Vulvodynia Support-Candace's Story

When I first started researching this pain, I read about the Fibromyalgia connection and the oxalate theory. I immediately dismissed both. That was not me, I thought. Then I finally sent in my urine for the test. What could it hurt to see? It was abnormal, I DO have high oxalates.

It took months before I re-read all of the fibro information again, and then actually met women who had stories similar to mine, before I opened my mind to considering the fact that I could have FMS. Classic full blown FMS is all-over body pain. I knew that. I knew of and know at least 3 people with full blown FMS. I did not have that. I dismissed the connection. I am glad that I did not wait to have full blown FMS to consider the diagnosis again. And believe me, I think I was headed in that direction. I could have been one of the many people who become bedridden.

No blood test is available for diagnosis of Fibromyalgia. Mapping is diagnostic. The doctor gently runs his fingers along all of your muscles and tendons and marks the spots on a chart he calls a map. He does a physical examination where the patient's muscles and tendons are systematically examined by palpation to determine which areas are most affected by the disease. This process is called "mapping", which is also diagnostic of the disease.

My doctor pointed out that many bedridden patients have "maps" that look like mine. I seem to have a very high tolerance for pain. All except for in my crotch!!!! The vulvar pain is my biggest concern because it hurts the most and affects my life in the biggest way, but it is not the only symptom of FMS that I have. I had colic and then growing pains as a child, horrible headaches in my 20's, more than 25 bladder infections, frequent urination, suspected IC, bladder and groin spasms. I have eczema, itching, bruising, odor sensitivity, dry eyes, and a history of reacting wildly to medications. Two high risk, preterm labor pregnancies and cervical surgery with months of complications. I have numbness in my left arm and hand, restless legs, TMJ, abdominal pain, IBS that has meant 5 FULL years of daily diahrrea (had colonoscopy and sigmoidoscopy to look for cancer, etc), upper back pain for 25 years, and a history of low grade fevers.

My mother has many of these symptoms and both parents have osteoarthritis. I am the classic, classic case of Fibromayalgia. I have the tender zones and 67 phosphate deposit sites. Both of my children already exhibit many of these symptoms. There is NO question that I have Fibromayalgia.

There are many people with full blown FMS who are wary of the whole idea of reversing symptoms with Guai, and want instead, pain killers, antidepressants and sleeping medications to help them right away, and are not interested in the time and work and yes, pain, it requires to go through cycling, and reversing symptoms to gain back their health. Mainstream Rhumetologists back them up. Most of them prescribe all of the symptom relief drugs.

Guaifenesin is a mild mucous thinning drug with no side effects which is often found as one ingredient in cold medications. Guaifenesin allows the kidney to flush the phosphates from your lumps and bumps. Mapping allows for an objective evalutation of the progress made in reversing the disease. Guaifenesin is NOT a cure. It reverses symptoms.

Guaifenesin protocol is a two pronged treatment. The right dosage must be found, and avoidance of salicylates is essential. Salicylates are plant compounds found in many products like lotion and makeup and toothpaste. Salicylates block the action of the guaifenesin and render it ineffective. Guai does NOT in ANY way make you "feel better". It can't. It allows your body to excrete phosphates. It is not a pain reliever. I had to take it for almost 4 months before I even thought my pain was changing in any way. I had to dump lots of phosphates to begin to feel better. My doctor learned, unfortunately AFTER a double blind study, that using salicylates topically or in dental hygeine blocks the effectiveness of guai. That is why the study failed. Now we know about the sals.

I was clearing, and found out I was partially blocked by plax mouthwash, and when I stopped, had 3 days of the flu-like symptoms like I had when initially beginning guai. That is because the phosphates were being flushed from my blood in a new rush.

My doctor is working on setting up another study where salicylates are eliminated and the medical community can be informed about the many people who have been given their lives back by this protocol.

Now I am cycling hard again, because my kidneys need to "catch up" and the phosphates are not leaving, and causing the pain again, and the IBS and the bladder spasms and the ab pain and headaches and a yucky woozy car sick feeling too. It is exactly what my doctor said would happen.

I actually find this pain interesting in a sort of way, because now that I had some relief from it in July, I have a perspective, and understand it better, It is really left sided and deep within my tendons and muscles. and as my doctor says "if the pain goes away for a little while, it can go away for good". It went away for me for a little while and I fully expect it to go away for good. But not until I cycle out the phosphates. Reversal takes time. It is not a quick fix. And what is the alternative anyway to the cycling for 5 or 10 years?

I try to tell my mother about the probability of her having FMS, but she has a very closed mind to it, and asks things like " but will Guai help with my pain right away?" The answer is, no, not in most cases. Although some have had that happy result.

Everyone has to find their own path and their own answers to this problem. No one else but g-d can know ALL the answers. You cannot tell someone else what they should do or need to do about their health. It is far too personal. Guai has been my path.

For more information on this course of treatment please contact Candace at ccgart@yahoo.com