CFS Novel

I recently read Chronic Fatigue Syndrome: A Novel by Caroline T. Anderson and have very mixed feelings about it. The book was self published and, as a writer, I can see why that was necessary. Of course the target audience is small, but the book also needs some good editing.

It starts slowly and, for some unknown reason, by the end of the first page we're in the point of view of horses. There's way too much information given in dialogue and long quotations from research done by the main character (who is not a horse.) Since a lot of people don't know much about Chronic Fatigue Syndrome it was necessary to convey some of that information, but only the basics were necessary for the plot and the rest could have been listed at the end of the book.

The only reason I kept reading was my personal interest in the disease, but I'm glad I did. About a third of the way through, the book picks up and the rest is an exciting adventure that kept me turning the pages.

This novel is a good way of letting the general public know about Chronic Fatigue Syndrome and, while fictionalized, many people think the sort of machinations it portrays that have kept the disease from being recognized and treated are real.

In this work of fiction anti-viral drugs can cure the disease and I can tell from personal experience that they don't work for everyone. *I was on one for months and all it did was cause permanent neurological damage. (If anti-viral meds could kill retroviruses they would probably cure AIDS, too.) But that kind of medication may have helped the author, who writes under a pseudonym.

However this novel is a good way to make people aware of problems most know nothing about and, once the reader gets past the informative first chapters it's an enjoyable read.

*For information about how I recovered from that disease please read my earlier posts on that topic here: http://tinyurl.com/3dkb6tv

Tying it Up

Lately I've been posting a lot about my personal experiences with special needs. I didn't mention Chronic Fatigue Syndrome because I already blogged a lot about it here:

http://tinyurl.com/yd8v2qm

I also worked with lots of children who had special needs in various teaching positions. However I won't get into that here because anyone reading my posts now knows enough about me.

CFS Heads Up

Here's something I found out the hard way; people with chronic Epstein-Barr virus, like many who have Chronic Fatigue Syndrome, are much more likely than other people are to have allergic reactions to amoxicillin and related drugs.

Yes, I know the new studies show the disease may be caused by a retrovirus, but that doesn't change the fact that most people with CFIDS have or had one of the viruses known to cross the blood-brain barrier, and Epstein-Barr is one of them.

XMRV?

People with Chronic Fatigue Syndrome (CFS,) also known as CFIDS or ME, are excited about studies showing a possible connection between that disease and a newly discovered retrovirus called XMRV. Some of the studies have shown a high correlation between people who have that disease and XMRV, but others haven't been as conclusive and all the results aren't in yet.

The good news is that more scientists are taking the disease seriously instead of claiming that it's 'just' psychosomatic. The bad news is that even if a definite connection is found, it will take a lot more time to discover a cure.

Many years ago I read a study showing that broken bones from skiing accidents healed faster than identical breaks caused by car accidents because the healing was influenced by the attitudes of the patients. In other words, broken bones are psychosomatic. I wouldn't be surprised if someday scientists establish a link between all illnesses and people's thoughts and emotions. However that wouldn't alter the fact that diseases are real and caused by viruses, bacteria, etc.

It's difficult enough for people to live with debilitating illnesses without being told the conditions are "all in your head" and they aren't really sick at all.

Even if researchers aren't able to find a cure for CFS it will be a great help to people who have it if the XMRV virus is definitely proven to be a cause.

My CFS Journey Part 6

Years after what I mentioned in my last post a doctor wanted to give me Hormone Replacement Therapy because I was at risk for osteoporosis but all those meds had inactive ingredients I was allergic to. Finally he discovered an injectable form of estrogen and one brand of progesterone pills I could use. I got the injection, but when I tried to fill the prescription for the pills the pharmacist said they had been discontinued that same week.

I had horrendous side effects for nearly eight months. Besides having to go through menopause all over again with much more severe symptoms I was constantly getting cramps in my hands, feet, and legs that kept waking me up at night. It was a horrible experience.

But at the end of the eight months my CFS symptoms had disappeared!

That was nine years ago and since then my energy level has been perfectly normal, although I still have all the allergies and have gotten a few more. I haven't been tested again for mono so I don't know if that virus is completely gone from my system or not.

Last year my allergist had me try eating the foods high in sulphur and within two weeks the CFS kind of fatigue had returned mildly, so apparently I'm not completely over the disease. Obviously I'll never eat those foods again. But otherwise, except for the allergies, I've been fine.

No doctor can figure out exactly why and I'd like this to make sense, but I'm extremely grateful for the best health I've had in decades.

It's not likely that doctors will give other women estrogen shots without progesterone and obviously men can't be given those hormones so, unfortunately, what helped me so dramatically probably won't help many other people. But perhaps hearing about it could help researchers figure out what causes Chronic Fatigue Syndrome and what can be done to help others who have it. I'm sharing my story in hopes it will get to someone who can use it to make a difference.

