A Fibro Story

[Carolyn, Director]

I am a 27 year old female who has had FMS since I was 14-15 years old. I was not formally diagnosed until I was 18 years of age, which meant many many doctors visits that had no results. Most of the time it seemed that the physicians thought I was just making things up in order to gain attention. It was very frustrating. I was finally diagnosed by a rheumatoid specialist. I was a young girl in a doctor’s office surrounded by people much older than me, in their 60-80's. The doctor basically poked me in a few places, I said "ouch" and he handed me a pamphlet on FMS. That was it. No real ways to help cope, or even a prescription! This was very upsetting and confusing for me. For the first time I could put a name to my pain. However, I was still left with many questions and not a whole lot of answers. Everything that I have learned since then has been on my own through research and talking to others who live with FMS.

From the age of 15 until about 19 I didn't have a pain free day. I lost many jobs because I would be fine one day, and the next racked with pains so bad that I couldn't get out of bed, then a few days later after the flare up I would be “all better again”. This caused depression and that in turn caused more pain. And so my downward spiral would begin. Sometimes lasting for months on end. For a very long time I was unable to pull out of that. Even through all the pain, I have never been big on prescriptions. I would down right refuse to take them. I always wanted a natural way to deal with FMS, not to cloud it with drugs. It made sense to me that they would prescribe pain killers, but having the doctors try and give me anti-depressants was very upsetting to me because I didn't feel that I was "depressed" Just sick and tired of being sick and tired (This has been a phrase repeated many times in my life!). I now understand that some of the anti-depressant medications will work to help alleviate the pain by working with the chemicals in the brain, but I still won't take them.

In my early 20's, now a young woman with FMS, I decided to learn about massage therapy, and holistic medicine. My first real break-through was in school. It just seemed to me that Western medicine just didn't "get it" I always felt like the doctors were treating the symptoms and not the problems. So my first class was on treating/caring for people with FMS. I thought that the best way to learn about my condition was to learn how one is supposed to treat a person with FMS. This class opened my eyes to a whole new world! I found many holistic ways to approach FMS.

I think that the most important things I learned were things I knew already, if you can believe that. I went through some counseling and got rid of emotional baggage that I had been holding onto for quite some time, I improved my diet and nutrition, and most importantly changed my attitude towards FMS and the life a head of me. I realized that essentially it is all in my head. Literally, because everything starts in our brain. I became very in tune with my body and could sense the flare ups before they hit hard. There are "tale-tale" signs that my body gives off before the flare-up so I would prepare myself and try to mentally beat the flare up by telling myself over and over that yes you are having a flare up, but its not the end of the world, we will get thru this and not let myself get into that downward spiral of depression and pain. Gradually by doing this routine I am able to keep the severity of the flare-ups at a low and they don't seem to last as long. And that's without taking a single prescription too.

One prescription that I do take is for sleep. I can alleviate many of the symptoms if I just get good and proper sleep that is essential for brain function and body regeneration.

Distraction is another method I like to use. Instead of focusing on the pain, I get very involved with an activity or project at home. By not letting the flare-up take control of my every thought it seems to help. Mind over matter and active visualization philosophies of thought.

Another factor was stress. No one can eliminate stress entirely (if you know how let me know!) but keeping that to as little as possible helps a lot too.

I had a remission of sorts after doing all of this. Almost five years without any devastating flare ups. That was amazing. I am again battling FMS. The flare ups are back, but not as bad as it could be I guess, and I attribute this to very stressful factors in my life right now. So, in my day-to-day life I make sure to remember the small things: I have a great man in my life that takes care of me when I am down; I live just steps from the beach in Hermosa Beach. People come here to vacation all year long, and I can say that it is my home! I have a great job and a family that loves me. I am so fortunate to have these things in my life.

All in all, I feel that having a good mental out look on life and my surroundings, getting the rest I desperately need, keeping stress levels low and eating right are my best survivor tools. Really, those are tools that everyone can use to increase their quality of life. You don’t have to have FMS for those to apply!

I hope that you can use this in some way to benefit others. I have shared my views with others with FMS and it helped them. The more the merrier! Of course there are many more parts to my story, but this was my best attempt at a condensed version.