Fibromyalgia and the Guaifenesen Protocol- Reply

[mtoliveoil]

I tried this and it made me flare really bad. felt like I was dieing. Now i'm trying to find an exercise to lose weight. I'm really bad with this

[dianacwolf]

@mtoliveoil Hi. When you said tried this, do you mean the Guai Protocol? If so, yeah, it's a really hard protocol, no doubt about that. There's other stuff you can try, too, outside of the pharmaceutical stuff that the doctors push, (the Cymbalta, Lyrica and all that stuff.) There's Iodoral, (you can google that one), or doing an elimination diet, (many folks with fibro do well on a gluten-free diet.) I've had good success with LDN. Oh, and Magnesium.That's an essential supplement for fibro.

[hollyeandres]

hello diana. i have been on the protocol since aug 09 (600 mg/am + 900mg/pm). I initially did feel tolerably but noticeably worse, which is, frankly, the only reason why I'm still taking it. I have experienced no noticeable cycling and am still waiting for 1 day w/out debilitating fatigue and pain. i tried the hypoglycemic diet religiously for 3 weeks and i am a member of the support group. do you have any thoughts?

[surfercouple]

@hollyeandres Hi Holly- My first year on the protocol was miserable. I ended up slogging through just on blind faith, encouragement from the members of the GuaiGroup, and basically feeling like I had no choice. I'd been to a gazillion doctors. Tried all the drugs du jour. None of it had worked. I had nothing else to try. Guai was my last hope. ("help me Obi Wan Kenobi, You're my last...") the protocol works, but it is very slow. If there was a faster way, I would have done it in a heartbeat.

[surfercouple]

@surfercouple Hi Holly- Part 2- On the bright side- Going into Year Six on the protocol, I can say that I now lead a very good quality of life. I have more good days than bad days. I work out at the gym. I am surfing again, (in the ocean, not just on the computer.) I took a Filipino stick fighting class over the weekend. I play guitar and drums. My brain has recovered, too. I am creative writing again. It works. It just takes time. a LOT of time. It's very slow. And painful. And, slow... -D.

[hollyeandres]

@surfercouple hello diana. that is so good to hear! thanks for the encouragement. none of my docs are supportive of the protocol and believe it to be pseudo science, but i'm holding out. why? cause i don't have many options. i know you know what i mean.

[hollyeandres]

@surfercouple i've also been taking LDN for the last 2 months, was just about ready to throw the towel in (i haven't noticed any difference save for vivid + disturbing dreams) before i saw your post. i'm on too many meds and really need to try to pair them down. glad to hear it's working for you.

[surfercouple]

@hollyeandres Hi Holly! Good to hear from you. Yes, LDN is weird stuff. Other than the super weird dreams, I didn't see any changes at all for four months. Then, the changes I saw were mental changes. Suddenly, I could write creatively again. My brain just got better, and it happened almost overnight. Weird. I'm writing multiple stories at once, and I'm having no problems keeping all the story lines and characters straight. Just recently, I noticed my back pain is better. Not so tight.

[hollyeandres]

@surfercouple hi diane. are you still experiencing the weird dreaming? i'm not sure if i can continue to endure them as a permanent side effect. as i mentioned before i'm considering discontinuing it - but... i have been feeling slightly better this last week. too many variable to be certain what may be responsible tho - huge summer temperature shift, the LDN, or perhaps a much anticipated guai breakthrough? Not feeling great, but pains i've had in my knee and lower back are essentially gone.

[surfercouple]

@hollyeandres The dreams were most vivid in the beginning. I still get them from time to time, randomly, but not as much as in the beginning. It definitely took longer than I expected to see results from the LDN. Maybe it takes so long because the medication is so low dose? Dunno. But, the best part for me is definitely the cognitive improvement. No other med has done that with the fibro, so that's cool. My upper back pain is somewhat better, but still there. Still bugs me. - Diana

[hollyeandres]

@surfercouple thank you for continuing this discussion, diana. it is really helpful to converse w/ someone who has the same condition and is approaching it w/ similar treatments. Quick question. How do you know thet cognitive improvement is a result of the LDN and not a guai protocol breakthrough? Tho you've convinced me to give LDN another month, have you heard anything about how to discontinue it? Does is have withdrawal symptoms, etc.?

