My fifth year on the guaifenesin protocol! Where has the time gone?
9-21-04 - Hey Lisa…I've been doing pretty good, lately....I had my annual physical and talked my doctor into raising my thyroid hormone to what it was four years ago. I hope that takes away some of the symptoms I've been experiencing in recent months. I also had a mammogram last week and they want me to come back for another one because there is a 'questionable area'...sigh...I don't think I like old age....:o) It's probably my Fibromyalgia swelling. My muscles under my arm, on that side, swell up every so often.That's what it was a few years ago when I had to go back to be re-x-rayed....:o)
11-15-04 - Dear Joy….Wow! This has been a tough year for me! I'm not sure if it's because I changed to the compounded guafenesin or not. My cycling just doesn't seem to let up. And when I do cycle, it's the deep pain that comes from cycling ligaments. My heating pad has become my best friend. (like I said, my problem was that my dosage was too high)
My menopause continues....wish it would definitely come to a pause!!!!!!! Mine has been going on now for ten years! I just saw my gyno and I am now on an estrogen pill every other day. I'm still not sure if my bad days are the lowered estrogen, my thyroid or my Fibromyalgia....? The past three months have been SO hard depression wise. I have felt SO apthetic! I believe it has been my body adjusting to the lowered estrogen and not the Fibromyalgia. But the symptoms are so close, it's hard to tell! !
I am doing some better since the last time I wrote to you. The horrible fatigue has gotten better. The depression is gone most of the time, now. My brain is a tiny bit better….:o) My doctor did raise my thyroid hormone so maybe that is why I've been feeling some better!
The girls and I went to Perdaneles Falls, a State park about 2 hours from here. Cherylyn was on a mini break from her nursing program. I think the physical stress caused me to cycle hard again (this does happen...any kind of stress can start the cycling again) Yes, I'm getting weary of the pain...but I’m glad that I can go out and eat with the girls and do so many things that I couldn't do before this treatment! :o)
I’m now back on 1200mg a day because the other was just too high. At least I proved that! I'm going to go on 300mg twice a day during Christmas vacation and see if maybe with the compounded formula of guafenesin I can lower the dose and maybe not cycle so much.
12-01-04 - Dear Debbie…This has been a VERY difficult year for me. It was my fourth year on Dr Amand's protocol and I must say that I have had real bouts of discouragement because I thought it would get better and better with each new year on the guafenesin.
I'm not really sure if my fatigue, depression and brain fog that have really worsened again, like they were before I started the protocol, is due to the Fibromyalgia or my Menopause (this is my tenth year in that) or the Thyroid disorder. The symptoms are all so closely related that it's hard to know what the problem is. No wonder doctors don't want to deal with us Fibromyalgics!!
I believe I've been cycling my abdomen muscles for over a year now. I have ropes and swelling in my abdomen. Some days I feel and look pregnant!! My pain is mostly on the right side right under my ribs and then goes around to the right side of my back. My right hip has had a lot of pain in it also. Sometimes, if I've been sitting for awhile, when I go to get up and take the first step with my right foot I nearly collapse because of a sharp pain that shoots into my right hip.
My lower back has been very painful too and I don't know if this is connected to my cycling the abdomen.
12-15-04 - More than a week before Christmas and I'm all done gift shopping. Gifts are wrapped and house is decorated! I started early like I have been doing for the past decade since I never know how I'm going to feel in December. This year I've had more energy and I’ve been able to focus better on my goals. As a result, I have finished way ahead of time!
I am so grateful to God for bringing Dr. St. Amand's protocol to my attention. What a blessing to be able to testify to the huge improvement in my health! I'm looking forward to the baking and cooking in the next few days. Gone is the dread that would come with knowing this needed to be done and wondering if I would have the needed energy.
I’ve decided to go off the Guaifenesin for the next couple of weeks. I’m going to give myself my first rest from the reversing process in 41/2 years!
1-04-05 - To all those starting Dr St. Amand’s Guai protocol - Don’t give up! Maybe you’ve been on the Guai protocol for one month now. Or maybe it’s been three months. Or you’ve made it to 6 months. It’s been one whole year. Whatever the length of time, it’s been enough for you and you are thinking of quitting the protocol. Don’t!
