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Fibromyalgia Drug Treatment Options and Opinions

June 14, 2010 by Lisa

This is a question I received from a reader. He gave me permission to post it here. I am not a doctor or an official guaifenesin protocol counselor, these answers are entirely my opinion and can not replace reading the book and talking to your doctor.

Hi Lisa. I’m a 40 yr old male. I have Fibro. Have started the Guai protocol (about 2 months in now). I sure would like to ask you a few questions if you have some time.

The last year+ have been absolute hell. I’ve struggled thru via “his grace” and hope to get some earthly relief via Dr. Armand’s protocol. I would love to learn about other tried n true treatment options. Lyrica=nothing, Nuerontin=nothing, etc. Your story is touching and quite parallel to mine.

A quick background on me. I can remember back to at least 10-15 years ago really struggling with fatigue and what at times seemed like “flu” like symptoms. I could feel like I had a high temp, check it and at times come in a degree or 2 below normal.

Never really had much muscle pain, stiffness, spasms or weakness, etc. Fast forward to about 1 yr ago and WHAM! Muscle stiffness bad, tingling in extremities, brain fog etc.

I basically wanted to know if you’ve had any experience with pure forms of Guai without any dye additives like what we see in Mucinex. I took one month of Mucinex 600 mg long acting. Then, I decided to go as natural as I could and purchased some Guai 400 mg fast acting from a company called Pro Health. I’m taking 600 mg of the Pro Health version. I’ve had a day or 2 where I could notice a slight difference.

I’ve been so bad that even a little positive change is noticeable. I’m seeing a doctor who gave me Dr. Armand’s book so he obviously knows of the protocol. I am schedule to report back to him soon. I just wanted to give it some time so that when I see him I can give him a good couple of months working with the protocol. I’m pretty sure that I am “Sal-Free” as best I can be. Changed shampoo, soaps, toothpaste, deodorants etc.

1. Should I try to increase my dosage?
2. Mucinex long acting vs Pro Health fast acting(I’ve read about both and benefits of)
3. I’ve been tested for “Hypo G” and it all came back ok. Blood sugar as well. Should I still try the Dr. Amand diet to see if I notice a better day?
4. Salicylates. Blocking thoughts? I’m trying to adhere to the protocol so that I can at least say that I have tried it.

Thanks Lisa. I’ve just discovered your site and plan to dig in a whole lot more. I just want my life back.

Did you get worse at all when you started the protocol or anytime thereafter? Did your doctor do a body map on you to show where your lumps and bumps are? That way, you don’t have to guess if you are getting better, you just refer to your body maps and even if you still feel bad, if your lumps and bumps are shrinking, you are on the right path.

Dr St Amand says that your left thigh will clear after one month on a correct dosage.

I never did take the prohealth or additive free version. I took mucinex and a blue fast-acting pill.

Do you eat a lot of sugar and carbs? Or is your diet different than that?

I have some thoughts but I want to know the answers to those 3 questions first.

Yes, please look around my site. I really do feel as good as I ever did and I think most anyone can get there.

Hi Lisa. I’ve been on the protocol for 2 months apprx. I’ve had at times, episodes of soreness and such. I’m not sure if it’s the cycling process or if it’s just the fibro saying hello.

My doctor doesn’t map. He said that he didn’t because of some of his female patient’s being uncomfortable with all the touching, etc. Honestly, I’m not sure that he’s an expert but he did know of
Dr. Armand and had his book handy. So as far as this particular doc, he’s better than any other that I’ve seen (All doc’s said “Lyrica” this “Lyrica” that). Another side note, I’ve had every test out there relative to my spine, neck hips etc. All come back ok with only some minor lower back deterioration which most people at 40 yrs might show.

I’ve had so much muscle stiffness, especially in my neck that at times I’ve felt almost paralyzed. Hard to move head from side to side. Muscles in the neck so painful to the touch.

I’ve also learned about 2 yrs ago that I was born with only one kidney. That to me, in conjunction with Dr. Armand’s theory, that might have something to do with my hard core symptoms that I’ve experience over the last year or so. A purging issue? My kidney functions fine and is larger than a normal sized one. Maybe to compensate for the lack of a second and or my body size? If the kidney issue is relative to the phosphate removal that would make some sense, I suppose.

I’ve been working on backing off carbs and sugars. I would say that I have a lot of work to do there. I am about 90% caffeine free. No coffee ever. No cigs. An occasional soda. I drink lots of water. But I do like a cold beer. All my labs tests say I’m ok-blood wise. No Limes, Lupus etc.

