There are many pages on CFIDS/CFS/FM/ME, but I wanted to do something different. None of them seem to really explain the true horror of this syndrome. I refer to all of the above as one disease, mainly because it truly seems to be the same illness with a different name. When you compare the symptoms, you have the same disease. First, I want to explain what all the letters stand for:

CFIDS: Chronic Fatigue Immune Dysfunction Syndrome

CFS: Chronic Fatigue Syndrome

FM: Fibromyalgia

ME: Myalgic Encephalomyopathy

This syndrome has been called "the disease of a thousand names", and therefore, I'm going to refer to it as CFIDS, one disease, throughout this website.

I want to give you the link page for CFIDS-related websites here, because the following is my story and it's quite long. On the links page you can find websites to order supplements, such as, the LEM that I mention in my story and there are plenty of sites that have local support group information and all the technical medical information that I am not including in this website because there are so many places to find it. So here's the link for the links page:

CFIDS Related Websites

Most people tend to ask, how do you get CFIDS, and what is it? So that's what I'm going to answer first.

CFIDS is not a gradule onset type of illness, it is NOT depression. The CDC classifies CFIDS under Infectious Viral Diseases. When a person contracts this disease, it appears to be a strange case of the flu at first. I'm a pretty typical CFIDS patient, so I'm going to tell you my story, not with the intent of gaining sympathy, but to help you to understand just what happens to a person when they contract this illness. About a third of CFIDS patients do not get it this severe, one third gets it like me, the other third are bedridden and wheelchair bound indefinitely. This story is pretty long, just so you're warned. Everyone seems to get the initial onset slightly differently, some experience vision or lung symptoms, but in all cases, we can give a date as to exactly when we got sick. And the end result and chronic symptoms tend to be the same for most of us. Once again, I want no sympathy or pity, I just want people to understand the true horror of this illness and to know that it is out there and it is infectious. People are still becoming ill and people need to know. So here is the story of a typical CFIDS patient:

In 1990, I was twenty-one years old, in my last year of college. I was incredibly active, belonged to a gym, workedout two and half hours a day because I really admired women's bodybuilding. I had a bunch of college friends, and was dating. I was a straight A student, often making Dean's List, and had a photographic memory, reading something twice and knowing it by heart. I even worked part-time while going to school. I had a very full, happy life. I graduated in December of 1990, and started going on job interviews. I didn't get to go on very many because of the Holidays. The first week of January 1991, I met a new man in my life. Just someone to date, nothing serious. He said he had a sore throat. I didn't really think anything of it, since he wasn't making a big deal out of it. He did complain of fatigue, but he still acted like it wasn't that big of a deal. He was a social worker, who worked the poor areas of NYC, and he told me he had contracted the sore throat from a family he had visited who seemed to have it. (That's as far as I ever got in tracking the infection down, where that family got it, I don't know. Also, it's interesting to note that this man did not become chronically ill, just me. I called him six months after I got sick just to see if it was just me. He told me he was fine and workingout at the gym. So I believe this is in the population and only some of us become chronically ill. I've always felt that it's very similar to MS in that some people get it and some don't, but it's most likely a virus that is in the general population and some are more resistant to it than others.) Anyway, of course we kissed, and within seven days I had the most unusual sore throat I've ever had. It felt like someone had scratched my throat with sandpaper and nothing I did soothed it. It was unlike any sore throat I had ever had before. I also noticed unusual localized sweating, my hands and even under my arms were continually soaked, we're talking dripping here, where I needed a towel to mop them up. Within three days time, severe insomnia set in and no matter how much sleep I did get, I never felt refreshed. That in itself was true horror. For those who haven't experienced it, it's like being under severe torture where they don't let you sleep and the feeling of sleeplessness stays with you constantly. During the next three weeks my symptoms worsened. I experienced a feeling of "brain fog" like my thoughts were wrapped in cottoncandy. My short-term memory disintegrated, if a family member told me something, I would later swear they hadn't, completely having no memory of it at all. All of my lymph glads swelled up. Low grade fever set in. My Mother said my face was gray, as though I were an embalmed corpse. I had white spots in my throat that didn't go away, and some kind of breakout on the back of my tongue. My montly cycle turned into a nightmare, I would stain all month when I had been pretty regular before this illness. Have I mentioned the nightmares? When I did get any sleep, I had dreams so vivid you could smell the ocean, or feel a table beneath your hand. This is common with sleep disorders because you aren't getting the proper dream state you need. I became allergic to everything including alcohol. My immune system seemed to be in a hyperstate where it treated everything like the enemy. I had muscle spasms all over my body, muscle twitches, like jumping muscles. Nothing stopped that. I kept thinking it would go away, but it didn't. Everything just got worse. My energy left completely to the point where I could barely get out of the bed. I am the type who doesn't ever go to a doctor unless it's really, really serious, so I waited until February to go.

