So,I take Nuvigil for my narcolepsy. It doesn’t have me functioning at a normal level but it gives me a few hours of close to normal and then most of the day at a safe to function level. My Dr still doesn’t want me driving in the evenings. Ok, so every month when I go to fill it, there is some kind of problem and I sometimes end up having to go without for a few days resulting in me sleeping literally all day long, about 21 out of every 24 hours. So yesterday was my last pill and my Tenncare won’t let me fill anymore prescriptions until April 1st because adults are only allowed 5 prescriptions a month. So I get to go without meds for 4 days then about 3 days at least to build back up in my system. Thank you narcolepsy! Thank you Tenncare! I get to sleep thru 4 days. Woo hoo!
Fibromyalgia is a very confusing condition for several reasons. First of all, there is just not a whole lot known about Fibro. Not a lot of money or time is put into the research of Fibromyalgia. Second, there have been a LOT of symptoms that have been attributed to Fibromyalgia.
Sometimes it seems like once you have the Fibro diagnosis every time you have a new symptom your Doctors just say, “Oh, it’s the Fibro,” without even investigating for other causes. I have noticed some Fibro patients are bad about this as well. I have left many bulletin boards and support groups because I have gotten sick of all of the “Who else has my symptom?” posts. They go something like this:
Initial poster: “I have noticed every time it rains that my left nostril gets stopped up and my right elbow itches. Does anyone else have this problem? It is driving me crazy. My neighbor’s sister’s dog’s groomer said I can take supplement X to help but I don’t know what dose to take….”
Answering posts (approximately 84 out of a couple thousand users): ” Yes!! I have that and it is a Fibro symptom! It is caused by ….insert one of 84 causes….and I take supplement …..insert one of 20 supplements….and it works wonders!! I take …. insert one of 20 doses…. Good luck and keep us posted!!!”
Third, Fibromyalgia is very hard to explain because it is not just one type of pain you are dealing with. I experience about 7 or 8 different types of pain from aches to sharp stabbing pains to electric shocks to pins and needles. The type of pain varies in location and intensity. I have certain places that hurt a lot of the time but no part of my body is off limits and I never know what will hurt today.
Fourth, patients can experience numbness and weakness in their arms, legs, hands and feet. This makes using their hands or walking and driving difficult. It limits activities.
Fifth, fatigue. Fatigue is a major symptom of Fibro and one I struggle with in particular. Sometimes the fatigue is so bad I cannot lift my head from the pillow. It can last for an hour or it can last for weeks. I have no idea when it will hit or how long it will last. My medications also make me sleepy, and I have narcolepsy which makes me experience excessive daytime sleepiness. It is a wonder I am ever conscious!! LOL. I struggle with this. Sometimes I feel like I sleep through my life. I have to take at least one nap a day.
Sixth, Fibromyalgia is unpredictable. Some days I may feel pretty close to normal and may be able to go shopping for a little while or run errands or clean a little. These days are rare and I try to make the most of them. Other times I may sleep for a week or writhe in pain for days. I never know what a day will bring. I have gotten better at predicting my arthritis pain. I know if I am walking/standing/sitting up for a few hours a day then I will have 3-4 days of extreme pain in my hips and back. The Fibro pain though is pretty unpredictable. I do know that it is affected by the weather. When it rains I hurt. I know that much.
Seven, there is no set treatment. There are a few drug regimens, some get results with exercise regimens, and others with dietary changes or supplements.
Last, no two people with Fibromyalgia experience it in the same way. The same can be said for treatments. No two patients respond to treatments in the same way. A lot of treatments are spread by word of mouth and are tried by desperate people paying out of pocket in hopes of finding ANYTHING to help relieve the pain.
Hopefully, in the future we can make some progress in helping those of us with Fibromyalgia find some relief. It is difficult to live a quality life when you spend a great deal of it in pain. Gentle hugs out there to all my Fibro brothers and sisters. Comment below and let me know how you are coping and how you are dealing with the pain.