Married to Fibromyalgia...

Have you ever had to watch a healthy person, with no signs (internal or external) of health problems suddenly become debilitated? It's heartwrenching. I hope none of you have to go through this.

My husband was a healthy, athletic soldier in the US Army. Specifically, he was in a TRADOC unit, the Army Band. His enlistment was scheduled to end in July of 2005. At this time, he had planned to finally accept the full scholarship to UL for Music Education, and then return to the Army as an officer. He'd come from a long line of officers in the Army; and he was all too proud to continue the tradition.

When he first enlisted, the Army provided him with a waiver; his arches were close to falling, making him nondeployable. However, the condition was not considered severe enough to interfere with his other duties as a soldier or with his specific duties as a bandsman. Occasionally, he would come home from work with shin splints; and he would be told to go to the doctor at the TMC to make sure every thing was okay. He always checked out good.

Then the pain started. I admit, I thought he was exaggerating a lot of the time. I mean, as a long distance runner myself, I used to get shin splints. I knew what they felt like. But he was starting to complain daily.

Then, on Thanksgiving of 2004, he was marching with the rest of the 62nd Army Band in the annual Sun Bowl Parade. As he finished, he nearly collapsed. When asked, he complained that his knees were hurting. I took him to the doctor's office, and was told that because of his arches, there was a possibility that he'd been overcompensating, causing his legs to be disalighned and resulting in the pain. Against my better judgment, the doctor prescribed braces for my husbands feet and placed him on a Profile.

One week later, a friend of ours came over. He and my husband were sitting at the kitchen table while I was in the other room working on a paper for school. I got up and walked into the kitchen to grab a soda; and as I passed by my then-fiance I lightly squeezed his shoulder. I had never been so horrified as when I saw him crumble to the floor into the fetal position and cry.

Scott jumped and immediately began looking at the shoulder. He asked me to demonstrate how hard I had squeezed and I showed him. "This isn't right" we both kept repeating.

For nearly five months, Donald fought with the doctors. They continually sent him to psychiatrists, believing that his pain was psychosematic. It wasn't until my father, a retired officer in the Army, suggested that he begin reporting to sick call every day before he began to gain attention.

Donald's Chief Warrant Officer became concerned after seeing Donald report to sick call daily for three weeks. He made some calls and finally got Donald in to see a specialist. They claimed it was arthritis, and scheduled him to see another specialist in 6 months.

Donald and I were married on March 25, 2005. One week after our wedding, I was visiting with my father in our living room when I heard a scream and a crash from the bathroom. I ran into the bathroom to see my new husband staggering: "Help, I can't lift my leg to get out of the shower." What? Arthritis can do that? At 22 years old? With no prior problems?

My dad began putting his networking skills to work. As a former administrator of some Army Hospitals, he had met several specialists in his time. Phone calls started going back and forth. It took my father about a week, but someone had finally told him about a little known disorder called "Fibromyalgia".

We returned to the TMC, but no one there knew anything about this disorder; only that it normally affected women in their 40s and 50s, and was still being researched because it was still new.

Donald was medically discharged as 70% disabled in May of 2005, two months before he was scheduled for normal release. He was paid a monthly disability income of $518 a month, and placed on a permanent profile stating that he was not to stand for more than 10 minutes out of every hour.

Have you any idea how hard it is to be on your feet for only 10 minutes out of an hour?

Since the discovery of this disorder, much more information is now available. However, in the past two years I have watched as my husband has lost the normal use of his wrists to pain, the ability to walk across the apartment, talk on the phone for more than 5 minutes, and even take a shower at all. We've had to lower our bed so he can lay down more easily. Whenever we leave to go anywhere, he must use a wheelchair (which is very hard to fit into a cavelier). I watched as he went from a healthy 155 pounds to an unhealthy 225. His memory is horrible; I can be talking to him about an assignment I'm working on for school and he will forget everything after only 5-10 minutes. We have a shelf that looks as though it could stock a small pharmacy. He's depressed and irritable, and in less than a month he will be turning 24 years old.

Only 24; not exactly the age you think of when you hear these types of symptoms...

So, what is Fibromyalgia? Put simply, it's an intermix of chronic pain and false pain.

Have you ever kicked your shin against something? You remember that sharp, piercing pain you felt? Imagine if that pain never dulled to a throb, but stayed sharp. Fibromyalgia causes the nerves to misfire, sending signals of sharp pain even after the pain should have dulled to throbbing. Additionally, he feels this type of pain all over all the time, no matter what is going on.

It never subsides.

And to make matters more complicated, Fibromyalgia comes complete with a set of "tender spots": pressure points in the body that will send extreme pain signals upon even the slightest bit of pressure. There are many such spots, and their activity differ from patient to patient. Some will only have 10 active out of the 38 possibilities; my husband has 37 active tender spots.

But that's not all. Because of the lack of sleep (as a result of so much constant pain) Fibromyalgia also leads to Chronic Fatigue. This isn't helped by the constant need to stay seated, which can lead to a feeling of lethargy.

Additionally, Fibromyalgia leads to clinical depression. This is attributed to, again, the constant pain and fatigue as well as the sudden inability to continue living your life as you had been.

And one thing that's not listed on the web site descriptions, is the side effects of the treatments...

Donald is on so much medication, it's ridiculous. Narcotics for the pain, two anti-depressants (one for depression, one to help him sleep), muscle relaxants, anxiety medication. Then, of course, some of these medications raise your blood pressure, to now he is on blood pressure medication. The mix of all of these medications is causing irritable bowel syndrome, so he has now been prescribed with something to help him with that. Ulcer medication because some of these medications are so harsh on the stomach; anti-inflammatories to help with the swelling in his legs and wrists. They also have him using a "Tens Unit" to help interrupt some of the signals his nerves are sending.

Two months ago, the Social Security Administration began recognizing Fibromyalgia as a disability resulting in 100% unemployability.

As heartwrenching as it is for me to watch my husband go through this, I can only imagine what he is feeling.

Since the time my husband was diagnosed with Fibromyalgia, the information available has more than doubled. Some very good web sites, should you like to learn more about this disorder, are:

The Fibromyalgia Network and The National Fibromyalgia Association.

However, despite this increased information, there is still not enough information available about Fibromyalgia; at least, not enough to give people the entire scope of what developing Fibromyalgia will entail. And almost no information about how to handle such situations as the spouse or loved one of a patient with Fibromyalgia. Support groups are a start, sure; but more must be done to bring this disorder into public view.