Damaged Hair & How To Fix It

Ok, so I think by now we all know that in order to not block guaifenesin a fibromyalgic must stay away from salicylates in skincare, haircare, oral hygiene products, and even some food products. (Liquors, medicinal teas, salad dressings with salicylate oil bases)

I went through "product withdrawal" pretty hard the first six months. I looked longingly at my pretty handmade soaps and box of mint teas. But after making up my mind that I had to do the adult thing and just suck it up, it was pretty easy from there. Once you commit to it with all your being then finding substitutes is a breeze.

With one exception. Shampoos and conditioners.

Yes, there are dozens of shampoos and conditioners and styling products out there which are safe for us to use. But if you have naturally weak hair like I do then keeping your hair healthy while using the mostly chemical concoctions available out there.... ugh. Horror. My hair started to feel like straw after six months of them. I have wavy/curly Scottish hair and since using these SA-Free shampoos my hair is flat, frizzy, and so damaged my curl has completely disappeared.

Here's what stumps the hell out of me. How is it that companies can continue to get away with making products with main ingredients of: Cetyl Alcohol, Benzyl Alcohol, Stearyl Alcohol, Mineral Oil, and be able to say it "conditions" and "moisturizes" ?!! Alcohols dry and mineral oil only coats the hair; it is a protectant NOT a moisturizer. Akin to putting motor oil on your hair and claiming it moisturizes. This doesn't make any sense to me. You can look at even the supposedly top-of-the-line hair products and they use those same disgustingly cheap filler ingredients.

<----This is an example of a First Class hair product.... which guaiers like myself can't use anymore. Read it and weep. I used to be In Love with this stuff. It's magic. Burt's Bee's Avocado Butter Pre-Shampoo Hair Treatment ingredients: Vegetable Glycerin, Olive Oil, Avocado Oil, Oat Flour, Lecithin, Sucrose Stearate, Sucrose Distearate, Magnesium Stearate, Citrus Rind Oil, Oat Oil, Chlorophyll, Tocopherol (Vitamin E), Nettle Leaf Powder, Rosemary Leaf Powder, Vegetable Oil, Fragrance.

Even Alberta VO5 Hot Oil Treatments contain aloe vera and benzyl salicylate so that's one more awesome product line that we can't use.

Indulging in pure butters and oils seem to be the only way to heal this kind of damage. I'd like to offer a few suggestions in order to create your own salicylate-free hair conditioning treatment, which is what I have been forced to do. My hair is saved because of going Back To Basic Ingredients and doing it myself.

Using the CROWS(corn, rice, rye, oat, wheat, and soy) formula, here is a list of fantastic hair/skin care ingredients you can find at butter and oil supply stores (www.oilsbynature.com and www.fromnaturewithlove.com are examples). Make sure you purchase only the PURE versions of these ingredients.

Shea butter, cocoa butter, rice bran oil, wheat germ oil, vegetable glycerin, colloidal oatmeal, liquid lecithin.

Here's a sample recipe for a "hot oil treatment"- the first one I first started out with:

1. 2 heaping tablespoons of shea butter. (warmed and liquefied in the microwave)
2. 1 cup rice bran oil
3. 1 tablespoon vegetable glycerin
4. You can even add scent if you like! Synthetic, of course. Voila. Personalized hair care.

Once the liquefied shea butter is added to the rice bran oil the mixture will stay liquid; it will not revert back to the hard shea state. Starting at the scalp and working your way all the way to the tips, massage the warm oil all through your hair. The easiest way to apply it is using a tablespoon to scoop it up and pour it into your hand. Now you can use a blow dryer on a medium/hot setting to really help the oils soak in. After 5-7 minutes with the dryer you can wrap your hair up in a handkerchief and let it set as long as you like, even overnight if you wish. I leave my hot oil treatment on for around thirty minutes and then wash it out.

The first time I did this treatment I was SHOCKED at how well my hair lathered when I shampooed it out. I only had to wash it once and then I was done.

