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.

Thursday, July 5, 2012

Another Block

For weeks I've been suspecting that I'm blocking my medicine but couldn't figure out where. Then one morning I started the routine of triple checking everything (again) that comes in contact with my skin and that is when I caught the culprit, dish soap. I switched to a new bottle of the same brand (Palmolive) and even went online and checked the ingredients to make sure it would be ok, but I missed the small letters on the front that say "natural extracts", so for now 4 weeks I've been blocking the guai and building phosphates up in my system.  Because of dish soap. It seems like a silly thing, but since I'm a stay at home mom and use this soap not only for washing dishes but also washing my hands (which I probably do 20 times a day with 2 preschoolers) this is actually the product that touches my skin more than any other. Lesson learned, again. Unfortunately, I am now going through the initial reversal for a third time and this is extremely frustrating to me. It is much less painful than it was five months ago (I'm no longer up all night writhing in pain) but it is still incredibly painful and small things like walking up the stairs feel almost impossible. It took five days after throwing out the old dish soap to unblock and hit the true reverse cycle, and today is day two of that cycle.

On another note, I began taking malic acid and magnesium per a previous post to help with muscle pain a little while ago. One symptom of fibro for me has been horrendous periods each month, something which no doctor has been able to help me with. After only a week on the malic acid and magnesium combination I had a completely normal period-so I suspected it was from these vitamins. Shortly after, I stopped them in case they could be the salicylate culprit and the next month it was horrendous again, verifying that it was indeed the malic acid and magnesium that were helping with this symptom. I have called fibropharmacy to verify that all of their pills are sal-free (they are) and since figuring out the dish soap I have restarted this vitamin combination since it does appear to have big benefits for me. I have discontinued the vitamin E since I did not see an improvement.

Five months of treatment, 2 long term blockages and TONS of pain later--I have to remember that I have made a lot of progress, I will not give up!

Thursday, May 31, 2012

Can Vitamins Help?

Now 4+ months into the guaifenesin treatment, I'm still seeing progress but the past few weeks have been difficult to read. I cannot tell if I am blocking again or just plateauing in this stage of headaches, joint pain and fatigue. It would make sense that this cycle would last the longest since these are the symptoms I have had for the longest amount of time, but I plan to double up my dosage one night just to be sure I'm not blocking--I just haven't had the guts to do it and forfeit my sleep yet.

In the meantime, I have heard some potentially helpful advice about vitamins and their benefit to people who have fibromyalgia. From what I have read, it sounds like most people with fibromyalgia are deficient in at least one vitamin/mineral-I know that I'm low in vitamin D and anemic in iron even with supplements. Instead of trying all of the following at once, I am introducing them one at a time for about two weeks to see if there is any noticeable improvement. If I've learned anything it's not to make a bunch of changes at once, if something works you'll have no idea which one it is. Here's my "to try" list:

1. Vitamin E: I've heard this will help some people with fibromyalgia a little bit and some a lot, you just have to try it and see if it's a good one for you. I've already introduced it and haven't noticed any significant improvement so will likely not continue when the bottle runs out.

2. Iron: I was shocked to find out that 1 out of every 3 women is iron deficient. This can cause your fatigue to be even worse than it already is. Even after being on a heavy-duty prescription iron supplement my levels are still low. Now I'm looking into foods that are iron rich (eating meat and beans at the same time). Eating vitamin C at the same time will increase absorption, calcium will block absorption, so orange juice with a meal is great but like my chiropractor pointed out-drinking the calcium fortified kind will negate any effects. Also, cooking in a cast iron pan increases the amount of iron you get in your foods as well. I will be trying all of these since fatigue really is my least favorite part.

3. Magnesium + Malic Acid: I don't know the science behind this one so you might want to look it up, but apparently the combination of the two taken daily for 8 weeks will help with muscle soreness and pain. Take 100-300 mg. of magnesium with 1,000-2,000 mg. of malic acid. I just started this one today and will let you know if I see any improvement, my muscle pain is horrible (though not anywhere near what it used to be before the guai) so this would bring much relief!

4. Protein Shakes: Again I don't know the science behind this one, but after speaking with another woman who has had fibromyalgia for 20+ years who attests to the significant improvement she saw after introducing these at breakfast time, I'm willing to try it!

