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  • #16
    Thanks for all the input.
    I think Tamaral is Ultram. I don't think I'll be taking another of those. Last night I took a flexiril and it seemed to help a little to relax the muscles. I used to be on Lyrica for pain, but it made me horribly stoned and I gained over 20 pounds in a few short months. I couldn't think clearly. I didn't like that.
    I called my PCP, who referred me to a Rhumetologist. I couldn't get an appointment until March 29! The receptionist said to call back a few times a week to see if there were any cancellations earlier. I'll do that.

    I see my new Urogynecologist on Tuesday, Feb. 27, so maybe I can get some explainations there also.

    Luckily, I work for a physical therapist, so he will try some things to relieve the pain before I leave work today. I hope it helps.
    KK
    Hopekeepers Support Group Leader

    Diagnosed IC 1/07/04
    Fibromyalgia, IBS, PFD, Urethral Instability, GERD, Chronic Unexplained Pelvic Pain for most of my life


    Remember, all is not lost as long as we keep our sense of humor!

    Comment


    • #17
      Well, I went to the rhumetologist on Monday. He said I have fibromyalgia and gave me a script for Neurontin. I read the side effects and decided it was too much like Lyrica (I had a horrible experience from it) and I don't want to take it.
      I want to try other options first. The physical therapist that I work for doesn't understand how he concluded that I have fibro just from my history and the trigger points. Could it be something else???? I'm so confused! I was happy to have a name put to the constant aching so that I could move forward on to easing the pain. I think my boss just doesn't understand fibro.

      I took home a "survival guide" for fibro and myofascial pain that we had at work. I want to read it and see what can be done before resorting to daily pain meds. I don't mind taking something when it's really flaring up, but I don't want to be on something daily that will make me fat, groggy and forgetful like the last one.

      Any help would be great!
      Thanks,
      KK
      Hopekeepers Support Group Leader

      Diagnosed IC 1/07/04
      Fibromyalgia, IBS, PFD, Urethral Instability, GERD, Chronic Unexplained Pelvic Pain for most of my life


      Remember, all is not lost as long as we keep our sense of humor!

      Comment


      • #18
        Originally posted by PenguinK
        We got another 4 inches of snow today. This isn't helping me. I hope that it warms up soon and that this all goes away then. Am I crazy for hoping that?KK
        NO, I do not think you are crazy for thinking that. For one thing, low pressure has been shown to have an effect on people with joint problems. For another thing, there's growing evidence that a lot of people who have RA, fibro, or other joint pain diagnoses, are very low in Vitamin D. So, in the summer, when the sun is shining, we absorb a lot of our Vitamin D from the sun; in the winter, we obviously get much less. My mom has RA and her doctor has her on megadoses of Vitamin D, but my doctor says it's safe for anyone to supplement up to 400 mm/day. There's a nice calcium/D/Aloe supplement from Desert Harvest that is available on the ICN shop site, I think. You could try it and see if it helps at all. My mother is also unable to tolerate her tramadol, so she really suffers. I feel for you.
        Je vous souhaite de la joie, de la bonne santée, et tout ce qu'il y a de bon dans la vie.
        Wishing you happiness and good health, and all the best out of life.

        Peace, Carolyn
        ___________________________________________________

        Laura (11), Susannah (12 1/2) and Maman (that's me!), North Wildwood NJ, September 2007


        On the Beach with IC

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        • #19
          KK,
          I spoke to my uro a few days ago about switching from Lyrica to something else for my fibro because I don't like some of the side effects, and he said the only other option is neurontin, but those side effects are worse!! So, I am going to just drop the Lyrica altogether and just hope that I don't feel worse.

          I guess you could have something other than fibro, but I was diagnosed on fatigue, aches, and the tender points test.

          Good luck!

          Good luck finding a good med combination.

          ~Claudia

          "A heart is not judged by how much you love; but by how much you are loved by others."
          ~ The Wizard of Oz

          "If I ever go looking for my heart's desire again, I won't look any further than my own
          back yard. Because if it isn't there, I never really lost it to begin with!" ~ Dorothy


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          • #20
            I have been having pain in the muscles from head to toe. I told my doc but he just over looked it. I think I am going to have to mention it again. Normally I would take 600mg of motrin that he gave me for IC pain. but I have on the waiting list for a hydro. and don't want to get bumped because I took it. Today I tood extra strength tylenol and that took the edge off. Didn't really know others felt this way to. Hope you all feel better soon.
            Interstitial Cystitis Stomach problems
            diastolic dysfunction
            vascular insufficency of left leg
            pelvid floor disorder
            hypothroidisim
            asthma
            bread cancer - 5yrsl. remission
            swollowing difficulty
            fatigue
            lots of doctors
            lots of med.














