The purpose of this blog is to keep track of my illness and progress. If someone else can benefit in any way from my rambling, even better.

Friday, January 27, 2012

Treatment: Day 5

Yep, this is definitely a cycle! I've noticed that it's the absolute worst between 4-8 hours after I've taken the guai pill, so middle of the day and middle of the night. I think I was expecting it to be even worse after all of the warnings in the book about how difficult this is, and it's definitely terrible but Dr. Amand was accurate when he said that it's everything you've been feeling but worse. My kids can hardly touch me without bringing searing pain and sometimes tears, but at least I now know that it will get better and this will be the worst it ever is.

On another note, my chiropractor did additional mapping 3 days after I started the guai pills and my lumps and bumps actually got bigger. I didn't think this was supposed to happen so I'm a little confused...

Wednesday, January 25, 2012

Treatment: Day 3

It took 4 pills before the tsunami hit. Up all night with extensive amounts of muscle pain and stiffness in the morning. Today I've had itching, low fevers, and headaches are back. Woo hoo for feeling like crap!!! Going to give it a few more days before I say this is defnitely a "cycle".

Monday, January 23, 2012

Treatment: Day 1

The guaifenesin I ordered arrived today and I didn't waste anytime taking my first dose. I ordered from http://www.fibropharmacy.com/ Wednesday night and it was in my mailbox Monday morning, not bad. Obviously it's too soon to see a difference so I'll talk a little about the medicine.

Guaifenesin is an over the counter medicine found in much larger doses in cold medicines because it's purpose is to break up the mucus and clear you out. Dr. Amand has also discovered it will help your cells clear out all of those old phosphate deposits and dump it back in your bloodstream to be flushed out through your kidneys, provided you've completely eliminated salicylates so your kidneys will do this job. The guai, as it's called for short, is said to be safe to take with other medications and has no known side effects after being used for hundreds of years. So I won't have to stop my current medications and there's really no risk of trying it out.

My reasoning is, if I do this and it doesn't work then I will know the diagnosis is wrong and I do not in fact have fibromyalgia or I'm missing some salicylates somewhere in my environment and I'm still "blocking". Since the guai hits the rewind button on this disease, I'm actually hoping to feel worse soon. As depressing as it would be to feel even more pain, I'm thrilled with the possibility of beating this disease and feeling normal again! Here goes nothing...

Sunday, January 22, 2012

Getting the Book

Once my copy of "What Your Doctor May Not Tell You About Fibromyalgia: The Revolutionary Treatment That Can Reverse the Disease" by Dr. St. Amand arrived, I didn't waste any time starting it. I'm almost finished with the book now, and it has been an emotional roller coaster. I've felt relief reading about how "textbook" my situation is, that I'm not losing my mind and this is a very real biological disease and hearing others' struggle with the disease knowing I'm not the only one. I've felt despair when I realize that it can get much worse, including permanent damage to my body if I don't  make some drastic changes now. And finally, I felt a great amount of hope that there really is a "cure" and I don't have to live in this much pain and limitation for the rest of my life.

Here is a VERY short summary of what I've learned about fibromyalgia:

1. It's caused by an excess buildup of phosphates in your body that have built up in your blood and redeposited into different systems-brain, muscles, joints, etc.

2. It's most likely an inherited condition (although the specific gene has not be identified yet) and women are 5 times more likely to have it then men are.

3. The phosphates cannot be flushed out of the system because of all the salicylates that occur in most of our products (toiletries, makeup, soap, etc.) and herbal supplements. The salicylates enter our system through the herbal supplements or our skin and then attach themselves to receptors in our kidneys (the very same receptors that are required to be unblocked so the phosphate can be flushed out.

4. As your phosphate deposits build-up, you will develop "lumps and bumps" all over your body-these are the most painful and sensitive areas as well.

5. 100% of fibromyalgia patients have the deposits and lumps and bumps in their left thigh (front and outer side), this is also one of the first areas to clear once you start treatment.

So if you suspect you may have fibromyaglia, it's not in your head and you need to get to a doctor for a diagnosis before starting treatment (although technically there isn't a risk to the medicine that Dr. St. Amand recommends).

Here is a VERY short summary of the treatment:

1. Start taking guaifenesin pills twice a day (you start at 300 mg. for each dose and move up as you need to). The idea is that you want to feel worse since it means your disease is reversing itself, so you will increase your dose until that happens.

2. Eliminate all salicylatese from your environment. This means taking several hours to read labels and use only safe products. Unlike dieting where if you reduce your fat intake by 50% (you will still lose weight) you will not receive any benefit at all if you reduce your salicylates even 90%, it's all or nothing.

3. Suffer. There's no way around this one. It's going to be like hitting the rewind button on your disease, all of your symptoms will go in reverse except much faster and more intense. The good news is you are now flushing it out of your system and getting better, and each "cycle" is less intense than the previous until you have more good days than bad.