5. Multi-Vitamin: If you aren't sure what you are low in this is a good way to boost everything.

*PLEASE REMEMBER to look for salicylates when purchasing vitamins! They are in a lot of vitamins and I had such a hard time that I finally just ordered mine all from Fibro Pharmacy's website (everything is sal-free) so I wouldn't take the chance of blocking again. Their prices were pretty good too, I think the vitamin E was only $4 for a 3 month supply.

I will post updates as I try things out and see or don't see results, please feel free to share your results, questions or anything else in the comments area below any of my posts.

Friday, May 18, 2012

Light At the End of the Tunnel?

Today is the third day of a cycle that has included burning arthritis-like pain in all of my joints and intense headaches and migraines regardless of how much water/rest/pain medication I take. The first day I kept thinking, "how could joint pain be coming back? It's been gone for months!" and then I realized that these were the first two symptoms I had when the fibromyalgia started. So if this guaifensin truly does reverse the process, as it seems to be doing, then I should be nearing the end of the terrible cycles of pain and close to home free! I know I will most likely never be pain free, but at least I can see the light at the end of the tunnel after 4 months.

On another note, I was lucky enough to meet a woman who has been living with fibromyalgia for 20+ years and she has found several things to be successful in taking away the pain and fatigue so I will do my best to pass those onto you as I'm trying them myself. A few quick tips from her:

  • Always eat breakfast, protein shakes worked great for giving her energy.
  • Take vitamins, obviously if you're going the guai route you'll need to be careful to avoid salicylates (I will be doing a post entirely on vitamins next)
  • Don't exercise after 5:00 and end your day at 7:00 regardless of how much is left on your "to do" list
  • If you can handle it get out and walk several times a week

This woman mentioned that she has met over 50 women with fibromyalgia and they have had two things in common: They have all had a type A personality and were stressed to the max and they have all experienced some kind of extra stress or stress-related event/injury in their life around the time their symptoms started. She gave me some great reminders to keep myself from worrying, trust that God is in control and let Him take care of it. Forget about how clean the house is and the four hundred things on your to do list. Live in the moment and take one day at a time, and most difficult for me-give up control. So I am doing my best to follow some wise words this week. God clearly put this wonderful woman in my life for a reason and I've learned the hard way to listen up when God's speaking or my hard-headedness will only bring me more frustration (and probably pain) and less peace in the long run.

Thursday, May 10, 2012

Being Vigilant

If you read my previous two posts, you know that I started taking a new iron pill that blocked my guai from working and it took me 41 days to figure out this was the connection. The reason why no red flags went up when my pharmacist told me it was an iron pill loaded with vitamins, was because the first time I read Dr. St. Amand's book I didn't make a mental note of what to look for in vitamins-because I wasn't taking any. I mentally skipped over the sentences that did not apply to me, not realizing that they could apply to me at some point in the future.

It has taken me a few weeks to get the vitamins out of my system and reverse back to the point where I was before this mistake, in effect pausing my treatment for two full months. As you can imagine on the good days it has been disappointing and on the bad days it has been downright depressing, the depression came in like a wave this time and I think was harder to handle because it was such a drastic change so quickly.

I have no re-read the chapter on how to avoid salicylates and I plan to re-read it every month or two in an effort to prevent something like this from happening again. I couldn't believe how many things I had just passed over the first time around. Also, it's a lot of information on which ingredients to avoid and I will likely need to read it a good dozen times before I can remember them all.

Lesson learned: be vigilant about checking ingredients and thinking through any changes. Getting comfortable and lax about what goes in/on my body is not worth the pain in the short term or the setback in the long term.

Tuesday, April 24, 2012


Fortunately, it took less than 24 hours for the guai to start working again and to confirm that the iron pills were in fact blocking it from working. I had forgotten that in my attempt to figure things out I've been taking a double dose each time, so last night was quite rough.

Even better news, I can finally put into words the difference between fibro pain and guai reversal pain. For typical fibro pain resting and laying down will bring relief, or at least not add to your pain level. For reversal pain you will still feel an increase (sometimes significantly) a few hours after taking your pill whether you are laying down or not--resting will not bring relief. Obviously the pain is usually much worse as well, but this is at least a somewhat easy test to see whether or not I'm having a cycle or just experiencing normal fibro pain (and maybe blocking).

I think it will only take a few days of cycling to get me back to where I was prior to the switch in meds, since 41 days of pills (and blocking) is equal to approximately 2-3 days of reversal according to Dr. St. Amand.

