Confused
Posted , 16 users are following.
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?
Thanks Jen x
0 likes, 30 replies
ron25099 Charlieschoc
Posted
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 [u]hurry[/u]!) I told mine he should look up this list serve and see what [u]other[/u] 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.
ptolemy Charlieschoc
Posted
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.
Charlieschoc ptolemy
Posted
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
ptolemy Charlieschoc
Posted
Silver49 Charlieschoc
Posted
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.
EileenH Silver49
Posted
Yes, I had what would now be diagnosed as CFS or ME when I was in my late 20s - it was NOTHING like PMR. I was exhausted, worse than PMR - but not stiff.
I was ticked off on another forum the other day for not bowing down and worshipping doctors (I'd posted a poem written by a doctor laughing at themselves and this person felt it was disrespectful). When I read a thread like this it makes me want to grab that person by the ear and tell them to listen to the experiences all too many patients have...
Charlieschoc EileenH
Posted
I couldn't agree more.
I think as patients we should compile an extensive list of symptoms of PMR to hand out to doctors. Signed by us all.(not feesable I know)
We the undersigned live with this condition daily. Here are our symptoms lol....
Charlieschoc
Posted
I bet the person complaining was a doctor's spouse hehe xx
EileenH Charlieschoc
Posted
They're all over the literature - someone who professes to be a rheumatologist should know...
S/he was quite snotty about it - particularly the fact that the post had had 21 "likes" ...
linda17563 EileenH
Posted
..
I have always thought, that having the frustration of the Rheumatologist putting pressure on patients to reduce Pred, and not believing symptoms are PMR.....has made us patients worse at times, well, they certainly haven`t helped....
EileenH linda17563
Posted
Silver49 EileenH
Posted
ptolemy Silver49
Posted
It reminds me of the joke about this old guy wandering through the hospital shouting out commands. Someone asks his colleague who the man is, the reply "Oh that's God, he thinks he's a Consultant".
Silver49 ptolemy
Posted
adette01750 Charlieschoc
Posted
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.