The end of the experiment

I didn't end up going back on the guai, and for now, I don't plan to. I still haven't decided if it was really doing what Dr. St. Amand claimed it does. However, it's been about 6 months since I decided to go on his hypoglycemic diet from the same book that talks about the guai. I was desperate enough to try to give up sugar and most carbs to see what would happen. I found that the first three weeks, I felt worse. I knew that was normal, as I've done similar diets in the past. But, once the blahs passed, it made an enormous difference! I was able to half my tramadol, then quarter them. I have a lot more energy and can wake-up a little better in the morning (I don't know if there is a cure for my mornings!) Once up, I function quicker and for longer periods of time. I've lost about 30 pounds fairly easily in the last year on top of that! When I mess up, I pay for it. I find that pizza is the worst culprit. I know that the crust is terrible. I've also read that tomatoes can cause inflammation, and I'm starting to believe it just from my reaction to pizza. The better I eat, the more I realize that I feel drunk (and not in a good way) or have a hangover most of the time when I don't eat well. It's a hard thing to start, but most of the time, it's pretty easy to live, and the cravings and extra hunger go away after a week or so. The pain difference makes it completely worth it. I think more clearly as well and am a lot less tired in general.

I also found that going to the acupuncturist makes a difference. My cousin's husband also has fibro so severely, along with some other issues due to a rappelling accident, and he became bedridden and almost non-functional. He's only in his late 30's. He started going to the local acupunturist, and it changed him visibly, so I decided to try it. I have a lot of pain that sits in my hands and forearms, and one treatment can make that go away for a few days at a time. It helps my energy as well. She is a community acupuncturist, which means that she treats several people in one room at a time (big zen-like room), so she can charge a lot less than in a traditional single visit. She has a sliding scale from $15-$40 per treatment.

So, that's where I am for now. I take my vitamins regularly- I think I listed them on a previous entry. [I just went back and looked... I'm not on all that anymore. Here's what I actually take now; I will only make a note on the new things that were not on the previous blog about supplements:

-Tramadol

-Women's multivitamin

-Fish oil

-Chromium picolinate

-B-12 for energy

-Magnesium/Calcium/Zinc (which I can not remember why at this moment; I knew when I started taking them; I know zinc helps the immune system a lot- I get colds a lot less often than I used to)

-Melatonin

-Klonopin

-Mobic.

These helps a lot, too. When I can, I exercise- that's a hard one for me to fit in with my energy issues (and it doesn't really work like it does for the average person without fibro- it may or may not help my energy. Sometimes it helps me tank instead). I do work in the center of campus, so I get some walking in every day at least.

I hope this has helped someone- I'm not sure it's definitive enough, but at least it's one person's experience.

Time Off

So, I haven't checked in for a year. In the Fall, I had many things in my life change: divorce, new career, moving across the country for a new life. Major stress! Half-way through the semester I got some crazy, mean virus that lasted for at least 10 weeks, which they couldn't identify, and which made it so taking the guai was the last thing on my mind, since my stomach was upset a lot of that time.

Once I got off of it, I wasn't ready to go through the yuck necessary to get back on it. I may try again in August, when I'm not teaching.

Sorry if I left you hanging.

-Joy

Seriously Behind on my Posts!

This last semester has been really long, really busy, and really difficult physically, so I've neglected my blog; it is not really helpful to my experiment to not keep track consistently.

So, the last 4 months have been seemingly random as far as symptoms are concerned. I have been progressively more fatigued, as I have not had the time to rest that I needed. So, I started out having one day a week where I crashed and by the end it was 4 days on and 3 crash days each week. The major issue was that I had to study and pass my M.A. exams, finish an incomplete, do all my classwork, including writing, researching, filming, and editing a documentary, and teach my class! And graduate. So, I didn't do much but catch up on sleep the first couple of weeks I was off. During that time I was on the low part of my guai cycle, meaning, I was very sore, indicating that there was fluid in the muscles getting ready to flush my system. This week I feel much better than last. I did miss the guai for about 3 days at one point- I ran out and forgot to get more- and I really suffered. The good news is that it made me realize that it was helping. Most of the time, there is no real sign that it's doing anything, so I begin to doubt. But, I am cycling. I just have to be patient.

I went to the chiropractor about 5 times and was so stiff, it was hard for her to get my bones back in place, plus I kept wanting to grab her hands and yell, "Don't touch me!" So, I found a place that does myofascial release. The facia is the thin membrane under the skin that runs through our whole body and carries electric impulses- think of the filmy membrane under chicken skin- same thing. Fibromyalgics often have this twisted and knotted which obviously can inhibit muscle movement and proper blood flow and electrical messages. I was amazed at the process. It is like a massage, but the therapist pushes the skin to move the fascia back where it belongs. They also push on trigger points (knots)- that part hurts! In fact, all along the line of my shoulder blades still feel bruised- I could barely grit my teeth through her working on that part. But, the other part felt wonderful. And I could feel my blood flowing through my body better- no joke- and am so much less stiff. I had a chiro appt. that same afternoon, and lo and behold, my skeleton could finally move. I will make a point of getting myofascial release maybe once or twice a year from now on.

