Message for Mikie and other guai users

Discussion in 'Fibromyalgia Main Forum' started by EllenComstock, Sep 15, 2003.

  1. EllenComstock

    EllenComstock New Member

    Hi Mikie and others on guai program:

    This past weekend was a very rough one for me. No sleep and pain everywhere, especially in my legs and hips. While I hated losing my weekend, I was glad this latest flare didn't interfere with work. I had another flare a week ago, which caused me to miss all of Monday and half of Tuesday. Until lately I was not having any major flares and was sleeping fairly well at night. I am guessing and hoping it is the guaifenesin that is bringing on these flares. When I saw my FM specialist in July, he felt that the guai was starting to work. I am trying hard not to be discouraged and plan to stick with this, but really need some encouragement right now to help me make it through today. I am at work today, but needless to say, I am feeling really wiped out.

    I took your suggestion, Mikie, and decreased my dosage quite awhile ago from 1200 mg. to 900 mg. I take 600 mg. in the morning and 300 mg. in the evening.

    Ellen

  2. Mikie

    Mikie Moderator

    Yes, it probably is the Guai doing its thing. This is good, but if it interferes with your work and life too much, I would suggest cutting the 600 mg. dose back to 300 mg. for a bit, just until your system get used to it. You can always increase it down the road. The 600 mgs. a day works for most people. If you think you can hack it and decide to stay on the 900 mgs., it will speed up the reversal process.

    I hope that between the flares, you are feeling better. As time goes on, the flares come less and less and you feel better more and more of the time.

    It is easy to get discouraged in the beginning until the Guai has had a chance to really make a big difference. The change can come so slowly that you may have to look back months, or even a year to see how far you have come. My FMS is about 80 percent reversed as long as I stay on my Guai. If I didn't also have CFIDS, I would consider myself pretty much healed.

    Again, Kiddo, hang in there; it's worth it down the road. Stay focused on the reward which awaits you. I've said a little prayer to help you get through this.

    Love, Mikie

    PS: I cut and pasted this from one of the articles in our library:

    Dr. St. Amand points out that guaifenesin treatment is trying. As the disease reverses, patients feel symptoms intensify and new or dormant symptoms can surface. This causes some patients to doubt their progress during the initial stages of treatment; however, Dr. St. Amand reports that as good days begin to accumulate, patients will have more confidence and strength to go on with treatment. Guaifenesin is not a cure for FM; the underlying condition that caused the build up of phosphates remains, and will return if the patient ends therapy. Therapy is a long term commitment but may offer significant rewards.

  3. EllenComstock

    EllenComstock New Member

    Hi, Mikie:

    I just got back from lunch and saw your message waiting for me. Thanks for the encouragement. Fortunately, I am not in a constant flare. Before I had these two recent flares, I was noticing that I was having more nights where I slept better and that was encouraging. I also had some days at work where I had a little more energy and got through the day better.

    Thanks for reminding me to be patient and not give up. You are a real inspiration to me!

    Ellen
  4. Mikie

    Mikie Moderator

    I'm glad to hear this. It does sound as though the Guai is starting to work its magic for you. If you can just hang in there until things settle down a little, it will get easier.

    I believe it is better to lower one's dose than to stop the treatment if things get too rough. Lowering the dose and raising the dose are always options for us.

    Please keep us updated because there are probably many who could benefit from this treatment and success stories may give them the courage to try this treatment.

    Love, Mikie
  5. todayisagift

    todayisagift New Member

    I think the new doc I'm seeing believes in that protocol and said I will eventually be trying it. Cause he gave me information on it in my packet he gave me when I left. I have read about it but I don't know if I fully get the whole thing?
    -Megan