PMRGCAuk
6,938 members10,944 posts

Fibro and PMR

Can it be true. My new Rhuemetologist As soon as he came into the room he touched all the fibro hot spots and said I now have fibromyalgia. If he had gone down my arms and legs he would have hit all my hot spots.

How do you know what is what? He floored me and I went brain dead and never asked any questions. Then he gave me a new prescription starts with a D sorry it almost killed me so won't take that again. It was an anti depressant he was using for sleep. I sleep fine...

So in the few months I have had him as my doc he has crashed and burned me with his take 12.5 one day then 10 and alternate between them. And then poisoned me with a new pill. I see him again next week and will make him listen or I shall be done with him.

It is really bad here as the fires burnt down several doctors home and instead of rebuilding they have retired early and headed south. We have such a shortage of doctors and my favorite GP is finishing up her residency and moving to a new area too far to drive. I could cry she has been the best ever.

I am so tired of all of this.

15 Replies
oldestnewest

Where did your imaginative rheumatologist get his training?

Reply

I am so sorry to hear this Lin-calif. it must have been such a stressful time and now you have a doctor who doesn’t get you or your condition. I would certainly go back to the dead slow nearly stop taper that works for most of us. If you are very symptomatic I wouldn’t taper at all until things settled. Do you think he’s completely wrong about Fibromyalgia? I know you can have it alongside GCA ( it is GCA?).

Let’s hope this is just one of those bad patches we go through. You were so happy when you moved into your new home and you will be again. Stick with us for a while until you get on an even keel again. There are plenty more doctors in the sea although it’s rotten losing a good one.

1 like
Reply

Thanks for your reply. Every flare gets me back into the tired zone.

Yes, I love my new place and my wonderful friends. They are very supportive and are always taking care when needed. I try not to impose but have no problem when I need milk n they are going to store. New side of the coin for me.

I also have a man friend who tries to spoil me but I won't let him hehehe much. His energy level is on par with mine so we are a perfect match n he is now hooked on stamp collecting also...

So if I could get my docs to line up with my friends well it would be paradise.

LInda

Reply

You will, get them lined up I mean. I always think you sound as if you have a nice life. I like the sound of your man friend.

Reply

Oh I had PMR almost a year before I got GCA.

I had fibromyalgia in my forties and was healed after 5 years. It doesn't feel like fibro to me so go figure.

Reply

If it doesn't feel like your old fibromyalgia felt, does the doctor know that. Could it be myofascial syndrome? PMRpro has posted about it. Lots of trigger points that hurt, and may respond to massage.

Hoping it is something that responds to a fairly simple treatment regimen, whatever it is.

I friend diagnosed with Fibromyalgia became asymptomatic after losing 16 pounds by going on a diet of meat and veggies, no carbs, sugar, or dairy. She never thought she could do it. But said it wasn't too hard. Just set herself a month to see if it would help. Lost that 16 pounds in about 5 weeks.

Reply

Hi Hindags, I can't handle massage my muscles hurt when rubbed. I had a pedicure for the first time a while back and she massaged my calfs and it hurt awful.

I need to do the meat n veggie thing as it would be good for me to lose weight.

I am calling doctor today to see what my crp lab result.

Linda

1 like
Reply

Hi Lin-calif

Like Sheffieldjane I remember when you moved into your new building and we’re so happy to be settled. You are entitled to be cheesed off with something else rearimg it’s ugly head. If you are like many of us you will take cover for a bit to process and then put your tin hat on to go into battle. Your support network at home and here will get you through. I’m not good at taking my own medicine as I go into what my husband calls tunnelling mode. Don’t be like me. Share the good and the bad, lean on friends. You can do this xx💐

1 like
Reply

I like that ..... cheesed off.... made me laugh. Thanks!

1 like
Reply

Hi Lin- calif yes I too remember your move and the troubles you were having. So sorry that you're going through it again. I think like the others I'd stay stick with what you know works I.e the slow taper and hopefully you'll have more answers re the fibromyalgia when you next see the Rheumy. Let us know how you get on.

Reply

Yes I am doing the slow taper from 12.5 to 11mgs. I am not sure but think I need to actually stay at 12.5 for a bit. I am not back to where I was energy and active wise. I will know more once I get my lab result.

Reply

I have a similar situation, and was prescribed amitryptiline, it works. When I have forgotten to take it in the evening I have had some sleeplessness, which I never experienced before, The only other sympton really is an ache in my right foot in the evenings, maybe I dont notice it during the day, The pmr is in remission hooray, apparently about 30 per cent of suffereres have it come back, so for me the fibro I can manage and live with. I hhope this is true for you too. I lost over 3 stone by cutting out carbs and now exercise every day in hope that I can keep pmr at bay by being as fit and active as possible. Best wishes to you.

Reply

Thanks for the well wishes. I have been on amitryptripline since I had fibro in my forties. Every time I think of stopping it I miss sleeping well.

I found fibro as bad as PMR just different. I am thinking I don't have it but then time will tell.

Reply

I'm not surprised!!! PMR pain will go with the right dose of pred. Fibro pain will not. It is possible to have both. And if you have raised markers - not fibro.

And there is a major overlap between the so-called trigger points in fibro and what hurts with PMR and myofascial pain syndrome - I know, I have them. No-one suggests it might be fibro.

Reply

Hi - was the med you were prescribed called Duloxetine? I have tried gabapentin and pregabelin and been absolutely unable to sleep while taking these, so would appreciate any info!

Reply

You may also like...