Tuesday Tip – What Have You Tried?

Given that both fibromyalgia and chronic fatigue syndrome do not yet have a known cause or standard treatment, there have been a variety of so called “cures” and “no fail treatments” that have emerged over the years.  I am a believer in staying up to date on the latest research and trying new things to help alleviate symptoms, but if each of us tried all the latest fads and ideas for treatment that is ALL we would be doing.  It would be exhausting.  So, this post is not necessarily a tip, but a way to share with you what I have tried or thought about trying.  I’m not talking about certain meds or supplements, but actual treatment plans that claim healing.  I would love for you to share with me what theories you have bought into over the years that promised relief.  Some of you may have even tried some CRAZY stuff, that you can laugh about now! 🙂  Or perhaps you’ve found something that works!  I’d love to hear it!

1. Something I tried.
Have any of you heard of the guaifenesin protocol by Dr. St. Amand?  It is a pretty convincing sounding treatment.  There are hundreds of testimonies of people who have used the treatment and have found what they call a “reversal of symptoms”.  If you’ve never heard of it or would like to read more about it you can visit their website. fibromyalgiatreatment.com/GuaiProtocol Dr. St. Amand theorizes that fibromyalgia bodies cannot rid itself of phosphates, so they build up in body tissue and cause pain, fatigue, and all our other symptoms.  Taking guaifenesin supposedly helps our kidneys get rid of these phosphates and reverses the damaging effects of fibromyalgia.

Anyway, my mom and I tried this treatment for over 2 years back in the 1990’s.  We were very diligent in following the guidelines and rules (there are many!), but never found the “cure” that so many have claimed.  I’m not calling it a hoax by any means.  If it has helped hundreds maybe thousands of people with fibro and cfs, then I am all for it.  It just didn’t work for me.  It is not an expensive treatment and they are in process of trying to get some published studies done to prove their theory.  If that happens, I will be tempted to try it again.  Any of my readers have any experience with this protocol?

2. Something I strongly considered trying.
There are so many claims out there to cure fibro.  Of course, you have to be skeptical and wary of those who are seeking to take your money, but what about those that don’t want your money, they just want to help?  A few years ago I visited this website, fibromyalgiafullresolution.com and was fascinated with what I read.  This man is a massage therapist who uses a systematized protocol of frequent, neuromuscular massage to cure fibro.  Claiming something about the spine and soft tissues and the connections to our brain and our muscles.  It’s all pretty scientific sounding, but made sense when I read about it.  He is working with a retired Doctor who has agreed to be his credibility and sounding board for this treatment.

I was so intrigued by his ideas and website that I sent him some emails and inquired about his treatments.  I ended up paying him for one hour of his time and we chatted over the phone.  (He is in Ohio and I am in Florida.)  He was easy to talk to and answered my exhaustive list of questions.   Could he be on to something here?  He has many testimonies that claim they are “cured”.  His per hour treatment cost was very reasonable, but I would have to travel to see him for an extended period of time.  He’s clearly not in it for the money, so he just wants to help people.  I strongly considered leaving my family for two weeks to go see him, but ultimately decided against it.  I concluded that if his theory carries any weight, his plan for a published study and a book would eventually emerge.  If and when that happens, then I’ll buy into it.   It was worth looking into and I’ll keep my eyes out for that study!

3.  Something I would like to try.
My latest interest is in the Fibromyalgia and Fatigue Treatment Centers that are popping up all over the country.  Have you heard of these?  Here’s a link in case you are interested in reading about them. www.fibroandfatigue.com  (Dr. Teitelbaum is one of my favorite resources for fibro and he is involved with this organization. His website is endfatigue.com.) They claim that by doing all kinds of blood work, surveys and testing that they can tailor a treatment just for you that will reduce your symptoms, and maybe even eliminate them.  They believe that every case of fibro and cfs is different and can be caused by different things, so you need an individualized plan.  Again, hundreds of testimonials claiming that this works.  If I had the money and a center near me, I believe I would give this a try.  Closest one to me is in Atlanta and that is a five hour drive and raising five kids is not cheap – I don’t happen to have an extra $5000 laying around! 🙂  This is definitely one I am keeping on my radar though.  Maybe someday…

When you’ve been ill for as long as I have, you wake up everyday hoping that sometime in my life span they will discover the cause and cure.  In the mean time, I let myself daydream that one of these claims for improvement in quality of life will actually work.  Which ones should I try? or invest in?

