Tuesday, July 23, 2013

I Am Fibrotastic!

In my early 20’s I became increasingly more fatigued than I had previously been. My concentration was off. My muscles were sore all the time. I did not sleep well, and felt as though my life was always moving too fast and it took all my energy to keep up with it. I was trying to juggle a small child, college classes on and off, parties with friends on the weekend, and I worked. Sometimes multiple jobs. So when I looked for a reason why I felt the why I did, it was obvious. The stress of being a young single parent and all the responsibilities that come with it was always number one on the list. Working at a health club, babysitting weekend nights and staying up all night were all next in line. I went to counseling to learn how to manage my life and although somewhat helpful, I was told I had Adult ADD, that I was bi-polar, and had manic depressive tendencies. No thanks. I didn't like that but what can I do. They are the doctors right?

 Don't they know best? After trial and error for years with multiple medications, lets face it TONS of medications and lifestyle changes nothing ever really improved. So I gave up.

In my early 30’s when my second child was a year old I came down with meningitis. After this episode I never seemed to fully recover. Widespread body pain and fatigue were ruling my life. Most days I was forcing myself to stay on my feet and get through the day, get chore done and not look weak or lazy. I was now married and had more responsibility and could not figure out why life seemed so unfulfilled. Yet another year later the signs of meningitis reared its ugly head and I was back at the hospital for a second time. Who in the world ever heard of such a thing?! By now I think I am a medical mystery, an anomaly. I am messed up! I began to do less and less of things I enjoyed, became anxious in certain situations, withdrew from friends. I suffered from injuries and winter illnesses that seemed to never want to heal or go away. Headaches and pain were at an all time high. I finally decided something was wrong with me and it must have been the meningitis.

I searched the internet, read books from the library and although I realized I do in fact have ADD, there were too many other possibilities out there for me to diagnose myself with anything. Finally I decided I didn’t know what was wrong with me but I knew changing my diet would be nothing but helpful. I did that and no change really made much of a difference. In between numerous doctors’ appointments with dismissive answers, my in home daycare children, foster children and my own third baby, I ended up having to scale back, and eventually quit everything to just sit home and be sick. I felt like a failure and a loser. I felt weak and ashamed that my body could not keep up with everything my heart wanted to do. I gained weight, lost hope and became very angry. In seeing a Rheumatologist for another injury, he quickly changed his line of questioning, did the tender point test and diagnosed me with Fibromyalgia. I went home searched the internet to find out exactly what that was and then had my greatest A-HA moment in years. I was so  happy to have a diagnosis that validated me. Now I knew what was wrong all these years! I was not crazy! I was not lazy. I was not being a drama queen and I WAS NOT making it up!! Happy happy joy joy!!

Then I cried. For a long time. Like days..in the shower, in the car, in the bed....It seemed I was doomed to a life of pain with no help or cure in sight. The emotional fallout was much greater and complicated than I can ever put into words.  I ended up on disability and just plain miserable.

At 39 I decided to try diet change again but his time be more strict. The information was mostly incomplete and contradictory and the only common denominator I found in hundreds of hours of research was diet. Maybe helped a lot or a little but it was obvious that was a factor. No artificial ingredients, no caffeine, gmo, hfs, etc. and as little processed foods as possible. As clean as I could afford. I even cleaned out the house of chemicals, hair products, tore up carpet you name it. I went all out. This time it made a noticeable difference. Right away I felt like I had a little more energy, and I was less heavy, angry and also has fewer digestive issues. I felt good enough to start running and working out again, where I had done in the past, but then it became too painful. Shortly after, bringing my youngest to preschool I met another mom there who was a doctor. We got a little friendly and after a few of my side handed comments like “I’m always so tired” and “everything hurts” she  said she would love to see me (as a patient) and try to figure out what was going on. I declined for a while. Beside the fact that it had the potential to be awkward, I was suffering from doctor fatigue. I did not want to go through that anguish of hearing “its tendinitis, I have to lose weight, it will go away eventually, or all new moms feel like this”. Eventually winter had destroyed me yet again and I figured what do I have to lose?

She did testing no one had ever done before. I had Fibromyalgia for sure, but also some overlapping Chronic Fatigue Syndrome, I was hypothyroid, and had Adrenal Fatigue. Other side conditions from the high stress and wacky hormones also developed or had become worse, like TMJ, depression and anxiety. Throughout this process I discovered it all led back to the birth of my first child. I had been living with this for an astonishing 22 years, all the while it was getting worse with every stress or trauma. She put on supplements specific to my needs based on those tests and a thyroid medication. I exercised a minimum of 30 minutes a day, 5 days a week. It hurt. It was not easy. But every day I could do a little more and a little more. Sometimes I cried while I ran around the track, other times I yelled at the tv and cursed the maker of the dvd, but my it was helping me. I could see it and feel it. And combined with the healthy diet I felt like a human again. I decided to be in control. If I could not cure it I would mold it. I was in pain anyway, so I decided I would benefit from it by building a stronger body for it to live in. Feeling sore from a workout is mentally and emotionally more empowering than feeling the pain from Fibro itself.

 Although there are “flares” and bad days still, they are happening less and less often. Overall life is much better. I have less pain and less depression. But those days are fewer and fewer. I was able to start working and start a support group. I am running and participating in obstacle course races and feel great most days. I started an organization for people with who suffer with chronic pain who also stay as active. They get together for events, give support, suggestions and share stories of accomplishments. I never would have been able to get any of this done without educating myself, having the support of a good doctor and a supportive family.

My advice to anyone is to know you are you are important. Your life matters. No one will fight for you as hard as you will fight for yourself so do not give up. Keep looking for the right doctor, vitamins, or exercise. Try everything alternative as well as modern. Know it will most likely be a combination of things that help, just as it is a combination of things that are making you ill. It may take months or years but it’s worth it. You have to form a front of every level. Physical, emotional, mental and spiritual so it has no chance but to back down. I know it hurts. I still cry. I still curse the gods. Its okay.

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