:::waving hello to fellow Fibromiteymites:::
It has been a few months since I have posted on this board as I have actively been participating on a different board to learn more about the Guaifenesen Protocol with Dr. R. Paul St.Amand in Marina del Rey, CA. In hopes of helping others, I will be periodically posting on my progress here (pros & cons) as many of us have heard and wondered about the Protocol. I started treatment (2 wks ago) with Dr. St. Amand and travel to his office in Marina del Rey for my appts.
However, the following supplement information is not sourced through Dr. St. Amand. This particular post is to share more information from my own online research to find energy help because I have reached the point of being bedridden most of the time and even purchased a wheelchair. I am gradually improving, and I believe that is a result of a combination of therapies and treatments, which include, but are not limited to the following:
Wondering if your low energy fatigue is related to your FM? It is. Wondering if it will get worse as time goes on? It will.
Wondering if there is anything you can do about it? There is.
First, you need to know there is clinical research data from Sweden. The research was conducted in 1989 by two Swedish doctors, A. Bengtsson and K.G. Henriksson. They reported in "The Muscle in Fibromyalgia: A Review of Swedish Studies"--Journal of Rheumatology 16, supplement 19 (1989); 144-49. They found a 22% reduction in the level of ATP in muscle biopsies taken from fibromyalgia patients.
Wondering why you experience fibrofog? It is related to low ATP
What is ATP?
ATP is short for Adenosine 5'-triphosphate. While it is biochemically complex, the short story is it is our body's celluar energy. Our fuel source. It is the gas to our engine. The largest user of ATP is the brain (80%). As a computer user you are familiar with experiencing *screen freeze* when your screen locks up while your hard drive runs off to deal with another behind the scene function. Well that is what happens to your brain when your ATP is pulled off to go deal with the firing pain distress signals happening all through your body. It leaves an insufficient level in the brain, since we are genetically already functioning with a deficiet level even on our best days=Fibrofog. The entire biochemistry of this is explained in Dr. St.Amand's book, What Your Doctor May Not Tell You About Fibromyalgia.
What can you do to raise energy levels?
Well, understandably, not everyone wants to learn or do Dr. St. Amand's Guaifenesin Protocol. But, there are other things you can do to help improve your ATP with supplements and diet. There is clinical research on FM and ATP building supplements. Unfortunatley the rules of this board prohibits posting websites. So here is the bottom line info. Our genetic ATP deficiency means we need additional supplementation and at higher levels than as labeled; usually much higher.
This is just a few of the things that I have learned that help with ATP, and interestingly it all helps with pain & depression!!:
ATP ENHANCING SUPPLEMENTS
1. Malic Acid-1200 mg x2daily
2. Magnesium 500-1500 daily (limited by diahhreah)
3. Sam-E-800-1200 mg. x2daily
I also found additional information suggesting that the following may help:
CQ10
Calcium
RHEA Extract (capsules of Emu extract)
DIET
Leafy Greens (Popeye was right! LOL)
(I am sure there several other good food sources as well.)
EXERCISE
Excercise particularly helps build ATP particularly because it involves deeper breathing which oxygenates the body's blood. Oxygen is vital for ATP. For those unable to exercise you can increase your ATP levels by increasing your oxygen levels through deep breathing exercises.
Hi JAM
As always, you have a very thorough post. I appreciate all your research. I've been wondering how you've been doing and if you started the protocol. Apparently you have (two weeks and ticking!). Keep on truckin' and let me know how it goes for you.
Hi Kirstee, actually I am a little longer into the Guai Protocol. Thanks to your guidance, I read and re-read the book, researched and studied as much as I could, asked questions on GUAI Boards, and I started the Protocol about a month before my first appointment with Dr. StAmand, so I am at 6 weeks into the Protocol this week. Initially, I thought I would just do it on my own without an appointment, but not long into it my hubby wanted me to schedule an appt to ensure I correctly understood it and was doing it properly. I have been bedridden and in a wheelchair off and on for the past 2 years, especially this past year. So, we were desparate for relief and reassurance. Dr. St. Amand was wonderful. It felt so great to FINALLY see a doctor who understood what I experience, and where I got a hug instead of raised eyebrow look of doubt from a doctor. I am so sick of me having to be the one to research and learn, and me knowing more than my own doctors about this. Since starting Guai, I am already out of the wheelchair so I am very thrilled with that! There are some days when I probably should use it, but I am determined to only use it when I absolutely must; usually when I fear I will overwork the muscles into detrimental flare.
It is a journey, as you know. My sister is doing the Protocol along with me, and she is also getting good results; both of us are genetically early responders. But, we know we still have meandering journey ahead of us. We have educated ourself, prepared ourselves, and have both nestled in for the winter to do the Protocol, and hope to be blooming come Spring time, along with the beautiful flowers of Spring.