When I described all of the symptoms and the onset to my doctor, he said he thought I had Chronic Fatigue Syndrome. I had never heard of it before, and didn't know what it meant. And he could give me no answers other than that he had been seeing quite alot of cases of it recently, some sort of outbreak. He had no answer as to when or if I would ever get well. At this point, I was really scared. I was so sick and just getting worse and worse and it was a kind of sickness unlike anything I had ever experienced before. I managed to make it to a bookstore and I found an excellent book on the illness, I believe the author was Wilkinson from the UK, the book is now out of print, but it explained alot of things to me. Of course, this was just before I became so ill that I lost the ability to read for any length of time. I was also horrified to find out that there were support groups for this illness, that it was something that was in the population and I had never heard of it before. Why the hell aren't people told? Why isn't this disease on the news every single day? I'm still asking that question after seven years.

Within the next few weeks, my condition deteriorated to the point that I had to be hospitalized and placed on IV antibiotics because I had encephalitis (brain swelling). I was so ill, that I almost died and had the first of many near-death experiences. The antibiotics seemed to clear my cotton wrapped brain quite a bit, but the fatigue did not leave nor any of the other symptoms. So now, I'd been sick for three whole months, longer than at any other time in my life, and was still no better. When I came home from the hospital, I was pretty much bedridden after that for many, many months. I did not have the energy to lift my hand to raise a glass of water. And the feeling of not even having the energy to turn over in bed or even to think was overwhelming. It's a strange feeling to feel like thinking is so exhausting that you actually think you might die if you don't just lay still and try not to think. Mostly, only one thought just kept surfacing "something is really, really wrong with me." You see, that's a huge part of the horror of CFIDS, you get to be aware of what's happening to you every step of the way, much like Parkenson's Disease, where they, too, are trapped inside their bodies and yet totally aware that they cannot move. My Mother helped me apply for SSI, which I was lucky enough to get the first try because I was so ill. Many, many CFIDS victims have to fight for disability for months and years, being turned down, time and time again.

Somewhere around the Winter, when I was close to having been sick for over a year, I found out about the CFIDS Buyer's Club (Now called ProHealth or CFIDS & FM Health Resource). I'm not sure if I found out through a local support group, or from another local victim of the disease. I can't remember. I do know that I was still so ill, I couldn't shop for myself or even leave the house for more than five minutes before feeling like I would die from the fatigue. I started taking a supplement called LEM and that's what saved my life. I am not including this here as an endorsement for the CBC or the product, just to tell you what saved me. LEM is a concentrated form of Shitake mushrooms that has been used for years in Japan to treat CFIDS. It is not a cure, but it helps tremendously. I believe my initial dosage was twelve pills a day, six in the morning, six at night. The first five days I took it, I got worse, all my symptoms got worse. The light hurt my eyes, sounds hurt, my skin hurt. I also sweated alot from the pills. I truly wanted to die. I continued taking it because it wasn't an allergic reaction, I did not have the feeling that it was actually harming me even though I was worse. It's hard to explain, but I had a feeling that if I stayed on it, it would help. And on the fifth day, it did. The morning of the fifth day of the pills, the light suddenly didn't hurt my eyes anymore for the first time in over a year! I could actually look out the window and not feel like there were knives of light jabbing my eyes and going into my brain. The LEM helped to regulate my sleeping. I could actually get four, then in time six hours of sleep a night, where before I would snap awake after fifteen minutes or an hour. The other symptoms were slightly better, very slightly.