I added fish oil to my enormous pill collection. I watched Dr. Oz and they had done an experiment with stressed taxi drivers. After adding a lot of fish to their diet, their stress levels went down significantly. I'm not much of a fish eater, so I got pills for both Brooklyn and I. I can't remember the right number for the name... Omega ? I want to say Omega 13, but that's from Galaxy Quest- lol!

So, I'll try to be more consistent this summer.

Advice from Abroad

A friend sent me this the other day; it helped me because I'm on the lower part of the cycle, which makes me wonder if it's working:

We have to remember that reversing on Guaifenesin is exactly what it says: it's
reversing out of one's symptoms. For most of us, it was hard to accumulate those
symptoms through the depositing processes of Fibromyalgia and it can be hard to
get rid of those deposits through the clearing cycles of the protocol. This can
seem counter-intuitive for a treatment, as we expect treatment to control our
condition and make us feel better.

With the Guaifenesin protocol we are not clear until we are clear, until ALL
deposits are gone. Before this has happened, however long it takes, we can
expect some trouble from cycling. However, cycling takes place in many locations
throughout the system in the early days, with widespread difficulties. Later,
there will be fewer places to clear and trouble can become more localised so
that, overall, we have less difficulty to face on a day-to-day basis.

Sometimes it's better to look not at how one feels, as we may be in a difficult
cycle, but at what we can do. These days I have to refer to my symptom diaries
to see how incapacitated I was in the early days - I've simply forgotten. Some
of my symptoms are now history. We will always be Fibromyalgics (unless they
come up with a genetic 'patch' to put us right), but we don't have to have
fibromyalgic symptoms. Over these seven and a half years I have read millions of
words of people's accounts of their symptoms and their routes out of those
symptoms on Guai. Many people have now reversed out fully and don't have
Fibromyalgic symptoms. For some there may be some physical damage left;
osteoarthritis in advanced cases; for me I'm not sure that contracted
fibromyalgic tendons in my arms damaged by work will ever be perfect, but
everything else I expect to normalise when I am fully clear.

Claudia would be a good example. She is someone who has one or two non-fibro
related conditions, just as many of us do (not everything is Fibromyalgia),
which she has to cope with. She was a very slow responder and had to watch
others who were faster responders overtake her on the road to recovery.
Eventually she cleared fully and, quite simply, one couldn't tell that she's a
Fibromyalgic. She's a powerhouse of energy, manages family commitments, Dr St.
Amand's office along with Gloria, edits the newsletter, co-authors the books,
writes her own books, attends support groups and seminars, travels all over the
place.

This is what we have waiting for us at the end but, as I say, we are not clear
until we are clear. The big difference on the protocol is that, each tablet we
take, we are getting one step closer whereas, before, we were always getting
worse. Our mitochondria are now gradually clearing. If we can exercise and keep
taking the Guai, then each new mitochondria we make will always be clear.

I sometimes think that, for each of us reversing, there is a finite amount of
suffering we have to go through to get clear. If we put off being on the
protocol, or take a rest from Guai, or get sloppy with products and block, then
that amount of suffering is still waiting for us when we get back on track. But
it IS FINITE. If we are not reversing on the protocol, then the amount of
suffering is INFINITE. That's the difference.


Regards, Peter W, 44, 1200mg LA + 400mg FA, Guai from Jan' 2002, HG Diet
(Liberal)
UK-FMS-GUAI Admin Team

When I Don't Check In

I guess it's like the tendency to not pray when things are going well... well, kind of anyway. I realize on good days I don't think to check in, and a good day is wide-ranging, so I don't know what all the missing days are like based on this blog. At the same time, I don't want to write in every day; that is a bit boring, tedious, and space-consuming. A good day for me may mean I can take Beam to school or need Darin to, but I can go to work and pick her up and go to class (the mornings always seem hard). It can mean that I'm pain-free enough to not take anything, or it may mean I take one or two tramadols that day. It may mean that the tramadol gets rid of all the pain, or all of it except for the pain in my hands. Some days I can walk up and down stairs on campus and move fairly quickly. Some days, I have to use the elevator both going up and down (of course, my backback weighs 20 lbs.) Sometimes at the end of the day, I'm thinking clearly and get some work done. Some days I just fall asleep once I get home or at least my brain is too tired to be productive. But, if I'm not stuck in bed all day, it's a pretty good day. I did, on Wednesday, have to skip class and go home to bed, I was so tired, so that wasn't good, but I was asleep so forgot to record it :)

Great News

My daughter went to the Fibro Center today. She does not have Fibro, and I am so thrilled. I was so worried about her having to deal with this. She did get a bunch of blood taken to see exactly what is going on, but it will be a month before that gets back. But, she thinks her adrenal system is sluggish. That's fixable!

Added Meds

I had an appt. today. She added Melatonin to regulate my ability to get to sleep, since it helps control circadian rhythms and Progesterone to try to alleviate menstrual cramps. She also added iron that she thought she had already given me.