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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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  • reggie92967
    reggie92967 linda82701_USA

    Posted

    I wonder at times if I'm fighting fybromylgia too. Although my Rheumatologist, quite famous man, also specializes in fibromyalgia & hasn't suggested the possibility. My bi-lateral wrist, hand, shoulder, upper arm pain/stiffness has really been reduced with prednisone, but overall body pain, feeling inflamed/body throbbing, & chronic fatigue, lack of energy, continues ?
    • EileenH
      EileenH reggie92967

      Posted

      The chronic fatigue is not necessarily helped by the pred - but it should do something about the "feeling inflamed". I know what you mean though.
  • linda82701_USA
    linda82701_USA

    Posted

    Thank you all for your responses to my post.  When I was diagnosed in January, 2015, I met all the criteria for PMR.  My Doc felt it was brought on by stress and pneumonia/flu. Never been so sick in my life and the throbbing pain in my neck, shoulders, down my armswas the worst I have ever experienced.  All the stiffness and pain places in my body, fatigue, elevated SED and CRP levels, and a fast response to prednisone pointed to PMR.  Felt like I had my life back for about 30 days.  Probably started doing too much and all of you know the rest.  But over the course of the last 15 months I continued to struggle with fatigue, pain and stiffness in all areas of my body, including tibial tendonitis in my left lower leg and severe groin, quadracepts and hip pain in my right leg.  Had a bad flare last summer and had to go back to 20 mg last August.  Have been reducing slowly since then and am down to 14 mgs.  It has taken 8 months to get that far. Finally I made an appointment to get the oppinion of a highly reputed rheumatologist in our area. The rheumy tested all the pressure points and what do you know they all were very sensitive to her touch. So I am now dealing with PMR, Fibromyalgia, severe Degenerative Disc Disease in my back, and mild Rotoscoliosis.  I have also been very sensitive to predisone and probably have had about all the side effects listed. i truly feel part of thereason I have felt so "out of it" is due to my response to prednisone. This past year has been a doosey!! But everyday is a new beginning so I am going to try the Miracle Ball Method of pain relief.  I have tried Bowen Therapy, Physical Therapy, Water Aroebics, Chiropratics, Deep Tissue Massage, the Graston Technique.  Out of all I love walking and stretching the best.  Those two things seem to help me the most.  Even though I am limited in how much I can do.  Again, thanks to all of you!! On to the Miracle

    Ball!!!wink

    • Flutterbie57
      Flutterbie57 linda82701_USA

      Posted

      Has your tibia, groin, hip pain improved ? It is fixable !!!!! I was hobbling around with the same problems over Christmas. I was going to Physio Rehab excercise classes (for a broken ankle) when my tibia, hip, groin problem began on the walking machine. After a couple of months, my Pysio admitted that she did not know what to do about it, and suggested I go try an Osteo/Chiro. My usual was away over Christmas , I was desperate and changed to a young French Osteo nearby. I had 2 treatments and had no change - I told him - he tried something different - by next morning all pain had gone and has not returned at all 2 months down the track. I can walk without pain.

      ​This young French Osteo's treatment is very different (and passive) to any other treatment I have had. He did his training about 10 years ago in France and Britain, and then moved to New Zealand. Thankyou !

      ​This is the 2nd time I have had fairly instant success from a younger, more recently trained medical person.

      ​I am still ecstatic at finding  this person, as I thought I was mobility scooter bound. I am only​ 65 !

      Hopefully the miracle ball will help relieve some of your pain.lol

    • linda82701_USA
      linda82701_USA Flutterbie57

      Posted

      What did the French osteo try with you that worked so well? My right hip and groin pain is pretty severe from time. Sometimes I cannot lift my right leg to get into my jeans or socks, or to get into the car. I have developed a new way of getting into my car. My doc says it could be bursitis. The tendonitis in my left lower leg was excruciating and really impacted my foot and ability to walk. Went to a pediatrist. Didn't really help me. The pain lasted for at least a year! Had the grass ton technique and deep tissue massage. Didn't help but hurt like heck! I am 70 and walk with a cane more for balance help now than pain. Sooo looking forward to getting the miracle ball.lol
    • Flutterbie57
      Flutterbie57 linda82701_USA

      Posted

      I laid on my back and he placed one hand/arm under my right butt (problem is on my right side like u). He then placed pressure on one point above for 20 mins or so. He did something similar with my neck too. It was all very passive. I see him again on Friday (for my reflux) so I will ask him to expain what he did.

