Hope for CFS

If you have CFS, please don’t think things look entirely hopeless.

Doctors will tell you "no treatment, no cure", but they’re only half-right ... there’s no FDA-approved treatment, but there are things that they can do to help you. First, they need to address your symptoms with appropriate medication. If you’re vomiting, then anti-nausea medication; if you’re dizzy, then anti-vertigo medication, etc.

My first relapse was Thanksgiving 1987. By late Spring 1988, I was back to work full-time, and stayed at work full-time till February 2000. I won’t say it was easy – there were a lot of times that all I did was work/commute/sleep, but a doctor who knew what he was doing was able to get me back to work full-time for 12 years. That was 12 extra years to build up the monthly amount of my Disability benefits, 12 extra years to save for retirement, 12 extra years of not being stuck in the house 99% of the time.

His theory was that if you improved the quality of sleep, the body would begin to heal itself and then you could see what symptoms remained to be treated pharmaceutically.

Although CFS is not caused by insomnia, like any other health problem it can be made worse by not sleeping well. If you’re having trouble sleeping because of pain, then pain pills and/or sleeping pills will improve the quality of your sleep. Instead of drifting in light Stage 1 sleep for 20 hours, which is the "unrefreshing sleep" most patients complain of, you’ll get down to deep Stage 4 sleep, where healing occurs. After several months on effective sleeping pills, I suddenly developed a 101 fever. After a week, I was concerned that it didn’t go away and asked a friend who’s a nurse practitioner. She responded "Congratulations, you have an immune system again!" Good sleep had strengthened my immune system to the point that it could attack the virus. I ran a fever for six months, and when it was over, I felt better than I had in a long time. Although I backslid when I could no longer get those sleeping pills and was no longer sleeping well, I never got as bad as I had been before, because I now have a functioning immune system again to keep the virus in check.

Dr. Montoya at Stanford is having good luck with an anti-viral medication, but the stuff he’s using costs over $1000 a month. A member of my support group talked to her doctor about it, who suggested that Valtrex is almost the same thing, for only $200 a month, try that first, and if it doesn’t work, then move up to the more expensive stuff. Just like Dr. Montoya’s patients, she had a period of feeling even worse for several weeks, as the medication did its work, and then started to improve – she’s now back to work!

Dr. St. Amand has a popular therapy for fibromyalgia, which would seem to make sense for CFS, too. His theory is that guaifenesin (the stuff in cheap cough syrup and Mucinex) releases the toxins from the tissues. Like Dr. Montoya’s therapy, you’ll feel worse at first, with all those loose toxins running around looking for a way out.

Personally, I combined guaifenesin with triple-digit days and my grandfather’s old-fashioned sweat therapy: take a hot bath at bedtime, immediately followed by chugging a hot beverage (he preferred mulled wine, I used hot tea to wash down my guai pills), then immediately wrap up in every blanket in the house and sweat it out. And, boy, did I ever. Do laundry right before you start this ... I woke up every morning with my sleep shirt stinking to high heaven. I couldn’t stand to leave it on for one minute more than necessary. It wasn’t a good clean healthy sweat smell: it reeked nauseatingly, which indicated to me that those nasty toxins really were coming out as promised, and in massive quantities. Every night, I had to put on a different sleep shirt because I couldn’t wear the same one a second night, and the sheets needed changing a lot more often than usual, but the end result was worth it.

Dr. Murphree (www.DrRodger.com) told me that for every year of deterioration, you need at least one year of recuperation. So, don’t get frustrated if you’re not up to running marathons right away; at the earliest, I should expect to reach maximum improvement in 2010-2012 (and, no, I didn’t run marathons when I was well, so I don’t expect to be able to run one in 2015 – I don’t need to be SuperCrip, I just want to get back to work in the career I loved).

Nonetheless, compared to where I was in 2000-2002, when no one was giving me any useful treatment, I can see that I’ve made big strides: I’m no longer spending 24 hours a day lying in the middle of the bed hoping that I won’t pass out. I can sit up without immediately getting dizzy and needing to lie down. I can go out a couple hours two days a week without making myself worse (but three days is too much), a vast improvement when a quick trip to the doctor 4 blocks away sent me to bed the rest of the week. The digestive problems that used to plague me on a daily basis are now down to a couple times a week – still annoying, but no longer overwhelming: my life doesn’t revolve entirely around running to the bathroom. I can work more hours, more reliably – we’re a long way from the end of 2000 where I could manage only 5 minutes per hour.

Knowing what was recommended to my friend with polio for hand/arm problems from overuse, I tried the same thing: it’s not "use it or lose it" but "conserve to preserve". My hands work better if I don’t do too much. Whether it’s stitching/knitting/typing/chopping vegetables, I know when to stop and take a break so that I don’t reach the point of complete muscle failure. You don’t need a doctor for that quick-fix, only your own sense of observation of how much is too much.

In addition, there have been great strides made in research. While some government-funded researchers are still clinging to the disproven notion that the problem is entirely psychological, privately-funded research has found genetic abnormalities, a virus that’s also found in MS patients, and similarities to polio. Once they know what causes it, they can quickly work on a test, and a cure (or at least a treatment to minimize the symptoms).

Until then, find a doctor open-minded enough to experiment and think outside the box. The physician assistant I’m now seeing has a brother with MS; he sees the same symptoms, unlike someone who has only read about them in a book he knows I’m not exaggerating about how severe they can be, and prescribes for me what the MS specialist is prescribing to his brother for the same symptoms. Problem solved.