Positive Rhuemetologist appt: Well I shared with... - PMRGCAuk

PMRGCAuk

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Positive Rhuemetologist appt

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Well I shared with the doctor that I can not take the new med ever for fibromyalgia.

He said let's try and get you back steady again on your Prednisone and then think about if we need to do something else for the fibromyalgia. So I have been on 12.5 and still feeling bad and so Saturday I took 15 and it was amazing how all the pains went away. I told him fibro does not respond and he poked my hot spots and said it is still there. Dang!,, 12.5 is not holding me since the crash on new med.

Anyway, I showed him the drop dead slow method and he said it looks like in my case this will be good as I am so sensitive to meds etc. I did not know fibromyalgia makes you more sensitive to smells n stuff I always knew I was a sensitive as my son will say Did you tell Guy you are a sensitive? I actually made the doctor grin as he said it is not sensitive it is sensitivity. Who cares I am a sensitive.

So bottom line is my lab crp is at 13 one week ago. It was 15 last month it seems to yo yo around between 13-15. On a scale of 1-10 how high is 13???

So now I am going back to 15mgs of prednisone for two weeks and then start down 1 mg at a time doing the slow method.

It is already hot n getting humid here in California 80' . It is weird how fast winter went by.

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8 Replies
venezia1 profile image
venezia1

Hello - can you tell me please what is the new med you refer to for fibromyalgia? I am recently diagnosed and have had bad reactions to both gabapentin and now pregabelin - impossible to sleep and becoming exhausted.

in reply to venezia1

Hi, if you need sleep this one does it. I was taking 2 per day and by day 3 I could not rouse myself. I also have been on amitryptiline common name elavil since my forties when I had fibromyalgia really bad for five years.

The drugs name is Duloxetine - Cimbalta.

Good luck if you get it take only one a day until you get used to it.

venezia1 profile image
venezia1 in reply to

Thanks so much for this. I shall ask my GP for it after the holiday.

PMRpro profile image
PMRproAmbassador

The "hot spots" are where? There is a great overlap between fibro hot spots and those in myofascial pain syndrome but doctors are often unaware of the fact. The MPS ones don't go immediately with oral pred - but they can be worked on.

Don't care what he says - all that went away with pred is NOT fibro. And I'll lay odds that the leftovers aren't fibro either.

CRP 13 - what is the lab's normal range? You are well built- often that means YOUR normal range runs at the high end. One lady in the charity who had GCA had a CRP of 13-15 and her doctor was relunctant to reduce the pred further. Then her rheumy agreed with her that maybe that was just her - and they started to reduce carefully. She got off pred, no problems with GCA.

in reply to PMRpro

The normal range is <8.0 ... I have a few other things going on that can cause the inflammation. I have a gallbladder full of stone which rears its ugly head once in a while. I have been having plantar fasciitis which is weird one day ouch and then two days later it is better.

At this point I don't care what my labs says I am going on symptom relief. I have always been the odd one where I don't seem to do anything normal.

SheffieldJane profile image
SheffieldJane

Just wanted to add that I am glad things are looking up and your doctor listens to you. I don’t think you are alone in your “ sensitivity”. I agree with PMRPro about the Fibromyalgia diagnosis. Doctors give the diagnosis out like candy. Question, question, question.

I envy you the heat. I’m cold. 😨

Yes I do not have fibromyalgia. I know how it feels and part of me wonders if what I was diagnosed in my forties was early PMR. Who knows.... All of the hot spots for fibro are inflamed but so is the rest of my thigh etc. I have hot spots all over the place mostly down the large muscles.

The pool open in a month and I can't wait. I find I can run in the water for five minutes and I feel fine.

PMRpro profile image
PMRproAmbassador in reply to

"I have hot spots all over the place mostly down the large muscles."

So do I - myofascial pain syndrome. Not fibro...

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