HELP WITH PAIN
Posted , 8 users are following.
Hi everyone, i posted on here a while ago as i beleive i may have this conditon, but the last few nights it has been a lot worse with the pain, i havent slept for three nights, the pain seems worse when i get into bed, my legs, arms, neck my whole body is in pain, i take Gabepentin along with co-codomol, and ibruphonen as i am being treated for fibro, but for years my ESR levels and CRP have been extremely high and to be honest my GP hasnt done much about it, i was there the other week and my potassium is now high and has been repeated and i go back tomorrow for the results, he has refered me to a Rhemotoligist but that is not until March. I dont know if it is the cold wheather that affects my condition and think i am also starting the menopause. I also feel very bloated and puffy.
But I really cannot cope with this pain any more and dont know if it is PMR or Fibro or can you get a combination of both?
Is there anything I should ask my GP if i can start or try.
I really am at my wits end with this pain and trying to work after having no sleep at all.
Man thanks x
0 likes, 20 replies
jae61606 lindsey65522
Posted
You are in terrible pain. Is there no way you can be seen before March? Do the tests you've had differentiate between inflammation markers and Arthritis markers? My husband's doctor used those to determine he most likely had PMR.
A rheumatologist confirmed it.
The arthritis test was normal but his inflammation was super high. Along with his symptoms and a rheumatologist assessment, the diagnosis was made.
cindy828 lindsey65522
Posted
Much like you, I had the same pains - awful. Didn't know what to do, and doctor after doctor was no help. I called a rheumy in September and couldn't get in until May. That just wouldn't do. I even called the Mayo clinic in September and couldn't get in until December. You must get in to see a rheumatologist ASAP. Call everyone in the area and beg for any appoinment available. These symptoms will only go away once you are on prednisone. It sounds like your GP is a lost cause, and he doesn't have the necessary experience to help you.
Some people have gone to the ER with these symptoms and been admitted for days before someone accurately diagnosed them. So expensive this way, but if you can't get into a rheumy, it may be necessary.
Hang in there. The pain will really go away as soon as you start the right amount of prednisone.
Start calling.
lindsey65522
Posted
I have rang the hospital but they are unable to bring it forward just said to keep ringing for any cancellations, was wondering if to ask my gp tomorrow to start me on the prednisone to see if it helps,
Do anybody feel bloated and puffy with this or is something else i may have?
What and where is the Mayo clinic, i am in central london.
jae61606 lindsey65522
Posted
jean39702 lindsey65522
Posted
Prior to diagnosis of PMR and prenisone I too could not lie in my bed without terrible pain. I slept in a lounge chair for days.
It's possible to have fibro and PMR. The only way to find out for sure is to convince a doctor to let you try 15 to 20 mg of prednisone. Prednisone won't help the fibro pain, but will alleviate PMR pain. Over the counter ain medication does nothing to ease PMR pain.
EileenH lindsey65522
Posted
Then you need to get your GP to try to arrange an earlier appointment - although I know it is difficult. Ar eyou in the UK? Is private - just a single appointment - an option?
I have to say - I'm appalled a GP has left someone with all the symptoms of some form of arthritis for so long and managed it as fibromyalgia - one of the things about fibro is that is DOESN'T have raised ESR/CRP whereas PMR does. Have you got someone who will go with you - that seems to concentrate their minds when they are a bit dilatory! You could also take a copy of the "Bristol paper" - there is a link here:
https://patient.info/forums/discuss/pmr-gca-website-addresses-and-resources-35316
and ask if they would consider trying a week of 15mg pred. It may not be quite enough - but if it achieves a good result with your pain it could suggest PMR.
The one thing I am a bit bothered about though is that you say it is worse in bed/at night which isn't usual in PMR, although jean does say she had that problem. It IS typical of another form of arthritis which will also improve some with pred. However - some pain relief would be a start one feels.
jean39702 EileenH
Posted
EileenH jean39702
Posted
Mine is wrist pain - if the bottom of my thumbs near the wrist aches - beware!
Puts a whole new view on "by the pricking of my thumbs something evil this way comes..."!
jean39702 EileenH
Posted
I have a similar problem in one thumb/wrist, but pretty sure that one's good old arthritis. I have a handy dandy thumb/wrist support that usually alleviates the pain in a few days,
Mrs_Hobbles lindsey65522
Posted
So sorry you are in the awful amount of pain that you are in. To answer one of your questions, yes you can have fibro and PMR. I have both, fibro for about 15 years and then middle of 2014 the pain just got worse and worse! Like you my doctor wouldn't listen and eventually referred me to a rhumathologist who diagnosed PMR. Started on Pred and it was miraculous how soon the pain of PMR went. I too had the horrendous pain in bed, just relentless and couldn't turn over without crying out in pain, so sounds to me like you are going through the the same thing with Fibromylgia and now PMR. My ESR and CRP were always elevated but my doctor made nothing of it for years so it's possible that Fibro could elevate the markers. My doctor unjustifiedly always treated me as if I was a complete hypochondriac and as such never believed me with regard to Fibro, only ever reluctantly prescribed painkillers, but as I'm sure you've figured out, OTC painkillers don't touch the pain of PMR. If you can afford it I'd recommend you go privately for an initial appointment to a rhumathologist and get started on Pred asap. Really hope you can get something sorted soon and get relief from all the pain. xx
EileenH Mrs_Hobbles
Posted
WebMD (a very good and reliable site) says:
"Doctors do not use lab tests to diagnose fibromyalgia. The results of lab tests done on people with fibromyalgia should be normal unless another condition is present.