Now, I want to ensure that I share my experiences with others, like you did for me. I now personally know about a dozen people who have experienced life altering progress on the Guai Protocol. They were bedridden like me, and now have their quality of life back. Some are even improved enough to return to work; unbelievable. I may never reach their level of improvement, but whatever I get is better than what I have had for years. I have spent thousands of dollars on various types of treatment where I got intermittent but temporary relief. I assess them now to have only been coping aides, which are valuable, and I still continue with some. But, they do not treat the cause of the condition, and is why the relief is only temporary. However, any and all relief is helpful. Only time will tell what level of relief this treatment will bring more sustained relief for me. Thank you for all your guidances to help me better understand about this treatment option. As you know, I had totally misunderstood it, and written it off as an option for me. Thank you
Hoo hoo! I love what I'm hearing. You will be surprised how this is going to change your life. Do not limit yourself with such statements as "I may never reach their level of improvement" because you do not want to follow the directions of those words. I believe you are going to be set free from that wheelchair, and you will be hiking the mountaintops as I now do. This protocol takes time, but it is worth the investment into your future.
Isn't Dr. St. Amand wonderful!?!?! His whole office staff are great. My cousins fly in from Utah to see him, that is how much my family respects him. If you have the money to do it, flying in to see him is just great. I moved to Colorado, but I'm still a patient of his. Wouldn't waste my time any where else. Did you have a long drive to get to his office?
Isn't Dr. St. Amand wonderful!?!?! His whole office staff are great. My cousins fly in from Utah to see him, that is how much my family respects him. If you have the money to do it, flying in to see him is just great. I moved to Colorado, but I'm still a patient of his. Wouldn't waste my time any where else. Did you have a long drive to get to his office?
Yes he is! My HMO insurance isn't likely to cover it, but it is well worth expense and the effort. We drove; about 450 miles. We cocoon me into the van seat supported with memory foam pillows all around, with an inflatable bed in the back in case I need that. For the first trip we drove down a couple of days early to give me a couple of days to recover from the trip. Not sure I will need that with every trip, but we make a lil holiday out of it. I can't sleep on a regular bed any longer so we used my memory foam pillows to line the bed for me. So, we made it all work
After seeing Dr. St.Amand I just can't see me ever seeing another doctor for my FM. I have seen many others and all were a waste of time and money in comparison. My HMO GP referred me to UCSF Rheumatology and to Stansford Rheumatology; both said they don't treat FM!!! I was initially disappointed, but it was for the best as that caused us to decide to endure the expense and effort of the trip to Marina del Rey to see Dr. St.Amand. So, it was just meant to be. I have no doubt I will improve as I already see results. This time last year I was bedridden except for the wheelchair to go to medical appts. I know it will take time as I didn't get like this overnight; nor will I improve overnight. My followup appt is Dec and I am anxious to see the extent of changes in my next bodymap. For us, we have decided to make our trips there as *vacation~like* as is possible in my condition. While I can't do anything, we do arrange for a hotel on the harbor and get a waterview room with a balcony where I can sit out and just enjoy the scenery with the harbor boats etc. Then we did some short coastal scenic drives when I was able. Like you, I highly recommend him and/or his book for anyone who is ready to understand FM and pursue actual treatment as opposed to just coping aides. His book thoroughly outlines the treatment protocol where an actual office is not required. Phone calls can be made to his staff who are great to help with clarification questions. One unique thing is that all of the staff are there to help FM sufferers get well. As far as I know I think they all have FM. I know that Dr. St. Amand and Claudia do, not sure about Gloria. It is a small office. FM is not an easy journey, and one that each has to come to terms with treatment options in their own time. For me, I was running out of time pursuing other options as I progressively worsened. Once you reach bedridden status it has a very serious implication for the rest of your general health. The body starts declining far beyond just FM. The body is designed to care for itself through regenerative processes of sleep, exercise, and body movement. When those are no longer supporting you, you deteriorate further. I am on the road back now, finally
Ouch! 450 miles is a long drive. At least you had all your "equipment" with you to help ease your journey. The support of your husband is absolutely wonderful. Can't say that I had the same support prior to my visit to Dr. St. Amand's. My daughter is moving from Hawaii to Colorado in a month. We'll be picking her up at the Los Angeles Airport, along with her car that will be delivered in Long Beach. We plan on taking a travel trailer trip to get her (she's going to need all the help she can get!), and at that time, I want to check in with my "saint" of a doctor
Yeah, it was a very long drive for sure. I am very lucky that my hubby is very supportive. We have been married for 38 years. The beginning of FM awareness was understandably very confusing for him. It was for me as well, and that rendered me incapable of helping him to understand it. It helped that he goes to doctor visits with me (into the exam room) and watching the St.Amand FM DVD. He now understands this so well that he is capable of explaining to others which relieves me of the burden of trying to explain it to his family etc. Since he watched the DVD we both feel that we are a team together in this fight, before I felt rather alone. He was supportive, but didn't understand it which meant lots of spontaneous episodes where he was less supportive at the time of the event. Now that happens less. Now, he gets it that I can't tolerate the sunlight or the radio being loud, so he makes sure he helps with those things. He knows that just walking from the house to the car in the garage fatigues me to point of short of breath so he has all my memory foam pillows arranged and ready for me by the time I make it to the vehicle as I am incapable of arranging those by the time I get to the car.....little things, but HUGE for me.
