whether or not Your lips move

You speak to me

this is fibromyalgia. this is my reality. March 5, 2010

Filed under: education,fibromyalgia,stuff I've learned — Ashley @ 11:29 pm

Re-posted from my facebook notes.

I have been getting lots of questions on what it means to have fibromyalgia syndrome, or FMS or FM for short. I thought I’d take the opportunity to write a few notes about FMS, what it is like having it, and what you can do to support those you know who have it.

There is still a lot of research going on, but it is “a disorder of central processing with neuroendocrine/neurotransmitter dysregulation.” Basically this means a person with FMS has a central nervous system that processes pain and other sensations differently from most people. Research is also finding “increased levels of substance P in the spinal cord, low levels of blood flow to the thalamus region of the brain, HPA axis hypofunction, low levels of serotonin and tryptophan, and abnormalities in cytokine function.”

Everyone is different, but here’s how you might be able to imagine it. Think of a time you were in the most unbearable pain of your life. Dial it down a few notches. Then imagine having that pain every day, all day, in at least one part of your body, normally a muscle group. It may be in a different place from day to day, but it doesn’t go away so it eventually exhausts you, which is a major bummer because FMS already messes up your sleep cycle. Without restorative sleep and with being in pain most of the time, your brain goes into a “fog” that causes you to forget things, be dizzy a lot, mix up your words, and have a terribly difficult time concentrating on anything. Emotional breakdowns are inevitable and you have to consciously fight every minute of every day to maintain a positive attitude.

It gets even better. Sometimes you also have debilitating migraines or wake up in the night with your limbs numb. Sometimes you have “pins and needles” in your hands or feet. Sometimes the ringing in your ears gets so bad you can’t hear. Sometimes you have to wrap yourself in a blanket in an air-conditioned room because you’re so cold.

Who knows. There are a lot of studies trying to figure this out. Basically, no one really knows why some people get it and others don’t. They think there may be a genetic link. For some people FMS comes on slowly. Normally there is a “trigger” of some sort like an illness, injury, or some other trauma to the body.

Among other things:
– the ability to handle stress like most people
– the ability to work “normal” hours, or work at all for some
– it takes a LOT of time to take care of yourself and you often feel guilty about it because it means you can’t take care of others
– it takes you longer than a normal person to wake up and get ready in the morning because of the pain and stiffness
– you can’t really “commit” to being anywhere because you don’t know how you might feel that day
– sometimes you can’t go places everyone else can (for instance, I can’t be anywhere near cigarette smoke or spend much time around people whose clothes/hair smell like smoke)
– the way people treat you; some don’t realize (or care) that you need a little extra grace and patience from them
– you get tired of talking about the way you feel
– you have to tell people you’re never going to “feel better soon”

There are a few FDA approved meds out there. For me, I’ve made the decision recently to stop taking the one I was on, because there isn’t strong evidence that it won’t affect a fetus and we want to have kids soon. Warm water therapy, getting plenty of sun, and trying to stay as warm as possible at all times can help. There is also a fine balance that must be struck between too much exercise and too little. I take a cocktail of about 14 vitamins every day to, among other things, try to help my adrenal glands with cortisol production and hope that one day I will have some energy help from that. Some people have found that eating a specific diet helps.

There is no cure for FMS.

-Pray for me. A lot.
-Champion me. Help me to see my potential and remind me of my dreams. When I’m in a bad FMS flare (like I am now), it is really easy to forget about the things I want to do and be.
-Care about me, but try not to pity me. I am still capable of doing a lot of what I want to do. There may come a day when I can’t do much of anything, so for now I want to be given all the opportunities possible.
-Extend me a little more grace and patience than you might for “normal” people.
-Forgive me. I may get into moods that will really annoy you or do things that will disappoint you. I may have to say no to you a lot. Please realize that I only have so much energy to go around, and I HATE it when I have to spend that energy on myself. You can help me by not adding to that guilt.

For more information visit the National Fibromyalgia Association at www.fmaware.org.