My Story - Dealing with Pain

Hello and welcome!
Here you'll find my own
personal experience
with
Fibromyalgia!
FMS (fibromyalgia syndrome)

In hopes of someone out there reading my story, to possibly bring them a little bit of hope, and to let you know your not alone if you've been diagnosed with Fibromyalgia, known as FMS (fibromyalgia syndrome), brings me to why I made this page.

Where to start is the big question!

Because of my findings with all the research I've been doing, I'll take it back to about 10 years ago, when I was diagnosed with Graves Disease. I was told by everyone I knew that I looked sick, and I should see a doctor. For I never felt better a day in my life at this point, and I ignored their comments. I went about my days, like every normal working mother and housewife would do.

One day while I was laying down with my infant son and accidentally falling asleep, I was awakened by my husband shaking me and calling out my name, after he had thought I died in my sleep. He was alarmed for he found me asleep with my eyes wide open. Whereas, I later discovered I had inflammation and tissue buildup behind the eyes.

I lived with tremors each day, thinking nothing of it. My father couldn't hold a piece of paper still while reading it, therefore I thought this was something I inherited. With having a rapid heart beat of 130 times per minute with no physical activity needed, to losing my hair, and losing weight rapidly, my life was a huge roller coaster ride. I just wish I could of bottled up some of the energy I had back then.

Living with the constant nagging from my family and friends that I looked terribly sick, I made an appointment with a internal medicine doctor. Only after a series of blood tests and making an appointment for a week later, I found out that I had Graves Disease. Hearing this news, the doctor explained to me Graves Disease is the most common cause of hypothyroidism in the the United States. All this leaving me with an overactive thyroid gland.

The treatment choices were throat surgery to cut out part of the thyroid gland, or to drink a radioactive iodine to kill off part of my thyroid. Since a knife to my throat wasn't exactly what I was looking for, I chose to drink the radioactive iodine.

All in all, the months down the road I underwent many different angles getting myself regulated. The treatment killed off to much of my thyroid leaving me with no choice but to take a pill for the rest of my life. Just finding the right dose was a major chore. This was something I could deal with, at least I was going to be around for many years to enjoy my family.

The tremors stopped, the weight came back, and my hair started to grow once again. Thankfully the buildup of tissue behind my eyes was caught early enough to prevent having surgery to correct it. Nothing a $180.00 pair of glasses couldn't rectify.

In February of 2001, I decided to see a podiatrist about a neglected foot pain I was having, from a previous surgery. He highly recommended foot surgery once again only this time to cut out the arthritis and cut back the bone to allow more movement.   Although it took all I could do to agree to this, I listened and did everything he told me to do. I tried shoe implants, electrotherapy, and pain medicines.

He was totally stumped as to why the surgery didn't correct the pain, and the movement.

I then was referred to an orthopedic doctor that specializes in foot surgeries, to find what he could do for me. After numerous x-rays, and a lengthy consultation he diagnosed me as having Hallux Rigidus.
This is a degenerative type of arthritis in the joints of both feet, not just the one I had surgery on.

He recommended yet another pain medication, and classified me as approaching surgically crippled.

At this point in my life, I wasn't going to keep going from doctor to doctor wasting my money for something I could possibly live with for the rest of my life. And with the way I was walking, not having full functionality of my joints in my feet, it was throwing my back completely out of alignment and leaving me going to a chiropractor on a regular basis.

With all this behind me, this is where my story actually begins back in January of 2002.

I was tired of waking up feeling like I never slept a wink, muscles were constantly tight, sore, with a nagging burning sensation, like I was jogging for miles on end each day, leaving me in constant chronic pain. I assumed this was because of the fast paced life I led with constantly being on the go, stress caused by a family member coming down sick, and being a full time mother and housewife.

The chiropractor that had been adjusting my neck and spine for years, due to having to be on the phone for hours non stop with being a full time Realtor, couldn't believe how tight my back muscles were.

When I was at his office one particular day, he sat me down after my adjustment, and asked me to get an appointment with a Rheumatologist.
My chiropractor had spoken of Fibromyalgia, but wouldn't go into the details since he was not in the medical field.

I agreed to make the appointment but procrastinated. The days flew by, and I totally forgot to make my promised appointment, not realizing this until I showed up for my adjustment 2 weeks later.

My chiropractor asked me how the appointment went and I told him I didn't have a chance to make one, whereas he ordered me to call the doctor and do it now. For I trusted him so much over the years, I walked out of the room and his secretary handed me the phone connected to the appointment desk of a Rheumatologist.