Your upcoming trip sounds like it will be a long one for you as well! But, the weather will great when you reach Southern CA You said your appt is in Dec, my next appt is Dec 5. It will be here before we know it!
The last couple of days, especially today, was rough with cycling symptoms, ugh, but I am hanging in there. My sensory symptoms today have terrorized me, especially my hearing thang....I reckon I am cycling that now. It feels like I have been in airplane or a 55 gallon drum all day. I went for my weekly bodywork treatment and ouch, ouch, ouch.....but I noticed the day after that I had interesting urine debris so stuff is pulling out. And, now I am cycling again already. Another strange symptom I get is is teeth sensitivity, and that has been substantially worse the last couple of days. So, I had to increase pain meds today. I may just have to live with an increase for the first few weeks or so. As I understand it from Dr. St.Amand the worse will be the first cycles and then it will get better and a little easier. I am determined to get well and claim the quality of my life back. It may not be the path for all, but is the path for me. I keep all options on the table. As you know it was just a few months ago when I was telling you this was one of my last choice of options. I have spent thousands doing everything else for the past 2 years, so it is time for something different as my FM is advancing at pace and in a direction that is frightening. Again, thanks to you, I learned to understand this option well enough to feel I could do it. And, I will!!!
Jam thanks for the info, it is very interesting. I have not read Dr. St. Amand but I think I may have to get his book. I have however read Dr. Tietlebaums books. I do take Malic Acid and some of the other vitamins you mentioned. I think it helps a lot, I take quite a few vitamins in fact and I gear them specifically to take higher doses to my needs. Just another bit of info about the Malic Acid, my husband has a muscle disease called dermatomyositis (there is a myositis board ) and I have him taking the Malic Acid now and he just said this morning how he thinks it has helped his muscles.
Good Luck with your treatment, I'll say a few good words for you.
Jam thanks for the info, it is very interesting. I have not read Dr. St. Amand but I think I may have to get his book. I have however read Dr. Tietlebaums books. Glojer
Hi Glojer, I think everyone should read the book and watch the DVD in order to fully understand this thing we have called FM. It is an cellular energy disorder that has existed forever. It is not new and for hundreds of years there has been effective treatment for it. Dr. StAmand has simply dusted it off, used it effectively for the past 40 years to treat over 10,000 FM patients. The complexities of FM has caused many other doctors to take KEY symptoms like sleep disorder and central nervous system malfunctioning and inadvertently postulate that they are causes rather than key symptoms. Easily understood as each KEY symptom does cause a litany of further evolved symptoms. But they are all JUST symptoms. To get FM into remission you must first understand and treat it at the root of what it is, a cellular energy disorder that causes us to not be able to excrete excess calcium phosphates therefore they get redeposited into our muscle tissues causing the bodywide pain we feel. Men do not get it as easily as women because men have much denser muscle tissue than women, so their muscles reject it. Ours unfortunately welcomes it Calcium is what causes our muscles to contract. Perpetual muscle contraction without relaxation results in chronic pain and muscle spasms. The goal is to get the excess calcium phosphates OUT of our muscle tissue and excreted through urine and skin. It is a very simple process once you understand the root of the problem!!
Jam thanks for the info, it is very interesting. I have not read Dr. St. Amand but I think I may have to get his book. I have however read Dr. Tietlebaums books. Glojer
Hi Glojer, I think everyone should read the book and watch the DVD in order to fully understand this thing we have called FM. It is an cellular energy disorder that has existed forever. It is not new and for hundreds of years there has been effective treatment for it. Dr. StAmand has simply dusted it off, used it effectively for the past 40 years to treat over 10,000 FM patients. The complexities of FM has caused many other doctors to take KEY symptoms like sleep disorder and central nervous system malfunctioning and inadvertently postulate that they are causes rather than key symptoms. Easily understood as each KEY symptom does cause a litany of further evolved symptoms. But they are all JUST symptoms. To get FM into remission you must first understand and treat it at the root of what it is, a cellular energy disorder that causes us to not be able to excrete excess calcium phosphates therefore they get redeposited into our muscle tissues causing the bodywide pain we feel. Men do not get it as easily as women because men have much denser muscle tissue than women, so their muscles reject it. Ours unfortunately welcomes it Calcium is what causes our muscles to contract. Perpetual muscle contraction without relaxation results in chronic pain and muscle spasms. The goal is to get the excess calcium phosphates OUT of our muscle tissue and excreted through urine and skin. It is a very simple process once you understand the root of the problem!!
Kirstee, another personal patient of Dr. StAmand's, is excellent at explaining the specifics of the theory and the treatment so I defer to her to explain further. I am very new to this Treatment Protocol, only 7 weeks for me. Kirstee has been doing it for many years.
Calcium is what causes our muscles to contract. Perpetual muscle contraction without relaxation results in chronic pain and muscle spasms. The goal is to get the excess calcium phosphates OUT of our muscle tissue and excreted through urine and skin. It is a very simple process once you understand the root of the problem!!
