Going on my 6th year on guai! What a rollercoaster ride it has been. I've seen the bottom of the pit and I've 'touched the sky' during the past five years. I have so much hope that it's mostly uphill now!
10-14-05 – It’s hard to believe that five years ago I could hardly read my emails and could only reply to a select few because of shoulder, back and neck pain. If I was on the computer too long, it would fire up my TMJ. I use the word ‘fire’ because that’s how my neck, shoulders and chest would feel: a burning sensation that was very painful that would then progress to severe headaches. Today I’m busy writing my book, The Pain Behind the Mask', which I hope to get published by next summer. This means hours on the computer everyday. It’s a miracle that I can even do this. And it’s a miracle that I can think well enough to do this. Although I still have brain-fogged days and moments, for the most part, I’m able to put into writing thoughts that are actually there!
My thumb, that had to be wrapped from March to August because of having the characteristics of a ‘trigger’ thumb, is pretty much painless these days. It bends smoothly and without pain…almost normal. My pinkie continues to act like a ‘trigger’ finger, but hasn’t gotten as bad as my thumb did. I have hope that it will also clear up soon .
A week ago I woke up and realized that my teeth were chattering and I thought, “Gee, I’m cold”. It was cool (Texas in October) but not cold. I then realized that I was having severe inner trembling. It was the weirdest thing. It happened again a few days ago…I’ve been feeling anxious with a feeling of pending doom off and on. I had this problem: inner trembling and severe anxiety, in the early ‘90’s. So I figure I’m probably cycling my nervous system…
My abdomen muscles continue to feel swollen with tenderness from my ribs down to my groin. My right hip continues to cycle off and on with pain increasing quite a bit when cycling and then no pain in between. My feet have been cycling and are quite sore off and on. My lower back on the right side still has swelling and pain when cycling…but the hard ball that was there five years ago has now spread out to a large area of swelling that is slowly going away. I’m a low-doser who doesn’t really cycle in the true sense of ‘cycling on the guai protocol’…there are rarely ‘rests’. So I have to think of my cycling as a continuous process of cycling phosphates out of my kidneys. I continue to have pain almost everyday, but the levels of pain are way down. And as my energy levels continue to improve, I’m able to better tolerate the discomfort.
For the most part, I’m starting out my 6th year on the guai protocol feeling stronger. It’s hard to describe. Before there was a feeling of ‘things aren’t right in my body and an overall weakness’ which, of course, was a result of phosphatefull cells causing a decrease of energy in my cells. Now I feel an overall wellness: my cells are now able to do what they’re supposed to be doing and as a result I’m experiencing energy in all my cells that produces a feeling of strength and endurance. I can’t tell you how wonderful this feels!! After two years on the protocol, I began to exercise (more than walk from one end of the house to the other or walk when doing necessary errands) and it felt like I was in a physical rehabilitation program for a broken, non-functioning body…it was painful and took determination and discipline to do it. Now, there’s a source of energy inside that ignites my limbs to do what I’m asking them to do. Now, other than my few and far in between ‘bad’ days, it no longer feels as though I’m rehabilitating my body…now it’s just good, normal exercise! Oh, what a wonderful thing energy is!! Dr. Amand and Claudia have given me one of the greatest gifts in my life!
10-18-05 – Last night I woke up off and on with terrible pain in both TMJ areas. It was a deep, aching pain that my Darvocet hardly touched. Oh, what joy it will be when my TMJ problem is completely gone!!
11-20-2005 - “I’m screaming inside and smiling outside” That’s how I felt by the time I got to the fourth store, yesterday, on my shopping spree. I had started to cycle again which is always preceded by brain-fog that carries into the first part of my cycle. I’ve learned that if I need to go shopping when brain-fogging I need to make sure that I stay off of auto-pilot, which is almost impossible to do because before I know it I’m thinking, “Where did I just come from? What was I just thinking? Where am I going? Wake up! Snap out of it!” I try desperately to get my mind conscious of what I’m doing and thinking. It hurts my brain. Sort of like when I was young and someone told me to move ONLY my pinkie finger away from my other fingers or my pinkie toe away from the other toes…
By the time I arrived at Wal-Mart, one of my last stops, I felt like screaming. Twice I had freaked out because I didn’t see my purse in the cart and momentarily didn’t know where my purse was, only to realize it was on my shoulder. Of course, I never leave my purse on my cart, but I had put it down a couple of times because it was bothering me while I was checking out some prices. Since putting my purse down was out of character for me, it seemed to set off my anxiety attacks…
I was getting more tired and more brain-fogged as the moments ticked by. As I walked down the aisles, I felt like my brain was having a tantrum and was lagging WAY behind me. I saw things, but I was still running into them with my cart. When I nearly mowed down the little old lady without even apologizing (which I realized a second too late) I felt like screaming…I could NOT think!