My appointment was 3 days down the road. When I arrived I had no idea what to expect. What could this doctor do for me that my normal physician couldn't do?

After an hour and a half in the room talking, and a brief physical examination, some blood work was ordered. My Rheumatologist swore I was a Fibromyalgia patient, but couldn't go into details until all the blood work was back.

A week later I received a letter from him stating, with the information collected from me, and from what the blood tests showed, I did in fact have Fibromyalgia, and he wanted to see me as soon as possible to go over some things.

At this point, I didn't know which way to turn, or even if I wanted to proceed going back to him. For if there wasn't a drug out there that I could take faithfully, and everything would be normal in my life in a week, I didn't want to hear it.

But in the same breath I was relieved to know I was referred to a doctor that believed in Fibromyalgia. At my next scheduled appointment tears were shed from the news he was telling me from all his past experiences with working and studying Fibro patients. I was devastated to find out from him that day, that I was the worst patient with Fibromyalgia that he has seen in years.

He understood my needs and wants, and took his time explaining all the possibilities to me. After listening to him speak of this incredibly painful and chronic disease, I was relieved to know he was truly concerned about me and it wasn't all in my head. (Like I've come to find out with all the studies I searched out over the internet, with the patients going from doctor to doctor in hopes of finding someone with the answers)

The statements that he made ring loud in my mind every day. I've never been one to sit down and listen to someone that something can't be done. Determined to prove someone wrong, this was something I set out to do.

Not only was I left to leave my career of real estate for the way I was feeling, but now my doctor was categorizing me as disabled.   I felt like someone lowered the big boom on me.   The doctor stated that I've probably had Fibromyalgia for many years on end, but refused to listen to my body.

I wasn't sleeping at nights, waking up with night sweats and fevers, numbness in the joints, cramping in the arms, legs and fingers. It felt like my whole body was bruised from my neck down.

My skin was and is still immensely tight, and if I accidentally bump into something, I would bruise immediately.   The constant swelling in hands and feet, unreasonable coldness in fingertips and toes, headaches, muscle spasms, burning sensations, and fatigue were all a part of my every day living.

I thought all of this was derived from being on the go constantly, and it was just the stress of everyday life. That seriously all I needed was a good night sleep, and I would feel fantastic again.

But that was never to come to me without the right treatment.

My doctor told me there was no actual known causes to bring this on, and there was no known cure to erase the symptoms entirely. What has worked for others, may not work for me. Although he thinks that Fibromyalgia, is in some way connected to the Graves Disease.

A trial and error period was to be expected through the months that lie ahead.

Immediately the thoughts ran through my mind "No, there has to be something!" Thinking, so much for the simple drug to take everything away in a week. It simply did not exist!

I've been on so many medications over the past year. I've been on Amitriptyline for the sleepless nights, with increased doses from day one. For the pain levels, it's been Viox, to Ultracet, from Bextra, to Magnesium compounds, to what I am on now, Guaifenesin.

Which from what I've read on the internet Guaifenesin is a decongestant they put in cold medicines to rid the body of toxins.

The normal starting dose is on the average of 600mgs a day, but my doctor has put me on 2400 mgs a day. When I spoke to my doctor about this he remarked, "Deb, as bad as you have Fibromyalgia, a lower dose would not be beneficial to you."

He's studied Guaifenesin, and has used it providing relief of pain for some of his fibro patients, with a tremendous outcome. He couldn't say how long it would take, or if it would even work for me as it has for others, but at this point it's a start, and a small bit of hope.

I've tried hot showers, baths, ibuprofen, Jacuzzi baths, heating blankets to ease the more painful days and nights. On some days its more than I can handle just to vacuum the rug. So many days I wanted to throw the towel in, and give up totally. The pain is beyond what any words could convey. I've prayed endless nights for a new beginning to have my normal life back.

With as devastating as this news put me in, each day I can only hope somewhere there is relief out there.

If you arrived on this page by chance, this is not to by any means an alternative to seeing a doctor about your symptoms.

This is only to let you know I am one of many thousands out there that had their life ripped out from under them.

And if you been down the road that I am still traveling, and something has worked for you, please email me.

I've enclosed some links at the bottom of this page that I've found to be very useful in helping me deal with my symptoms.

I hope they will help you too.

If you or someone you know has been diagnosed with Fibromyalgia, the main thing to remember is that you're not alone, and it is not all in your head!

Please don't give up hope!

Someone, somewhere, will come up with a cure for this god awful painful disease.