In regards to the left thigh clearing, I haven’t noticed anything in the thigh BUT behind the back of my left leg there are at least 6-8 very noticeable lumps. You can move them around. They sometimes feel a little squishy. I have a couple in the same area on my right leg as well. Like wise on each side of my lower back. I’ve been told my massage people that I do have myofacial issues. Neck, shoulders etc.
I’ve had a ringing in my ears for many months now. I’ve read that myofascials can cause that. Not sure.

I need to get back to stretching. I was doing that a while back just trying to do anything to get my back and neck to loosen up. Massive muscle lockdown.

I just picked up another box of Mucinex 600 Long acting. I still have the quick acting Pro Health @ 400mg. I wish I knew the right dosage for me. I’m pretty sure that I’m not blocking and I’ve read some of your thoughts on that.

Any thoughts? I feel that I’ve stayed strong thru all of this so far. Never even missed a day of work. Some mornings I woke up and felt I’d been beaten with a baseball bat. Combined with the numbness in the legs, feet etc, I’ve been scared not understanding what was going on.

Ok, without a map, it’s much harder to know if you are getting better, because guai makes you feel worse as it clears your tissues. … So, maybe your massage therapist could map you? At the very least, Dr St Amand says to get your left thigh mapped because that is how you tell if you are on the right dose – it will clear after a month. So, if you go to get mapped and your left thigh is clear, then you are on the right dose.

Since you didn’t immediately get worse it’s really hard to know if you are on the right dosage – there is a group that is sponsored by dr st amand on the internet .. find it here – you could sign up and ask them specifically what you should do now.

That neck muscle stiffness is something I can really relate to. That was one of the first things I noticed when I got on guai was my neck was freer. Even these days, my neck is what will bother me if anything bothers me (like if I work to much or have a real emotional day). My neck muscles even make me nauseous occasionally when they are stiff and painful.

Wow, only one kidney huh? fascinating! It could have something to do with something.

I did not test positive for hypoglycemia, but I most definitely did have big carb issues. Yes, I think that the low-carb diet WOULD help you if you are one who drinks soda sometimes and eats pasta and bread. See, fibromyalgia is a fascia disorder, in my opinion, and sugar makes your fascia be more glue-like instead of fluid and supple.

I’m not perfect at low-carb anymore, and I don’t really have to be, but I still try to keep it up because it is very helpful. When I eat sugar and carbs now, I can *feel* the response in my body almost immediately, and the next day I am always a bit more stiff.

In my experience, the ringing in your ears is caused by tight cheek and jaw muscles and fascia. They are attached to your ears and pull on them.

Now here’s the thing. Dr. St. Amand does not recommend any bodywork at all. His entire faith is on recognizing that the guai will take time to work and just hanging in there while it does.

I, on the other hand, beleive that bodywork is a wonderful gift to give yourself and I know it was a huge part of me getting better. I recommend you get the book The Trigger Point Therapy Workbook and start learning which muscles are causing what pain and how to help them.

Plus you’ll learn how to work on your cheek and face and neck muscles which will help that ringing in your ears, in my opinion.

I did LOTS of trigger point therapy DAILY for years … and now I do very little. I don’t need to anymore. I feel good. My muscles are supple and pain-free. Now I can help my family and friends with their stuff because I know where the trigger points are, I know what a tight muscle feels like, and I know how to fix it.

Also, I recommend you do this stetch twice a day .. it’s really wonderful and if you do it faithfully it is an instant-stress buster when you need it.

If you are just taking fast acting, you’ll need to take it every four hours, or at least that was my experience. Dr. St. Amand does not recommend just a fast-acting pill, I don’t think.

Hopefully I’ve answered all your questions and hopefully you’ve gotten some new understandings. Please keep in touch – please email me back your thoughts on this. I would love to keep a dialogue open.

are you on my list?

and can I put your questions on my website? – without your personal info, of course – I think it would really help others.

Thanks Lisa. I do feel that at least a map of the left leg, thigh would be a good idea so I will consult with my doctor about that asap. The right dosage has to be the first thing I would assume.
You most definitely have my permission to use any of my story for your site. No problem at all. I’ll check into the fibro news group link that you provided as well. Thanks for the help, insight and your time.
I’ll check back with ya. As I learn more and hopefully start to see some glorious results, I will definitely tell people about you and where to find you.

… a month or so later

Hi Lisa. me again. I am calling my doc Monday to make an appointment. It’s been about 1.5 months since I saw him last and that’s about how long I’ve been on the Guai.
I still feel rough in certain parts. Haven’t really had any “good days” mixed with bad yet. I have started taking(as an experiment) a 600 mg long acting Mucinex and then a little later a 400 mg fast acting. I was wondering at what dosage & length of time did you start to feel better or looser, etc? I definitely have some lumps that I can feel in my right thigh and definitely behind my left leg in the bend of the knee.

