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Anyone taking Lyrica? what dose?? Also Carnitine deficency..

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  • #1

    Anyone taking Lyrica? what dose?? Also Carnitine deficency..

    HI All!
    My Rheumy gave me a prescription for Lyrica to help with the Polymyalgia pain and the problem that the higher dose of Prednisone is causing with my sleep.
    He told me to take 1-4 pills at night (they are 50mg. each). I tried 2 the first night and I was awake most the night.....SO last night I took 4......and was out most of 12 hrs! Tonight I'll try 3....I hope that's the happy medium!
    I'm also dealing with a Carnitine deficiency. My body isn't absorbing Carnitine and it's making me very weak and achy. SO I'm taking supplements for that but have read the body doesn't absorb ALL the Carnitine you eat so it takes a while to get built back up. Has anyone else ever had that problem?? If so, what did you do for it?? And how long did it take to get built back up?? All of these health issues are driving me nuts!
    Thanks all for your support and advise on this site....It's great! Roxie

    Double Spinal Cord Stimulator surgery 8/09
    Unsuccessful MiniArc sling surgery 12/07
    Dx'd Hypothyroid
    Dx'd Chronic Axonal Neuropathy & Myopathy
    June 2007
    Dx'd IC May 2006 (after suffering for 25+ yrs!)
    First Cysto 1979
    First Hydro 1981 (Many treatments since then!)
    Collagin"Durasphere" injections for urethra
    Gall bladder surgery Aug. 2004
    Gastric Bypass Dec. 2004
    Dx'd: Barrett's Esphogus July 2004
    Dx'd: Vaginal Atrophy 2005
    Bladder surgery 2000
    Dx'd: IBS 2000
    Hysterectomy (fibroids) 1999
    Laminectomy 1989
    Dx'd: Degerative Disk Disorder 1989

    For IC I use Elmiron, Elavil and Freeze dried Aloe Vera (it works likes Elmiron, but naturally)and Azo as needed. I also take Zegerid, Randitine for Barrett's Esophagus. (which causes me to have constant yeast infections!)I take Cymbalta for Neuopathy/Myopathy pain. I use the Climara patch for menopause symptoms. I'm on a very strict diet because of the IC, IBS and Gastric Bypass. I take Primal Defense Probiotics and whole food Iron.
    I no longer have the awful urethral pain! I've been using MSM gel now for 4 mo. and haven't had a flare up or the urethra pain.....it's amazing stuff!!:woohoo:
    Tags: None
  • #2
    I take 150mg of Lyrica, twice a day. It helps my fibromyalgia pain immensely, and also reduces shooting pains from my bladder. Hope it helps you!!
    ****
    Jen

    *Diagnosed with severe IC in 2004
    *Also diagnosed with PFD, fibromyalgia, chronic myofascial pain, IBS, migraines, allergies/asthma, dermatographism
    *Kept trying a million different treatments for all these things until I found what works, and I am doing okay these days with the help of a cocktail of medications and the InterStim, which was first placed in 2007. [I have had 2 revisions - one in 2010 when my battery died and had to be replaced, and one complete replacement (lead and generator) in 2012 after a fall on my stairs caused my lead to move.]
    *Current meds include Atarax (50mg at night), Lyrica (150mg twice a day), Xanax (0.5mg at night and as needed), Zanaflex (4mg at night), hydrocodone (10/325, every 6 hours as needed), Advair, Nasonex, Singulair (10mg at night), oral contraceptives, home instills containing Elmiron and Marcaine (as often as I need to do them).

    **I am not a medical authority nor do I offer definitive medical advice. I strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.

    Comment

    • #3
      HI! WOW 150mg....twice a day. I'm going to try 150mg tonight to sleep. 200mg knocked me out for 12 hrs! LOL probably the best night's sleep I've had in a long time....but I'm still feeling the effects this afternoon! lol I feel groggy.
      I'm going to try to use this med tho since it's suppose to help with nerve pain and that's what I'm having with the Polymyaglia. It's the pits!
      Thanks for writing! Roxie

      Double Spinal Cord Stimulator surgery 8/09
      Unsuccessful MiniArc sling surgery 12/07
      Dx'd Hypothyroid
      Dx'd Chronic Axonal Neuropathy & Myopathy
      June 2007
      Dx'd IC May 2006 (after suffering for 25+ yrs!)
      First Cysto 1979
      First Hydro 1981 (Many treatments since then!)
      Collagin"Durasphere" injections for urethra
      Gall bladder surgery Aug. 2004
      Gastric Bypass Dec. 2004
      Dx'd: Barrett's Esphogus July 2004
      Dx'd: Vaginal Atrophy 2005
      Bladder surgery 2000
      Dx'd: IBS 2000
      Hysterectomy (fibroids) 1999
      Laminectomy 1989
      Dx'd: Degerative Disk Disorder 1989