I have learned how to put my mouth in a certain position that looks like a smile because in the past I had people ask me while out shopping, “Why are you so sad?” So to prevent that, I put a smile on the outside even though I’m screaming inside with frustration at my brain and my mowing down little old ladies...
Someone recently asked ‘how good is good?” and I say it’s all relative because we are each unique in how we progress. This question calls on us to make comparisons…to consider in relation or in proportion to something else or someone else. To what? How I felt five years ago? Yesterday? This morning? Or to Jane Doe? It’s hard for newbies to understand that in this treatment, unlike any other, the improvements that are made, for the most part, are minuscule! It’s hard to come up with a comparison in the beginning of the guai reversal process, of ‘before’ and ‘now’ and so we get discouraged that ‘nothing is happening’. Just 6 months ago, I was still experiencing some moderate depression at the beginning of my cycle. Four years ago it was severe depression (severe brain-fog) that went to moderately severe, then to moderate, then less moderate depression, and etc…you get the picture. But, today, for me to make that comparison is hard because I can’t really remember how bad it was unless I read my journal.
Four months ago I had my thumb wrapped (fifth month of doing that) because of severe pain when it would bend or when I would use it. It SLOWLY improved. Then my pinkie started. Today, there is no more pain in my thumb and the pinkie is hardly noticeable. But my left elbow is swollen and very painful…”how good is good” Well, my thumb no longer hurts, my right elbow is completely healed after going through 15 months of what my left elbow is now doing… One thing improves and goes completely away and then reversal in another area comes in to takes its place. That’s why it’s almost impossible to explain to anyone that we are doing ‘great’ until we’re pretty near the completion of our reversal because it would take all day to list all the small improvements, in certain areas, that add up to ‘doing great’.
So, until then, we keep smiling outside even though sometimes we’re screaming inside with frustration, pain, fatigue, depression or whatever seems to be pulling us ‘under’. But even that is getting better! I have very few days now of feeling as though I’m screaming inside, as I go 'under'. The smiles aren’t pasted on my face much anymore. I don’t have much need for my mask these days. I’m smiling for real because I’m feeling SO much better thanks to Dr. St. Amand and the guaifenesin protocol!
11-21-05 - (a post sent to the Guaigroup list) Actually, going to four stores in a row is a testament to how well I'm doing!!! I wasn't tired doing this, nor was I fatigued to the point of horrible exhaustion when I got home...five years ago, yes, this would have been too much. (I can't tell you newbies how wonderful it is to even say this in a post because I was diagnosed with CFIDS 16 years ago!) I was merely brain-fogged, which I've learned to accept and deal with when I start a cycle. The problem is...I know it's starting (the brain-fog) but it's not too bad, so I go run errands. Which by the way is another testament to the guai's miraculous work because three years ago I would have had to stay home the minute the brain-fog went from moderately severe in between cycles to severe at the beginning of a cycle.
Now, I don't have much brain-fog in between cycles and sometimes it's bad at the beginning of a cycle and sometimes not so bad...Since I never know how bad it's going to get, I continue with errands. Saturday it got a little worse than I had anticipated...:o( That is why I find it frustrating to the point of feeling like I'm screaming inside with the frustration. I have the energy, but my brain is throwing a tantrum, lagging behind, pouting, “NO! I don’t want to have to think!”...
But I will take everyone's kind advice that have emailed me, and pull back the reins of my new found energy!!! :o) If you are just starting the protocol, or have been on it for, even say, three years, don't give up hope! This will be your testament if you just hold on to the hope of gaining back your energy in every cell and persevere the journey!!
1-3-2006 - Progress: your reversal is SO slow...DON'T GIVE UP!! (sent to the Guaigroup list)
You're so fatigued and have so much pain...Don't give up!!
You can't think and wonder if you'll ever have a brain again...Don't give up!!
You feel lazy and irresponsible because all you can do is lay in bed or on the couch most of the day...Don't give up!!
You feel so unproductive and useless...Don't give up!!
You feel like you're on an emotional roller-coaster and just want to get off...Don't give up!!
You wonder if you're ever going to have more of those 'good' moments or days...Don't give up!!
