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.

Tuesday, February 28, 2012

Two Good Days in a Row!!

I was pleasantly surprised to be having a second good day in a row today. Although the night was a little rough, which makes me wonder if I just had an 8 hour cycle. For the second day I am getting done about 3-4 times the usual amount around the house without resting at naptime. I'm keeping up with my kids and feeling almost no pain, just some tiredness. Is the corner I've been waiting to turn...?

Monday, February 27, 2012

Second Mapping

Today is exactly five weeks since I started the guai and it was also the first mapping I've had since the initial one on the day I started five weeks ago. Here is what I learned today, drumroll please...

1. Many of the lumps/phosphate deposits I started with are entirely gone, and the rest have significantly decreased in size-50% or more.

2. Not a single area remained unaffected/unchanged, which is saying a lot when you have these areas all over your entire body.

3. The symptoms list which I thought would be relatively similar, was actually quite different. No new ones, but maybe a third fewer than I started with. This one took me by surprise and I actually would not have believed if my chiropractor had not shown me the two lists and compared them.

4. Areas of my body that my chiropractor could hardly touch initially without me crying out in pain and pushing away, she can now press on pretty hard and I hardly feel a thing.

5. Both doctors (I have 2 chiropractors that have been doing the mappings together) were impressed with the results and that says a lot to me.

It was a very motivating day and today is also another "good" day for me. Here is what my first few "cycles" have looked like:

*Start Guai*
2 days: no reaction
15 days: cycle 1 (INTENSE pain)
1 day: relief :-)
8 days: cycle 2 (lots of pain)
1 day: relief :-)
5 days: cycle 3 (some pain)
1 day: relief :-)

You probably notice that the cycles are getting shorter and lower in intensity. I'm looking forward to coming up on the turning point where the good days outnumber the bad ones.

Overall, my pain level has dropped drastically from where it was before I started the guai. I still feel a lot of fatigue but instead of being as painful as it was, it is more exhaustion and a need to rest. There have even been a few days I was able to keep working during my kids' naptime, nothing physical but at least staying awake and getting things done.

A cause for celebration for sure...

Friday, February 24, 2012

Morning Stiffness

I have had several doctors ask me if I get morning stiffness, and it is listed as a fibro symptom as well. The morning is the most painful part of day for me, aside from any mid-afternoon crashings that may occur, so it makes sense that I do not look forward to starting the day. I usually wake up with most of my body aching and even the bottoms of my feet are sore.
I know logically that once I get moving the pain will go down, the hard part is convincing my body to get going. The medicine seems to be helping with this symptom and it isn't as difficult to get going as it was a few weeks ago...

Sunday, February 19, 2012

Treatment: 4 Weeks

Woo hoo! I'm finally at the four week mark, although it feels more like four months. When I compare what I feel like today to where I was before I started, I definitely have much less pain but still more fatigue and exhaustion, making me clear my calendar more than I expected. Tomorrow my chiropractor will do my second mapping and compare my lumps to how they looked before medication. I'm looking forward to seeing some progress to keep me motivated! I've also managed to eliminate one of my prescriptions this week without any problems, two down and four to go...

Sunday, February 12, 2012

In It For the Long Haul

The good times only lasted for one day, now I'm in the third day of my second cycle and the pain is as bad as ever.  It is so discouraging to have searing pain again in the same areas as the first cycle, I assume breaking up and clearing up the remaining phosphate. I am definitely the type of person who likes to be in control, so this whole waiting through the pain for an indefinite period of time is very hard for me. Much harder than I thought it would be. But I have decided I'm going to give this treatment a fair shot, and since I already know it has been successful in some parts of my body it looks like I will just need to learn some patience. That's interesting since patience is something I've been praying for God to help me with for several years, it looks like this is my golden opportunity!

One thing I've noticed is that I can now tell the difference between regular fibro pain and guai pain. The fibro pain is all over, and when the guai is working I can feel it in a specific body part (or several) and it is much worse. Unfortunately, the fibro pain and guai pain occur at the same time so that's not a lot of fun. Today, for example, my upper body is sore and my head is pounding but my legs and feet are absolutely on fire--clearly where the guai is working. They are in excruciating pain even laying down so you can imagine how much worse it gets when walking.

Well it looks like my one day of relief is what I will need to motivate and sustain me at this point, I can really see why people give up before the end, but I'm in this for the long haul...

Thursday, February 9, 2012

Treatment: Day 18

It's official, today is my first "good" day!!! I say it in quotes because I still had to see my doctor for an upper respiratory infection and the symptoms from that almost made me miss the fact that I had virtually no fibro-related pains today. I kept waiting for the crushing migraine or screaming leg muscles to attack (especially after bringing my daughter along with me to the doctor's office and running errands after) but they never came. I don't feel great and I couldn't go for a run right now (or even a brisk walk), but I did make it through the day with minimal rest and almost no pain and that is HUGE progress!

Also, I told my primary care physician about Dr. St. Amand's treatment plan that I'm doing and here was her response:

1. Most doctors don't know squat about fibromyalgia. It's new and nothing has been proven yet so we don't know whose theories are right.

2. She admitted she had never heard of this treatment plan before (but was of course familiar with guai) but the reasoning sounded right (how the salicylates affect the kidneys).