You are tired of being consumed by pain. The unending pain and frustration is just too much to take any longer. Fear of the unknown: “Is it going to get worse than this? Hovers over you. The anxiety of whether or not you have gotten rid of all the salicylates or whether you are blocking begins to take its toll. Your life has become a living hell! Don’t give up!
I have been on the Guai protocol since August of 2000 and have gone through all of the above and more. And I’m here today to say that it is worth all the pain, frustration and many, many tears. I didn’t give up, although tempted to many times. I’m so glad today that I persevered because this holiday season has been the best for me in 20 years!
I have had Fibromyalgia all my life, but became debilitated with it in 1985. I was diagnosed with Chronic Fatigue Syndrome. I dreaded the holiday season every year. And then I’d feel guilty that I was dreading it. But the fatigue and exhaustion after it all would keep me down for a good 4-6 weeks after the celebrations. I have noticed, since being on the Guai protocol, that every holiday season has been a little better. This year my family and myself were amazed at all I did and still have not suffered from it with any relapses.
My sister and her family came to visit us here in San Antonio. I went with her to do some of her last minute shopping the 23rd. Her family and mine, eleven in all celebrated Christmas Eve and Christmas Day here with a big dinner on Christmas Day. The next day we all went to see the lights on the Riverwalk, taking the boat ride (the fumes in the past gave me a relapse). A couple of days later all the women went down town shopping and then out to eat (couldn’t eat ‘out’ for years because of my chemical sensitivities). Every day I kept thinking, “Okay, is this the day the exhaustion is going to hit me?”
Oh, I can’t tell you how wonderful it is to not have that horrible exhaustion completely take over my life. To once again be able to enjoy the holiday season with family and friends!! To be able to take down all (I do a lot) my Christmas decorations in January and not in February like I’ve had to in the past because of a lack of energy.
So, I want to encourage you to not give up! Hang in there! It will get better. My heartfelt thanks to Dr St. Amand, Claudia and all the staff for all your hard work and effort in getting the word spread and the many, many hours spent responding and helping us all to see these better days! Don’t give up!
1-11-05 – I went off the Guaifenesin for about four weeks. I cycled and had pain the first week and then the next two weeks were pain-free and wonderful!! I had so much energy! Most of my brain-fog was gone. I was even able to play a card game with my husband and daughter, which I haven’t been able to do in years! I’ve started again with 300mg and I’ll wait and see what happens.
I’ve been jogging on my mini trampoline for about 30 minutes 3-5 times a week now, depending on what’s going on. Wow! What a difference when just five years ago I had had to quit my daily walking because of pain in my legs and then had to slowly work up to walking again after starting this treatment. Four and a half years later I’m jogging again!!
Cherylyn has decided to go ahead and go on the treatment also. I have suspected that she has Fibromyalgia for years. She has not wanted to accept that possibility until recently. I’ve seen her have flares off and on for years anytime she was under a lot of stress. Too bad it’s an inherited disease.
1-14-05 - Dear Guai supporters- The holidays were coming and I decided this year to go ahead and go off of the guai treatment during December. I hadn't gone off of it in the four years of treatment so I thought I'd give myself a little break.
As you all know from my post "Don't give up" a few days ago, it was such a wonderful month for me! It was so wonderful to have a brain again. No more burning my stovetop covers. No more forgetting what I was saying when I was interrupted. I could actually remember what I wanted to tell my husband when he came home at the end of the day without writing it on my 'tell Gary' note. You get the picture...:o)
This week I went back on the guai...Last night my husband turned to me during supper and said, "Did you start back on the Guaifenesin?" I said "Yes." He said, "When did you start back on it." "I don't know." I replied. He was laughing so hard he was crying. He said I said it in such a sad, pitiful voice…. Isn't it great that we can all laugh together about all of this!! :o)
PS. I burned my other stovetop cover this morning. I set my frying pan on it, momentarily. Put the rest of the dishes away. Took the bacon out and proceeded to cook it in the frying pan. Oh..Oh...it's still on the stovetop cover! Caught it in time before it was smoking! Now I'm typing with two badly burnt fingers...I miss my clear brain!!!! I continue to press on looking to the future, with hope, that my December brain will soon be the norm for me again!!