I had all of these thoughts and more before and during my first four years on the guaifenesin treatment. Five years and five months later, I can tell you that all the unrelenting pain, tears of frustration and horrible fatigue have pretty much disappeared. I knew I was getting better but didn't realize how MUCH better I was until my body, brain and emotional stamina were put to the test in the past two months.
October and November were very busy months for me while I was trying to get my manuscript for my book copied and ready to send out to 8 book reviewers before the holiday season got into full swing. My daughter was expecting her first child Dec.6th so the day after Thanksgiving I got out all the Christmas decorations and got them up in record time. I began to do a little bit of gift shopping so that I would be available to help my daughter.
Well, before I could get all my Christmas shopping done, my grandson decided to make his appearance Nov. 27th. Life became complicated when my daughter had to have a C-section and REALLY needed my help during her recovery. December was busy with helping my daughter non-stop for a week, going home for two days while my folks dropped by on their way to FL, catching up on laundry and cleaning the house, going back to help my daughter for another week (because she had complications with her incision), buying gifts, preparing menus and food for our celebrations without my daughter's usual help, going back to do my daughter's laundry...
It is January 3rd and I still haven't relapsed or even feel very tired. Just the normal tired at the end of the day that a good night of sleep gets rid of. My husband and I went down to the SA River Walk today and spent the afternoon walking (about 4 miles).
I feel as though someone took out my dead batteries and replaced them with Energizer batteries. If you had told me that this is how I would feel four years ago or even a year ago, I probably would have said, "Yeah...I wish!" and not really believed you. So don't give up! Be patient and accept that maybe your progress will be slow and painful, like mine, but believe and keep hoping, like I did, that there are better days ahead for you! It WILL happen!
Sure I'm still cycling. My arms still wake me up once in awhile at night because they are numb, tingling and hurt so bad I can't sleep which is caused by the swelling in my upper back when I cycle. Yes, I still have problems, but the BIG difference is that the energy level is SO much better that all those aches and pains can be tolerated and ignored while I stay busy!
So don't you give up!! It will be worth all those dark, lonely and painful days. Your energy levels will return and you too will feel like the Energizer bunny!! You too will feel so incredibly grateful to Dr. St. Amand and Claudia for making this possible and you'll be so thankful for the Admin ladies who held your hand and guided you in your journey. May you soon experience better moments that will give you a happier new year!! Don't give up!!
2-3-06 - There I was sitting in the kitchen crunching on carrots when it dawned on me that I had been doing that a lot recently. Wow! I've been eating raw carrots again without my TMJ flaring to the point of a bad headache, aching eyes and an aching neck. That problem is slowly clearing up! It's wonderful! I can even go to the store and buy cat food and gravel for the litter pan without my daughter needing to come along and lift those heavy sacks for me! Go guai!
2-20-06 - It seems that I'm done cycling my right thumb and pinkie. My r. index finder is taking its turn now...a little swollen and tender. The tip of my middle finder continues to feel slightly numb...don't know what that's all about. My arms are no longer falling asleep on me during the night. I've been able to discard the small 'sand' pillow I had to put on top of my regular pillow; elevating my head helped. It's been awhile now that they haven't gone numb and tingly on me during the night, so maybe I'm done cycling whatever was causing that symptom. The pain in the muscle on the left side of my neck is slowly improving also. Still very stiff...can't really turn my head to look for cars while driving...but it's not aching as bad as it was there for about a month. I'm almost done with the manuscript. I'm about ready to send it to the book editor. I've been cycling pretty good the last four days with pain and quite a bit of fatigue, so that has slowed the process down some. Lord willing, it will get done soon!!
2-28-06 – Well, I thought I was done with my manuscript…still working on it. Next goal is getting it to the editor 3-20-06. I had a VERY hard cycle with pain like I haven’t had in over a year. It, and the brain-fog that accompanied it, really slowed down my editing process. I was back on my Darvocet and not able to sleep for a couple of nights because it didn’t get rid of the pain. Only took the edge off. I was about ready to pull out the ole heating pad, after two days of intense pain in my hips, lower back and legs, when the pain decided to go on its merry way…:o) Now I’m back to what is normal for me these days which is living with the nuisance kinds of pain: opening my pill bottles shoots pain up my arm from my elbow into my shoulder joint, sharp pain in my right hip joint when I first get up and take a few steps, bad short-term memory loss (this is just as painful to me as the discomfort that comes with FM) and some slight aching all over.
