Month 12 on Guaifenisen

Discussion in 'Fibromyalgia Main Forum' started by Jude, Mar 31, 2003.

  1. Jude

    Jude New Member

    It has been awhile since I've checked in. The tendons and ligaments in my right shoulder and back have been clearing and it has been painful. I feel that the guai has been pulling from these areas. Repetitive movements of my right arm caused a lot of tightening of the tendons which would lead to bad headaches if I did not stop. Once the headaches start the only place to go is bed. I was so discouraged with the long-term pain in these areas that I almost quit taking the guai thinking that it was doing no good.

    What I did not realize was that these areas can be some of the most painful to reverse. I have personal contact with people who have been on this protocol longer than I. They encouraged me not to give up to hang in there. I'm glad that I did. This reversal cycle seems to be ending. Our reversal cycles on the guai can be just as individualistic as our FMS.

    I am better than I was a year ago. I managed to spend the night in a motel or the first time in six years. For a person whose motto was "Have suitcase, will travel." pre FMS this was a big breakthrough for me. I bounce back from problems that would have sent me into flares for days before guai. Still have problems but they don't affect me physically as bad as before.

    I just hit a rough patch with the shoulder that was longer and harder than I expected. Also, I didn't expect the eyes to cycle but they do. Am glad that I stuck it out but I did it with a little help from those that have gone before me. Maybe this information will help some of you.

    Jude
  2. Mikie

    Mikie Moderator

    I'm sorry you have had it so rough, but I'm glad you have stayed with the Guai treatment. My best healing came in the second year of using it. Sky and I started two days apart and we celebrate two years in May.

    FMS damages the tendons and many of us have weak and painful tendons. Tendon tissue is very slow to heal and very painful.

    The Guai seems to be healing my oldest tender spots first and then taking on the newer ones. My new doc was unable to even find the old ones in several areas. He was very impressed with my progress.

    You deserve a big congratulations for sticking with it. Happy Anniversary and look forward to even great progress this year.

    Love, Mikie
  3. Dorothy45

    Dorothy45 New Member

    My psychiatrist believes I have fm, and I have spoken to a woman that is in charge of a local support group. She claims that Guai has enabled her to rid herself of the wheelchair. Do you have a website that you can refer me to, which explains this particular treatment? I have been to several sites, however, I am always looking for more information. I am having a hard time dealing with the concept of fm. I always thought I was crazy, or a hypochondriac. My shoulder and neck pain is my most painful and annoying symptom amongst many others.
    Dorothy
    [This Message was Edited on 03/31/2003]
    [This Message was Edited on 03/31/2003]
  4. klutzo

    klutzo New Member

    We are not allowed to give out URL's here, but we can hint, and the site is guaidoc. You must follow the protocol exactly, which means having and reading thoroughly, a copy of Dr. St. Amand's book. You can get it at that site, or Amazon.
    The drug is not a hard drug to take and can be bought right here or at any drugstore without a prescription, but eliminating salycilates from your life, and keeping them out is a challenge. It gets easier after you get used to always reading labels. The drug will not work if all salycilates are not eliminated from your life.
    Good luck,
    Klutzo
  5. Tibbiecow

    Tibbiecow New Member

    I've been on guai for about a year now and I just started on a new antimigraine ( the thirteenth or so, and the first that seems to work) and I don't know if I'm having a bad flare or a reaction to the topamax. My leg joints hurt, hurt hurt like they did when I first started reversal. Leg pain and joint pain are listed as topamax unusual but reported side effects.
    Good luck being rid of your pain for good when you get your reversal done!
    Tibbie
  6. 2girls

    2girls New Member

    Hi Jude -

    Thank you so much for posting. I have read so much about people doing better with the guai protocol, I am seriously considering asking my doc about this. I have a few questions, if you don't mind.
    How long have you had FM (I understand it takes about 2 months per year to reverse)?
    Also, pardon my ignorance, are the tendons the crack, snap and popping noises we hear throughout our bodies (at the joints)?
    Thanks
    2girls
  7. Dayle

    Dayle New Member

    I'VE BEEN ON GUAI FOR 3 MONTHS IT IS HELPING. I CAN STRETCH OHHHH, IT FEELS SO GOOD. UNFORTUNATELY MOST DOCS DO NOT KNOW ANY THING ABOUT GUAIFENESIN. BUT THE WEB SIGHT IS GREAT.
    BEST OF LUCK,,,DAY
  8. Jude

    Jude New Member

    In May of 1986 I was diagnosed with CFS preceded by a viral infection. After six months I went into remission with small minor outbreaks periodically. For the most part I was very active and healthy. I developed FMS in May of 1997. I needed a hysterectomy and my insurance company made me prove that less invasive procedures did not work. So two emergency room trips, lots of expensive medicine and one outpatient surgery procedure later they said OK to what should have been done in the first place. I think the six months of physical stress, emotional stress and mental stress sent me into full blown FMS. Now, I also believe that I had a predisposition for FM. I can look back over my life and see little things that probably indicate that I was going to get FMS at some point. The physical stress was just the trigger.

    The reversal factor can vary from individual to individual. Some people it's two months per year; some it's three months per year and a few others it can take longer. The most important tool is access to a good maper. The mapers can feel progress in areas being cleared or redeposits in previously cleared areas. But you don't have to have a maper to do the protocol. The most important point to remember is to ask yourself after six months "Am I better than I was before beginning the protocol?"

    Before I ever started the protocol I can remember my knees popping and they have not done that in a long time now. Hope this helps and good luck to you.

    Jude
  9. 2girls

    2girls New Member

    Thanks so much for the info. I have a real problem with the cracking at pretty much every joint area. I also have alot of neurological symptoms lately. Would love to try the guai!

    thanks again
    2girls
  10. kredca4

    kredca4 New Member

    I just wanted to say Hi, and Congrats on sticking with your Treatment. Yes you have Improved a lot in the last year or so, So happy for you.
    Sincerely
    sharon
    ready for another trip to Disneyland, now that you Feel Better? ;o>
  11. Sky

    Sky New Member

    So glad to see you post. WOW, one year already! I know it wasn't an easy road for you and I am glad that you stuck with it. It makes me very happy to hear that Guai is helping others.

    Hi Mikie... boy oh boy 2 years in May!

    I'm pluggin away and really doing great. Had an abnormal pap and now have a biospy of the cervix scheduled for the 8th. Not exactly what I want to deal with right now. Also had a car accident on the way to work last Friday. I'm fine, but my truck isn't. Anyway, I thought for sure I'd be down that weekend, but I had no reaction to the accident at all. In fact, I had my nieces all weekend and you know how active a 7 and 5 year old can be.

    But anyway, enough about me. Jude, I'm so glad that you posted an update.

    All others, talk to your doctor if you are considering this protocol. And read the book, not just once, but many, many times.

    My doc still doesn't get it, but she's seen my improvement over the past couple of years. I went from being barely able to walk, to playing soccer again and leading a very active lifestyle.

    Take care all,
    Hugs,
    Sky
  12. Mikie

    Mikie Moderator

    It's good to hear from you and I'm glad you didn't get hurt in the accident. Watch for things down the road, though. The damage to my shoulders and hips didn't show up for six months after my accident. That's when I started the flexing and stretching exercises which have helped tremendously.

    Yep, just about six weeks til our anniversary. I can't believe it's been two years. Just think where we would be if we hadn't started the Guai treatment and where we are today. Thanks, my friend, for being there for me while I was going through the beginning phases and each time I increased the dose. How are you doing on 2400 mgs? It seems to be working great for me and I didn't have much of a reaction when I increased it.

    Take care.

    Love, Mikie