Living with Fibromyalgia

When I turned 40, I decided it was time to get in shape, so I began an exercise program. I biked, jogged, lifted weights, hiked and did aerobics. I ate right. About 3 years later, I started getting chest pain when exercising and went to the emergency room several times. Sometimes my heart would just race for no reason at all.

The doctors had me hooked up to the monitor and they couldn’t figure out why, but my heart rate was somewhere around 150 and I was just lying there. It lasted about an hour, then just went away. That was the first time I went to the hospital and when my symptoms began escalating. Maybe I shocked my system with all the working out. I had dreamed of being in Marathons when I was 80. I had planned to hike the Sierra Trail before I got too old. It was over the next 10 years that I realized that wasn’t going to be my reality.

I began having strange symptoms. One day I woke up to a “dead right arm”. I had no feeling in it at all. Then it started twitching and jerking. I was rushed to MRI for a brain scan. Normal. I had tingling sensations in my hands, arms, legs and feet. Panic attacks, anxiety attacks, etc. My arm stayed numb for about 3 months and it was hell. None of the Dr.s even believed me. They all thought I was lying or trying to pull something over on them. One physical therapist deliberately burned me with a hot pack because she thought I was lying or faking. Very hateful. It was a terrible time for me. I became more depressed than ever, although I have spent my entire life being depressed and that is a whole other story. Even as a child I was withdrawn and depressed because I had such a terrible childhood. Perhaps that has something to do with the fibromyalgia I suffer from now.

Finally after about 6 months, the numbness began to fade away and I slowly regained feeling and use of my right hand. The pain and weakness have never completely gone away and that was about 10 years ago now. I just continually got worse in other ways. I could no longer exercise the way I had and I began having more problems with tingling in my hands and legs. Back problems arose….herniated discs, sciatica. I had spinal injections. No one told me you were only supposed to have only so many in a year. Instead, they just kept pumping me full of the stuff. That has probably not helped and things keep getting worse.

Anyway, to the point of the fibromyalgia. Back in about 2001 was when I really started to notice it. I could no longer tolerate any cold whatsoever. I would get terrible pain in the middle of my back if I got too cold. I would wake up in tears every morning from the pain. It was getting harder and harder to function and I needed pain killers.

I was diagnosed with Fibromyalgia in about 2002, but I was the one who didn’t believe in it. Not the other way around as happens with most patients. I just couldn’t accept it and didn’t want to believe that that was what I had. It seemed ridiculous, because I’d heard so many stories about it not being real that I didn’t want to have a fake disease.

I truly believe in it now, because there is no other answer. The pain and debilitation got worse over the next 5 years. I was fortunate in that my doctor was compassionate and understood that I was not lying (new doctor).

I’m really in pain and I feel like I have what I call the “bone-break flu” at all times. The only way I’m getting by now is on painkillers. Even that is not enough at times. The winters are the worst time and the weather has a great affect on how I feel too. I have terrible stomach problems too and have had to go to the emergency room several times. I’ve learned to take my medicine for ulcers and I’m ok as long as I take it.

What did ancient people do? I can only imagine how they must have suffered. I also have bad knees that stay swelled up 24/7, and a bad leg that the pain is coming from my spine, so the doctor says. I suffered with headaches for years. I have osteoporosis and the medicine for that tore my stomach up. I’m going to a specialist the 20th, I only hope they can help me with something else.

If you have the symptoms of fibromyalgia or have been diagnosed, don’t let anyone make you feel as if you’re faking it or are a hypochondriac. It is real and there is real help out there. There are compassionate, caring people out there who will understand, just find them and don’t give up on getting help.

The disease will change your life, but there are things that will make you feel better, even if you are on pain killers. The way I feel about it is, If you need it, you need it. Taking them has given me back a pretty good quality of life, but the mornings are still hell. Sometimes I’ll stay up late into the night, just dreading the waking up process because I know I will feel so horrible in the morning. My body hurts so badly, that it just makes me cry. I wonder how this will be ten years from now? Maybe there will be a cure by then and the world will believe there is something truly wrong!