Part of the problem Melanie Jenkins faced as she endured debilitating pain throughout her body was having a doctor who believed her anguish was not in her mind and really did exist.
“I was fatigued all of the time no matter how much I laid and rest. I couldn’t sleep, even though I was tired. My body hurt all over as though I had been working out. I was a nurse, so I walked on a regular basis, but this felt like I had been to the gym pumping iron,” Jenkins said.
She also kept flu-like symptoms most of the time. That was one of the main characteristics of her condition along with muscle fatigue and pain that at times made her skin hurt to touch.
“Have you ever had a rug burn? That’s what my skin would feel like. Mainly my arms and legs—the limb part. My covers couldn’t touch—my clothes couldn’t touch,” Jenkins described. “I had one of the nurses cut me out of my sleeves in my uniform one day because my skin was hurting and burning and I couldn’t stand for it to touch. I started going into what they said was an anxiety attack from it.”
Then the depression set in.
“It made you think you was losing your mind, it’s kind of like when you take your car to the shop and it stops doing it—and they say, ‘Ah-Hah—sure, your car was doing it.’”
After five years of going back and forth for office visits, changing doctors and being told nothing was wrong, a trigger point examination by Dr. Jacqueline Howard Fairchild in Alton, Ill. gave Jenkins a name to attach to what ailed her – Fibromyalgia.
“They have to push in on areas to see if they were inflamed or in pain. There are three different parts of the body they check to try to explain why I was having issues, pain, fatigue, insomnia, chronic headaches,” Jenkins said. “A lot of the doctors didn’t accept it. The type of doctor I needed to see was a rheumatologist and that’s where she sent me. About a year ago, I had to change rheumatologists because he would only treat me for the RA [rheumatoid arthritis] because he did not believe in fibromyalgia. He basically was trying to tell me it was all in my head and I was depressed and needed to exercise. It was crazy. To me it was one of the worst things when a physician tells me it’s your fault – it was getting very frustrating. He would give me a lot of pills. I was on 32 pills at one time. He said he was treating each individual symptom because he wouldn’t accept it was stemming from one condition. If I was on the street doing drugs, I would have been called a functioning addict because my body had adjusted to all this medicine.”
Armed with the name of her condition and determined to have her symptoms taken seriously, this time, Jenkins “let her fingers do the walking” before she stepped foot into another doctor’s office.
“Dr. Kongsak Tanphaichitr in Florissant – I called them by phone at first and asked if he treated it and believed in fibromyalgia as a condition and his nurse said ‘definitely’ and they were treating several other patients. That’s how I made the change-over,” Jenkins said. “What was different was that he listened to me and asked about my different conditions because he said it varied among people. He explained he had done some study and research in the area and experimented with different medications that seemed to help different patients in the past. He did explain he would do a more aggressive type of treatment with mine because of my RA (rheumatoid arthritis). He said the RA tended to make the conditions for fibro worse. Stress is a main inducement to flare-ups-and since RA stresses your body and your symptoms that would cause flare-ups.”
The clean slate with a new rheumatologist in 2007 gave her a clean (and smaller) slate from so many pills.
“He said my body was probably toxic, even though they were given to me to try to help, each of them had their own side effects. Even though they were treating the condition, they brought on one or two more. That explained why even with all of the medication I did not feel better,” Jenkins said.
From 32 medications she is down to 10 pills per day and one of those is Lyrica (pregabalin) – specifically made to treat neuropathy (impaired nerve function that can cause pain and numbness) and fibromyalgia, which she has both. A year ago, the U.S. Food and Drug Administration approved the prescription medication as the first drug to treat fibromyalgia. Jenkins started taking Lyrica several weeks ago.
“I am just now feeling some of the relief. I am feeling less burning in my arms and legs. The numbness and vibration I was getting in my legs is slowing down. Some of the pain I am having – I am having a spinal pain and muscle spasms in my back. I am not having it as much now and I am not taking my muscle relaxers as often,” Jenkins said. “The biggest difference I have noticed since I have been taking it is that I am sleeping at least six to eight hours now compared to about two. And I am having dreams! I haven’t had dreams in years.”
Doctors also treat fibromyalgia with medicines approved for other purposes. Pain medicines and antidepressants are often used in treatment.
It is estimated that as many as 1 in 50 Americans suffer with fibromyalgia. Jenkins was younger than most people at diagnosis (age 28) as fibromyalgia usually surfaces at middle age, and is more common in women than men and more with persons who have lupus or rheumatoid arthritis.
Although fibromyalgia does not go away, Jenkins said she may finally beginning to feel some relief.
For more information on fibromyalgia, search www.cdc.gov, www.nih.gov or the Fibromyalgia Network at http://www.fmnetnews.com.
