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  1. #1
    Angel watching over us verdicries's Avatar
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    Lyrica now approved for Fibro

    i just read that Lyrica has now been fda approved for fibro pain...interesting. and now a lot of other big labs are working on pain meds as well. i wish they'd put their money into figuring out what CAUSES it! if we can find the underlying CAUSE, we can maybe erradicate it?? or at least TREAT it better! don't just blindly throw drugs at us...grrrrrrrrr.

    here's the article:
    http://news.yahoo.com/s/nm/20070621/...L7pR7DLILVJRIF

    anyways, i've never tried lyrica...maybe i will?
    (Added by ICNMgrJill on 5/19/08. I am sad to share that Verdicries (aka Tracy) lost her life in a tragic accident just a few days ago. We will miss her support, her encouragement, her sense of humor and, of course, the joy that she found as a mother and wife).

    Tracy ~ 29 years old with Toxoplasmosis (from birth), Fibro/CFS (since age 13...ouch), severe IC, IBS-D, severe PFD (surgery made it even worse), vulvodynia, hiatal hernia, GERD, ulcers, severe gastritis, numbness/tingling in extremeties, pelvic nerve damage--mainly urethral, urinary retention, pelvic reconstruction 7.10.07 (fixed rectocele, rectal prolapse, lifted bladder, urethra, uterus, and repaired vaginal walls), Raynaud's, 2 severely herniated discs in neck and one in low back, anemia, PCOS, anxiety/depression/panic attacks (since forever). Still having major bowel problems (inability to empty rectum...any ideas?? ).

    I'd like to be on House, MD as a medical mystery.

    Married to Craig, a saint amongst men...who puts up with me and my eccentricities...

    Connor & Mommy by the tree:


    Connor with Santa...so happy!


    I take: LIQUID Atarax, Flomax, Soma (yet again), acidophilus, Glucosamine/Chondroitin with MSM & collagen, d-mannose. MAJOR flare from Cystoprotek! Re-trying freeze dried aloe vera w/some decent results!

    Tried and failed: Elavil, Ultram, Prosed DS, Benadryl, Bentyl, Valium, Ativan, Zanaflex, Librax, Sanctura (all caused retention among other things), bladder instills (owwwwww!), Elmiron (allergic-throat tightening). Failed Interstim-no feeling in sacral nerves...

    I'm allergic to penicillan, sulfa, reglan, quinolones, clindamycin, and now LATEX!

  2. #2
    ICN Member sunshine_77us's Avatar
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    Fibro

    What other medicines are supposed to help with Fibro? My dr. said the Cymbalta would help me but he has never increased it from the 30 mg. I think it probably needs to be increased.
    Pam

  3. #3
    Support Volunteers ICNJess's Avatar
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    They were talking, for awhile, that Neurontin would be approved for Fibro. I don't know if it ever happened. I think Neurontin and Lyrica are cousins, right? Same drug family I believe. Yeah a cause would be nice. I like Lyrica, though...at least it's something in the Fibro fight.
    Mommy to 2 crazy, wonderful kids and wife to the most amazing man in the world!

  4. #4
    IC Friend humpieumpumkin's Avatar
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    I personally think it is a huge conspiricy. Why would the drug companies want to find cures when they can make so much money "treating" the problem rather than fixing it all together. I don't know, maybe i'm just paranoid. I think this is certanally a matter of ethics.

    Erika
    IC diagnosed officially via cysto/urodynamics 1/26/07

    Grade II Endometriosis diagnosed via lap 12/11/07

    "Fall down seven times, Stand up eight."

    "Life is a tragedy for those who feel and a comedy for those who think."

    Current Treatments:
    Interstim Since 5/25/07!
    Birth Control

  5. #5
    Angel watching over us verdicries's Avatar
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    i'm with you erika. why CURE anything when there are millions to be made "treating" stuff? i've thought that for years.

    as far as i know there are no other officially approved fibro meds. ultram/ultracet is prescribed a lot (i was on it for years), as are a lot of full-out opiates.

    anyone tried lyrica/neurontin with success? what were the side effects?
    (Added by ICNMgrJill on 5/19/08. I am sad to share that Verdicries (aka Tracy) lost her life in a tragic accident just a few days ago. We will miss her support, her encouragement, her sense of humor and, of course, the joy that she found as a mother and wife).

