Just been diagnosed with Fibromyalgia besides havingPMR
Posted , 13 users are following.
My GP diagnosed me with PMR January, 2015 and started me on 20 mg of prednisone. Have had an up and down journey with prednisone , pain and stiffness. Last week I saw a rheumatologist for the first time. She diagnosed me with fibromyalgia as well as PMR, because of my ongoing pain and stiffness. I am very confused. I thought my pain and stiffness was due to repeated use of my arms. She thinks my PMR is well controlled by the prednisone and my problems are due to fibromyalgia . My pain and stiffness is in the areas associated with PMR. So confusing! Any thoughts would be welcome. Am on 14 mg prednisone and dropping by 1 mg a month to get to 10 mgs. Anyone else have both? How do you know which is which? How do you dope? Thanks...Linda😜
0 likes, 104 replies
Flutterbie57 linda82701_USA
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It isn't easy and a lot of the time I am confused. I used to go to an Osteopath about every 3 months, or have a massage, for the Fibro. I have not tried it since the onset of PMR.
I can't believe I have now sufferd from Fibro pain for 20 years. You just learn to readjust to whatever you have. It was difficult at first, but it eventually becomes the new norm. When I first started on Pred I did go through 4 days of Euphoria when it masked my Fibro pain as well. It took me a couple of months to forget those 4 amazing days.
It sounds like you have good medical care, so hopefully they will help you cope, and on days when you are down, there is always someone on this site who will understand how you do feel.
linda82701_USA Flutterbie57
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linda17563 linda82701_USA
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I have scoliosis (back curvature) which has made things worse lately....to a point I couldn`t take any more....the doctor gave me a steroid injection which did nothing....but that is now slowly easing..I am waiting for an appointment with Rheumy, and I know how it will go....she will offer me again....Methotrexate.....to get me off steroids. Have had several flares, but not everyone does......it`s a minefield really, and we are all different...it shocks me sometimes just how much some people with PMR can do....and others practically nothing....
Like Flutterbie.....when I first went on steroids it was wonderful....but alas it dosen`t last!
Keep looking on the website ansd post any questions....they have been of enormous help to me....especially Eileen....
The sun is out today here in the Uk...makes us all feel a bit better...hope it is for you too in the USA!
Flutterbie57 linda82701_USA
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EileenH Flutterbie57
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linda82701_USA Flutterbie57
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linda82701_USA linda17563
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Flutterbie57 EileenH
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If it is PMR the pain will not ease at all.
This is my most treasured posession. It goes everywhere with me and has saved my sanity over the years. I can ease my own suffering to some extent when I need it.
linda82701_USA Flutterbie57
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grandmaDylan Flutterbie57
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Anhaga grandmaDylan
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Flutterbie57 linda82701_USA
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Flutterbie57 grandmaDylan
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FlipDover_Aust linda82701_USA
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linda82701_USA FlipDover_Aust
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linda82701_USA FlipDover_Aust
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Flutterbie57 FlipDover_Aust
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FlipDover_Aust linda82701_USA
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I'm no expert, but my understanding is that you can become 'pred resistant', and it no longer is the magic pill it used to be. I was taking 20mg and feeling worse than ever. Eg stiffness, pain, depression, fatigue etc. My GP got me an emergency appointment with a rheumy and he convinced me that methotrexate would help. I was very skeptical, but decided it couldn't be much worse!
I started a post a little while back that might help.. try looking here
https://patient.info/forums/discuss/my-experience-with-methotrexate-and-the-auto-immune-protocol-diet-or-the-worse-than-paleo-diet--501840
Let me know if you have any further questions, I'm happy to help!
FlipDover_Aust linda82701_USA
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https://patient.info/forums/discuss/-things-are-going-to-be-be-pretty-awful-for-you--489879
linda82701_USA FlipDover_Aust
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FlipDover_Aust linda82701_USA
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linda82701_USA FlipDover_Aust
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EileenH linda82701_USA
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About a third of patients may be "resistant" to pred from the start - it may be severe or it may be that they just need a slightly higher dose to get the same effect. It's all to do with the way the body metabolises the steroid and MTX can change that, so that you get more effect for the same dose - and so some people can manage on a lower dose. I got a pretty good result with prednisolone, which is what I started on, when I was switched to Medrol I knew from the start it didn't work the same for me and I steadily had to increase the dose to get the same effect. Eventually I was on 20mg, taken at night and it didn't have any effect until late morning - if I took it in the morning it did nothing until early evening which wasn't very practical. I went from 20mg Medrol on one day that did nothing to 15mg of a form of prednisone the next - with the PMR miracle. I didn't need MTX - I just needed a different sort of corticosteroid. Sometimes it isn't even the substance - sometimes it is the substances the manufacturer uses to "fill" the tablets so they can manufacture them, and that is why for some people one make of a drug works but others don't.
It may be you could reduce further if you used a slower reduction plan - that has worked for a lot of people. Or it may be the underlying illness is still very active and so you need a higher dose. Or you may be resistant. Or you may have something else altogether. No-one can really tell.
linda82701_USA EileenH
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FlipDover_Aust linda82701_USA
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EileenH FlipDover_Aust
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FlipDover_Aust EileenH
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I reduced over 5 days to zero and the very next day I was sooooo ill. Nausea and head spins.... falling over dizzy... awful stuff. I was away in the caravan and didn't have any Lyrica with me so had to put up with the withdrawals for two days. When I got back a couple of days ago I got a prescription and then to the chemist straight away and I scoffed a couple down asap.
Still felt awful yesterday but in a different way, and took my dose as normal last night only to discover that the DR had written out the prescription for a different dose - I'd take nearly 4 times what I'd been on before I tried to reduce! No wonder I'm off my face, twitching and jerking, head zaps, and unbalanced.
What a mess! Honeslty, I'm such an idiot sometimes.... I've been feeling so well for a few weeks! Why did I mess with the drugs? Kill me!
linda17563 FlipDover_Aust
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EileenH FlipDover_Aust
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Google "lyrica withdrawl symptoms duration" and mentalhealthdaily has a very good article. They say
"Many people experience an array of uncomfortable symptoms when they initially discontinue this drug. There is significant evidence of withdrawal effects, especially if a person has used the drug for a long period of time. Most doctors should know to have their patients conduct a gradual taper off of the medication to reduce severe withdrawal effects. ...
...Unfortunately many doctors aren’t even aware that there are withdrawal symptoms associated with Lyrica. This leads to them telling patients that it’s fine to discontinue the drug “cold turkey.” Those who quit the drug abruptly or “cold turkey” tend to have longer lasting withdrawals with more severe symptoms than those who conduct a gradual taper. Therefore, it is always recommended to follow some sort of tapering protocol when you plan on quitting."
May I suggest taking a printout to your doctor for some bedtime reading! And she should have told you she was changing the prescription.
First do no harm - that's what she signed up to!
FlipDover_Aust linda17563
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linda17563 FlipDover_Aust
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