In her comment to the post, Gone for treatment back by 2:00, Nancy wrote that it is helpful to remember that chronic fatigue won’t kill us. My physical therapist put it another way, saying, “It’s just pain – that’s all”. I knew that she wasn’t minimizing it, just trying to help me from worrying about it or attaching more to it than is necessary.
I know that fatigue that Nancy writes about. It’s not the fatigue that leaves you unable to move, as if you have the flu. I’m talking about the sleepy kind of tired. I’ve had both. Even relatively health these days, I often need a nap. And there have been too many times when I’ve pulled over while driving because I just can’t stay awake. Now, that can be life threatening if you don’t watch out.
But, it can be demoralizing to be so tired when we’re in a position where a nap isn’t possible and our work demands our crisp thoughts. I’ve become a green tea drinker (read scientific corroboration) and that helps me stay awake longer without the side effects of coffee. But that doesn’t work for everyone. I also find that even a few minutes meditating can help create more alertness.
I think that one of the difficult aspects here is knowing what is happening as it’s happening and not waiting until it’s “too late. I’d love to hear from others what you do to wake yourself up — and just as importantly, what you do to notice when you’re falling asleep.
Rosalind
Taunee Besson says
When my Fybromyalgia and Chronic Fatigure are firing on both cylinders, it feels like one of those bad flue days when I ache all over and just stare into space. It’s very scary at first. Fortunately, I’ve found it doesn’t have to be this way.
Having gone to my GP, then a Rheumatologist with no relief, I researched the internet and found a place called the Fibro and Fatigue Center, which specializes in this health issue. My husband and I went to an evening orientation and decided to give their protocol a try.
After drawing 24 vials of blood (and I’m afraid of needles), they sent the samples out to labs to precisely measure a number of things. My doctor went over the results with us and prescribed a course of treatment based upon what he saw.
I wanted to let everyone know about these centers. They’ve only been in existence a few years. In fact, the Dallas Center was the first one. It’s not quite four years old.
While I started taking a lot of supplements and medication, I’ve cut back a good bit as the symptoms lessened. What has helped me most to stay alert are a compounded thyroid hormone; biest, a compounded estrogen which doesn’t have the side effects the usual HRT does; Ambien CR and Provigil. The thyroid hormones keep my metabolism going. Ambian provides a good night’s sleep, which is absolutely critical to “keep the bear in the cage,” as my Dr. says. The Biest and Provigil help with brain fog and sleepiness. I can feel the difference in my alertness and mental acuity in an hour with Provigil. Nothing else has been so successful.
Unfortunately, my insurance company has refused to cover compounded medications and Provigil. Consequently, these medications are very expensive. I thought Provigil was used primarily for Narcolepsy, but it’s prescribed for many more situations according to my two doctors.
I will be revisiting this issue with me insurance company soon. I have the spunk to do it now.
Take care,
Taunee
Deb says
I disagree with that assessment of the type of fatigue that we fibro/CFIDS folks suffer. It really is like the worst day of the flu, most of the time. I think that this article does indeed minimize the severity of both conditions!
Julie says
I suffer from CFIDS as well as FMS and am currently in short term disability for the first time in my life. In many ways these illnesses have ended my life. Much the way that Lance Armstong stated in his book, there was a ‘before’ me and an ‘after’ me. The person who didn’t have to contemplate how many steps from my vehicle to my front door is dead and is not likely to return. The person who didn’t hurt so bad that she was taking 25 pills a day and was still in horrible pain is gone. Just lilke the death of any other loved person, that death doesn’t need to rule the rest of your life, but it doesn’t mean that you won’t miss her and sometimes look back at her with a longing ache for what life once was.
Diana says
I suffer from pancreatitis and both the pain and the medications cause constant fatigue. Methadone and buprenorphine are somewhat similar in how they act on opiate receptors. They are the worst of the worst and cause me to fall asleep spontaneously, accompanied by hallucinations and horrible nightmares. I will soon get off the buprenorphine, and I am faced with trying to be pain med-free or going back on opiates (the buprenorphine detoxed me off fentanyl and vicodin).
Anyway, the sleepiness is really tough and I feel for all of us who suffer from this. I don’t drive anymore, and I can only imagine how it has affected all of your lives. I don’t have anything helpful to contribute about staying awake. Naps don’t help; I could sleep for as long as I allowed myself. When I have to do something truly important and demanding to do, e.g. give a conference seminar, it is usually a traumatic enough event so that I am adrenaline-fueled. Then it takes days to recover. If I don’t get the adrenaline boost, I can really embarrass myself, but I don’t let those situations get to me; I don’t have other viable options. I, too, would love to hear about ideas people may have to comabt illness- and drug-induced fatigue.
Good luck to all of us! “Keep working…”