4. If you do not have fibromyalgia this treatment will not work for you, you will not feel better or worse--although you need to make sure that you're not in fact "blocking" (missing some salicylates somewhere that are keeping the guaifenesin from working).

Since my brain is definitely experiencing quite a bit of the "fibrofog" I had to really focus when I was reading and I frequently reread sections because I couldn't recall a thing of what I just read. But I cannot recommend this book highly enough and I would definitely not recommend trying to the treatment without reading the book first! Most libraries have it, so you can check there first or Amazon has it for only $10.


Here is Dr. St. Amand's website that has also been extremely helpful:

I've been most impressed with the medical explanations and statistical support presented in this book and am very hopeful about starting this treatment this week!

Saturday, January 21, 2012

What's Wrong With Me?

For a year now I've been dealing with this crazy illness. I look the same on the outside but feel terrible on the inside, the symptoms have changed and become progressively worse over time and no one could figure out definitively what was wrong with me.

I'm going to try to list the symptoms in order of appearance, although a few did go away after several months either on their own or due to medicine prescribed by one of my doctors. Large bruises that I couldn't remember getting, chronic headaches, several migraines a week, EXTREME fatigue, depression, muscle soreness, severe neck pain (it feels like someone is strangling me all the time), tingling and numbness in my hands, coughing, shortness of breath, insomnia (mostly due to so much pain), joint pain all over, painful sleep (like someone is beating me up with a baseball bat while I'm sleeping, nightmares, pain sensitivity (even a small bump hurts a lot), scalp tenderness to the touch, muscles aches and pains throughout my entire body including the bottoms of my feet, intolerance to sugar/dairy/caffeine and significant memory and concentration problems (if I don't write it down and keep it in front of me I WILL forget it).

I'll try to keep the summary of my journey through the doctor gauntlet as short as possible: My primary care physician told me I was fine and they would draw blood at the next annual exam (10 months away) so I promptly found a new one in the phone book-big mistake. The second doctor ran some tests, got a positive ANA and felt pretty certain it was lupus, he did not refer me onto anyone else or have any answers for how to treat, he didn't even seem to want me for a patient so I visited my daughter's ENT and he also suspected lupus after ordering some other tests that only showed silent reflux. So this time I made sure to ask around and get a referral for a good primary care physician. While I do really like her and she has tried extremely hard to figure out what is wrong with me (tons of tests including blood tests, a biopsy and x-rays that have only revealed anemia and low vitamin D) she was stumped. She was able to write some prescriptions to help me deal with the symptoms, but ultimately ended up referring me onto a rheumatologist which is a six month wait in my area. In my desperation to get into a rheumatologist, I found one four hours away that could take me right away so I went to see her (with both kids in tow). She didn't seem very knowledgeable, didn't really listen to my symptoms and kept insisting it was most likely lung cancer (something we had already ruled out) and referred me for a CAT scan, which of course was clear. I did not return to her and waited for my appointment to come around here, it was a long wait. In the meantime, I adjusted my diet based on the book "The Anti-Inflammation Diet" which basically has you take everything out that could be upsetting your immune system and then once your slate is clean you add things back one at a time to see which ones your body reacts to. After several months I learned I couldn't tolerate any sugar, dairy or caffeine. FINALLY I had a full week and a half of feeling somewhat normal (I had energy and didn't crash at my children's naptime full of pain and fatigue). In my excitement and pent-up desire to clean I decided to spring clean my house and went hog-wild gardening outside. At the same time, the new year started and my doctor's office nurses were dragging their feet calling in my prescription refills so I ended up going 5 days without 4 of my 6 pills. One of these things, a combination of them or maybe something else altogether made me completely crash and has put me in more pain than I have felt in months. Very discouraging after I was finally making some progress.

Last week I finally got in for my rheumatologist appointment here and was thoroughly impressed with my doctor-she really took her time and listened to my situation, didn't brush off my concerns and also didn't jump to wild conclusions (like lung cancer when I'm not even a smoker). After some discussion and an exam she told me she felt pretty certain that I have fibromyalgia and that it's a lifelong disease that I will need to manage with medications. Since I didn't know anything about fibro I went home and started researching, only to find that what she said was correct you do have it for your life and it's only likely to get worse.

That answer depressed me more than anything, I could not imagine going several more months let alone my whole life taking 6-7 medications each day and still feeling like my insides were rotting. At that point I started to search for an answer, a cure, ANYTHING. I stumbled upon the book "What Your Doctor May Not Tell You About Fibromyalgia: The Revolutionary Treatment That Can Reverse the Disease" on Amazon and started to read the reviews. I was amazed that so many people who had lived with the disease for 20+ years (I don't know how, I would go crazy!) have been able to "cure" themselves following Dr. St. Amand's advice.

All I could think is, I have nothing to lose and I will try anything at this point so I ordered the book...(more on that tomorrow)