    Tracy ~ 29 years old with Toxoplasmosis (from birth), Fibro/CFS (since age 13...ouch), severe IC, IBS-D, severe PFD (surgery made it even worse), vulvodynia, hiatal hernia, GERD, ulcers, severe gastritis, numbness/tingling in extremeties, pelvic nerve damage--mainly urethral, urinary retention, pelvic reconstruction 7.10.07 (fixed rectocele, rectal prolapse, lifted bladder, urethra, uterus, and repaired vaginal walls), Raynaud's, 2 severely herniated discs in neck and one in low back, anemia, PCOS, anxiety/depression/panic attacks (since forever). Still having major bowel problems (inability to empty rectum...any ideas?? ).

    I'd like to be on House, MD as a medical mystery.

    Married to Craig, a saint amongst men...who puts up with me and my eccentricities...

    Connor & Mommy by the tree:


    Connor with Santa...so happy!


    I take: LIQUID Atarax, Flomax, Soma (yet again), acidophilus, Glucosamine/Chondroitin with MSM & collagen, d-mannose. MAJOR flare from Cystoprotek! Re-trying freeze dried aloe vera w/some decent results!

    Tried and failed: Elavil, Ultram, Prosed DS, Benadryl, Bentyl, Valium, Ativan, Zanaflex, Librax, Sanctura (all caused retention among other things), bladder instills (owwwwww!), Elmiron (allergic-throat tightening). Failed Interstim-no feeling in sacral nerves...

    I'm allergic to penicillan, sulfa, reglan, quinolones, clindamycin, and now LATEX!

  6. #6
    ICN Member Kara29's Avatar
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    I have some pretty nice results for some of my pain from Lyrica. 150mg 2-3 times a day. I've been on it for a year. I still have some very bad days, but the good days have been happening more often. For myself, Lyrica lasts longer in the system than Neurontin. These two meds are both in the Anticonvulsant Class of Drugs.

    Here's a Lyrica Link: http://www.lyrica.com/content/dpn_assess_pain.jsp?source=google&HBX_PK=s_diabetic+neuropathy+symptom &HBX_OU=50&o=%25epid!|%25eaid!|%25erid!

    Here's a Neurontin Link:http://www.neurontin.com/

    I think they are both used for all sorts of pain disorders.
    Side effects can vary from one person to another. I don't have any side effects from it.

    I hope you have a good weekend!

    Kara
    Last edited by Kara29; 06-22-2007 at 11:39 AM. Reason: spelling
    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.

  7. #7
    ICN Member Roxie2007's Avatar
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    I like Lyrica, except for the main side effect......rapid weight gain! It just sucks that when you find something that helps with nerve pain and then it has such a dreadful side effect! 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:

  8. #8
    Angel watching over us verdicries's Avatar
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    thanks girls. i may ask my otherwise useless urogyn about lyrica or neurontin monday. i need some serious pain relief NOW (i also need surgery but can't seem to find anyone competent to do this...).

    some weight gain wouldn't be a bad thing for me, roxie....i weigh just 81 lbs, can't eat much cause i can't evacuate my bowels properly due to rectocele. blech. but i do understand about loving the med/hating the side effects!

    has anyone found they suffered urinary retention with either lyrica or neurontin? i'm hesitant about all pain meds as they usually cause this and it always happens to me!

    tracy
    (Added by ICNMgrJill on 5/19/08. I am sad to share that Verdicries (aka Tracy) lost her life in a tragic accident just a few days ago. We will miss her support, her encouragement, her sense of humor and, of course, the joy that she found as a mother and wife).

    Tracy ~ 29 years old with Toxoplasmosis (from birth), Fibro/CFS (since age 13...ouch), severe IC, IBS-D, severe PFD (surgery made it even worse), vulvodynia, hiatal hernia, GERD, ulcers, severe gastritis, numbness/tingling in extremeties, pelvic nerve damage--mainly urethral, urinary retention, pelvic reconstruction 7.10.07 (fixed rectocele, rectal prolapse, lifted bladder, urethra, uterus, and repaired vaginal walls), Raynaud's, 2 severely herniated discs in neck and one in low back, anemia, PCOS, anxiety/depression/panic attacks (since forever). Still having major bowel problems (inability to empty rectum...any ideas?? ).

    I'd like to be on House, MD as a medical mystery.

    Married to Craig, a saint amongst men...who puts up with me and my eccentricities...

    Connor & Mommy by the tree:


    Connor with Santa...so happy!


