Guai ladies ( gents?)

Discussion in 'Fibromyalgia Main Forum' started by Smiffy, Jul 27, 2006.

  1. Smiffy

    Smiffy Member

    Hope you're all doing well.

    Have any of you experienced horrible burning soles & palms, with swelling hands & feet covered in white & red blotches? Is it reverse cycling (I've never had it before)?
  2. Jane_Canuck

    Jane_Canuck New Member

    Hey Smiffy!

    I have that and I am not taking the guai anymore!

    I wake up that way in the mornings and sometimes I get it later in the evening too.

    I ought to write it down for the doc, he loves my lists.

    I just could not afford to stay on the guai so I stopped reading the guai posts since I was not longer a Guai Gal.

    I have stopped all meds, except percocet. So doc just put me on flexeril. Wowzers was I put on my ass over night when I finally could get settled.

    Anyhow tyvm for reminding me of this symptom!

    You know how those brain farts go lol I tend to forget lots!

    xox Brenda
  3. Smiffy

    Smiffy Member

    What a shame you have had to give up the Guai, Jane. I hope you will be able to give it another go sometime.

    It sounds as if this is just another wonderful fibro symptom. Love your expression 'brain farts'!
  4. janieb

    janieb New Member

    I'm surprised to hear you say that you thought the guai was so expensive. I bought it from the store on line and thought it was relatively inexpensive compared to some of the other drugs I take. Of course, those my insurance company pays for the most part.

    After being hospitalized with pancreaetist(?), it was suggested that I stop the guai until we get that resolved. The guai ladies seemed to agree. However, after almost two months on the drug and I believe cycling twice, I found that my fibro problems are not as bad as they before starting the guai.

    Perhaps the other pain took some of my attention away for fibro, but I'm hoping to get back on the guai ASAP.

    Good luck to you.

    Blessings,

    janieb
  5. darvick

    darvick New Member

    I mentioned guai to my rumy, he's supportive of me and has tried many things to help, but he said we really have to be careful on remadies. Guai he said helps some, but cautioned against mega doses of anything. I havent tried it yet , no money as usual. But hope it helps some.
    soft hugs
    Dar
  6. Mikie

    Mikie Moderator

    Your rheumy obviously isn't familiar with the Guai Protocol. The doses we take for FMS are actually very small compared to the doses of Guai used to treat respiratory problems and coughs. Our Guai doses are mini- and not megadoses.

    If you are interested, check out the Guaidoc.com website and/or buy the book. It is an excellent book on FMS regardless of whether one decides on the treatment or not.

    Very, very few docs have any knowledge about this treatment. I'm sure your doc meant well but since he is not familiar with the treatment, he really isn't qualified to comment on it. Dr. St. Amand, who developed this protocol, has FMS himself and has spent his professional career developing this treatment protocol.

    I believe the Guai works for reasons not completely understood. Dr. St. A has his theory and I believe he is right. It's just that I think the Guai has other properties which are beneficial and which are as yet unknown.

    Guaifenesin is one of the oldest and safest meds around, with almost no side effects. Most of us felt we had nothing to lose and everything to gain from this treatment. It certainly has been a God send for me.

    Love, Mikie
  7. pstar

    pstar New Member

    I'm not on the guai. My feet are sore this very minute. I also have the red blotches. Instead of walking I slide my feet across the floor. It is too painful to pick my feet up. I was the mom who constantly told my kids to pick their feet up when they walked.
  8. JTyre

    JTyre New Member

    I looked these two ingredients up. Neither are on the avoid list or sals free list. Are they sals free?

    Eicosapentaenic Acid (EPA)
    Docosahexaenoic Acid (DHA)

    They are in Pro Health Ultra EPA supplement (fish oil) Omega-3 fatty acids.
    Thanks,
    j.
  9. crisleem

    crisleem New Member

    After several years of just hoping this would get better...to hearing my 8 YO ask if I would be in a wheel chair soon, I have joined this board.

    I tried the guia very briefly.

    Is it normal to feel so much worse....like really horrible to the point of non-function while on it?

    If so, how long should that last.

    I realize I have years to undo. But I was only on it for two weeks and it was literally the worse two weeks of my life. I had to get on narcotics. And that can't be an option. I'm a mother of two little girls, they need be to function. And I'm a cheap drunk. It doesn't take away the pain, it only takes away my brain and ability to give a !@#$ if I'm in pain. Not a good thing with little people on the lose.

    But I would like to try again. Maybe I was doing it wrong. I should have joined a group first. My doctor is useless.

    thanks!
    Crislee
  10. Smiffy

    Smiffy Member

    Sorry you're suffering this too pstar, it does seem part of the DD. Have you found anything that helps? My feet & hands are less swollen now the weather is a bit cooler, but it was alarming.

    Eicosapentaenic Acid (EPA) & Docosahexaenoic Acid (DHA) are both sal free JTyre, you're fine with these. It's herbal remedies that are blockers.

    Crislee, it sounds as if you started off on way too high a dose & reverse cycled too fast. The correct dose makes your symptoms tolerably worse. Get hold of Dr St Amand's revised edition of 'What your doctor may not tell you about fibromyalgia' for details of how to slowly build up to your individual dose. You don't need a doctor to do this, but you do need to follow the book exactly. Buy a recommended form of Guai such as the ones sold here. You can find a link to your Guai support group from the fibromyalgia treatment website:

    www.fibromyalgiatreatment.com

    Good luck
  11. Jude

    Jude New Member

    Smiffy is correct the EPA and DHA fish oil complex will not block your guai. This product is safe to use as a source of Omega-3 fatty acids with the protocol. Good luck.

    Jude