After a month of treating my hair gently with natural oils and butters it is definitely repairing itself. I've quit using my conditioner and am instead using a pure mixture of shea butter and a drop of rice bran oil( a small smear rubbed between my palms) every day to smooth my frizzies and keep my hair in good shape. My hair doesn't look oily or greasy and it certainly doesn't feel oily to the touch. My curls look better than ever. I just wish I had discovered this trick before my hair got trashed.

If anyone can give me some advice for shampoos I'd be truly thankful. I'm beating my head against the wall here, trying to find one that doesn't have those alcohol or mineral oil bases.

Progress Update

I'm living on my heating pad today. The sudden change in weather has my legs hurting quite badly. Can't really seem to get away from it for more than an hour before my knees and lower leg bones start aching again. I think this is pain which is pretty much here to stay; it's not some FM symptom which will dissipate after a few years of regression with guai. Having chronic shin splints and then stress fractures in both tibias when I was nineteen assured this is an injury which will always ache in the winter.

I'm on the same meds and dosage. Have an appt on the 28 of this month for med renewals. I'm going to get a referral for a pain management clinic so that I can get stronger meds for these rare days when I really really need it. Now here's the million dollar question- can we find a med that is a NON opiate I can tolerate? hmmm... I believe this is going to be a trying experience but there's no way around it. I need the meds.

Caffeine on the Guai Protocol

I've discovered the past few weeks that I'm making progress in recovery and in a way I never thought possible. I can once again enjoy a can of Cherry Coke and not feel homicidal or hung over. Sometimes both at the same time.

Caffeine usage was something I had to cut out several months before I crashed into full-blown fibromyalgia. I used it (Mountain Dew Code Red- Yummm!) as a way to help me stay upbeat and alert at my job. But I noticed that for some inexplicable reason I felt myself becoming more and more agitated when drinking it. I tried other forms of caffeinated soda but with the same results. I seriously doubt anyone in their right mind would make the connection that early on between caffeine related agitation and fibromyalgia.

Then the insomnia started. Ye gods I was ready to kill myself after the fifth night of achy tossing and turning. And then I crashed hard into total body pain. The rest is history.

Anyway, my husband works for Coca-Cola. Naturally he gets awesome deals on whole cases of soda, sports drinks, and vitamin waters. When he comes home with a car trunk full of goodies I really hate him. He and the boys drink and sample all kinds of yummy treats. And I'm left sitting on the side lines drinking water or a plain sports drink to keep myself properly hydrated. Several months ago I posted information about the importance of staying hydrated when using guaifenesin. That means that you stay away from caffeine(it dehydrates you) and too-sugary drinks because it'll make our glucose go nuts. A high percentage of fibromyalgics are hypoglycemic or borderline. Playing around with the sugar levels in our body bodes ill for us. Our body simply can't handle the drastic extremes. So eating and drinking healthy is a must.

That case of Cherry Coke had been staring at me a while now. I could taste it. I wanted it. So I grabbed a can. And... everyone in my house survived. YAY!! lol

I've figured out that I now have a tolerance level of about one serving-size can every two days, give or take. My taste buds appreciate the change.

Eleven and a half months after beginning the protocol I can now drink a caffeinated drink. That is a cause for celebration. I am on the mend.

I'm going to try my favorite blend of chai tea next. I still have a lonely, dusty box in my cupboard. Good Earth teas are just plain out-of-this-world good. I can't wait to enjoy my Organic White Tea again. Oh!- and my Organic Apricot Ginger Black Tea!! I miss it like a long lost friend. I'm especially psyched about the new page of Recipes I found on the site. Mixing various tea blends to achieve a unique tea sipping experience.