[surfercouple]

@hollyeandres Hi Holly, I guess I attributed it to the LDN because I've been on Guai for six years, and my Guai progress has followed the pattern in Dr. St. Amand's book. I am currently cycling my left shoulder and neck, which is the last region to clear. (Then, I'm done. Yipppeee!) So, yeah, I guess it could be Guai, but since it happened three months after I started the LDN, I attributed to the LDN. Especially since the LDN affected my dreaming. (another mental/cognitive effect.) - Diana

[dewdropsnsnowflakes]

My #1 symptom is that my muscles are stiff and don't stretch without cramping. Is this fibromyalgia? I have heard of guaifenesen for candida overloads. I was thinking that fibromyalgia is candida stuck among your muscles. What do you think. Going to start this protocol this month! What are the biggies to avoid that will stop the guar from working properly? Thank you soooo much.

[whatever331]

r u still alive hows the guaifensin protocol work out for u it s been couple of years are you fibro symptom free

[dianacwolf]

@whatever331 Hi Whatever! Nope, not dead. The better I feel, the less time I spend on the computer/Internet. Been doing a lot of volunteer work. Also gotten back to surfing, and working out at the gym. I've been able to reclaim a lot of my old lifestyle. I still have bad days, sometimes. But, it's not like it was before, when everyday was a bad day. I am not symptom-free. I wish! I don't know if I ever will be. Is such a thing possible? I don't take any painkillers, not even Tylenol.

[sandhilldiva]

@whatever331 i have this! what is ldn?

[fdgdfhdfh785]

Great Video :) did you experience any fatigue or brain fog with fibro? Are you completely relieved at this point (in terms of pain). Thank you

[dianacwolf]

@fdgdfhdfh785 Hi! Yes, I had a lot of brain fog. Like a lot of fibromyalgics, I found the brain fog one of the most difficult aspects to deal with. I found changing my diet made a huge difference with regards to helping with the brain fog. Some folks do better on a Hypoglycemic Diet. I didn't because the artificial sweeteners, particularly Splenda, totally aggravated my headaches. I had very good luck with a gluten-free diet. I'm also on LDN, through Stanford, and that's helped brain fog.

[UpDownMostly]

Great video I know many folks who suffer from this and this is great info. Thanks for sharing.

[liliodine]

Thanks so much for posting! I will definitely listen to your other vids & look at your website.

[rebeccagarde]

just wondering if you have finished the protocall? and how do you feel?

[blountore]

sure, send them if you don't mind

[blountore]

will this help CFS, or is it just for pain?

[surfercouple]

Hi Blountoure- Dr. St. Amand believes CFS and FMS are one and the same disease. CFS sufferers just interpret pain differently. However, it is all the same disease. There have been exciting developments recently in the field of fibromyalgia research. In Los Angeles, the City of Hope study has identified the genetic marker for FMS/CFS. They hope to have a blood test ready for FDA testing within a year. But, to answer your original question, yes. - D.

[blountore]

I heard of a couple doctors working on that now. thank god

thanks for the reply

[surfercouple]

You're very welcome. And, yes, it is most encouraging to know how many doctors are now making progress in the field of FMS research. The University of North Carolina has also put out some press releases chronically their progress. I have the links, if you'd like to read them.

[saharra22469]

hI Diana, thanx for your very helpful video. First of all, I didn't know that prolonged use of pain meds would rewire my body and make my pain grow worse. I have been given hydrocodine by a Dr. It's strong and takes all pain in my body away. I know it's psychologically addictive because my body feels like it's 14 again instead of 59. I try not to take it oftern. Other times I use over the counter artheritic strength Bayer.

You look like your 26 or 30. Stunned that you're 40.

[Marymarybobeary]

Question 4 you: If I go into Walgreen's, Target, Walmart, etc. ~ where do I find the guaifenesen? Is it near the vitamins? Is it behind the pharmacy counter? Just wondering where to find it because I am at my wit's end and I think I am going to get the book and give it a try. Thank you for all the info. It is much appreciated ~ we're about the same age and have suffered for about as many years and I know all about taking 11-13 diff meds per day. IT STINKS!!!

[01mandown]

How do i get in touch about this i suffer from fibro and feel alone

[ruseriousfibro]

I found that heroin followed up with a slice of watermelon and a mint julip works wonders. Especially for juveniles with our affliction ;) ;)

[dianacwolf]

Ah, you are just a fountain of good advice, and refreshing ideas. However, you'll be happy to know that children with fibromyalgia do not need to take ANY medication other than guaifenesin, (the gout medication used in the guaifenesin protocol.) No prescription pain medications are needed. So, you can rest easy tonight. No prescription meds needed for the little ones at all. (Guai is a generic OTC.) Cool, eh?

