How does PMR cause the pain?

[Bun31087]

After a week of coming to grips with this baffling condition, I am bemused to understand how and why the pain is so intense one day but seems to move to another spot to wreak havoc the next. To employ Christine Knippenberg’s characterization my gremlins seem to enjoy stabbing with spears or knives or just gradually tightening a muscle like a braid. What is physically happening? Can anyone direct me to research on the physical cause for the pains.

[PMRpro Ambassador]

The pain in PMR is due to inflammation in specific areas - around joints in particular and in the muscle fascia, the transparent skin you often see around joints of meat and poultry. That tends to result in swelling and that creates pain.

However - if you say your pain moves around from day to day it makes me question if it really is PMR. PMR causes bilateral and fairly consistent muscle pain and stiffness. And that isn't what you appear to be describing

[Summerrental in reply to PMRpro]

My pain is the same as BUN31087 describes, Intense pain that moves to a different spot each day, My Rheumatologist said it was PMR.

[PMRpro Ambassador in reply to Summerrental]

Not typical of PMR at all. Others who have said the same eventually got a diagnosis of palindromic rheumatism.

arthritis.org/diseases/pali....

rarediseases.info.nih.gov/d...

[Bun31087 in reply to PMRpro]

Thanks for the links. I am starting to wonder whether my condition is PMR as the Prednisone is not providing the silver bullet relief. I am also developing pain in clearly non-joint spots. I have a follow up appt with my rheumy in a week and he’ll have the benefit of this info plus a CT scan to incorporate in his diagnosis.

[Theziggy in reply to PMRpro]

I have PR, had to diagnose it myself and convince my rheumatologist

[Pegasu in reply to PMRpro]

My GP told me said it isn't PMR if it doesn't move around. Mine didn't for a long time but now it does. My physio said the pain is in the nerves caused by inflammation and the pharmacist said the same thing when I asked her.

[Bun31087 in reply to Pegasu]

Thx Pegasu. I suspect PMR can present in many forms but have to say I am wondering about my diagnosis.

[PMRpro Ambassador in reply to Pegasu]

Personally I'd say that is wrong - PMR pain DOESN'T move around in the vast majority of patients. I do wonder where they come up with these idea. And it isn't nerve pain - if it were then gabapentin or pregabalin would do more good and they almost never do.

[Pegasu in reply to PMRpro]

How do we know who to believe? Now today I have a row of purple dots (bruises) right up my left arm. I haven't injured myself. Who knows what is going on! I have an MRI tomorrow. I'm unsure what they can tell from that.

[Bun31087 in reply to Pegasu]

Good luck with the MRI. Hopefully it will help refine your diagnosis. Hang in there Pegasu.

[Pegasu in reply to Bun31087]

Thank you xx

[PMRpro Ambassador in reply to Pegasu]

These are possibly purpurae - I develop them just by hanging a shopping bag over my arm! The pred makes capillaries in the skin layers fragile and they leak very easily.

I believe the world experts I partner with as an expert patient in research groups and other patients with PMR. GPs often tend to be a bit mixed up about PMR - there are good ones, but plenty who could do with doing some reading up about the symptoms!!

[Pegasu in reply to PMRpro]

Thank you. That makes sense. It all comes down to the steroids. My practice nurse rang me this afternoon and told me that I now have diabetes from the blood test I had on Wednesday. She said to manage it with diet because it is probably the steroids.

[Bun31087 in reply to Pegasu]

Ugh. Sorry to read that.

[PMRpro Ambassador in reply to Pegasu]

Cut your carbs drastically - you can't influence the effect of the pred on the way your body deals with the glucose stores, releasing random spikes of glucose from the liver and muscles. You can do something about

If it was a random BS level it is quite unreliable - if it was taken soon after one of thse spikes it doesn't represent the overall picture. Did she do an Hba1c test? Quite a few on the forum have reversed their pre-diabetes status by cutting carbs. Start with all processed carbs, added sugar and limit fruit, berries only and NO bananas!

This is a good introduction:

dietdoctor.com/low-carb/foods

but until you get the hang of it keeping a food diary is a good idea - often people wail they aren't losing weight as promised despite eating low carb. But when they are honest and weigh food and calculate the carbs - there was no wonder they weren't losing!

[Pegasu in reply to PMRpro]

Thank you so much for this. She told me not to eat berries but didn't give me any more advice. I do have bananas and blueberries every day for breakfast. I can do without if it helps. I don't want any more pills.

[PMRpro Ambassador in reply to Pegasu]

Blueberries aren't too bad - have a good read of the site I linked. Once you understand the idea it is easy enough I think.

[Pegasu in reply to PMRpro]

Thank you.

[SheffieldJane]

It is very difficult to achieve a definitive diagnosis of PMR. What seems to be the clincher is our response to Prednisone or Prednisalone in the UK. Basically a treatment of 15 mgs - 25 mgs of a non - anabolic steroid taken daily. A speedy relief from most of the pain, sometimes in a matter of hours, is a firm indicator that PMR is the culprit. I hope your doctor tries this for you soon. It feels like a miracle, if it is PMR.

[Summerrental in reply to SheffieldJane]

When I was put on 20 mg of Prednisone, I can only describe it like a miracle, The pain went away within a few hours.

[Bun31087 in reply to Summerrental]

Maybe that will be a possible next step bump me to 20mg (I’m on 15) and see if that makes a difference.

[Pegasu in reply to Bun31087]

My GP won't put mine up past 15mg.

[PMRpro Ambassador in reply to Pegasu]

Then they need to do some homework: the 2015 Recommendations for the management of PMR say a starting dose should be the lowest effective dose in the range 12'5 to 25mg. 15mg is towards the low end of the range and if it doesn't achieve the desired result then a higher dose should be tried.

rheumatology.org/Portals/0/...

[Bun31087 in reply to SheffieldJane]

Hi SJ. You’ve flagged a reason I am doubting my provisional diagnosis as the Prednisone is not providing the silver bullet relief. That and the fact my pains seem to move around and include clearly non-joint locations.

[Pegasu in reply to SheffieldJane]

The pain went from my shoulders immediately the first time I was on 15mg and hasn't come back but the lower body pain is indescribable. I don't like the side effects of pred but I like the pain less, so a no brainer. I will be trying to persuade by GP to up the dose when he rings on Thursday.

[PMRpro Ambassador in reply to Pegasu]

The lower body pain sounds as if it may be what we call add-ons to the PMR in the form of sacroiliitis and spasmed muscles in the lower back and buttocks. They all respond bettwe to more targeted treatment than just raising the oral pred dose though that may help a bit.

[Pegasu in reply to PMRpro]

Oh that's very interesting. Just got back from MRI. That was challenging as I can't lie on my back due to COPD, but I managed it, I am so determined to get rid of this pain in whatever way I can, and get on with my life. I have to say that I thoroughly enjoyed the long bus ride on the way back (my son was able to take me there but he was needed to collect his little boy from school as they are doing a short day due to the heat and he had to go). It felt like independence again doing something by myself, but the walk from the bus stop was torture, just a very short walk. Haven't been able to go out by myself since March. I will look up sacroiliitis, never heard of it. thank you.

[SheffieldJane]

It is horrible when you can’t get a correct diagnosis and the appropriate treatment. Have you had an MRI scan at all? Time for some deep investigations I think. My Large Vessel Vasculitis symptoms were vague and ever changing, eventually spotted during a specialist ultrasound scan, in my armpit. Good luck! Don’t be brave at the doctors.