2-14-05 – a month on guai and I don’t think I’ve stopped cycling yet…no days without pain….I’m still on the 600mg a day. I think in the past I’ve been on way too high of a dose. I believe that I am a low-dose responder. One of the posts said that Dr. St. Amand says that a lot of low-dose responders cycle all the time….and do we clear slower too???
Cherylyn has started this protocol…she finally gave in and decided to see if she has Fibromyalgia. She went and had a bunch of blood work done to see if it could be something else. Tests all negative….she began to worsen two days later after starting the Guai. So we are pretty sure that our dose is 600mg a day.
My stomach muscle swellings are getting better! Finally! It’s been over a year that I have felt swollen and bloated in my stomach area from right under me breasts to just above the groin area…the guai protocol doesn’t do much for our figures…its quite embarrassing at times to let my husband see me…I know he accepts me and knows it’s the treatment, but I’m still vain enough for it to bother me!!
My Fibro-fog came back full swing too. It was so wonderful to have my brain back for four weeks!! I was writing again and loving it! Now my brain feels dead again. But those four weeks gave me hope that as I keep reversing, it will also clear up!
03-14-05 – Hi Dad…I went back on my Guaifenesin and am cycling again. I'm in a 'sit and stare' mode and have fond memories of my time 'off' of the Guai in Dec-Jan. I was mentally alert and had the energy to be motivated to do so many things!! It was unbelievable! So I take hope in that wonderful spell that that is what awaits me down the road as I continue to reverse! :o)
04-07-00- Michael Thomas (My first grandchild) was born on April 1st…little stinker…two weeks early. I wondered how I would do going to the hospital for three days and staying there for 4-8 hours visiting. In the past when Gary and I went to visit his mom in the hospital, I had relapses. Something in the hospitals bothered my MCSS…this time…nothing! I was fine…no problems!
I have been doing the guaifenesin protocol for almost five years now. I’m what I call a ‘long-distance patient of Dr. St.Amand. I have never seen him and have had to do this on my own with no help from any professional here in Texas. So probably, I would guess, with the ignorance in dosing and blocking, I have probably been reversing for only four years.
I am doing SO much better. The fact that I can participate on this list is a huge accomplishment for me. The fact that I have succeeded in the daunting challenge of exercising almost everyday on my mini-trampoline is wonderful! (it took four years on the protocol to get to that place!)
But I STILL have those days, weeks and months when I think, “Here I go again…” My worst cycling right now is, I believe, my brain cycling. It started about two weeks ago. For the last two years, on and off, I have the same symptoms. First it starts with fibro-fog that progresses to VERY bad fibro-fog. Then the waking up at 3am and not being able to go back to sleep. An all over feeling of fatigue follows. By week two or three the depression sets in. Not necessarily a sad or loss of interest state…just a state of total numbness that progressively gets worse and leads into what I now call fibro-blank, which is worse than fibro-fog! With fibro-fog, I can still think, a little…just slower and not as efficiently.
FIBRO-BLANK, unlike Fibro-fog, there is no visibility into the brain. The thinker is turned off and there is NOTHING! When asked a question, I get so frustrated because there is just ‘dead air’ like a black TV screen, where my brain is supposed to be. Absolutely no words or images even float by so that I can try and catch them. There is nothing! At this point I feel mentally challenged and just want to withdraw into my little corner and just sit and stare at nothing and wait, once again, for the gate to open up in my brain.
