Have I Got This
Posted , 10 users are following.
Good morning everyone, i found this forum as I follow and chat on the Fibroymalgia forum. But I am wondering if I have Polymyalgia Rheumatica, i have had all over pain for years, but around five years ago rhemotolisigist said it was fibro, but couldnt understand why my ESP and CRP and white blood counts are so high.
I have pain all over, mainly my neck shoulders and arms, although lately my legs have been more painfull, its a constant pain thats all over. i take gapamentin with co-codomal and ibuphreon.
Just wondering as i am seeing my Gp on Monday and would like some information if this could be this,
Many thanks
0 likes, 9 replies
Daniel1143 lindsey65522
Posted
One quewtion: is it sharp pain or a deep ache?
EileenH lindsey65522
Posted
The general symptoms of fibro and PMR can be very similar - after I had had it for 5 years I did a lot of research to work out what it was I had, given it seemed beyond my GP! It really did come down to PMR with a slight chance of fibro since some of the trigger points are in similar places. I was referred - because I DIDN'T have raised ESR and CRP. The rheumy I eventually saw didn't agree it could be PMR - he wanted it to be anything but! But all his suspicions were ruled out one by one. I was about to head off to the US with my husband and so the rheumy gave me 6 weeks of pred (2 weeks each of 15/10/5) to tide me over until I saw him again. Less than 6 hours after taking the first 15mg I walked downstairs normally and back up carrying a cup of tea - something I hadn't done for about 5 years! I stomped down like a toddler and crawled back up on hands and knees.
He still didn't want to know and was insistent it was psoriatric arthritis so wanted to give me a DMARD, one where you have to avoid the sun and have monthly liver blood tests. I was about to move to Italy so that wasn't possible until I had a doctor here so I never saw him again - I wouldn't have anyway, I don't like doctors who don't listen to their patients, I'd had 2 that year which had caused a lot of unecessary trouble for me. A different GP listened - was convinced it was PMR and provided the required prescription. The doctors here are also convinced enough it is PMR.
There are 2 primary differences between fibro and PMR: one is that fibro almost never comes with raised ESR and CRP and certainly not because of the fibro, it isn't due to inflammation - I'm speechless a rheumy doesn't know that. PMR doesn't always come with raised markers - but 80% of patients do have them.
The second difference is that PMR usually responds well to a moderate dose of pred - 15-20mg/day is usual - which relieves the inflammation. Fibro doesn't - because it isn't inflammation.
This our collected link post:
https://patient.info/forums/discuss/pmr-gca-website-addresses-and-resources-35316
where you will find loads of links you may find helpful. The NE of England PMRGCAUK site is particularly good. The other one I'd particularly mention for you is the "Bristol paper". It is to help GPs diagnose and manage PMR better - so your GP shouldn't be offended in any way(though everything is possible!). I would take it and point out their "test" of using pred for a week to see what happens - it is disputed by some rheumies but it does provide useful information.
If a large proportion of your pain and stiffness is relieved with pred it is most likely NOT fibro - it COULD be another arthritis but PMR is pretty likely and a good place to start. But as I say, I'm appalled your rheumy ignored signs of systemic inflammation. What planet is he on?
Where are you?
lindsey65522 EileenH
Posted
I am seeing my GP on Monday not that he has been much help with the fibro stuff, and dont really do anything about the raised blood levels, so when i go Monday I want to bring this up to see if it is PMR,
Im in West London i didnt like the rhemo i see he asked me to have quote personall bloods which upset me a bit, and was totally needless so I never went back, PMR was not mentioned he just said its unusal to have such raised levels with Fibro,
I feel quite swollen under my arms and bloated, i am a bit overweight and find it impossiable to loose weight, i dont eat no more than 800 calouries at day, so its just not right dont know if its the medication as also take meds for blood pressure and diabetices.
I have widespread pain, very stiff specailly the mornings, but the pain is not only the top half but my legs also.
EileenH lindsey65522
Posted
If you really are only eating 800 calories - you may well be eating too little to lose weight! Not joking, honestly! The body goes into starvation mode so it uses far fewer calories.
If you can, ask for a referral to Dr Hughes at Ashford and St Peter's Hospitals, Chertsey. He is excellent - and won't ignore something that obvious. I still can't get my head round it!!!!
crash1949 lindsey65522
Posted
amkoffee lindsey65522
Posted
hypothyroidism which also causes body aches. I suggest you ask your GP to check your thyroid too.
BettyE lindsey65522
Posted
My PMR was first diagnosed as OA but after blood tests which did, in my case, show very high ESR and CRP I was given 15 mgs. Prednisolone and, like Eileen, was relieved of almost all pain within 4 hours which my GP said was good enough for him.
I was lucky. It was only three days from my first appointment to diagnosis.
dan38655 lindsey65522
Posted
Another possibility is elevated insulin level, which is quite common, is strongly associated with inflammatory conditions, and causes the body to quickly put nutrients into storage in the liver, muscle and fat cells, leaving the patient hungry even as they tend to gain weight.
I am able to reduce, by half, my current prednisone dosage through accelerated fasting (by riding a couple of hours on a bike), suggesting to me that this metabolic link to my pmr may be related directly to insulin level. It took me a few years of seasonally-varying response to the prednisone before I was able to conclude that there was a connection between my pmr symptoms and my "ratio" of diet to exercise. And, surprisingly, the large difference my response to the medication has consistently ocurred within a narrow range of body weight of just a few pounds.
So I encourage all pmr sufferers to experiment with this diet/exercise effect, perhaps setting a target weight loss of just a few pounds, to see what the immediate response is. I now regret previously dismissing this possibility, even as I suspected it early on, because my weight had dropped already due to pmr before I received a proper diagnosis. But with my seasonal activities having consistently led to a reduced pred dosage requirement, I now have the precious knowledge with which to control how much pred that I can get by with, and plan not to need any more seasonal dosage increases.
denisep911 lindsey65522
Posted
Hi Lindsey , I have both Fibro and Pmr and yes it's very similar
I found that prednisone doesn't help with Fibro and it's hard sometimes to know the difference.