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Living With Chronic Pain: Sleep disorders
“Thanks but _______________(insert: I have already tried that or that will make it worse)” is a common phrase in my day to day conversations. People mean well but never quite understand the level of pain I am in on a daily basis. I have accepted it, learned to cope to the best of my abilities, learned to deal with the fact that this syndrome is not curable, found creative ways to get my daily tasks done and it takes a lot of energy! Fibromyalgia does not go away. It may go into remission, your pain may lessen by changes in you lifestyle, you can go off meds but it will never be gone. I have had many accounts from people this summer about how they had a friend that had fibromyalgia but they got rid of it. It’s not possible. That means they didn’t really have fibro but something similar to fibro, probably illness or injury induced. There are many types of fibro. It’s like a snowflake. No two fibromyalgia cases are alike.
Lets start with a little fibromyalgia education:
Description of fibromyalgia: long-term body-wide pain and tenderness in the muscles, joints, tendons, and other soft tissues in varying and alternating spots on the body.
1. Fibromyalgia is a syndrome. Syndromes are illnesses or symptoms caused by something unknown.
2. It is an INVISIBLE illness. What you see on my outside does not match my insides. I have made “looking ok” an art form. Keeps people from giving me sympathetic looks or telling me how sorry they are for me.
3. I am not lazy. I don’t sleep. If you don’t sleep it makes you tired. Simple facts. AND even if I do sleep, I don’t. My constantly firing, never at rest, nerve system basically runs a marathon when it’s supposed to be sleeping- restless leg syndrome at it’s best.
4. Regular pain meds don’t cut it. Not even close. At most they just help the bursitis I have developed due to fibro. If ibuprofen or acetaminophen work, then you don’t have fibro.
and
5. No I don’t want to see your____________(insert chiropractor, massage therapist, naturalist doctor). I have a pretty awesome doctor who takes care of me, that was the first to believe me after seeing 5 different doctors in 4 years. She was the first to not tell me I was “depressed”, she told me that I wasn’t insane and that I wasn’t lazy. I think I will stick with her thanks. I am seriously SICK of doctors. The best thing you can so for some one with fibro/CFS is show compassion, not sympathy. Be supportive and have empathy. We can’t change the failings of our body or the preposition of ours bodies to chronic pain and fatigue. We can only deal with it and make the best with what we are given.
After looking back over my completely unhealthy life I really think that I have had symptoms of fibro since I was really young. There are studies coming out that sleep disorders could be a possible cause of fibromyalgia. I have had insomnia since I was 8 years old, possibly younger but I might not remember. I’ve gone through periods of being able to fall asleep, but not stay asleep or not being able to fall asleep but then having a complete lack of ability to wake up in the morning. There are also times like now when I just can’t sleep in any way. 1-2 hours have been my average for the past 3 weeks. Fun huh?
Basically it comes down to the age old question: What comes first? Fibro or a sleep disorder? According to this article Dr. Tom Nilsen and Dr. Paul Mork from the Norwegian University of Science and Technology (NTNU) conducted a study in order to examine the impact of sleep problems on risk of the syndrome in a group of women in Norway. Dr. Mork, explained:
“Our findings indicate a strong association between sleep disturbance and fibromyalgia risk in adult women. We found a dose-response relation, where women who often reported sleep problems had a greater risk of fibromyalgia than those who never experienced sleep problems.”
So could the detection of sleep disorders early on help prevent fibromyalgia? According to the researchers, further investigations are required to study if early detection and treatment of sleep problems lowers the risk of women developing the syndrome.
Let me know you’re thoughts.