[ruseriousfibro]

right, the guaifenesin is otc. That way it looks like your attemptng to cure the "bigfoot" of medicine. and your pain meds can be veiled as an attempt to cure headaches. This may work with friends and fellow abusers/sufferers. And your husband appeases you because youve worn him down and he is just waiting for your narcolepsy to kick in. just ask the sleepy avon lady. "we just cant seem to move". Thats why it says dont operate machines...because your stoned.......oh but my headache is gone.

[dianacwolf]

Pleasant as those drugs may be, I don't take any pain medications, and neither do many others on the guai protocol. It is not wise to take pain meds for an incurable chronic pain condition. Not of those painkillers are designed to be taken long term. If you do, they will actually re-wire your body's response to pain. Long term use of these meds INCREASES pain. Hence, I don't take them, and any decent doctor will discourage his patients from using them.

[DrMickle]

Hello Diana,

I have just started the Guaifenesen protocol and just as expected I have days that I feel great but return to fibromyalgia pain in the evening.

I feel so good during the days, some days, that I have actually began running just because I could.

It's only been a week though and I am looking forward to continued progress.

[dianacwolf]

Hi Dr. Mickle! This is awesome! You might be one of the few lucky ones who feels better right away. It does not happen often, but some people do show immediate positive results, without having to go through the pain of cycling. Most of us go through the "significantly, but tolerably worse" cycles of ups and downs. You may have gotten the genetic happy card! Congrats! Keep us posted! Ok, gotta' run. Got guitar practice in 11 minutes, and its 11 minutes away from the house. :) - Diana

[DrMickle]

Hello again,

I had a great day Saturday.

Mornings are usually bad and marked by pain and stiffness. But around 11:00 am I seem to warm out of it. Especially after I have had my morning dose of Tramadol, Lyrica and Guaifenesen.

The effects of the Tramadol take about 30 Minutes.

Lyrica has given me substantial improvement as well.

So my days are regulated by my morning and evening doses of Tramadol, Guaifenesen and Lyrica.

[DrMickle]

Just as You and the Doctor said, after starting the Guaifenesen protocol I would have a recurrence of my worst fibromyalgia symptoms. At night I have experienced the worst fibromyalgia burning sensations .

They last all night, disrupting sleep and rest. But by morning it has subsided a bit and is tempered by my morning meds.

Thanks for you blogs as I would have discontinued if not for your and the doctors recommendations.

[blaxtiger]

I've watch your video I have been living with Fibromyalgia for over 30 years. I'm now on Lyrica it seem to be help with my back pain, but because I have Osteoarthritis too. I'm still not pain free.

[dianacwolf]

Hi Blaxtiger- Glad to hear the Lyrica is helping. I haven't tried it myself. I'm trying to limit my meds, but I do still take prescription stuff, unfortunately, for migraines. I would love to be off all medications, and hope to be within the next year. I'm hoping the migraines are a fibro thing. Dr. St. Amand believes folks with fibro are more prone to osteoarthritis, and the damage it causes. But, the better you take care of your body, of course, the less damage.

[blaxtiger]

Hi dianacwolf-I have Osteoarthritis in my feet and knees. The other illness I've gotten with Fibromyalgia are panic disorder, sleep apnea, tendernits in my hands, lose my train of thought, memory problems, depression because of the extreme pain. Hope you have a pain free day.

God Bless

BlaxTiger

[dianacwolf]

It's hard to exercise when you hurt. I've discovered that while exercise does not always necessary make me feel better, it never makes me feel worse. I just need to do less-vigorous exercises on "bad days." I walk, or do gentle-cycling. I try to exercise daily, as this keeps my energy levels high. I also notice diet has a huge impact on how well I feel overall.

[Shaddoedenise]

Hi Diana! I've been on the guai protocol for 5 years now. Don't let ANYONE tell you it doesn't work!!!!!!! It works, all right---I GOT MY LIFE BACK!!!!!!!!!!

[dianacwolf]

Hi Shaddodenise- I couldn't agree with you more! I've been on the protocol for 3 1/2 years now, and the difference is amazing. i recently got a fortune cookie that said: "You are a bundle of energy," (or something to that effect.) I kept it, putting it in my wallet by my license. That actually describes me now! I got my "bounce" back! I feel like me again! It was very HARD work, and the protocol is NOT easy, but I am ME again!

[Shifraeliezar]

Sorry, but I had heard that this book is a scam.

[dianacwolf]

Thanks for the info. Not sure how it could be a scam, though. Guai is a generic drug, so nobody is making money on it. I've been on the Guai Protocol for 3 1/2 years and seen a tremendous difference, to the point that people now tell me: "I don't believe you have fibromyalgia." It's a pretty awesome scam. Did I mention it's a generic drug?