      My right groin and hip area were really unpleasant, my tibia was really painful and the bone in my foot leading down to my third toe was excruciating. My 3rd and 4th toe were separating.Walking was really painful, so it was a major relief when all this subsided overnight, after his treatment.

      ​Three years ago (pre PMR) I had a similar problem with my second toe separating. The foot  pain was excruciating and lasted for seven months. In that time my Doctor sent me to a Podiatrist which cost me megabucks, and to a Chinese healer who had fixed my Drs own knee injury. Chinese man said my problem was very difficult to treat, it would take many, many months, and his treatment was incredibly excruciating. We shifted to another area about that time, I had to find a Chiro for a shoulder injury, she saw me hobble in and asked what that problem was. She said the problem wasn't my foot, but two thirds of the way up my lower leg, an inch or two from the centre, she massaged that spot for awhile, and ​I had no further pain​.It would not have occurred to me to tell her about my foot - Dr said it was a podiatrist problem. I so wish these people would all get their heads together, share their knowledge and we would all be better off.

      I will ask French man for details. Your problem sounds so similar to mine, so there is hope.

      ​Have fun on your ball.

       

    • linda82701_USA
      linda82701_USA Flutterbie57

      Posted

      Oh, my gosh! This does sound like my problems, too. I also have reflux. That doc sounds like a gem!
    • Flutterbie57
      Flutterbie57 linda82701_USA

      Posted

      He is a real gem. He said that Osteos in France work on organs as well as muscle/bone which is more typical here (NZ). My reflux improved for 3 days after my last treatment. I am living in hope .........
    • judy20492
      judy20492 linda82701_USA

      Posted

      Linda, Your hip sounds like mine was a couple of years ago. I went to my gp, got xrays (they couldn't finds anything). Then I went to physical therapy, after several months of more pain and no relief, I went o a Oseoarthritis Doctor that does hip and knee replacements. One look on the xray, he saw the hip joint was bone on bone. A lot of doctors and radiologists don't know what to look for. I don't think the xrays are taken at the right angle, so they don't see the bone on bone.

      Got my hip replaced, no more pain in hip and groin area.

      Good luck to you. Hope this helps.

      Judy

    • linda82701_USA
      linda82701_USA judy20492

      Posted

      Thanks for that information. I will talk to my rheumatologist about that. 

      So so many wonderful suggestions on this forum! Happy spring! Linda

      💐🌻💐

    • Flutterbie57
      Flutterbie57 linda82701_USA

      Posted

      Hi Linda, I asked the Osteo what had caused my hip/groin/tibia/foot problem, but he said there could be many different reasons for it - no 1 real answer.. Posture of the patient etc plays a big part in how he decides to go about treatment. I thought he may have been able to expain the problem so you could look into it. I sure hope you can find relief. It was no fun at all, hobbling around for months in pain.
    • linda82701_USA
      linda82701_USA Flutterbie57

      Posted

      Hello, thanks for that info. I have gone to PT who worked with me on posture, strengthening core muscles, and walking correctly. Seems I wasn't walking properly. However, my right hip, remains weak, painful,stiff and fairly immobile. Challenging isn't it!
    • linda17563
      linda17563 linda82701_USA

      Posted

      Just another thought from another Linda....the pain I have been in especially my back, seems to be "mechanical" if that makes sense....and when I look in the mirror (if I dare!) my whole posture is different to my normal....the extra "steroid weight" on my tummy has thrown me forward and I find it very difficult to relax,or keep holding it in....so what`s to do?  When I sit in a chair....I have to be bolt upright.....no fun!rolleyes
    • reggie92967
      reggie92967 linda17563

      Posted

      I hear you...I'm breathing hard bending over to tie tennis shoes. This is a 1rst for me, always was fit as s fiddle, but prednisone has played havoc with my weight & bloating !
    • linda82701_USA
      linda82701_USA linda17563

      Posted

      Very good point. I hadn't thought about the added weight in the tummy throwing my posture and balance off.  "Ain't life grand!" lol
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