Louisepenygraig]

Glad you’re feeling better! I have Cervical Spondylosys ( Arthritis) in neck for more than 20 years now, I used to be a gymnast and had a mild accident, so neck pain is constant... BUT... now that I know of PMR, the new and relentless pain has an explanation! How fast was your response to Pred?

[Daisychain12 in reply to Alliswellforever]

At one pm on the Saturday my husband had to come to collect me from the pharmacy where I had gone to get the pred script. I couldn’t get out of the chair. By seven pm same day I rang my friend to come over immediately. I had to show her how I could run up and down the stairs. I promise I am not exaggerating.

[Alliswellforever in reply to Daisychain12]

Wow! Fantastic!!!!💐

[SheffieldJane]

Was your response to Prednisalone dramatic?

I don’t know whether I have it, the Jury’s out. It sounds far more severe than my symptoms prior to PMR diagnosis.

[Daisychain12 in reply to SheffieldJane]

Yes mine was. The new pain in shoulders back and hips just went. But still have ghastly fibro 😭😭😭😭

[Daisychain12 in reply to Daisychain12]

I can honestly recommend acupuncture with someone who knows what they are doing xxx

[Alliswellforever in reply to Daisychain12]

My Dr. send me to yoga. I do a very mild one. Also helps with anxiety, being more relaxed and controlling stress has helped me a lot!

[Angiejnz in reply to SheffieldJane]

I've had pain and fatigue for years and just kept on going, as we all do. I did wonder why I had to put in twice as much effort as others to get the same result and now I've been diagnosed, it all makes sense. The fibro pain changes so it's hard to describe but the pmr pain for me is more like a strong crushing gripping pain that only goes away with pred. With fibromyalgia I can still move, with pmr pain everything stops. Hope that helps in some way, it's hard as it is so individually experienced.

[Alliswellforever in reply to Angiejnz]

Excellent descriptions! I just couldn’t believe I was as sick as I was (am) ?! Since I had always try to ignore the pain and stuff, but PMR... very hard to ignore! 😆

[Alliswellforever in reply to SheffieldJane]

Well, my response to Pred was kind of dramatic, since I honestly don’t/ can’t differentiate between Fibromyalgia and PMR sometimes... that’s when my Dr. comes and says she’s not very convinced it’s PMR... But my CRP is 20 and my Sed Rate 68. So, being treated as a positive. Also got tested for blood cancers... Scary!

[Angiejnz]

I've just been diagnosed with fibromyalgia but like everyone else, have had it for years. I feel like an onion with layers of pain that mostly feel very different. The pmr pain is distinct from fibro pain which is different from either spine pain or nerve damage. I did a taper too quickly and was reminded how bad the pmr pain can be 😶. Because I've had it for so long, the fibro pain is a daily part of life that never goes away, thankfully the pmr pain mostly does. On the bright side, we woke up this morning and lots of people didn't so I'm grateful for another day.....and tramadol for fibro pain 😆

[Alliswellforever]

Being Grateful ... 🤗✨✨✨💓 Blessings!

[SheffieldJane]

I love that and your name Alliswellforever a very good mantra.