It’s hard to live like this. I share what I am going through for all of you who are so weary and frustrated with the pain, the fibro-fog, the depression and the horrible fatigue. We, on this list, understand. We are all faced every day with the formidable challenge of not giving in to the desperate hopelessness we feel during these tough cycles. Dr St.Amand calls it cycling because the cycles come and go. Although we want them to go away forever, we have to accept that there will be cycles that are hard to bear, off and on ‘till we sufficiently reverse. I have experienced, in the last two weeks, emotional witchines, feelings of despair, anger, a sense of loss, uselessness and hopelessness. But I do know now that it WILL pass and that there are brain-clear days ahead. Perhaps I need to heed my own advice in my posts: submit and be patient! May we all who are cycling tough cycles, at this time, not give in to the despair but rather hope in our complete reversal! (Thanks heavens for Spell Check in Word or I wouldn’t have even been able to write this!!) :o)
I’ve been having so much fun writing again…so I know that my brain will clear again! My limbs have all been going sort of numb on me, lately. Last night I had prickly feelings in my legs like they do when they have been asleep. Then it went away.
06-30-05 – Hey Cathy…Two days ago I started to have pain in my right ankle that just kept getting worse. It's become very swollen and looks like a level 2 sprain. So says my son-in-law who’s a gymnastics coach....The pain shoots up my leg into my rt. hip when I walk. Yesterday, I had one of my BAD headaches, which I haven't had in quite awhile, thanks to Dr. St. Amand and ended up having to take Darvocet and a muscle relaxant...sigh...the story of cycling, eh? I hope it doesn't hang around for 11/2 years like my tendonitis did...how will I be able to exercise????
07-14-05 – My ankle has pretty much cleared. I’m thankful that it didn’t take too long. But it was long enough to get out of my exercise routine…groan…now I have to start again.
07-23-05 - I’m having problems with my right thumb since the beginning of March. It’s acting like a ‘trigger thumb’ problem. It’s swollen in the joints and very painful when I bend it and if I don’t keep it wrapped. I can’t use it, even wrapped, without pain. I’ve had to wrap it since the first week in March. It’s not getting any better. Now my little finger is starting to do the same thing, on the same hand. I have an annual physical in September…she’ll probably say the same thing she said about the tendonitis in my elbow…”nothing can be done”. Will it take 11/2 years to clear like my elbow???
My arms continue to fall asleep and get very numb during the night, waking me up. Doesn’t happen every night, but more than I like! Last night I woke up and my left arm was just burning like it does when the blood is being cut off…I think my muscles around my arm pit and shoulders are swollen thus putting pressure on one of the main arteries that goes into my arms. I had this problem in the late 80’s and early 90’s…just not as bad. Back then the problem went away when I didn’t eat wheat. I guess I need to keep track of what I’m eating when the problem is really bad…
Last night was also the first time in months that I woke up with such bad aching that I got up and took a Darvocet (I had already taken Ibuprofen because of cycling pain this week). Two hours later, I wasn’t any better, so I took more Ibuprofen. Nothing helped to take the pain away. By 9 a.m. it had let up…just goes to show that even after five years, I can cycle something again and have the awful pain that has mostly disappeared.
08-01-05 – Wow! Five years on the guaifenesin treatment! I honestly have to read my journals to remember how bad I felt! I’m still cycling and have days when I ache quite a bit, but I can go weeks without taking any pain medication! That’s a huge accomplishment when five years ago migraines, and painful body aches plagued me all day, everyday. Depression and apathy were ever present. That is for the most part gone now! Very seldom do I have to lie down during the day whereas five years ago I lived in bed! I know I’m doing better because my family seldom looks at me anymore with a questioning look that says, “Are you okay? Are you going to make it? Do you need to sit down?”
My brain-fog is much better these days. Enough so that I’m able to write again but I can’t seem to come up with the words that would express my sincere gratitude to Dr. St. Amand and Claudia. I can actually say that I have a life again; maybe not the same as 20 years ago. Nevertheless, I now have energy to have goals that have given me purpose again in life. I have energy to just enjoy life once again!
08-06-05 – (posted to the guaifenesin list)
It’s hard to believe that it’s been five years since I started on the guaifenesin treatment! Maybe it’s because the first two years are a hazy fog in my mind. I remember, mostly, a body that was racked with pain and a brain that was numb, or I guess more accurately put, no brain!