Neck muscles still pretty tight but at times seem a little better than they used to be. I feel some swells of burning with soreness and then they may go away. Not sure what purging feels like but it would be nice to know if I am because that would give me more hope. Did you ever have cracking joints? Mine crack and pop equally on both sides of my body.

It’s gotta be part of the Fibro. I’ve had a complete body bone scan and it all came back ok. My wrists will snap, knees, ankles etc. I can massage those areas and feel tenderness and soreness in the muscles and tendons.

I do appreciate your time and suggestions. I have stayed strong thru this struggle. Any light shed on feeling better would be so welcomed!

Does Dr. Armand or his partner Claudia ever field questions or have a help line? I am at the point where I may need to get a real handle on a proper dosage now that I have almost 2 months on the protocol. I’m pretty sure that I am not blocking as all of the topical products that I use have been on the “safe” list(toothpaste, mouthwash, hairspray, shampoo, soaps, etc).

I read in the book that too much Guai can cause the particles to move around causing more pain, soreness etc. I know that the left thigh is key, but my left thigh seems ok. I don’t have any particular soreness or feel lumps. If I press down hard however, the muscle might hurt a little.

1.5 months isn’t very long for guai I think. I read somewhere, maybe on the guai list, that it will take 2 months to clear for every 1 year you have had fibro. So when I read that, I figured that I would take me 44 months to clear because I had had fibro symptoms for 22 years (since I was 12).

and then, Dr. St Amand says you need to take guai forever or you will start getting worse again.

I don’t take guai anymore because I have figured out other, more desireable ways to keep my fascia healthy. I don’t entirely believe in the phosphate theory behind guai – but I loved guai. It was a HUGE part of my healing.

While searching for confirmation of that 2 months thing I found this you might want to read it.

Me, I started feeling better immediately- I started taking guai on a thursday, and on Sunday I noticed that my neck felt looser and free-er than it had felt ever that I could remember. In fact, I didn’t even realize HOW bound up my neck had been until the guai loosened it up.

I still had a lot of pain but my neck ’splinting’ let up a bit almost immediately which was really cool for me because it gave me incentive to stay on the guai.

Now, as for how my journey with guai went, I can’t say with any real certainty because I didn’t have the body awareness back then that I do now. I didn’t ‘feel’ my muscles in the same way that I do know, and I had the tendency to forget all about fibro on my good days. If I had it to do all over again I would keep a detailed journal … sigh.

Yes, my joints pop a bit still. not so much my knees or anything, but my back vertebrae and my neck and my hips.

Yes, the left thigh clears after one month at a proper dosage, so if your left thigh has cleared, then you are at proper dosage and just need to keep it going.

Did you read the book? If I recall correctly, in the book, it sais something like, if you are not sure if you are blocking, then double your dosage for a couple of days and see if you REALLY feel worse. If you do, you are not blocking. If you don’t, you are blocking. you seem like you are not blocking so I don’t know if this would help you at all but I mention it in case.

Claudia Marek is on the official list or at least she was when I was a part of it.

Yes, I was sensitive to noises and smells, and still am sensitive to noise to some degree. High pitch isn’t so much an issue but loudness and certain tones are.

wishing you great relief soon, Lisa

and about another month later …

Hi Lisa. Thanks for the hair info. I hope that you had a nice 4th of July. Just FYI, I’ve been in contact with Claudia Marek who works/worked with Dr. Amand.

She agreed that I definitely need to be taking at least 2 600mg Mucinex tabs per day. I am doing that now for about 1 month plus. I am still have many symptoms. Sometimes a decent moment here and there but nothing consistent. Is there anything else that you’ve found helpful? Any multi-vitamin that you would recommend? Still have some weakness in legs, some occasional numbness/spasms. Still having fairly stiff mornings. My neck is a little better in relation to the stiffness but not anywhere near where I’d like it to be. Just keep on with the Guai? The trigger point book, has that helped you? If so, have you had a partner or therapist help out?

Hi Rob, remember, this is going to take time. It took me 6 years to get to the point where I would call myself ‘cured’, and now, at 7+ years, I still am working out finer points of muscle sensitivity. It’s like some people get a lot of colds or have a bum knee or arthritis – I get sore muscles. But now they are always manageable, I always know what I did to cause it, and I always know what to do to fix it.

I highly, HIGHLY recommend the trigger point book. It will give you control over your aches and pains like NOTHING else will. And working on your own mucles will give you a knowledge and a wisdom about what is going wrong that nothing else will.

Yes, I would keep on with the guai, and read on that list that you got in touch with Claudia Marek on – their biggest message is that this will take time.

I didn’t stop taking guai until I felt much, much better and felt I had hit a plateau with it.

Highly Recommended: 30 Days to Feel Better From Fibromyalgia

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