      For IC I use Elmiron, Elavil and Freeze dried Aloe Vera (it works likes Elmiron, but naturally)and Azo as needed. I also take Zegerid, Randitine for Barrett's Esophagus. (which causes me to have constant yeast infections!)I take Cymbalta for Neuopathy/Myopathy pain. I use the Climara patch for menopause symptoms. I'm on a very strict diet because of the IC, IBS and Gastric Bypass. I take Primal Defense Probiotics and whole food Iron.
      I no longer have the awful urethral pain! I've been using MSM gel now for 4 mo. and haven't had a flare up or the urethra pain.....it's amazing stuff!!:woohoo:

      Comment

      • #4
        I too tested low for carnitine. My doctor recommended a supplement to take, but I haven't tried it yet. She said some of her patients find it helpful for fibro pain. I asked my neurologist about it, and he just shook his head, like he had never heard of this and said it was on the outer fringes of medicine. So, I don't know what to say about it. I also do not absorb B12 or iron from my diet. I have to supplement both, with shots and iron capsules.

        Diana.

        Comment

        • #5
          Also, I take Lyrica for sleep. I'm very sensitive, and find that 50 mg is plenty for me, I take it in the evening and it relaxes me. I used to think it made my bladder worse, and now I'm not sure that it's true. If I'm having a fibro flare, it helps just a bit with the body pain, but not much, since it's a very low dose.

          Diana.

          Comment

          • #6
            HI Dminton,
            I"m taking supplements for the lack of Carnitine. I'm not sure why my body isn't absorbing it normally....but hope to find out. I also have to take whole food type iron because my body doesn't absorb that normally either. I'm seeing another Rheumatolgist tomorrow morning and want to ask him about all that.
            I'm taking Lyrica 50mg now.....twice during the day for nerve pain and 2 pills at night to help me sleep thru the night. So far it's helping with my pain but I feel drowsy during the day.
            My dr. thinks I have Polymyalgia Rheumatica.....but I'm getting a 2nd opinion for that.....and also he thinks possibly Giant Cell Ateritis.......UGH! always something! Take care......Roxie

            Double Spinal Cord Stimulator surgery 8/09
            Unsuccessful MiniArc sling surgery 12/07
            Dx'd Hypothyroid
            Dx'd Chronic Axonal Neuropathy & Myopathy
            June 2007
            Dx'd IC May 2006 (after suffering for 25+ yrs!)
            First Cysto 1979
            First Hydro 1981 (Many treatments since then!)
            Collagin"Durasphere" injections for urethra
            Gall bladder surgery Aug. 2004
            Gastric Bypass Dec. 2004
            Dx'd: Barrett's Esphogus July 2004
            Dx'd: Vaginal Atrophy 2005
            Bladder surgery 2000
            Dx'd: IBS 2000
            Hysterectomy (fibroids) 1999
            Laminectomy 1989
            Dx'd: Degerative Disk Disorder 1989

            For IC I use Elmiron, Elavil and Freeze dried Aloe Vera (it works likes Elmiron, but naturally)and Azo as needed. I also take Zegerid, Randitine for Barrett's Esophagus. (which causes me to have constant yeast infections!)I take Cymbalta for Neuopathy/Myopathy pain. I use the Climara patch for menopause symptoms. I'm on a very strict diet because of the IC, IBS and Gastric Bypass. I take Primal Defense Probiotics and whole food Iron.
            I no longer have the awful urethral pain! I've been using MSM gel now for 4 mo. and haven't had a flare up or the urethra pain.....it's amazing stuff!!:woohoo:

            Comment

            • #7
              Hi Roxie,

              Please let us know what the rheumatologist says! Also, I wonder what the connection is between esophagitis and yeast? And, congratulations on the MSM gel. I keep thinking I am going to order some. Do you get it from Jacob Labs? How do you use it? Is it just for the urethral pain, or for vulvar pain also?

              Diana.

              Comment

              • #8
                Roxie,

                I take 150 mg of Lyrica 2-3 times a day. It does not help with sleep so I also have to take 10mg of regular Ambien at bedtime. The Lyrica does help with some of my Urethral pain. On a bad day however, it doesn't help. I am pretty happy with all other aspects of it.

                I hope you do well with it!

                Kara
                Complex Case: Severe IC 1999, Interstim 2001, Endometriosis 2001, End Stage Refractory IC 2002, Bladder Removal (Cystectomy) 2002, Gall Bladder Removal 2005, Infertility 2003, Urethra Removal, Bladder Reconstruction (Urethrectomy/Indiana Pouch) 2006, Celiac Disease 2007, Adhesion Disease 2007, Pudendal Nerve Entrapment, Ovarian Cysts, Vestibulitis, Vulvodynia, Total Vestibulectomy and removal of both Skene's Glands, 2007 and Coccydynia 2007. Fibromyalgia and, Chronic Myofascial Pain Syndrome both in my neck and knees, 2007, PNE Decompression Operation May, 2009.Multiple Chemical Sensitivities, Anesthesia Awareness (to awaken during operations)Pudendal Nerve Decompression Surgery, Revrse Uterine Sling, Sept. 2011

                "One hour at a time, this was NOT my American Dream but it has to work out somehow."

