Hi all. I had to see a rhumie this morning that isn't mine (long story) anyway he said my symptoms sounded more like chronic fatigue syndrome as people with PMR don't have my symptoms...
My esr is at 21 and I'm currently taking 14mg pred.
He asked what symptoms bothered me the most. I explained that everyday tasks caused problems. Things like drying my hair, my arms ache and feel heavy. Walking up stairs causes pain in my calves n thighs. That's when he said it didn't sound like PMR.
My question is does anyone else suffer like this?
And to Eileen if you're around would cfs have raised esr?
Hi Charlie , well I must not have PMR also , according to your new Rhumy , I have had it 4 years now on PRED and STILL have pain in my legs and hips walking up the stairs , I am 56 and hubby says I have the penquin walk , hurts me to fasten my bra , kills me most times to get up from sitting for a while ..... So I must have CFS as well lol Elieen will be along shortly i should image or any other knowledgable people on that are fantastic at helping us people with PMR
Hi Charlie, I am sure you are confused. This is my story and mine alone. I was diagnosed with ME/cfs January 2001 and was bedridden on and off in the early days (I think 3 years) after that time I was able to manage ME to the best of my ability. Move forward to 2014 and I start to get really bad headache, just one side of my head, sore jaws, I was putting it down to Neuralgia, my then gp wanted me to go to A&E, I refused as I was too ill (couldn't sit and wait in A&E) while this is going on I am starting to get pains in every muscle in my body. I cannot turn in bed, I cannot get out out of bed. In a chair I had to physically lift one leg over the other.
It took me 2 and a half hours to get showered and dressed to drive an 8 minute journey to my drs. My body felt as if it had been filled with concrete. When finally diagnosed November 2014 with PMR and was prescribed the magic pill called pred it was like magic, pains subsided within hours and evened out in a number of days. If I had a choice between ME/cfs or PMR or GCA I would most definately pick ME/cfs. I know the difference, I have lived the difference. These two illnesses are poles apart (in my experience). How you describe your pain most definitely sounds like PMR. Regards Pat
Raised ESR in CFS? Not that I know of - and if he says those aren't the syptoms of PMR he doesn't know what he's talking about! Practically no-one I know would classify as PMR on his basis. Wonder how many other poor sods are walking around with unmanaged PMR because of him? I hope he doesn't tell everyone with fatigue they have CFS because if he is, he's missing a LOT of diagnoses.
As Pat (who has seen both films and got the t-shirts after all) says, pred works for PMR, it does nothing for CFS. If it did then they would use it for the really bad cases. If pred helped the main problems then it was PMR and not CFS. Your ESR is normal at the moment - because you are taking pred.
Exactly. After 6 months of x rays, MRI scans, different physios and numerous trips to the Drs, I thought I was going mad with this "unknown" pain. I was at my wits end until the "magic" pill and finally knowing what was wrong put my mind at rest. I dread to think what I would be like if I hadn't been given the proper diagnosis.
I had over a year of going to a young doctor who, I think, thought I was a hypochondriac old woman. Just before she left the practice (to have a baby) she finally sent me for blood tests ("normal" she told me) and x-rays ("you're full of arthritis". Next doctor looked at same blood results, sent me off to have more, and diagnosed PMR. Pred trial proved it. I also got to see my x-ray results, and far from needing a hip replacement which I'd feared because of crippling hip pain, turns out that's one area of my body completely free of OA (and I already knew about the rest).
I am in the same boat as you! Long term CFS/fibro....(1989) yes, there is a distinct difference, and my doctor recognied it as so, because the ESR was raised!...and referred me to rheumie....now I am struggling to come off pred, rheumie says it must be he CFS/fibro getting in the way!!
Well maybe - but it could equally be that the PMR is still active. It doesn't go away in everyone in 2 years whatever they think! Average is about 5 years - half take up to 4-6 years and the standard German textbook says 5 years. A quarter of us take even longer - for me it's 12 years and counting but no-one here disputes the diagnosis or tries to force me off pred.
Yes Linda - Long term CFS and I had Fybro (but it went away as mysteriously as it came, so I have experienced that type of pain) PMR pain is nothing like CFS or Fybro pain. They are poles apart. I still had a life with ME/CFS but PMR has knocked me for six. I was one step away from a wheelchair, I do not exaggerate. My life is so different now but I am still so grateful, I am alive and breathing. Onset of PMR- Bloods were ESR 124 CRP 46.7. I started at 20mg of pred in November 2014 and am now down to 3mg with no flares (fingers crossed) still stiff and sore but nothing and I mean nothing like the pain I experienced at the beginning. I remember begging the dr. (he was a locum) for morphine or something stronger than paracetamol, he said no until the blood results were in. I cried in the reception area the pain was so bad. The same dr. rang me at home a few days later to let me know it was PMR and started me on steroids right away. I have no pain at all in any joints, it is all muscular. Phew all this typing lol.
Jen, MANY of us, according to the postings on this list, have those fatigue symptoms! I do every single day with my PMR. My rheumatologist also denied that mine is connected. In his usual manner (not uncommon I've found with doctors; he comes in, stands before me, and makes these quick judgments--because he's in a hurry!) I told mine he should look up this list serve and see what other doctors know. We face multiple challenges in the medical community: They're overbooked and in a rush, they have egos (mostly a guy thing I think), and they feel they HAVE to give a diagnosis and don't like saying, "I don't know" (and we WANT one!), and unlike nurses the we men grew up not learning as much about compassion as women have. We must stay in charge of our own medical care and feel comfortable with a 2nd (or 3rd) opinion. I told my doctor that I've lived with my body most of my life and know at times what's going on--because I READ accurate information. Good luck, and believe fatigue is common with PMR.
Hi Charlie, my mother had CFS and raised ESR was not something considered, although can be raised if you are under the weather with a cold even. Your ESR looks pretty good, did they check your CRP too? In fact your symptoms are not at all like my mother's so goodness knows what the rheumie is talking about. Perhaps he was having a bad day!
As the others say, your symptoms sound very like PMR, do you still have them or did the pred act like a miracle in aleviating them? You should find pred reduces the pain a lot, if not you may be on too low a dose or you have something else.
My main rhumie is a Proffesor Bowman at the QE Birmingham. He was actually my 2nd opinion. He is treating me for PMR although I am only 45. My crp today was 19.
I was out up to 40mg pred for suspected Gca but it was never confirmed because I was treated with 40 pred before any tests were done.
I am currently on 14mg pred.
On 40mg I was brilliant for my life back. Once I dropped under 20 all my pain started coming back. I have only ever managed to get down to 14 as pain keeps me struggling. I have bad cushiongolds. So they want me off pred.
The rhumie I saw today was the 1 I saw 1st who told me I was suffering a virus. I vowed I would never see him again. Then today I walk into office and there he is x
A side effect of pred is a cushingoid look. If you are supposed to get off pred what are they suggesting will help the pain? What about your GP are they any good?
This is totally characteristic of PMR, I don't know why he thinks otherwise. I'm sure people with PMR longer than me will also agree, these symptoms I totally identify with. Maybe it is he who is confused.
I had CFS in my late 30s....now in my late 60s.There are some similarities but it was not PMR. My bloods showed up coxsackie B virus which led to the CFS. There are some very knowledgable docs out there but there are also some very arrogant and patronising ones as in all walks of life. I think you need to see your normal rheumie who appears to know the condition. Can you ask for a sooner rather than later referral to be seen by them? If your GP is good then I'd be inclined to stick with them.