You may have lab tests to rule out other diseases or to find out whether you have another disease in addition to fibromyalgia. Fibromyalgia may occur along with other joint and muscle (rheumatic) diseases, such as rheumatoid arthritis. Finding these other conditions is important, because they may need different treatment."
So ANY doctor who ignores elevated ESR/CRP levels in a patient and insists it is due to fibromyalgia is dabbling in poor practice (or is plain ignorant). The entire time you had raised markers you very possibly had PMR - it can appear very similar to PMR, even down to the presence of trigger points but rarely as many as the 11 from 18 you are supposed to fulfil for a fibro diagnosis. The trigger points in PMR are often due to myofascial pain syndrome - which is due to a more localised concentration of the same cytokines that cause the inflammation in PMR. Both respond to pred, even oral pred will eventually help with MPS.
The only real differences between fibro and PMR are that fibro NEVER has elevated blood markers, PMR sometimes doesn't, but PMR pain responds to pred relatively quickly and the usual suspects for fibro have no effect at all.
Mrs_Hobbles EileenH
Posted
Thanks for your input and expertise as alwsys Eileen! The Fibro wasn't diagnosed from the blood tests that my doctor did, God forbid that she'd be so proactive. I complained over many years about pain and being so tired, she kept putting it down to me having a baby and having had bacterial meningitis a couple of years before plus 'probably have arthritis like your mother'. She eventually referred me to a Medical Assessment United where I was diagnosed with Fibromylgia by a rhumathologist who did the trigger point test. He said "you have Fibromylgia, if you have a computer, look it up for more information", and sent me on my merry way. He sent a report to my doctor who reluctantly had to acknowledge that I had fibro and would only prescribe painkillers. The blood tests were routine once-a year general blood tests for the likes of cholesterol etc which she would run through the results and just say that the ESR was elevated but probably because of arthritis. So the blood tests weren't being done specifically to check my ESR, just showed up in general blood tests. There was a definite increase in pain in 2014 and again as she wouldn't or couldn't make a diagnosis, so i asked to be referred to a rhumathologist who then diagnosed PMR and put me on pred etc. Long and protracted story but just wanted to clarify. I wasn't suggesting that my ESR was elevated due to Fibro, merely that they were elevated and my doc took no notice and that Fibro and PMR can go together! Think the main point from my post is that after all these years I need to change my doctor!!
EileenH Mrs_Hobbles
Posted
No, I didn't think you were - what I was saying is that I wouldn't be surprised if your "fibro" was never fibro as there are plenty of rheumies who don't get the difference either. If you had had a bacterial meningitis before it started then it is also possible you had what is called a "reactive arthritis". If you had an arthritis of any sort with raised ESR she should have been looking for other things - osteoarthritis doesn't generally produce raised ESR/CRP so she should have twigged "inflammatory arthritis" and have thought more about it since "best practice" is early management to stop progression of damage. It so happens you probably haven't had any but she couldn't know that. She is lazy and disinterested - and as a result is possibly quite a dangerous person to have "caring" for you.
Absolutely - you need a new doctor and I hope you find one who is a bit more up to the mark!
Mrs_Hobbles EileenH
Posted
Wow that's crazy Eileen!! Knowing what I know now about ESR & CRP its crazy to think that she made nothing of it, other than arthritis. Now I do have arthritis but again there was no treatment forthcoming, everything was dealth with by painkillers and then she'd have the audacity to tell me I was taking too many, implying was addicted to them! So whether I have reactive arthritis or fibro, the fact that nothing was done, does that mean its too late to do anything and I'm stuck with one or other? I've said for years I must change docs and it's been the finding of a good one that's been part of the problem the other part is actually making the move. Thanks again Eileen, definitely food for thought!
EileenH Mrs_Hobbles
Posted
It depends - never too late really though. Fibro is fibro - they know so little about it and I think it is an "I don't really know and I can't be bothered" diagnosis. Someone else said their local rheumies won't take her on as she has had a dx of fibro in the past - that doesn't mean you don't have something else as well! Fibro doesn't really go away either I don't think. Inflammatory arthritis? Never too late to improve the pain aspect - though if you have RA and there is joint damage you can't reverse it, but not all forms of arthritis cause joint damage. And there are other things it could be that do have organ involvement - so however late it may be, changing to a decent doctor is always going to be worth it.
But really - using painkillers is lazy. They have nasty side effects too - but too many doctors will hand them out for years while refusing to allow a patient to take pred "because it is too dangerous"!