    I take: LIQUID Atarax, Flomax, Soma (yet again), acidophilus, Glucosamine/Chondroitin with MSM & collagen, d-mannose. MAJOR flare from Cystoprotek! Re-trying freeze dried aloe vera w/some decent results!

    Tried and failed: Elavil, Ultram, Prosed DS, Benadryl, Bentyl, Valium, Ativan, Zanaflex, Librax, Sanctura (all caused retention among other things), bladder instills (owwwwww!), Elmiron (allergic-throat tightening). Failed Interstim-no feeling in sacral nerves...

    I'm allergic to penicillan, sulfa, reglan, quinolones, clindamycin, and now LATEX!

  9. #9
    ICN Member PenguinK's Avatar
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    Houston, PA
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    I was on Lyrica for a few months last year. It took away the pain, but I went off of it due to the side effects. I gained 15 lbs in 1 month and could not stop eating. It gives you an enormous appetite. I have never been this heavy, even at the birth of my son! I could not get "full".

    Other people I know who take it said the same thing, but didn't have the other side effects like the brain fog and trouble concentrating, dizziness, and tiredness I experienced. Everyone is different, though. I would probably recomend someone giving it a try to see how they react.

    I think maybe it could work if they played with your dosages, but I just went off and tried on my own. Now that I am sure I have Fibro, I am looking for some pain relief. I use flexiril some evenings and find that I wake up in a little less pain, but I am going to a new Chiropractor's clinic that deals with fibro and hopefully I will get some relief. There is a Chiro, a Physical therapist, and a medical doctor who all work together with you. I had to explain IC to the one that did the initial screening appointment. He looked shocked. I hope the MD has heard of it. I don't think it is very well known around me. We really need some awareness here.

    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!

  10. #10
    ICN Member Roxie2007's Avatar
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    Jan 2007
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    950
    Tracy, this drug may be great for you. It really helps with nerve pain it just has the weight gain side effect. I haven't had any of the other side effects. I hope you find something that helps you! 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:

  11. #11
    Angel watching over us verdicries's Avatar
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    i will be starting neurontin after surgery (well, not RIGHT after...but maybe a month or so). i'm nervous but would like some pain relief!!

    btw roxie...i will be posting my shaving experiences later in the vulvodynia board lol.
    (Added by ICNMgrJill on 5/19/08. I am sad to share that Verdicries (aka Tracy) lost her life in a tragic accident just a few days ago. We will miss her support, her encouragement, her sense of humor and, of course, the joy that she found as a mother and wife).

    Tracy ~ 29 years old with Toxoplasmosis (from birth), Fibro/CFS (since age 13...ouch), severe IC, IBS-D, severe PFD (surgery made it even worse), vulvodynia, hiatal hernia, GERD, ulcers, severe gastritis, numbness/tingling in extremeties, pelvic nerve damage--mainly urethral, urinary retention, pelvic reconstruction 7.10.07 (fixed rectocele, rectal prolapse, lifted bladder, urethra, uterus, and repaired vaginal walls), Raynaud's, 2 severely herniated discs in neck and one in low back, anemia, PCOS, anxiety/depression/panic attacks (since forever). Still having major bowel problems (inability to empty rectum...any ideas?? ).

    I'd like to be on House, MD as a medical mystery.

    Married to Craig, a saint amongst men...who puts up with me and my eccentricities...

    Connor & Mommy by the tree:


    Connor with Santa...so happy!


    I take: LIQUID Atarax, Flomax, Soma (yet again), acidophilus, Glucosamine/Chondroitin with MSM & collagen, d-mannose. MAJOR flare from Cystoprotek! Re-trying freeze dried aloe vera w/some decent results!

    Tried and failed: Elavil, Ultram, Prosed DS, Benadryl, Bentyl, Valium, Ativan, Zanaflex, Librax, Sanctura (all caused retention among other things), bladder instills (owwwwww!), Elmiron (allergic-throat tightening). Failed Interstim-no feeling in sacral nerves...

    I'm allergic to penicillan, sulfa, reglan, quinolones, clindamycin, and now LATEX!

  12. #12
    IC Friend aprilmae's Avatar
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    Texas
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    I am on Neurontin and I can tell it helps. I forgot a dose the other day - out running errands - and I could tell it. Shortly after I took it the pain level went down. However I am noticing that I am always tired, my short term memory is not at all what it used to be and I sometimes am "out of it". I am going to talk to the doc at my next appointment and see what we can do. I like the fact that it helps the pain but with school starting back up next month I can't be like this all the time. I have gained about 5-10 pounds with it.

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