My CFS Journey Part 6

About six 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 4

Here's some information that might possibly help other PWCs.

I got involved in an internet support group for pwcs and at one point we were discussing the wide assortment of symptoms. I did an informal survey and about 45 of the 250 or so active members participated. I had been an English major and knew nothing about how to do scientifically accurate surveys. There was no control group and the information was just narrative replies to the questions I had asked.

However the informal survey showed a clear pattern and a member who did know how to work with statistics said the results were significant.

Nearly all the people who participated had either had what they called "drop dead flu" and not seen a doctor for it or had been diagnosed with one of several viruses including mono (Epstein Barr,) herpes, and Coxackie. A member who had been in the medical field said all those viruses were known to cross the blood-brain barrier.

Perhaps they have an effect on the neurological system, but lots of people get them and recover completely in a reasonable amount of time.

But the interesting result of the survey was that most of us had also had a severe accident, major surgery, or another serious illness within a few years of getting CFS. Apparently the combination of attacks on our systems had something to do with why we didn't just get over the viruses like most people do.

I've wished for years that someone would do a genuine scientific study taking that information into account. If there are any interested scientists out there, please contact me.

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 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.

Extra Post

I usually only post things on the blog on Wednesdays and Saturdays, but couldn't wait to share something I just heard about.

This morning at church a friend told me about a new contraption he just bought and I think other people might want to know about it. It's called a SARA and can scan and read things aloud for people who are blind or visually impaired. My friend is delighted that he'll be able to read ordinary books and even the local newspaper again.

I looked at the website of the company that makes the devices and discovered it can even convert things to Braille for people who are both deaf and blind. Here's the URL: http://www.freedomscientific.com/products/lv/sara-product-page.asp.

The one problem with the thing is the expense. It costs nearly $3,000! That means most people who would benefit from using it probably won't be able to afford one. But maybe the price will come down and as the economy improves more people will be able to benefit from the invention. Perhaps eventually schools and businesses will be able to buy them for employees and public libraries will make them available for people in their communities.

The SARA sounds like it will be extremely helpful to lots of people and I hope those who would benefit from it will have that option soon.

New Research

Many people with chronic illness are delighted to see news stories about this newly-released scientific study: http://www.wpinstitute.org/xmrv/index.html. It's about a retrovirus called XMRV that has been discovered in most of the subjects tested who have Chronic Fatigue Syndrome, Fibromyalgia, and similar conditions. Of course it will take time to see if anti-viral medications can cure those diseases, but at last there is hope.

Since the same virus has also been found in people with certain kinds of cancer, it's possible that XMRV is not the cause of the diseases but simply takes advantage of damaged immune systems. But even that is helpful for people with CFS/ME and FM since it proves those illnesses are real and not just psychosomatic. It's hard enough to live with debilitating chronic illness without being told "It's all in your head" and having to struggle to find a medical practitioner who believes you're really sick.

Danger of Eating

Many people don't realize they have intolerances, allergies, or sensitivities to foods. Since those things can't be determined by allergy skin tests (even the true allergies often don't show on those) the only way to tell if someone has one of them is to eliminate the problem foods for a while, then add them back and see what happens. Unfortunately, that's easier said than done and if the symptoms are mild it may not seem worth the trouble.

While something like avoiding allergic acne may not motivate people to stick to a special diet, other conditions, like lactose intolerance and celiac disease, can cause extreme problems and it's certainly worth sticking to a die to get relief. For some conditions, such as diabetes, not following a special diet can even be fatal.

When people first learn they must avoid certain foods that often sounds extremely difficult, but over time special diets become much easier to live with. Reading ingredient lists on labels becomes a habit and substitute foods that once seemed strange become normal.

Once people become used to their diets the biggest problem is likely to be other people insistently offering forbidden foods. If someone refuses a food it may seem a little rude, but may be less so than if they were to give a graphic description of what would happen if they were to eat it. And it's not nearly as impolite as trying to force a person to eat something they shouldn't.