I remained incredibly ill and bedridden/housebound for the next two years even with the LEM, but slowly, year by year and almost imperceptibly, I was a tiny bit better. However, I do want to add that I truly believe I would be dead today if it hadn't been for the LEM. I give full credit for my semi-recovery to the LEM and still take it after six years. I also took Royal Bee Jelly from Premier One, which does clear your thinking if nothing else. I took Valarian, tons of Valarian, it helped to calm me, but never really did much for insomnia. I now take a combination of Ginkgo, LEM, ATP (made from apples, it stops the muscle pain and twitching), and a multi-vitamin. I've also gone the doctor to doctor route and had numberous blood tests.

My condition stablized after about five years and now remains at it's constant chronic state. After seven years of illness, I am half-housebound. I can only leave the house maybe eight days, sometimes ten, out of a month and that's not everyday, I must rest a day or two in between. Many times I spend a full ten days unable to leave the house, but I try and get out at least one day a week if possible. Some of my concentration has returned. I can read a book again if I try, but it still feels like there's effort there. My short-term memory is still messed up. It's better, but still not right. I can still forget things, but if I'm reminded, it usually comes back. I just have to be careful and writing things down helps. The muscle twitching still happens, even as I'm writing this, but it's much, much less than what it was. Alot less noticable to me now, but still there. My lymph glands really aren't swollen now, nor is my spleen. They do swell up if I'm under any kind of stress, but if I take it easy, it really isn't bad anymore. I only get the white spots in my throat now, if I push too hard and I haven't had the tongue breakout in a very long time. My monthly cycle has never really regulated, but it's better than it was. And the awful, unrelenting fatigue has gotten better. I do get some relief with sleep now. I never wake up refreshed, but it's not the torture that it once was. Well, unless you count the vivid dreams. I have chronic fibromyalgia muscle pain now. It never leaves and I usually end up taking NSAIDS for it, which only ruins my stomach, but I cannot function at all without these pain pills. When I say, Fibromyalgia pain I'm referring to certain tender spots in my back as well as all my joints. I have arthritis that seems to have settled in different places. I tire easily, I don't have energy or stamina and still cannot exercise on a regular basis after all these years. Everytime I try, I make myself worse. My immune system has calmed down alot now, and I recently discovered that I'm no longer allergic to alcohol and can have a drink if I want one. I get sick easily now. I seem to catch every single thing that's going around and it always lingers on me. I can drive again, just locally, but I can go shopping at least two times a month. I can even go to a restaurant or a movie if I want to, but I don't really get to go that often. I cannot keep my house clean on a regular basis, so it's never as clean as I would like. I am too stubborn to get someone in to help me. I'd rather do alittle at a time when I can. I can't even take a shower everyday anymore, just every other day because I don't have the energy. One of the symptoms I forgot to mention above is severe lightheadedness. I've suffered from that alot since the illness. It's still one of my worst symptoms and I usually get it in the mornings and have to go back to sleep. It's severe enough that I've almost passed out in the kitchen and shower several times. I'm better in the afternoons if I've rested. I also forgot to mention the low body temperature and cold hands and feet. I still have that. If I have to say just how much better I am after seven years of illness, I'd say I am 65 percent better than I was, but nowhere near a hundred. I remain completely disabled and unable to work. Any stress in my life, and my immune system goes crazy, I end up too ill to leave the house for days, sometimes weeks at a time. I am still on disability after seven years and am afraid I may be on it for the rest of my life if a cure is not found.