Recovering this ability to occassionally enjoy a caffeinated drink leads my mind to the quote found on Dr. St. Amand's site, "The only way to get over it is to go through it." I think I've earned the right to say that I've 'gone through it' and I like where I am currently. It's not easy. It is a fight. But it has been immensely worth the struggle. There aren't any shortcuts with the protocol. Well... unless you overdose yourself on guai by 200mg a day or more. Which I have done. You'll start cycling so hard you'll want to DIE. It is utter hell. And it makes you feel stupider than hell because you put yourself in that position to begin with. So I don't recommend it. Even if it does help your body clear faster. It's not worth the agonizing pain.

And just a quick note about salicylate concerns with teas. Unless the tea is marked as "medicinal" then it's ok to sparingly drink and enjoy. Medicinal teas are concentrated in extracts, oils, and herbs. A major no-no for guaiers no matter what year or decade you are in recover-wise. Regular sipping teas are not concentrated. Read packaging very carefully. Then again some guaiers are completely intolerant of the minuscule amounts of salicylates found in teas. Everyone is a bit different. It pays to listen to your body and if you find you can't tolerate something- back off it for a while so that your body can heal. A few months later try it again.

City of Hope Research Update!!

While putting the finishing touches on my last article I clicked on over to grab some info off Dr. St. Amand's site and saw this:

BREAKING NEWS---WATCH THIS SPACE

IMPORTANT ANNOUNCEMENT COMING SOON--PHASE ONE OF CITY OF HOPE GENETIC STUDY COMPLETED AND HAS BEEN ACCEPTED FOR PUBLICATION!!

I nearly had a coronary when I saw it. I'm so excited. www.fibromyalgiatreatment.com It's in the upper section on the right column. That's where all the major updates are listed.

This is real. It's really REALLY happening!! Guai is making its way into medical journals. All the Doc's hard work is finally going to pay off. He's not a nutcase. And he isn't using the placebo effect or his "charisma" to charm patients into feeling better. Guai really works and the City of Hope research will vindicate him from all the #%^&#$% he's had to bear from Dr. Benning, the man who headed the last "trial" which was an absolute fiasco.

All the folks whose only argument for not trying guai being that it has not been researched effectively- your crutch is about to disappear. Truth will out.

Understanding CROWS

{Dedicated to Stuart, who is making the plunge.}

When beginning the guaifenesin protocol some terrifying thoughts can enter your mind.

"What will I bathe with?!" is often the first. "But wait, I have dry skin... I can't use all the chemical crap out there. What am I going to do?"

Fear not!

Bath soaps, shampoos, conditioners, hair styling gels, hairsprays, deodorants, body moisturizing lotions/creams, ... you name it- can all be found salicylate-free. You are not stuck using products which only contain synthetic ingredients, either. I have severe eczema and bit my nails the first month and a half, fearful of an outbreak of a new rash because I didn't know what the heck I was going to be able to do about it. I'd like to offer some plain spoken advice and condensed information here to speed you on the path to knowledge.

It is vital to fully understand what the acronym CROWS means before you begin the protocol. This was something that I fretted for well over four months over, before I finally sat down, dragged out my book, "What Your Doctor May Not Tell You About Fibromyalgia" and did some real honest to goodness studying. Taking notes, even. Then I tackled the Doc's website and forums, perusing the entire scene there and when I discovered the forums were actually created to be a How-To guide I had a good long cry. Here was the help I needed. I was saved!

But it's not just about finding a list of products you can use and voila your problems are solved. It's about learning to spot inconsistencies when these same products suddenly have a tweaked ingredient here or there. Is the change good? Is it bad? And is that new/changed ingredient a salicylate? If you don't know what that suspicious new ingredient actually is then you don't stand a chance of finding out whether it is safe to continue using or not. And YES companies do change ingredients. Frequently.

The very last thing you want to do as a new guaier is to sabotage yourself through ignorance.

The first rule of being a smart guaier is that you must read ingredients every time you purchase a product. Even if you've purchased it before. There is no way you can get around this. After around the fifth month of diligently reading labels(I was bad the first four months) I could pinpoint a salicylate within five seconds of looking at an ingredient label. Practice makes perfect, as the old adage goes.