                I also have some journals of my journeys, past and some present at:
                http://karasnewblog2008.blogspot.com/ and http://icnkaralynn.blogspot.com/

                Most of my Journaling now is currently on Facebook. These are old and my ICN Patient story is very old and outdated.

                Comment

                • #9
                  HI Kara!
                  Thank you!
                  The Lycria is helping with the pain I've been having. My dr. told me to take 1 50mg pill in the morning and one at lunch......and 2 at bedtime.....so far so good. Nothing else was touching the pain. They don't help that much with sleeping.....but I can't take Lunesta with the Lycria......so I suffer through.
                  Ambien actually keeps me awake......wish it didn't. Thanks again Kara, Roxie

                  Double Spinal Cord Stimulator surgery 8/09
                  Unsuccessful MiniArc sling surgery 12/07
                  Dx'd Hypothyroid
                  Dx'd Chronic Axonal Neuropathy & Myopathy
                  June 2007
                  Dx'd IC May 2006 (after suffering for 25+ yrs!)
                  First Cysto 1979
                  First Hydro 1981 (Many treatments since then!)
                  Collagin"Durasphere" injections for urethra
                  Gall bladder surgery Aug. 2004
                  Gastric Bypass Dec. 2004
                  Dx'd: Barrett's Esphogus July 2004
                  Dx'd: Vaginal Atrophy 2005
                  Bladder surgery 2000
                  Dx'd: IBS 2000
                  Hysterectomy (fibroids) 1999
                  Laminectomy 1989
                  Dx'd: Degerative Disk Disorder 1989

                  For IC I use Elmiron, Elavil and Freeze dried Aloe Vera (it works likes Elmiron, but naturally)and Azo as needed. I also take Zegerid, Randitine for Barrett's Esophagus. (which causes me to have constant yeast infections!)I take Cymbalta for Neuopathy/Myopathy pain. I use the Climara patch for menopause symptoms. I'm on a very strict diet because of the IC, IBS and Gastric Bypass. I take Primal Defense Probiotics and whole food Iron.
                  I no longer have the awful urethral pain! I've been using MSM gel now for 4 mo. and haven't had a flare up or the urethra pain.....it's amazing stuff!!:woohoo:

                  Comment

                  • #10
                    Carnitine

                    I have just been given 500mg Carnitine. I have to take most things transdermaly in olive oil. This won't dissolve in olive oil but does in water. Wondering if I should risk it and just swallow the capsule. Too depleted to be very experimental. I am down from 130 to 98 lbs. I am now trying nystatin in olive oil and progesterone also in olive oil. Have estriol but haven't tried it. Now need thyroid medicine too for being hypo. Really low in folic acid. Taking folate mixed with sterile water, one drop under tongue. Also anemic but can't take a supplement for that yet. Anyone just swallowed Carnitine?

                    Comment

                    • #11
                      HI enip41,
                      I take Carnitine, 500mg also and I'm hypothyroid and have no problem with the Carnitine. I can't take folic acid.......it sets my bladder on end! I was anemic but couldn't take any of the iron meds the dr. recommended......but then my friend told me to try "Blood Builder" by Mega Foods. It's Cold Fusion Food state which is better than the others. So you might try that when you get ready for Iron.
                      Good luck to you!

                      Double Spinal Cord Stimulator surgery 8/09
                      Unsuccessful MiniArc sling surgery 12/07
                      Dx'd Hypothyroid
                      Dx'd Chronic Axonal Neuropathy & Myopathy
                      June 2007
                      Dx'd IC May 2006 (after suffering for 25+ yrs!)
                      First Cysto 1979
                      First Hydro 1981 (Many treatments since then!)
                      Collagin"Durasphere" injections for urethra
                      Gall bladder surgery Aug. 2004
                      Gastric Bypass Dec. 2004
                      Dx'd: Barrett's Esphogus July 2004
                      Dx'd: Vaginal Atrophy 2005
                      Bladder surgery 2000
                      Dx'd: IBS 2000
                      Hysterectomy (fibroids) 1999
                      Laminectomy 1989
                      Dx'd: Degerative Disk Disorder 1989

                      For IC I use Elmiron, Elavil and Freeze dried Aloe Vera (it works likes Elmiron, but naturally)and Azo as needed. I also take Zegerid, Randitine for Barrett's Esophagus. (which causes me to have constant yeast infections!)I take Cymbalta for Neuopathy/Myopathy pain. I use the Climara patch for menopause symptoms. I'm on a very strict diet because of the IC, IBS and Gastric Bypass. I take Primal Defense Probiotics and whole food Iron.
                      I no longer have the awful urethral pain! I've been using MSM gel now for 4 mo. and haven't had a flare up or the urethra pain.....it's amazing stuff!!:woohoo:

                      Comment

                      • #12
                        Thank you, I'll try taking the capsule.

                        For folic acid I take leucovorin 400MCG drop sublingual. I get it sent to me from a compounding pharmacy in Cleveland called Lee Silsby. One drop under my tongue is okay I think.

                        Comment

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