3-16-06 – Last night I had to use my sand pillow again because the pain in my neck was very uncomfortable. The right side of my neck was stiff again during the day to the point of not being able to turn it and look to my left. When I tried to relax and rest my head on the couch, I would have severe pain. Watching TV, I had to sit straight up and hold my neck a certain way to not feel pain. Lying down was the same. I had to get the sand pillow just right under my head otherwise when I went to relax my neck, there was severe pain….guess I’m not done cycling that side of my neck….the muscle relaxants I’m taking for this muscle stiffness isn’t doing a thing. I guess I could take stronger ones, but then they knock me out during the day, rendering me useless.
4-10-06 – Neck is better. I have stopped drinking coffee as it was making me achy all over and I’m wondering if it’s been slowing down my clearing process. I’m thinking it has been giving me enough insulin surges and has been driving phosphates back into the cells. I’ll stay off of it for awhile and see if I clear faster again…wait and see, wait and see…my fibro motto!
4-30-06 - "Re-ha(ouch)-bi-li(ouch)-tate, Re-ha(ouch)-bi-li(ouch)-tate, Re-ha(ouch)-bi-li(ouch)-tate...Rehabilitate", I chant as I try to walk or jog. Persistent, sharp pain echoes in my right hip with each right footstep I take. I've wanted to just sit and not exercise, but I have learned that this actually makes it worse. So I dig deep for the will-power to take the steps and think of it all as rehabilitation. That helps. As I work through the pain, it slowly disappears. That is until I sit for awhile again...like when I'm working on my book...
My right middle finger still has its days of numbness on the tip. Can get quite irritation. I wasn't having any problems with that or my arms going to sleep, during the night, for about a month. But then the numbness started on the tip of my finger again and a few nights later I woke up during the night with arms that were numb. Its not as bad as before, so I know that I'm cycling the phosphates out and one of these days this problem will be long gone in the same way the other many problems have come and gone over the past six years.
It's been wonderful to be able to baby-sit my five month old grandson and not have problems with my TMJ. A year ago, holding my first-born grandson, triggered real pain in my TMJ, radiating pain into my eyes, sinuses, ears and head. It's so wonderful to be able to hold more than 5 pounds again and not have this reoccurring problem! The guaifenesin treatment truly works! Take that to heart and believe it if you're a newbie reading this journal in hopes of finding some encouragement.
I'm excited as I see the time approaching when The Pain Behind The Mask will be available for purchase!
6-04-06 - Tuesday, I felt like a happy sloth. I was happy because I flew up to Nebraska to my niece's wedding and came back without any flares or problems. This is a major improvement! I have not been able to fly in the last 18 years because of my chemical sensitivity syndrome. The perfumes, colognes, and smoke that was still allowed in the cabins just a few years ago gave me migraines, sinus infections and multiple problems. I was quite leery of trying it, but since my MCSS had improved so much, I thought I'd give it a try. I'm so thankful for guaifenesin and all the improvements I continue to see.
I feel like a sloth because on Tuesday when I went to pick up the laundry basket with dirty clothes, I suddenly had a terrible pain in my left lower back and hip area. For three days I've had to move EXTREMELY slow. I had blocked my guai for the trip and had started back on it Sunday night. Between starting to cycle again and the strain put on my hips sitting for two hours in the airplane with my grandson sleeping on my lap---my hip complained.
I'm feeling a little frustrated because I was just getting back in shape from not being able to exercise awhile back when my right hip was cycling. Now I haven't been able to exercise this week because it's too painful. Oh well, I'm getting used to this unpredictability being part of the guai protocol. I've learned to just let go of what I want to do and 'go with the flow' of how the guai cycling is affecting my body on any given day. That is the greatest lesson I've learned to help me cope and live with FM and the guai treatment. "Go with the flow."
So now I'm thinking, "Patience! Wait and see if Monday I can jog. If not, I will have to just submit to the pain until it clears up and I can exercise in my usual way. Maybe I can do some walking instead...Be patient, Carol!"
6-13-06 - This is a post to the GuaiGroup on-line list that I posted recently: (The pain in my lower back and hip has cleared up!)
Dear Struggling Newbie,
When you heard about the guaifenesin treatment, you finally found hope for getting rid of the disease that had taken over your life. You started the treatment with great expectation. You anxiously wondered how soon you would see improvement. As the days turned into weeks, then months (and for some years) with none to little improvement, you’re seriously wondering if you jumped on a band wagon that’s going nowhere.
Six years ago, I was you – wondering the above. Now, it’s hard to believe that I ever doubted the miracle of guaifenesin. I didn’t doubt that Dr. St. Amand and Claudia knew what they were talking and writing about. I believed them because their book described me to a “T”. I believed all the Guigroup members that faithfully posted progress reports about their success with guai. What I did doubt was my own ability to do what I was supposed to do so the guai could do its magic. I didn’t have a local doctor’s support - I was on my own.
