By Lori Lyle
(LOUISVILLE) — Imagine experiencing fatigue, irritability, nervousness and depression combined with flu-like muscle aches and stiffness plus headaches and leg cramps. Believe it or not, those symptoms can add up to just one condition: fibromyalgia. Medical Reporter Lori Lyle investigates treatment options for this hard to treat illness.
While fibromyalgia is finally gaining acceptance as a legitimate medical condition, most patients continue to search for relief. Some are finding it here in Kentucky, and they’re traveling hundreds of miles to get results.
For years, Kelly Hall suffered from pains that doctors couldn’t explain. “I was about seven or eight. And I had a lot of pain in my legs. And I remember I had a lot of back pain.”
Kelly’s mother, Julia, says she “was helpless to do anything for her except keep taking her to doctors.”
Kelly says those doctors “ended up giving me nerve pills. They thought it was all in my head.”
It’s a story that is familiar to people with fibromyalgia, like Kelly. “I grew up thinking I was a hypochondriac.”
Kelly was finally diagnosed in 1999, but didn’t want to undergo the standard treatment. “I didn’t want to be on pain medicine and antidepressants.”
So Kelly started researching options online. “I found a website right away and a support group.”
She also found an odd-sounding treatment: a drug used in cough medicines. Kelly says the people recommending the drug believe fibromyalgia is caused by a “build up of phosphates in the cells.”
According to the website Kelly found (http://www.fibromyalgiatreatment.com), that’s something guaifenesin — the ingredient found in many cough medicines — can clear out.
Dr. Paul St. Amand, a fibromyalgic and Endocrinologist at UCLA Medical School, has researched the disease for over 40 years.
Dr. Stella Staley, an internist in Lexington, agrees with Amand’s findings. “No, he didn’t land in a space ship or anything like that. He is a very good endocrinologist and it is a disease that affects him.”
Like many doctors, Staley has been frustrated from years of offering patients little hope for relief. “I may not have a blood test that says ‘ding ding ding! this is fibromyalgia,’ but I’ve got so many people who have very similar symptoms.”
Dr. Staley is now practicing what Dr. Amand is preaching. “People with fibromyalgia have muscles that were working 24 hours a day, seven days a week.”
That constant working caused a build-up of phosphates and all types of pain. Julia now suspects she has the disease too. Both are having doctors “map” their bodies for signs of fibromyalgia. Dr. Staley’s staff was actually trained by St. Amand’s group to detect phosphate buildup.
When mapping, Staley and her staff concentrate on palpating the body, using moderate finger pressure to seek out swollen and painful areas.
“You can just feel,” Staley said. “It gets real hard, then gets soft again.”
“Anywhere you have tendons or muscles is where phosphates can collect,” says physician assistant, Beth Jones.
After a month of using the guaifenesin, Kelly returns for another body-map. Jones says it’s “the best way to see if the guai is working” and it is. Jones says many of Kelly’s fibro-nodules have decreased in size and some are completely gone.
Kelly says she’s already starting to have some good days. She says, “I just felt like cleaning my house, felt like going and doing something.”
Kelly’s story is an example of why Jones says, “we get people here from Tennessee, Ohio, Indiana, people don’t get what they need from their doctors, they just don’t get it.” Jones says most doctors treating patients with Fibromyalgia aren’t even aware of the guaifenesin treatment, “it’s not been researched, not been proven, except by hundreds of thousands of patients since the mid 1980’s” who’ve somehow stumbled upon the treatment. Dr. Staley didn’t start prescribing it until a patient of hers brought it to her attention three years ago.
Now Kelly hopes even more patients will hear about its potential. She says, “I hope it gives them hope.. there’s no hope with anything else.”
Patients being treated with guaifenesin are typically given a half-tablet (300 milligrams) twice a day for one week. That dosage is doubled as long as symptoms don’t get worse — worsening of symptoms is actually a sign the treatment is working.
People who have had the illness for years will need more time for total reversal.
Also, aspirin and other salicylates can block guaifenesin’s benefits.
And Fibromyalgics who are also hypoglycemic need to be on a hypoglycemic diet for guaifenesin to work.
For more information on treating fibromyalgia with guaifenesin, visit: http://www.fibromyalgiatreatment.com/GuaiProtocol.htm.
You can reach Dr. Stella Staley at 151 N. Eagle Creek Drive, Lexington, KY 40509. Phone: 859-263-0329.
For support group info, contact: email@example.com.
Online Reporter: Lori Lyle
Online Producer: Michael Dever
Source: Wave 3 TV (http://www.wave3.com/) Louisville, KY