I need to mention all the things a person with CFIDS loses. There is so much more than all the things I just mentioned above. First of all, I lost all my friends when I became ill. No one really wants to wait around expecting you to get well and when you don't, they don't know what to say, so one by one they leave. I lost family relationships, too. Alot of them didn't believe I was ill and didn't want to deal with a chronically ill relative. I lost the ability to work and have had to rely on Social Security as my sole source of income, making me well below the national poverty level. I lost my short-term memory, my well-earned figure, alot of self-esteen and self-confidence is gone as well. I've lost the ability to have a child, I am sterile from this illness. I'm starting to feel the loss of that now. Especially when Halloween is about to roll around and I don't have a little boy or girl to help make a costume for or decorate the house. I've always wanted a dog, but I don't have the energy to walk one, so I have cats. I've lost seven years of my life and will probably lose more since my condition is chronic. I've had to deal with alot of disbelief. Too many people do not know about CFIDS and keep asking, "Well, isn't it just all in your head?" and "Gee, you don't look sick." That last is the great irony, you see, none of us actually look as ill as we are. We might look kind of pale and a bit overweight due to the inability to exercise regularly. But you can't really tell how we feel. I no longer date at this point because I've tried a few times in last few years only to be either treated as a leper because the guy was afraid of getting CFIDS, or to be treated like it was all in my head. Too much lack of understanding and no sympathy at all. As far as the question of depression goes, after having read my story, would you be jumping for joy? Wouldn't you be depressed after you've lost everything? I failed to mention that for the first two years of my illness, I was suicidal. (Suicide is the leading cause of CFIDS death, next to liver damage from too many pain killers that we can't function without.) Who wouldn't be? When you are that ill and you've lost everything, what's left? I never actually attempted it, but I thought about it quite alot. I think I'm still here because I'm too stubborn to go yet :) I've always been an optimist and I am very religious. If anything this disease has only made my faith stronger. I had several near-death experiences with CFIDS that I haven't mentioned here. My faith is strong and I have no fear of death now. I'm more afraid of growing old with CFIDS. I don't know how the illness will progress, if I'll deteriorate, get better, or what. So I live with uncertainty. What has CFIDS given me? I have become a living ghost. I am the living dead. Everything I've ever had is gone, but my life, some self-respect (because I know it's not my fault), and small freedoms like watching tv or petting my cats. I can do alittle creative stuff like my websites or design some plastic canvas boxes. But all in all, I am truly a CFIDS Ghost in a world that has no time or sympathy for one who cannot keep up.

By the way, I do not dwell on this illness. It's taken me alot of time to actually get angry enough to write this all down and create this website, and if you visit my other sites, you will see that I must be dealing with it well to have created them. I'm really angry that after all these years the public still is not well informed about this disease. CFIDS is worse than AIDS or Cancer because you don't get the pleasure of dying, you get to watch yourself lose everything and still you must go on. I've also finally gotten angry at the disease itself. That's kind of hard for me because I tend to look at it as a parasite that lives with me and I am it's puppet. I do as it says, when it says, and if I deviate from it's evil plan, I suffer. For many years, I just felt like its victim. I know now that I am a survivor and the only way I can fight back against the unseen enemy is to let people know what this disease is, what it does, and that it is out there.

On a final note, I moved out of state about four years ago and haven't met alot of my neighbors because I'm usually stuck sick in my house while they're at work. Last week, the woman who lives across the street came running over to my mother outside our house and told her that she was worried about her bedridden daugher who has CFIDS. She didn't know about me, she was talking about HER daugher, a twenty year old girl who lives right across the street from me and is bedridden with CFIDS, and I have lived here for FOUR years and didn't know. So now I've got a friend across the street with the same awful disease. She's only been sick over a year, meaning the disease is still out there, people are still becoming infected. People need to know.

CFIDS Related Websites

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email: carrigon@suscom.net

url: https://www.angelfire.com/games4/carrigon/home/cfids.htm