Name: Tricia
Friday, March 17, 2006
Fibromyalgia
First of all, I want you to know I did indeed realize it was Friday when I woke up and I made it into work! On time, even.
My post yesterday mentioned that I have fibromyalgia and I realized afterwards that not everyone probably knows what it is or how it affects people...so here's the low down.
Imagine you have the flu. Your body aches to an extreme, you're exhausted, you feel like you couldn't get up to save yourself if the house was on fire. That's what fibro can feels like. That can be accompanied by headaches, IBS, muscle twitching, numbness, brain "fog" and memory problems, urinary issues, sleep disturbances and other things as well.
Some people suffer all the time; others deal with flare ups like mine. it would be safe to say there is never a day when I am not fatigued or feeling muscle or joint pain but I have learned to take that as a part of life. It's basically my "normal" until I have a flare up and things get much worse.
For a long time, the medical community didn't recognize fibromyalgia as a disease and some doctors still don't. They think it's a stress response or depression or who knows what. I've had doctors who recognized it and accepted it and doctors who completely blew it off.
They also aren't sure what causes it. One thing could be related to something called substance P in your body which decides how your body feels pain. Others say it has something to do with the neuroendocrine system, nervous system or a virus. I've also read and heard that it can be triggered afer a traumatic event (physical, like an accident or major surgery or emotional like something that would cause post-traumatic stress).
And they aren't sure how to treat it. I try to manage mine the best I can with anti-inflammatories because I don't want to depend on any of the other drugs they suggest (steriods, anti-depressants, etc). They believe that your diet can affect it as well - saying to cut down on alcohol, caffeine, sugar & carbs. A regular sleep schedule (because part of it may also relate to never getting into real REM sleep) is also recommended.
Most of the time, I can manage the pain and the fatigue. I have a tendency to overdo things - often - but am getting better at knowing my limits. A little bit, anyway. It's hard for me to admit that I struggle with this so most of the time I just act like it's not happening. When I was first diagnosed, I found some online support groups but came away feeling very depressed and discouraged. Many people with fibro are on disability, some can't even get out of bed some days. I hope and pray that I don't reach that point but I can definitely understand how it can come to that. Hopefully it never will for me. I just keep on going and make my way through...thinking that this too shall pass.
5 Comments:
Hi,
I also suffer with FMS, since 1997, but have been doing fine for quite a few years. Very few flare ups, unless I earn them by overdoing. I tried drugs etc. but they never helped for very long. I have been taking vitamins/herbals for years now, with great success. If you want to check out the stuff I take go to http://hopeandhelp.net , have a great day..Deb
Hey, girl! My mom has been afflicted by this, too. She is about 20 some years older than you and has alot more challenges with her body. She did give up the caffine and sometimes doesn't get out of bed for days. I pray for this often for her and will now add you with her. Sending hugs for you right now!
Deb - thanks! Great site.
Shannon - Wow! Cheryl's mom has it too...it's always so surprising for me to learn how many people struggle with this every day. Thank you for your prayers - they mean so much!
T
Ialso have fibromyalgia and myofacial pain syndrom in addition to a cervical stenosis and two fused disks on the right side of my neck. I try to hide my pain around others, but at home I walk around with a microwaved herbal wrap around my neck. I don't like to take medicine, but I can no longer do without it. I need to take a tranquilizer, muscle relaxer and pain medicine just to be able to stand the pain of lying on my pillow. I know where you are coming from... sometimes when I wake up I think I can't get out of bed. Thankfully, after I am up for an hour or so I usually feel much better. They blame all this on a car accident that happened at least 14 years ago. Nancy
Wow!! Another thing we have in common!
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