[4ourthofjuly]

a study showed no effect, but st. amand disputed the ability of the researchers to remove the consumption of salicylates from the experimental group.

[luckyneko1]

Guai is great for those who it works for. I would just like readers to realize that the same things don't work for everyone.

[dianacwolf]

Hi Kathy, in addition to the support group, another good source of info are any of Dr. St. Amand's books. His co-author is Claudia Marek. They've written several, all on fibromyalgia. The books have been out about ten years, (some were recently updated.) It should be easy to find copies in your local library.  I see Dr. St. Amand three times a year, and my insurance covers it as a regular doctor's visit. (He's an endocronologist.)

[Bobbyaf]

I am usually doubtful when someone says there is no cure for any disease, including FM. If something caused it, then if we remove the cause the effects will be gone.

[dianacwolf]

Hi, Bobby! I like the way you think. I think part of the reason fibro is seen as uncurable is that it has only "officially" been recognized as a disease since 1992. Its all so new. So many unknowns. Causes? Dr. St. Amand speculates excess calcium phosphate. Others blame toxins, (some get specific, i.e. flouride.) Others blame diet, sugar, yeast, genetics. (sigh) I am hoping a cure is either in my lifetime, or hopefully, in my son's lifetime.

[Bobbyaf]

Thanks...I hope more research will go into this very discomforting situation, and soon too. God bless.

[dianacwolf]

Thanks, Bobby! The hardest part of any disease (or syndrome, as Kathy would say,) is feeling like you are isolated and alone. Fibromyalgia can be very frustrating, particularly since outwardly you still look like the "picture of health." Heck, I've got great color in my cheeks and look very physically fit. Who would know I have a painful muscle disease? But, the support of others with the same symptoms is incredibly helpful, and therapeutic. Thank you for sharing your thoughts.

[Bobbyaf]

Just wanted to share the point that I have heard a testimony by a patient who used nutritional supplements and her FM was gone. She had used drugs for years and got no relief, until when she decided to try whole-foods supplements. She had a complete turn around in her condition.

[k9cathy]

This is NOT a disease but a syndrome of symptoms. Doctors have not yet classified this as a disease although more research is being conducted and they are now looking at this as more of a neurological syndrome. I like what this video says and I am going to look into this protocol.

[nese67]

Hi...do you need prescription?

[dianacwolf]

No. In the United States, Guaifenesin is a generic drug, like aspirin. Outside of the United States, Guaifenesin is handled differently from country-to-country. There's a very good, free, support group for people on guai with members from all over the world. Some members on the group have been on guai for close to ten years, and can share their experiences. I don't think I'm allowed to put a URL in the comments here, but if you Google GuaiGroup you will find them. - Diana

[dianacwolf]

Aye yae yae. Again with selling the $160 a month supplements... I have a problem with people trying to make money on those who have fibromyalgia.

[dianacwolf]

Thanks for spam. I'll pass on the $160 supplements.a month nutritional supplements. On the topic of nutrition, I do believe in "Gerson," which involves eating/juicing 20 lbs. (yes, 20) of fresh fruits and vegetables a day to super-nourish your body so that it may heal itself. You need NO supplements once you stop eating the supermarket convenience crap advertised to us in the 24,000+ commercials we watch each year. Eat the way God meant us to eat, and you don't need super-algae wonder pills.

[dianacwolf]

I also wanted to add I am opposed to people who are trying to make money off folks suffering from fibromyalgia. The fibro community is a close-knit one filled with people helping each other get through a terrible disease by sharing information about what works. People have been trying to suck money out of me for years with drugs, supplements, orthopedic products, natural and alternative this and that. Shame on those trying to profit off of fibromyalgia.

[Guai4life]

hello Barbara good to see your nice reply

Im on the Guai protocol and its really helping me! its been 10 months now and its the best ever thing that i have done for my self

[blahonly]

Ah, the ignorance of the unknown really shows in the stupid replies here. My husband is on the guai protocol. What a lifesaver it has been for him. Barbara

[hunsus]

Why do you call it a disease? I was told by my consultant its not a disease, you cannot die from it!

Good luck with your treatment though

[Krait99]

Look up the definition of a "disease" before you post numbnuts.

Good luck with being smarter.

[dianacwolf]

You will make it. The time goes by very quickly. I am now 2 1/2 years into the protocol. I've made some mistakes, and used some products with salicylates that caused me to block. I regressed backwards, and re-deposited. Uggh! I'm back on track, and working hard to clear this disease again. - Diana

[Guai4life]

Good for you!!

i hope that i will make it t where u are i have been on the Guai for 2 months i know it works