CFS and Relapses

Since my 12 year bout with CFS (Chronic Fatigue Syndrome) began to subside some 15 years ago, I have had long stretches without relapses, but relapses do occur from time to time, and always bring about a great anxiety that the beast is back and back for good. I can’t quite convey how terrifying this notion is. This disease stole the prime of my life – literally, like a thief. From the age of 27 to nearly 40 I endured each day more like a zombie than as a living creature. With no financial means and no medical care, I had to drag myself though each waking moment like an ox pulling a plow. No strength, no energy, no clarity of mind or heart, just sheer dogged persistence. I would somehow make it through and then drop as soon as I got home. Weekends were mostly on the couch or sometimes lying in the sun on the front steps if it was warm enough outside. Aching all over, feeling only the urge to sleep but knowing that sleep would not relieve that urge. Cringing at every loud noise, at light, at the presence of other people talking.

Well, these relapses do continue to occur (I’m in day three of one right now) and finding an absolute isolation in it (my family did not know me during the heyday and attribute my relapses to ‘being in a bad mood’)

I found a decent website for those who are afflicted, but each CFS patient lives with his or her own version of the thing. I seem to be among the 5% who ‘recover’ to some extent, though it took so many years and I am still not finally free of the thing and doubt I ever will be.

It pulls a shade over your window to the world, a curtain within and without, blocking all light and all the world’s beauty with it.

end in sight

For 12 years i woke up every day with a body worn out with fatigue and a brain that could not function properly. Each and every day, with no end in sight and no hope for help. This was CFS for me. All i knew was that in some people, after many years, the illness eventually ran its course. I could only wish to be one of those people and in the end i was, but only after i had literally exhausted the prime physical years of my life, from ages 27 to 39. Today, while waiting for more biopsy results, i feel that i can face anything which had a known prognosis, a probable outcome, a relativwely certain recovery duration. With an end in sight, with some expectation of a termination, things are more bearable.

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CFS update

the virus responsible for CFS (chronic fatigue syndrome) may have finally been identified

A Disease by any other name …

.. is not treated as the same. Example. You have had the flu, so you know what it’s like; fever, headaches, body aches all over, such fatigue you feel you can barely move, brain working slowly and incorrectly, feeling low, blue, et cetera. Now take away one symptom – the fever – and add the fact that you don’t get better after a day or two, but have all the other symptoms day after day, year after year, with no end in sight, and no available treatments, and you have CFS – Chronic Fatigue Syndrome, a disease often laughed at and maybe just because of the word ‘fatigue’. Call it Constant Flu Syndrome and maybe people would think of it differently. What? It’s like you have the flu, but forever? Woah.

When I had it (1984-1997), it certainly seemed like forever. Thirteen years of the flu everyday.

CFS

a good description of life with CFS by carlitos:

“What defines CFS are the symptoms, the most obvious one is fatigue. Basically you feel jet-lagged most of the time. Is like having a hangover without the fun of having gone out the previous night. There are other symptoms like nausea, joint pain, muscle pain, … There’s no known cure. Is like living in someone else body, that from now on is going to be yours. I cannot always think as clearly, and basically I have to relearn how to live life with my new body. It is a little bit like having mononucleosis that never goes. You feel very fatigued, very drained. And no matter how much you sleep, you’re still going to feel tired.”

It can go into remission, as it has done with me. It’s worrying, though, that it can return at any time.

The Return of Epstein-Barr

In 1984 I got sick. Quite sick. I lost all energy, all my joints ached, I had constant headaches and was unable to concentrate or remember anything for long. It was like the flu without a fever. And it did not go away. I was pretty much like that day after day for more than a dozen years. Just to get through the day seemed impossible almost every day. I had to learn how to drag myself through life as if I was carrying a heavy weight because I had no options. A Canadian friend with the same condition returned to Canada where she could get disability, but there was nothing like that for me,. In 1984, it had no name. In 1985, they began calling it ‘Epstein-Barr’ virus. In Britain they called in M.. for Myalgic Encephalitis. Over the years I saw several doctors and tried a variety of ineffective treatments. By 1987 or so they started calling it ‘Chronic Fatigue Syndrome’, as they came to believe that Epstein-Barr had nothing to do with it. Many doctors refused to believe that people like me were really sick. Time magazine called it ‘The Yuppie Flu’ – thanks for that one, Time. I remember reading somewhere that the only real hope for people with this illness was that sometimes, after many many years, it might go away on its own. That seemed like a bitter hope, but then, beginning around 1996, it did start going away on its own for me, and by 2000 it was pretty much gone. Now I only get the symptoms in conjunction with other illnesses, like a bad cold, or when I’m very stressed. I know that whatever it is is still in there, but it seems my body has adapted to it.

Today, in the news, I read about the return of the Epstein-Barr connection. Doctors at Stanford University have found a connection between Epstein-Barr and Human Herpes Virus 6 – apparently these viruses often occur together in chronic fatigue sufferers. A new treatment -’valganciclovir’ – has ‘cured’ 21 of the 25 patients it’s been tried on. One interesting fact is that all of the people who were cured initially got much worse for several weeks, so it seems there is not a placebo effect at work.

This could be the biggest breakthrough yet. So interesting that it comes back to the original guess – Epstein-Barr – which had been so thoroughly discounted for the past 20 years

Human Herpes Virus-6

Possibly the infectious agent that causes CFS along with Epstein-Barr:

“HHV-6A infection is believed to occur later in childhood or during adulthood and may occur without symptoms”

“Transmission of this virus is believed to occur as a result of exposure to saliva. Most primary infections are asymptomatic. Thereafter, the virus remains dormant in the body. HHV-6 reactivation in adulthood can result in illness.”

“Infection in adults is rare but infection may have different consequences, including hepatitis, mononucleosis-like illness, atypical polyclonal lympho-proliferation and post viral ‘chronic fatigue syndrome’. Like other herpesviruses, HHV-6 can enter a latent phase that may be reactivated following immunosuppression. Complications may occur, particularly when there is co-infection with another virus.”