3. She wanted to learn more about it and supported my decision to pursue this treatment and to soon start eliminating my prescriptions one by one.

So all in all it was a wonderful day! Once these antibiotics kick in I will truly be on cloud 9 :-)

Wednesday, February 8, 2012

Going Salicylate-Free

I was pretty happy to learn that going salicylate-free did not involve changing my diet (since I don't take any herbal supplements or drink tea). That was short lived when I realized what a pain it is to find salicylate-free products in the store. There is a decent list of sal-free products at Dr. St. Amand's website http://www.fibromyalgiatreatment.com/salfreeQuickRef.htm but I found the resource page in the back of his book to be the most useful. I referenced that page when looking through my own current products to see what I could keep (very little) and when buying new ones.

I started the treatment very quickly and was feeling pretty horrible, so my sal-free shopping involved one Saturday of running to three different stores and reading labels for hours in search of approved toiletries. At the end of the day I still didn't have any adult toothpaste because none of the stores carried the Tom's cinnamon flavor, but here is what I managed to round up...

This is the only dental floss I could find that wasn't mint flavored, and I ended up ordering the adult Tom's in cinnamon on Amazon.

One of my least favorite shampoo brands for my hair type, but oh well.

Good ole' Barbasol, you can use just about any razor as long as you pop out the aloe strip.

I was bummed that both of the name brands in these products contained aloe, I was in pain and desperate at the last minute so I had to go store brand.

Again I wanted the Aveeno but had to settle for store brand, love the body wash though!

I bought the travel bottle to keep soap in my purse since you never know what ingredients are in public restroom soaps.

Most of the clinical-strength deodorants are ok, not all though. I switched to Secret after this.

Since I could not find any baby wipes anywhere that I was able to use, I bought these for those times as well as using certain cleaners, clorox wipes, etc. It was $10 for a box of 100 gloves.

You may be wondering "why did she put J's on everything? so her family wouldn't use her super-cool store brand sal-free products?" Nope, to remind myself to use them! One less thing to think about and those J's have saved me in almost every shower I've taken, as I've gone to use my normal/husband's products and a row of J's pop out at me and save me from that mistake.

As far as cosmetics go, there are a few brands you'll find out there that were specifically designed for people with fibromyalgia but they are very expensive. Mary Kay has a list of products that are sal-free, so far I've been using those and I'm pretty happy with them.

Once I have more time and energy I'll find some better products to replace my emergency starters, but at least I know I have definitely managed to eliminate salicylates since I've had no trouble at all processing the guai and "reversing" with worsening symptoms and pain.

*By the way, one important note that Dr. St. Amand makes in his book and is worth repeating is this: taking out sals is not like dieting. If you eliminate 90% of the fat in your diet you're going to lose weight, but if you eliminate only 90% of your salicylates the other 10% will still block the guai from working. This is an all or nothing deal. Apparently giving up beauty products is a deal-breaker for some women (according to his experiences in the book) but it seemed like a small price to pay if I could live pain-free again...

Monday, February 6, 2012

Treatment: Day 14

I'm so excited right now that my chiropractor was able to confirm I'm getting better! Before I mentioned the pain going away in my thighs she noticed my hair was softer and fuller (she pushes on the plates in my head each week to spread them and help with my headaches). Then she told me that my upper back is not super tight like usual (probably the phosphate deposits) and the lumps in my thighs are half the size that they used to be. All in all, she could see significant improvement after only 2 weeks-some good motivation to keep going...

Sunday, February 5, 2012

Where's My Epidural?

Since this is the most pain I've experienced outside of childbirth, I keep thinking "where's my epidural?"
Prior to starting the guai I actually considered first figuring out my dosage and then taking an extra pill at night to hurry this reversal thing along. Ha. Ha. Ha. Not for a million dollars! Now I want to cry when it's time to take the next regular pill (every 12 hours) and I'm only taking the lowest dosage. The hardest part of this treatment for me has not been switching my beloved beauty products, as many people report, but willfully taking the pill and enduring the pain that I know I could stop by simply using some of my favorite lotion (now banned). What I keep reminding myself is that if I stopped taking the pill or started "blocking" myself intentionally, it would not take away all of the pain but only reduce it to where it was a few weeks ago, which was still quite painful. I've also found that 4-8 hours after taking each pill is the most painful, so the middle of my day and the middle of my night.

Wednesday, February 1, 2012

What Do I Know?

At this point, here is what I know:

1. I do have fibromyalgia or the guai wouldn't be making me feel worse.

2. I'm definitely in a cycle and this is the worst cycle I will ever have.

3. I'm not going to quit. Even when each day feels worse than the last, even though traditional doctors don't like this treatment option because it isn't their answer and and even when the road to recovery is long which I'm sure it will be.

And what I don't know:

1. How long I've had fibromyalgia, since often you have no sypmtoms in the beginning. Also, some symptoms Dr. Amand talks about triggered memories of problems I dealt with as a teenager (growing pains).

2. How long this first cycle will last...could be a week, could be two months...already feels like forever.

3. Whether or not this will "work". Will I really start to feel better? Will it just take my pain away or will it give me my energy back? How much of a "cure" will this really be after six months or a year?

I don't like waiting for answers, but really holding out hope since so far the first half of the treatment is working...