My CFS Journey, Part 5

After 12 years I finally got out of the HMO and found a doctor who actually believed I was sick. He gave me an anti-viral drug, and it didn't seem to do anything but give me terrible side effects. Perhaps my symptoms improved slightly, but not for long. Two years later another doctor insisted on giving me the same drug again and that time it did permanent neurological damage, giving me a learning disability, but still didn't help with the CFS. At least those doctors didn't think I was crazy, so that was an improvement. And their tests showed I still (or again?) had mononucleosis.

Because I'd had multiple cortisone injections in my neck near the time I first became sick I thought there might be a hormone-related problem, but tests showed my cortisol levels were normal. I hoped when I reached menopause my symptoms would improve, but that made no difference at all.

But in my next post I'll share what did make a tremendous difference. Unfortunately it's not an option for many people.

My CFS Journey Part 3

Although I had CFS, my husband and I were raising foster kids with special needs. Two of them were on a special diet so I kept records of everything we ate. Keeping records helped me discover that, besides the new allergies I kept developing, I had gotten a sensitivity to sulphur. I eliminated everything high in that chemical from my die including all vegetables in the cruciform (cabbage,) lily (onion,) and legume (bean) families, flour containing sulfate, corn, oranges, and tomatoes. Many meds contain sulfite or sulfate and so do some toothpastes so I also had to avoid those.

At first it was difficult to eat while doing without all those foods, but before long I realized my average energy level had gone up to about 70% of normal!

With more energy it wasn't too difficult to cook from scratch once a week and reheat foods the rest of the time. Because the foods that were true allergies and not sensitivities caused mini-muscle spasms and painfully pulled my damaged vertebra out of line I was, and still am, very careful to never make exceptions to my diet. I ALWAYS read ingredient lists on labels, even of foods I've been able to have before, because those often change.

I've told other people with CFS about the great improvement avoiding sulphur caused in my symptoms, but none of them have ever been willing to try it. The diet isn't easy, especially in the beginning, and it's typical of PWCs (People With CFS) to have unusual reactions to things and those vary greatly from one person to another. So maybe that diet won't help everyone.

But it seems to me if there's even a chance that it might make some people's health improve then at least a few of the many with that disease would be willing to make the effort. A month should be long enough for it to show a difference if it's going to work. What can it hurt to try?

If any other PWCs do try a sulphur-free diet I'd love to hear if it helps them.

My CFS Journey, Part 2

Chronic Fatigue Syndrome is not a matter of being tired in an ordinary way. It's sort of like gravity has been turned way up and it takes immense effort to move at all. Someone else described it as feeling like the air has turned to cement and you must push your way through it. A person I knew who had recovered from Guillian Barre syndrome told me she had felt the same way while recovering from that disease. The most similar feeling most people would experience might be if they go back to work before fully recovering from a bad case of flu, but that fatigue would be much milder than what people with CFS experience all the time.

I also had tender, swollen lymph nodes, aching muscles, and kept developing new allergies, mostly to foods.

After the first two bouts of mononucleosis my energy level averaged about 20% of normal. I discovered if I rested before getting to the tipping point of total exhaustion I could accomplish a lot more. For example if I could normally be up for about an hour before completely collapsing, I'd set the timer for 45 minutes and rest, doing absolutely nothing, for 15 minutes out of every hour. If I kept going as long as possible I'd be in bed for most of the day, but if I rested every hour before getting completely worn out I could be up a lot more total time during a day.

As I improved, the rest times gradually went from once every hour to once in several hours. I learned to tell when I was getting close to my limit and stop and rest before reaching it.

After a while I was usually able to work part time and would only be bed-ridden for a few days or maybe a week if I had pushed myself too hard, and that didn't happen often. That was back in the recession of the 1980s and my husband was out of work more often than not, so we were broke and even earning a little mattered a lot.

My CFS Journey, Part 1

So you know I'm experienced with special needs I've decided to post some information about my own experiences. Here's the first part:

I was a severely asthmatic kid and my doctor gave me huge amounts of cortisone and related meds before they knew how dangerous they could be. I even had Cushing's Syndrome for a while. When I was 14 I became a Christian and forgave the kids who had tormented me in school and my asthma went away

I was in my late 20s when I got a whiplash injury and my HMO sent me to a "physical therapist" who was really an incompetent chiropractor. He ruined every joint in my spine and I still have some pain from that over 40 years later. My doctor insisted on giving me lots of cortisone injections in my neck. When I told him my pediatrician had said I should never have any more cortisone for the rest of my life the doctor told me it would stay in my spinal column and never absorb into my system. Obviously he lied, but I was naive and believed him.