I was thinking in the middle of July, “I need to post my five year progress report to encourage the newbies.” I began listing, in my mind, all the wonderful improvements I’ve seen and would want to share, when all of a sudden, wham, I was broadsided with one heck of a cycle! So I hesitate to say how I’m doing, not wanting to discourage anyone, but then I think, “Maybe it will encourage the ‘oldies’, who are still struggling, to know they aren’t alone in their five years of pain and are STILL having hard cycles.” (Although I can’t even remember the last time I had one this hard).
It started out with some depression and then just feeling more tired than my ‘now normal’. (Until recently, my ‘beginning a cycle’ symptom was pretty severe depression and lasted much longer than they do now) I lost interest in everything, feeling very despondent and more fatigued as the weeks went by. I was having a hard time sleeping because I kept waking up all night with arms that had ‘gone to sleep’. I would wake up with tingling, painful sensations in my right hand like when the blood has been cut off…I would roll over and it would go away. After a week of this, rolling over or moving didn’t help…they stayed ‘asleep’…keeping me awake! My eyes were red all day, ached and felt like they had sand in them…I know, I wasn’t sleeping. When I did get to sleep, I’d wake up too early and be so mentally alert I couldn’t go back to sleep, even though I’d been up all night trying to wake up my arms…
I’ve had my right thumb wrapped with paper tape since the first part of March because it acts like a ‘trigger thumb’…I bend it and then it gets stuck and it’s very painful to straighten out. Wrapping it helps the pain to be tolerable when I use it. In the last few weeks my pinky, on the same hand, is now joining forces with my thumb...not only does it not want to bend properly, but it aches deep and up my arm.
My ankle swelled up and looked like a 2nd level sprain according to my son-in-law, who’s a gymnastics coach. I had to stop exercising for about 10 days because it was too painful. Then my feet started to kill me when I walked, especially getting out of bed. The pain would shoot up the back of my heels and feel like something was being pulled that shouldn’t be pulled! I now understand the term, ‘fibro shuffle’…I had never really experienced that. My right heel has been feeling much bruised, aching even when I’m not on it.
My neck and upper back have been the worst ever! When I was a teenager I had real problems with ‘stiff necks’, mostly the right side. Like the kind when you have to turn your whole body to look somewhere, besides straight ahead. Now that same muscle has a sharp pain in it when I turn my head, but thankfully it doesn’t go into the ‘stiff neck’ mode…just very uncomfortable!
A few days ago, my depression deepened and then suddenly was gone (usually how my cycles end). I have to say it’s been a rough month, or has it been longer than that? I’ve lost count of time. My ankle is better…can exercise again (although it’s been hard to get started again!). My thumb is improving, hope the pinky follows suit. My arms have decided they’ve had enough sleep, for the most part. My eyes aren’t as red anymore…I think I’m coming out of it!
Guess what? Five years ago I wouldn’t have even had the ability to remember all of this to write it down! I can now actually think again. Five years ago, I wouldn’t have been able to sit this long at the computer because of severe tendonitis in my right elbow and severe TMJ that I would get from holding my arms in that position too long. That is all gone! My daughter, Cherylyn, and I have been busy designing our website…wow! I NEVER in a million years could have even thought about doing that even just a year ago! Until this last year, I didn’t have the energy to get through a cycle without having to go to bed or be ‘laid up’ ‘till it was over. Now I do…naps are mostly a thing of the past for me. I could go on a few more pages with all the improvements I’ve seen, but you’re probably bored already, so I’ll quit…:o)
Before I do, I must say, “Do NOT give up! Guaifenesin is my ‘best’ friend these days! How could it not be when it has
helped me in so many ways: it has energized me to where I feel motivated, inspired, refreshed and so happy about life
once again! Read my post on depression, and you’ll see a contrast of night and day. So Don't You Dare Give Up!
You’re wondering if the unrelenting pain, the depression, the coming and going of cycles is EVER going to go away and
if it will be worth all you have to go through. I can say today, “Yes! It will be worth all the pain and suffering!
Don’t give up!”
1st Year 2nd Year 3rd Year 4th year 7th Year 8th Year
Copyright © 2005 Carol Stous Hetler. All rights reserved.
Contact Carol at: chetler@satx.rr.com