The (almost)written in stone guier law of "if it is an extract of a plant then you can't have it" isn't necessarily true. Guaifenesin is an extract and we use it every single day. First, let's talk about that weird acronym again when I'll get into the oddballs of the bunch.

CROWS stands for

Corn
Rice, Rye
Oat
Wheat
Soy

Corn, Rice, Rye, Oat, Wheat, and Soy are all the main oils and extracts we can use without destroying our progress on guai. Let's delve into these ingredients a bit more so you can understand just how flexible they are.

Corn oil is somewhat obvious. It's a common, cheap oil which is a good carrier base for a lot of different applications, from massage oil to conditioning treatments for the hair and skin.

Rice bran oil is becoming a more common skin/hair care oil ingredient now that we understand it's properties and just how much it increases the moisture levels of the human skin. Loads of vitamins, too.

Oat extract(oil) and oat bran extract or oil is an ingredient which is commonly used as a thickening agent. You'll find it in a lot of hair care products or body lotions because it's so fortifying and has such wonderful moisture retentive properties.

Wheat germ oil has a history, vitamin make up, and usage list pretty similar to rice bran oil. A lot of people who use one don't mind using the other since they are so similar. They're thicker, heavier oils which are absolute powerhouses of vitamins which do great things for our body, inside and out.

Soybean oil and extract can be used for the same applications which corn oil would. The next time you see a company espousing that they've "harnessed the properties of soy" just think: they're talking about soybeans. Your everyday, ordinary soybeans. The kind which are an acquired taste at the dinner table.

Ok, there you have it. The CROWS acronym has been demystified!

If you feel weak-kneed at the prospect of going out and finding products which only contain CROWS ingredients I'm about to make you spontaneously combust out of sheer joy-- these aren't the only ingredients you can use. You read right!

Claudia Marek explained it best so I'll quote her:

"Butters which are made from the seeds of nuts are salicylate free. A true butter can be used on the skin because a true butter is a processed fat made from the content of a seed, i.e. cocoa or shea butter. However, as demand has increased for the exotic sounding butters, manufacturers are creating butters by adding drops of plant extracts to plant oils--for example creating aloe butter from aloe extract and coconut oil. For this reason unless you can identify a substance as a true processed fat (butter) such as cocoa, shea, or mango seed butter do not use the "butter.""

Here's the part that Claudia doesn't spell out-- there are lots of butters made from nuts that do have salicylates. Pistachio butter, almond butter, jojoba butter, to name a few.

www.Drugstore.com seems to be the best place I have found which is meticulous when it comes to listing the ingredients of each product they carry. Before I shop for a new product that's where I go. If it's not there then I go to the product company's official website. If info isn't readily available then I email their customer relations department directly, informing them that I have an allergic condition to certain ingredients and need information before I can use their product.

Here's a list of the more strange salicylates which are hiding in products: mushroom extracts, algae and kelp extracts or powders, acacia, and bisabol(it's a bark).

Here are a few ingredients, which, at first glance you'd expect to be salicylates but ARE NOT: hydrogenated vegetable oil and sodium lauryl sulfate(from coconut oil). The reason is that these plant oils have been refined and changed into a chemical compound where the salicylate has been destroyed.

Besides the ingredients listed above and the CROWS, we cannot use plant oils, gels or extracts. No syllables with camph or menth(like in minty toothpastes) No aloe or other plants.

Now I'd like to open up the blog for question from all you curious readers out there concerning salicylate ingredients. So hit me with em! I'm ready for ya.

In the comments area you can copy/paste the ingredients of a product from a company's website if you like or simply list one particular ingredient which sounds questionable.

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Helpful hint: www.fromnaturewithlove.com and www.oilsbynature.com have a wonderful array of butters and oils and very nice prices! That's where I get a lot of my own supply for whipping up my own moisturizers and hair treatments so I'm not using the chemical laden stuff in stores so much. However, make sure you are purchasing the pure butters. Not the combo butters.