At about the same time I got mononucleosis. Two of my co-workers also got it near the same time. I was working in the dorms at California School for the Deaf and one of the kids was from Incline Village, but he was healthy so I don't know if there was a connection or not.

After a few months I tested free of the mono and was told I was well. I still had all the symptoms, although my energy level had improved somewhat. I managed to drag myself through work days, but could do nothing else but rest.

After about two years the symptoms got a lot worse again and I had to quit my job because I was too sick to work at all. After several visits I finally talked my doctor into testing me. (He said he'd order the test just to shut me up.) The results showed I did have mono. That doctor told me it's impossible to get mononucleosis more than once so all the earlier tests must just have been laboratory errors. After that all the doctors in the HMO refused to test me again, telling me I wasn't sick and that my problems were just psychosomatic.

Anyone who has CFS or a similar illness will probably say that sounds familiar.

Chronic Fatigue Syndrome

     I suffered from Chronic Fatigue Syndrome for nearly 30 years, and, yes, it is a real illness. If people with that condition seem a bit defensive it's because for many years we were told it was "all in our heads" or psychosomatic. Thank goodness the medical community now recognizes it, though there's no known cure.

     However I have almost no symptoms now. Here's some information I recently shared on a support group for PWCs (People With CFS.)

     The things that helped me are strange, but maybe reading about them will help somebody else, or at least help us understand the disease.

     Even while I was sick my energy level improved from about 30% of normal to around 70% when I stopped eating foods high in sulphur, but that's a sensitivity, not an allergy. One of my symptoms was that I kept developing more and more allergies, especially to foods. But avoiding them isn't what made the big difference. 

     When I reached menopause my doctor said I was at high risk for osteoporosis, partly because of all the cortisone that had been given me.  But all the HRT pills contained cornstarch and one of my worst food allergies is to corn, so the doctor gave me an estrogen injection instead. When I went to fill the Rx for the only progesterone I could have the company had just stopped manufacturing it, so I couldn't take any progesterone with the estrogen. 

     I had horrendous side effects from that injection for eight months, but at the end of that time my CFS symptoms were mostly gone and the asthma I hadn't had since reaching puberty had returned. I'm not sure which happened first, so it could be that the asthma meds, which are cortisone-related, helped with the CFS symptoms, or maybe the changes in my other hormone levels caused the asthma to return. But my CFS couldn't have been caused by an endocrine imbalance in the first place because all my hormone levels had tested as normal. And some PWCs have asthma and use those meds without their CFS being helped by them.

I have read that sulphur is part of the chemical makeup of many hormones, so there may be some sort of connection there. 

No doctor is likely to give anyone else an estrogen injection without also giving them prednisone because it's dangerous. Since men also get CFS, an estrogen imbalance obviously can't be the cause, but some sort of hormonal confusion that doesn't show on the usual tests might be. 

I tried the sulphur-free diet because a friend of mine with lupus had been put on one by her doctor because it was known to improve lupus symptoms. When my friend noticed that some of my true allergies (oranges and tomatoes) were on that list she gave me a copy and I tried following the diet. As I told you, it helped a lot within a few weeks. Lupus is an auto-immune disease so there could be some sort of correlation with CFS. 

A survey of an internet support group for PWCs showed nearly all of them had a virus known to cross the blood-brain barrier and another major illness or injury within a few years. Apparently having both the virus and something else attack so close together set off something in people's bodies or brains (somebody suggested it might be the hypothalamus) that has never been able to shut down again.

But, in my case, the estrogen injection overcame it.

Although I feel fine now except for the multiple allergies, if I eat anything high in sulfur my CFS symptoms return mildly. I won't eat those foods long enough to find out if continuing to eat them would make me worse, for obvious reasons.

I wish some scientist would use my experiences to help figure out a cure that would work for everyone, or at least be able to explain what causes the disease.

     

Why Me?

Since this blog will be about special needs it might be helpful for readers to know why I'm interested in that topic.

As a child I suffered from severe chronic asthma and was hospitalized and put on oxygen several times. I was also sent to a convalescent home for a while, where I met lots of kids with various disabilities. In high school I spent two summers volunteering at a day camp program run by the Marin Society for Crippled Children and Adults. After graduating from college I learned American Sign Language, worked in the Dormitories at California School for the Deaf for nine years, and married the interpreter who had taught me ASL. We raised three Deaf foster sons who had assorted special needs in addition to our birth daughter after I had developed Chronic Fatigue Syndrome (yes, it is a real disease) and chronic neck and back pain due to car accidents. I also taught in many Special Education classes as a substitute teacher and was a Sign Language interpreter in several churches.