Sunday, April 22, 2012

Crash and Burn

I was feeling pretty good, and so I let a few things slide. I ate more sugar (a lot more), didn't get as much sleep, missed a few days on my medicine (due to having issues with my prescriptions renewing), missed a few chiropractor appointments and picked a lot of strawberries without using gloves-I did not realize this is a big guai blocker. The result was a complete crash for two days that felt like before I had started this treatment. By the third day my efforts at getting back on track were rewarded as I slowly started feeling better, but it took a good 8 days to feel like I had recovered from my little bender.

At this point I'm pretty sure I'm blocking the medicine somehow since I still feel pretty bad and I'm not noticing a change after I take the guai like I used to. Even small amounts of activity are leaving me in extreme pain and difficulty moving. My theory is that I started blocking about a month ago, so I started asking myself: what has changed since then? Here is what I've come up with.

1. I started using sunscreen on my kids as the weather has been nicer.

2. With the humidity kicking up I've gone from straightening my hair to leaving it curly, and using a specific product to keep it under control. I've checked the ingredients at least 3 times, but maybe I'm missing something.

3. My iron pills changed from plain iron to iron plus (includes vitamins and minerals).

My goal this week will be to determine what is causing me to block and eliminating it. One thing I've learned from experience is that I cannot change all three of the above things at the same time, otherwise if I get better I will have no idea which one was causing me to block. So my plan is to start with the iron pills, I'm going to stop taking the prescription pills and take some pure iron over the counter ones. That's my plan for this week, will update next week on whether or not it worked and if I need to try something else.

Wednesday, April 4, 2012

Response From Dr. St. Amand

I emailed the authors of the book "What Your Doctor May Not Tell You About Fibromyalgia" last week and was pleasantly surprised to receive a reply over the weekend. Here is what I learned:

1. You must wear gloves when gardening.

2. Touching soil will not cause you to block like touching plants will.

3. You can still wear sandals in the grass (I thought I had read otherwise but I guess it's ok).

4. You can mow the lawn but you shouldn't walk on it barefoot the same day or you will block for that one day.

Good news for a flip-flop wearer like myself. Not good news for a gardener though. I might start doing my gardening earlier in the day so I don't have to deal with hot gloves in 85 degree weather. If you're interested in emailing Ms. Marek and Dr. St. Amand, their email address is claudiacmarek@aol.com

Saturday, March 31, 2012


Over the past few weeks I've been gardening a lot, sometimes for several hours each day. At first I was very careful about wearing waterproof gloves and sneakers, but since we live in the south (SC) I got lazy a few times and then a few turned into a lot. I'm also a huge fan of sandals and don't like wearing closed shoes anytime the temperature is over 50 degrees. Plus, I had the busiest week since starting the treatment and it just turned out to be more than I could handle. Since I was feeling so great still, I just assumed it wasn't a high enough level of salicylates to block the guai from working. I was wrong.

Today I woke up in more pain than I have been in since the awful beginning. Muscle aches everywhere, a migraine and the strangulation feeling in my neck had returned. I had forgotten how difficult it is to function like this and ended up resting much more than usual. This week my plan is to double up my guai doses to hopefully rid my body of the recent phosphate build-ups as quickly as possible, wear only sneakers or rain boots outside and get plenty of rest. I also missed my chiropractor appointment this week and I think that is really affecting several areas of my body more than usual.

Another thing I plan to do is email Dr. St. Amand and ask about outside protocol since it's not covered extensively in his book and we have a lot going on at our house between our gardens, chickens and bees. I cannot imagine spending the summer inside so I'm determined to learn the correct way to do this and will update everyone on what he says.

Sunday, March 25, 2012

Treatment: 9 Weeks

I just triple checked my calendar, nine weeks! How did this happen? In the beginning I was counting days and time seemed to slow down. Now I passed the 2 month mark without even knowing it.

I've been feeling great lately! As long as I rest (a seated activity) for a little bit in the afternoon, I've been able to keep up with life and even add in a few things I haven't been able to do. It really feels like life is starting to get back to normal, I'm so excited to see if I will be back to 100% in another few months.

A few updates:

1. I stumbled across a second book about using guai to treat fibromyalgia as well as several other problems, it's called "The Guaifenesin Guide: For Treating Chronic Fatigue, Fibromyalgia, Irritable Bowel Syndrome" by Greggory K. Penniston. I haven't read it and don't know anything about it, but thought I'd pass it along.