I’m curious to know, if any of you have tried or read about these and other treatments that claim to “cure” you of fibromyalgia.  There is a ton of stuff out there if you dig around long enough.  Anyone want to share their experience?

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15 thoughts on “Tuesday Tip – What Have You Tried?

  1. How about the idea that the cause of CFS/fibro is candida albicans — candida overgrowth in the body that results in fatigue, inflammation, etc.? My naturopathic doctor recommended the book The Candida Cure by Ann S. Boroch, CNC to me and I’ve been following the diet which is pretty severe. No sugar, no yeast, etc. It’s worth a try!

    • Oh, Shelley, I had forgotten about this one. I once tried to eliminate all sugar and yeast once too! I lasted four days. I was miserable! If someone could prove to me that it is a no fail cure, I would do it again, but I was much worse during the detox time and I couldn’t take it. I sooooooooooo much enjoy baking and making treats for my family and then EATING them! I can’t imagine having to give that up b/c it brings me so much pleasure. I don’t have a weight issue so I really enjoy my baked sweet treats. Like I said, if it meant wellness, I would do it, but until someone can prove it – I don’t think it’s for me. I am curious how long you have been doing it and if you have seen any really significant results? Thanks for sharing Shelley!

    • I read about that being a possible cause several years ago. I have also tried a regimine of Fluconazol, a yeast infection medication, no change for me. 😦

  2. I have had fibromyalgia for 25 years and have tried everything from acupuncture, massage, supplements, medications, to diets. The only thing that has ever helped on a continuous basis is prayer and distraction (being so absorbed in a project that I don’t think about myself for awhile!). I also use Dr. Teitelbaum’s energy revitalization powder mixed with water every day. The latest thing I am looking into is Frequency Specific Microcurrent (frequencyspecific.com). I am waiting for an o.k. from my doctor to try this, so hopefully next month. I also had training in and teach 6 week classes on “Living Well With Chronic Conditions” which teaches coping skills. Life is a challenge but we must keep trying to find help for ourselves. Blesings, Kathy Chesley

    • Kathy, Yes, indeed! Prayer is by far the best thing we can do for ourselves! I feel like I’ve tried quite a bit too and I keep trying. I use Dr. T’s energy powder too, but I’m new with it and not sure yet if it is really helping. Do you find that it helps you? I have never heard of FSM, but will definitely read about it. Thanks for sharing that info. Yes, we need to keep trying to find help. That is what keeps me going, is that there are more things to try and new discoveries all the time. Praying earnestly that God will touch a research scientist somewhere that will discover the missing piece to the fibromyalgia puzzle. Thanks for sharing your thoughts with us, Kathy!

  3. In the early years I also tried the guaifenesin protocol after reading Dr Paul St Amonds book, “What Drs Wont Tell You About Fibromyalgia”. Unfotunately it did not work for me either. My dr kept increasing the guaifenesin dose for me to the point I was so dry from head to …. (not quite the toes)…. I just couldn’t seem to get enough to make a difference.

    I love the way I feel when I get up and do a stretching and/or yoga regimine each day. BUT all it takes is a couple days of me getting out of the habit and then it takes weeks for me to make myself get up intime again.

    I have started taking a natural homeopathic medicine for ‘muscle and joint pain’ called Byronia Alba. I get the Borion brand 6c dose (being the strongest dose I’ve found so far. The higher the number the more times it has been dilluted. c = x10 dilution and an x (6x) would mean x100 dillutions.) With it I have been able to get away from taking so much pain medicine. (I was taking two – three hydrocodones each day, on a good day, only one, and a really good day, none.) I am at a job I sit all day. I have found if I can get up an move around more, I hurt less.