            Keep your eyes on the Lord and he will direct your paths.

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            • #21
              I started a low dose of Lyrica 2 days ago and I think it is making my flare worse! Has anyone ese experienced this? .............I'm going crazy trying to figure out what is going on!
              Mel


              IC, PFD, IBS, Allergies, Chronic Migraines, CVID, Fibromyalgia, CFS, Numerous Laporoscopies for Endometriosis and Adhesions, Hysterectomy 2002

              Comment


              • #22
                I went to a Rhumetologist on Monday. He listened to my history and symptoms, did a trigger point test, (OUCH!) and said "here's some Neurontin. See you in 3 months."

                I actually had to ask "what do you think it is?" before he said "You have fibromyalgia." That was it. Keep exercising and doing yoga and take these pills. Did I mention that I told him I had a horrible reaction to Lyrica, the same as Neurontin. I'm not taking them. I don't know what I'm going to do. I will be looking for a new doctor, though.
                KK
                Hopekeepers Support Group Leader

                Diagnosed IC 1/07/04
                Fibromyalgia, IBS, PFD, Urethral Instability, GERD, Chronic Unexplained Pelvic Pain for most of my life


                Remember, all is not lost as long as we keep our sense of humor!

                Comment


                • #23
                  Hi kk,
                  I took neurontin about 5 years ago for fibro and I think it helped although I don't remember if it actually helpd my IC enough to make a difference. I had to slowly increase to 300 mg. I tolerated it well. The night dose would make me sleepy. My morning dose stayed at 100 mg. There came a time that I decided to go natural and stopped all meds. A few years later when things got bad again my dr put me on it but I coulfn't tolerate it. It made me dizzy and weird for the entire day and then some. The side effects were just too much to handle so I had to stop. I guess my body changed. I tried a low dose of Lyrica and although I didn't have those horrific side effects I decided to stop it til I pinpoint where the flare came from. Who knows, you may be able to tolerate the neurontin at a low dose. Build up gradually. Just because you reacted to the Lyrica doesn't mean that you will react to the neurontin.
                  Good luck with whatever you decide.
                  Mel


                  IC, PFD, IBS, Allergies, Chronic Migraines, CVID, Fibromyalgia, CFS, Numerous Laporoscopies for Endometriosis and Adhesions, Hysterectomy 2002

                  Comment


                  • #24
                    All-
                    One of the most dramatic changes for me has been hormone therapy...after 6 years on the same pill, I am now off and using a small dose of hormone therapy. I amseeing a very good specialist. That was a month ago...my join pain and aches that had plagued me for a year are now completely GONE. I had a major estrogen and testosterone deficiency...but I am SO much better now.
                    Some docs refuse to believe hormonal issues can happen to young women- after all, I'm only 30. But I had major achingin my body- getting of the pill and HRT have helped me so much.
                    I still struggle with urgenc/frequency, but my nocturia and pelvic pain are a thing of the past. And sleep is back!

                    Comment


                    • #25
                      Hi Cosette,

                      I too was helped by HRT. I use a low dose estrogen patch but still feel that I need the testosterone. I went to an alternative dr who had me try a testoterone cream to rub in but I really haven't noticed any help from it.
                      I was thinking of discussing taking a pill. Most drs hate to prescribe that. How do you take the testosterone? I know there is also some type of tiny metal implant that is put right under your skin on your arm.

                      I also tried a progesterone cream but it made me sick and gave me stomach pain so we eliminated it. It wasn't that much of an issue due having a hysterectomy.
                      Mel


                      IC, PFD, IBS, Allergies, Chronic Migraines, CVID, Fibromyalgia, CFS, Numerous Laporoscopies for Endometriosis and Adhesions, Hysterectomy 2002

                      Comment


                      • #26
                        There's a fairly cheap fibromyalgia treatment you could consider that doesn't need a doctor's supervision called the 'Guaifenesin protocol'. After 20 years of fibro it's the only thing that's helping me, although it takes a lot of determination. Details are on www.fibromyalgiatreatment.com

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                        • #27
                          Eccles, I am gald that it helped you. I tried it several years ago and it did nothing.
                          Mel


                          IC, PFD, IBS, Allergies, Chronic Migraines, CVID, Fibromyalgia, CFS, Numerous Laporoscopies for Endometriosis and Adhesions, Hysterectomy 2002

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