2. I just visited my rheumatologist who was thrilled to see me looking like a new person and quite proud of herself-until she found out that I'm not taking any of the pills she prescribed for me. She was still very nice and professional, but I could clearly see she was doubting the treatment. She also said she had never heard of it which was very surprising, as when I researched the topic it was the only method that seemed to work for most people.

3. I've been doing a LOT of gardening and yard work the past few weeks and have a suspicion that I might be blocking the guai sometimes from the salicylates in the plants. I'm planning on doubling my dose to hopefully account for any blocking times I might have, but when I tried this two weeks ago it was still too painful to do so. Not as painful as it was the first few weeks on the guaifenisen, but more pain than I wanted to tolerate at this point.

4. All of my food intolerances are gone. My illness had progressed to the point that refined sugar and dairy both made me extremely sick. I eliminated both from my diet for several months and tried to rework them back in slowly without any luck, I couldn't even tolerate a few grams of sugar without intense pain. Now I've been able to reintroduce everything successfully, although I still choose to put honey in my coffee and cook with it when I can in place of sugar since it is much healthier. But even when I've indulged my sweet tooth with a rich dessert or eaten a substantial amount of dairy, I've experienced no pain from it.

5. Sometimes my husband or I will wonder if the guai is still working for me since we saw such drastic changes early on and there are no visible changes now day-to-day. But then I remember where I was just two months ago and I remind myself that there is no way that it couldn't be working, progress is just slower now.

I am so thankful that I finally found a doctor who diagnosed me correctly so that I could begin this treatment, without that I would never have started the gaui. God is good! I'm also grateful there even was a solution, since I know for many chronic illnesses there isn't. I know guai doesn't work for everyone and not everyone will have the motivation to stick with it, but for anyone battling fibro it really is worth a shot (what do you have to lose?) and I hope by sharing my experience someone will consider giving it a try.

Thursday, March 15, 2012

Best Price For Guai Pills

While picking up my prescriptions this month at Kroger, I decided to ask the pharmacist if she had ever heard of using guai to treat fibromyalgia before. Actually, it wasn't a conscious decision, it just sort of popped out of my mouth as I was paying for the medicine. She hadn't heard of it but was really interested in the details (because her mother has fibro) so I told her the basics of what Dr. St. Amand says in his book and how it has made such a difference for me and is the reason I've been able to come off of three medications. She was very surprised and told me that Kroger has a very low price on guai, just a few dollars per box. I checked it out and she was right, after several thorough searches for the lowest price the best I was able to do was $8/mo. and I had to order 16 months worth to get this price! Kroger has 30 ct. boxes of 400 mg. pills for $2.67, which would make it only $5/mo. So if you're in the market for some guaifenesin and have a Kroger near you, I highly recommend getting it there.

PS-Another thing this pharmacist mentioned sort of off the record is that she has many people come in with fibromyalgia and often times they are overmedicated and the prescriptions can actually make things worse. I definitely experienced that when my rheumatologist added cymbalta and a couple of other medications to my already long list.

Tuesday, March 13, 2012

A New Perspective

I would say I've defnitely turned the corner and have more good days than bad lately, but I still find myself getting frustrated. Why can't this go faster? When will I be completely better? Will I ever be able to run again?

Then I took my guai pill this morning and realized it was the last one in my bottle-my first bottle. Thus far I have only taken one bottle of 100 pills (300 mg. each) of an over the counter medicine and it has done more for me in a month and a half than everything in the past year combined. Once I took that perspective it was easier to see and be grateful for the progress I've made and be hopeful for the progress to come. So here's to my first bottle down, and hopefully hundreds of more bottles in my future...

Wednesday, March 7, 2012

Treatment: 6 weeks & 3 days

The past week has been different, not really good or bad. I've concluded that I would probably be feeling pretty good if it weren't for the fact that my husband has been out of town for two of the last three weeks and I'm just drained from taking care of my two toddlers. But the good news is that there is no way I could have done what I'm doing now even two months ago-I know because my mother came to help me when Chris was out of town and I still didn't get much done. I'm able to do multiple activities with them each day now, take them outside for several hours and keep up with most of the cooking/cleaning. Two months ago I would have had to put a movie or two on each day and laid down on the couch with them, it would have been too much. I wouldn't have had the extra energy to take out the paints like we did today or the playdough like did yesterday (for 4 hours). The pain would have been too much, and while I'm tired right now it's bearable. I'm looking forward to having my husband home for a couple of weeks to see what progress I've actually made when I'm able to sleep through the night again or take a break from the kids for a few hours and rest.

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...

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)