    I have also started drinking herbal tea. 🙂 Yogi brand “Perfect Energy All Natural Tea Vanilla Spice” and I mix it with another Yogi Tea, “Ginkgo Clarity” which taste aweful so I have to add a peppermint tea bag too. Just the 99 cent brand I get from walmart.

    Love ~ Prayers ~ & Gentle Hugs to all.

  4. I was diagnosed initially 17 years ago. Initially I tried the traditional treatment with an old class antidepressant Pamelor (nortriptyline) which helped until they had to raise it to the maximum dose and then I could not tolerate the side effects and the treatment seemed worse than the illness. I read a lot of research and then decided my best defense would be good nutrition and good sleep to help my body help itself and that seemed to work along with twice daily Arthrotec an NSAID. I used Herballife back then for nutrition boost. I coped pretty well for many years but in the past year I have had some health issues that seemed to have triggered severe flares. I have been off on medical leave more than 6 of the past 8 1/2 months. I had read Dr. Teitelbaum’s research years ago among many others you have mentioned here. I decided recently to look again since I wasn’t getting anywhere with traditional medicine. I found the Fibromyalgia and Fatigue Center’s online (now Chronicity) and was happy to find one in Detroit area a little less than 2 hr. from my home in Ohio. I went there on Monday and had the ordered lab and urine tests completed today. I believe there are different causes for different people and no one answer will fit all so I’m very excited to see what they find and what the treatment recommendations will be. I know already they want to do IV therapy that will give me a nutritional boost and my immune system a boost.

    • Nena, I am so glad that you have the opportunity to go to a “chronicity” center. I hope and pray that they will be able to give you some answers. I would love it if you kept us updated. Are you a member of our Facebook page? That would be a great place to leave us an occasional update as to wether their treatment is helping you or not. Blessings to you Nena!

  5. my husband is a natural health practitioner – just saying, that he sees many people who were told they have “chronic fatigue” and such and actually are carrying borrellia (which is the causing agent of Lyme’s Disease) and also carrying Epstein Barr Virus. Lyme’s Disease is grossly underestimated. The tests done in doctors offices/hospitals are 30% accuracy. You can’t depend on those tests to give you correct diagnosis. These 2 causes (one a microbacteria the other a virus that attacks the immune system) are most evident in people with Fibromyalgia, CFS symtpoms.
    Just wondering if you have ever considered these possibilities. Of course you probably know if you have ever had mono, than you have EBV sitting dormant in your system.

  6. To Sharon and all that are interested – Sorry it has taken me so long to post this for you, but here is a portion of the email conversation I had with Joy. Her husband uses an EDS machine to diagnose health issues in people. I am not familiar with this machine, so I cannot speak of it. I will say that I have read many instances where people who have Lyme’s disease were misdiagnosed with fibromyalgia. The diagnostic blood tests are only less than 50% accurate, so my question is….how would you know if you have it? if you’ve had a negative blood test, apparently that doesn’t mean anything! I don’t think that I personally fit the Lyme’s profile exactly, but some of you may. Please do your research and see if this could possibly be your issue. Here is part of that email:

    “He (her husband) uses an EDS machine – electro dermal screening which detects frequencies in the body by completing a circuit thru the machine and pressure points on hands/feet. it gives causes or answers to many unexplained health issues…
    I’m not sure i can explain all your questions about why the medical field did not find or diagnose your concerns years back; but i would be totally awestruck if you DID NOT have EBV and Lyme. Epstein Barr virus has been found at the root of every autoimmune disease. Chrone’s disease, RA, thyroid problems etc.all stem from EBV. Lyme’s disease has been totally misdiagnosed. Not only ticks, but mosquitoes carry lyme. It causes brain fog, depression, joint and tissue pain, fatigue, etc. He often finds it in the nervous system and also in the fibrous tissue point….Anyway, i just thought you ought to consider these 2 major ailments that my husband finds in so many people. Of course, there may be more to it. What my husband does is like peeling away layers of an onion. Clear one or two at a time and totally support the body as you clear them out of your system. “

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