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Just been diagnosed with Fibromyalgia besides havingPMR

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linda82701_USA
linda82701_USA

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😜

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  • Flutterbie57
    Flutterbie57 linda82701_USA

    Posted

    I have had PMR for a year and Fibro for about 20 years. I have learned to deal with my Fibro pain over the years by using a 'miracle' ball I bought from USA which helps relieve muscle tightness and stress. This does not give any relief at all for PMR pain.  This helps me figure out which problem is flaring up. I also check a couple of Fibro pressure points which are usually  the first to flare up as well - the points on the sides of my knees and those on my forehead.

    ​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.

    • linda17563
      linda17563 linda82701_USA

      Posted

      What Flutterbie has written above I can echo myself with how many years I have had Fibro, and PMR now Four half as well.....it surprises me sometimes, just how much pain we have to endure....and how we do! The Fibro website shows the "tender points" 

      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!smile

    • Flutterbie57
      Flutterbie57 linda82701_USA

      Posted

      Not sure if I can put it on here. It is an elaine petrone miracle ball. It is just the right size, not too hard, not too soft.
    • EileenH
      EileenH Flutterbie57

      Posted

      Found it no bother with google - did you got to classes or just get it?
    • linda82701_USA
      linda82701_USA linda17563

      Posted

      it is beautiful here in Oregon today, too!  And you are right the wonderfulness of prednisone didn't last!  Probably because other things were at play in my body and I didn't know how to deal with PMR.  AND what a gift Eileen is to all of us!!biggrin
    • Flutterbie57
      Flutterbie57 EileenH

      Posted

      I didn't go to classes and I havn't even read the book of instructions yet (naughty). It can be painful to use, but it is worth it. Ideally I like to spend a half hour a day on it, working it along my spine. You will instantly know which areas need it longer. Pain will gradually ease in a few minutes. I have good days when I don't need it and I have really bad days when I sometimes use if for approx an hour morning and night.

      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
      linda82701_USA Flutterbie57

      Posted

      Have you tried or used cups or cupping therapy? I have a set. Takes a couple of days to feel relief. It, too, hurts when the cups are first applied. Then the pain lessens as they are left on.
    • grandmaDylan
      grandmaDylan Flutterbie57

      Posted

      I have had fibro for about 14 years now and was diagnosed with pmr in march 2015. I asked my then gp to refer me to a rheumatologist but he refused. Sadly he died last November and since then I haven't seen the same gp since. Several weeks ago I asked a locum gp for a referal she also refused. I was getting very down with all the pain I was in, I also have osteoarthritis in both knees and hips and am waiting for for a total knee replacement so went back to the doctors and saw yet another locum who was lovely and said I'm referring you to a rheumatologist incase its the fibro causing the horrible knee pain. I got an appointment letter a week later with an appointment for mid may! Strange how a doctor in the same surgery can be proactive when I have been asking for this for amost a year.
    • Anhaga
      Anhaga grandmaDylan

      Posted

      So glad your persistence has paid off. I hope your appointment does lead to some effective treatment.  You've had to wait so long. 
    • Flutterbie57
      Flutterbie57 linda82701_USA

      Posted

      No I havn't heard of the cupping therapy. When you do get your ball, put on some relaxing music,and just lay down and hopefully get some relief. (the lazy way)
    • Flutterbie57
      Flutterbie57 grandmaDylan

      Posted

      Go Gran ! I do hope you get some answers and some help/relief from the Specialist. I don't understand why some Dr's are so reluctant to send patients on to a Specialist. Our perfect Dr would be one who suffers from our same problems, althought I suspect they wouldn't have the energy to continue working confused​ from Grannie
  • FlipDover_Aust
    FlipDover_Aust linda82701_USA

    Posted

    I was diagnosed with PMR in Dec 2014 and had some good improvements, but by December 2015 I was a mess.  Rheumy thought I might have fibro too, so I started on Lyrica - but the dramatic improvement has been through taking Methotrexate and dropping my pred dose - which was sitting around 20mg a day... and I couldn't get it down. Turns out it might have been the pred causing the problem rather than 'curing' it!
    • linda82701_USA
      linda82701_USA FlipDover_Aust

      Posted

      Could you explain how prednisone might have been the culprit and how methotrexate has helped.  Thanks....
    • Flutterbie57
      Flutterbie57 FlipDover_Aust

      Posted

      I am looking forward to your reply to Linda USA as I am having trouble getting below 10mg. I am now having other pred related problems so I now need to do a little more research at how to overcome the next phase.
    • FlipDover_Aust
      FlipDover_Aust linda82701_USA

      Posted

      Hi Linda (and Flutterbie!),

      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!

       

    • EileenH
      EileenH linda82701_USA

      Posted

      About 1 in 6 patients diagnosed as having PMR originally later have their diagnosis revised, very often to LORA (late onset RA) and MTX is the first line drug for RAand several other forms of inflammatory arthritis. They would obviously be more likely to respond to MTX. It isn't the doctor "got it wrong", they can present in such similar ways at the beginning that no-one could tell - none of them have specific tests that say 100% this is what you have. And as I explained before, PMR is just the name for the symptoms caused by another underlying illness - and may have difference mechanisms of causing the pain and stiffness. Pred only works so well for the PMR we discuss here.

      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
      linda82701_USA EileenH

      Posted

      Thank you so much for your information. This is hard to manage, isn't it?!
    • FlipDover_Aust
      FlipDover_Aust linda82701_USA

      Posted

      I'm going off Lyrica this week to see if it was helping or not - I started taking it at the same time I started MTX, so it will be interesting to see if I have 'fibro' pain.... could be a fun weekend - not! lol
    • FlipDover_Aust
      FlipDover_Aust EileenH

      Posted

      Well that has been an unmitigated disaster! I checked with my GP about dropping Lyrica and she said it would be fine - no side effects.

      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!

    • EileenH
      EileenH FlipDover_Aust

      Posted

      Naughty GP - no side effects stopping Lyrica eh?

      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
      FlipDover_Aust linda17563

      Posted

      so much better today after taking the correct dose last night... I'll be having words with my GP when I see her next week!
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