Six years later, I’m thankful that I had the energy to jump on the guaifenesin band wagon. I’m so glad I persevered through the many difficult months and years on this journey. I’m living again! Sure, I’m not 100%, but I’m not just existing anymore. Yes, I still have FM problems, but the health improvements far outshine the problems!
Here’s some examples just in the past month. This week I’ve been waking up with anxiety in the pit of my stomach. As the day progresses, a certain feeling grows. It’s hard to describe. I feel like I don’t want to think, talk, or do anything. When I think about what I need to get done, I feel like crying. I just want to go crawl into bed, pull the covers over my head and hide from everything. Two days of this, and it suddenly dawns on me that I’m feeling fatigued. You see, feeling exhausted is foreign to me these days, so I don’t recognize it anymore. I have to stop and remember what I did to cope with it six years ago.
Pain that interrupts my activities and thought process is also becoming just an echo in my memory. So, last week, when I started cycling my neck and a hip that then moved to both hips, I had to stop and recall how I dealt with this kind of pain in the beginning of the reversal. It’s been so long since I’ve had this kind of pain, I’ve forgotten how to stop and just submit to it – let it run its course.
I’m 55 years old so I’m still reversing. Just a few weeks ago, I started a VERY itchy rash on the top of my foot. This is the same rash I had on my finger when I was in my late 20’s. It’s bothersome, but it’s a sign of where I am in my reversal. The rash is actually exciting!
I say all of this, newbies, to encourage you to keep going. Have hope that in a few years you too will testify to the miracle of guaifenesin. I can’t list all the improvements in my FM symptoms in a post. But I want you to be encouraged knowing that an oldie who was in bed most of the time and had lost most of her cognitive abilities, is now productive again. An oldie who had become emotionally unstable and who wanted to end her life because she didn’t know who she was anymore, besides a useless burden to family, is now enjoying life again.
There aren’t enough hours in the day to finish doing what I want to do with all the energy I now have. I’m, once again, enjoying family and friends because I comprehend what they’re saying to me and I can actually form an intelligent response. The albatross that I carried around my neck that said “Loser” is gone. I’m becoming more and more emotionally stable. I know who I am now. I’m a fibromyalgic who’s reversing and learning to cope with all the changes this disease and reversal has brought into my life. I’m finding more of my old self as time goes by.
How long will it take for you to feel good? No one can say for sure. Just as we are each unique in the manifestation of our FM symptoms so we are each unique in our reversal process. Don’t compare yourself to the reversal progress of others. Believe that it's working for you! Have patience. Rest assured in knowing, with the guaifenesin treatment, the present will soon be the past. You will be as grateful to Dr. St. Amand, Claudia and the Admin ladies as I am today.
06-20-06 - (Another post to the GuiGroup) Today, I woke up after only 61/2 hours of sleep and was ready to get up and start the day. What a miracle! For years, I've needed 8-12 hours of sleep, or more, and never woke up feeling ready and energetic to start the day. I slowly opened my eyes, groaned, turned over, and went back to sleep...
Prior to contracting Mono in 1985, I only needed, on an average, 6-7 hours of sleep. Mono changed all of that; I was never the same again. I would drag myself out of bed and longingly think how wonderful it would feel to crawl back in. Throughout the day, I would glance at the clock counting the hours left before I could go back to bed, without feeling guilty.
The guaifenesin protocol has changed all of that now. Sure, in the first two years of the reversal process, much to my dismay, I was sleeping even more. Not anymore! I can't describe the exhileration I feel when I wake up and actually feel energetic enough to, first of all, get out of bed and then to actually keep to a schedule!
Every day, before the guai treatment, I carried around a burden of guilt because I couldn't get up until I had slept for, at least, 10-12 hours. I was depressed about it and exasperated that all I wanted to do was sleep. 19 years of fibromyalgia debilitation and 6 years on the guai protocol have taught me some lessons. In sharing them with you, maybe you will avoid the frustrations and self-condemnation that I struggled with for 20 some years.
Thankfully, with guaifenesin, your fatigue will become a thing of the past. It will be difficult to recall the extreme fatigue you had when you're so busy running around like everyone else, again! Until then, don't feel guilty that your body just wants to sleep. Guaifenesin is clearing the phosphates out of each de-energized cell and soon your body will be up and running again! Mine is and it's wonderful!
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Copyright © 2005 Carol Stous Hetler. All rights reserved.
Contact Carol at: chetler@satx.rr.com