Hello everyone! Well I finally got in yesterday to see my Rheumatologist. Last I wrote she had taken me from 10mg to 5mg then reduced me 1mg a week until I was zero prednisone. That started in December and was a horrible holiday full of pain and withdrawal symptoms. I have been off the prednisone now for 10 weeks. I have arm and buttocks pain daily, extreme tiredness and achy all over but it is usually not at level 10. There are times I've had pain hit me and almost make me pass out but it usually doesn't last longer than a few hours. My doctor now says I am suffering from just the fibromyalgia and the polymyalgia has gone. She says the prednisone was masking the Fibromyalgia pain so that is the pain I'm having now. I am highly doubtful as I've heard from many that pred does not help with pain unless it is PMR. I've had two Doctors tell me it does help with some people and I guess I'm one of those people. I've also been told PMR lasts at least two years and mine came on last February. I guess I could be one of the lucky ones and have it gone, if it is not then as we all know the PMR will rear it's ugly little head eventually. I did want you to know how things are going as you all have been so helpful. I really don't know what I would have done without this forum and the people who post and bear their souls to benefit everyone with this infliction. I will be reading your posts and maybe I'll be able to help a few along the way. You are a beautiful group of people and are so deeply appreciated. I pray my doctor is right and my ride with PMR is over. Thank you for all your help, you are wonderful.
It's me again...finally.: Hello everyone! Well I... - PMRGCAuk
It's me again...finally.
Hi,
I hope for your sake it’s over as well.
Take care 🌷
Thank you DorsetLady. Take care and here's to better days!
Oh klaroche! I hardly know what to say to you because you are suffering so much with pain severe enough to make you pass out.
Like you, the advice you are getting from your medics is contrary to everything I believed about the progress and treatment of PMR. My non medical guess would be that the disease is still active. Only you know what your Fibromyalgia feels like and whether this is different. A friend of mine was practically bed ridden with it and was never offered steroids to my knowledge. I don’t know if you see a Rheumatologist, I hope so. I would be seeking a second or third opinion until I was satisfied. I also pray that you get better and soon. My friend has made a beautiful garden and has recovered from Fibromyalgia completely. Stay with us and give us the benefit of your experience.
Thank you Sheffield Jane, I'm going to give it a little time and see if what she is saying is true. My pain levels for the most part are doable, it is just every few days I get unbelievable pain. I had to go to the dentist a few times for a new permanent bridge and the novacaine did not work...after five tries. Every time I go in it is the same so I just have to bear the pain, It is awful. I've never had that happen and my Rheumatologist said it could be the Fibromyalgia causing it. I still have at least three more visits and am not looking forward to them. I talked to my GP and he said I could change doctors but it would take someone new at least 6 months to a year to catch up with what has already been done. He also said my Rheumatologist is the best there is in my area. Oh well, time will tell. Thank you for all of your input, it has been appreciated. Here's hoping all of us have a pain free forever...soon!
I have heard that Fibromyalgia detrimentally effects our perception of pain. It sounds like a particularly cruel disorder.🌻
Sheffieldjane, it has not been fun. I don't really understand Fibro but I'm sure I'll learn. Have a beautiful day tomorrow and thank you.
Get a new dentist. You're dealing with so much else. Hope things improve soon.
I went to Loma Linda and had three dentists try numbing my mouth and they were not able to numb the teeth they were working on. This has happened now on three different appointments. I have to go back next week and they are going to try sealing the teeth so air doesn't get to them. I hope it works. Thank you
Sorry - pred DOES NOT mask fibro pain - it does nothing for fibro. So if being on pred helped with the pain - it wasn't fibro pain. It might not have been PMR either - but it wasn't fibro. Very very few people would be through PMR in 10 months - which makes it far more likely you still have it.
What worries me far more though is the speed at which you were taken off pred - I do hope your adrenal function is OK.
I hope so also, I did not have any backup of prednisone or I would have done tapering on my own. I was only on the Prednisone starting last August, that is when she finally diagnosed me. PMR symptoms started in February. I talked to her about slow tapering and she wanted me off out now. She gave me a prescription for Cymbalta to help with the fibro pain and hopefully that will help. I cannot take pain meds at all so I'm kind of between a rock and a hard place. I see her in two months so I guess time will tell. I'm going to ask my General practitioner to refer me to another rheumatologist for a second opinion. It will take a couple of months to get in, I'll let you know what He says. Thank you again!
I agree with all that's gone before. Perhaps it would be wise just to get a second opinion from a good rheumatologist? Let us know how you get on. X
Pred does not help my fibro pain at all and I have had that for 15plus years. I have had periods when fibro pain was enough to knock me down. You should be on some sort of regime for fibro. Amitrypiline should help. I take pain killers which don't get rid of the pain but make it manageable.
Basically your nervous system and brain are in a cycle of feedback that tells you that there is pain. It is in a constant state of the pain alarm going Off. I have found that between pain killers, stretches and manipulation of areas of pain I can help the alarms dampen a bit and confuse the gates that control the pain. If my arm Hurts I rub it as hard as I can bear. When it gets really bad I use tens machine.
Like I said the pred doesn't effect it and the pain killers for fibro don't touch pmr pain. There might be some people who get relief but because it is a feedback system rather than genuine inflammation I doubt it.
Whichever I hope you can manage the pain. Good luck.
Hi poopadoop, thank you for your information. Sadly, I cannot take pain meds due to allergic reactions. I know what you're saying is true, that is also my belief. I have had two doctors tell me that prednisone can help some people with fibro pain. I feel I still have the PMR so I'm going to get a referral to another rheumatologist, it will take me a couple months to get in so I will be posting then and let you know what He says. Take care and thank you again.
I’m fairly new to the knowledgeable forum and from all they’ve shared with me I’d say you are still a victim of PMR. New rheumatologist might be in order. Good luck to you! You should’ve have to continue with such pain!
What about trying cannabis?
Thank you, I did try it. It didn't do anything for me. Oh well, maybe something else will come along. Thanks for thinking of me. I still have PMR, Fibro and now sjogrens. I use a lot of heating pads and walking. I'm on no meds as I still cannot handle theside effects. I'm down most of the time but every now and again I have a good day and I'm on Cymbalta which helps me quite a lot with thezingers from the fibro. I'm now 2 years into it and not really getting anywhere. Thank you again and take care. 💕
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