CFS Success Story - How I Got Better

     I was given this information by the only doctor who helped me - my allergist. I'd been going to him for 20 years for my allergies. Not realizing he was also an immunologist, I went to him last for help with my CFS. He was also the only doctor I went to who truly "believed in CFS" and diagnosed me correctly.
     He told me the key is to take these supplements exactly as described and in the doses stated. Similar to a recipe, if you change any ingredients your results may differ. This is the recipe I was given:

CO-Q 10 (200-300 mg per day in two or three equal doses)

    This vitamin B-like compound is essential to the function of every cell in your body. Deficiencies of CO-Q 10 have been related to limitation of stamina, poor resistance to infections, and poor function of the heart. Your body will manufacture it's own CO-Q 10 only if you are exercising regularly. Obviously a PWC (person with CFS) cannot exercise regularly so this supplement should be taken until you are feeling well again, well enough to get regular exercise.
EFAs  (four EPA capsules & four plant oil capsules per day)

     There are two classes of EFAs (essential fatty acids). The word "essential" should give you a clue as to how much your body needs this nutrient. The two classes are EPA (derived from fish oils) & GLA (derived from plant oils).  You should start feeling more energetic within a week, but don't stop. Take EFAs for at least four months or until you're feeling much better.
     EPA = Fish Oil: any reputable brand containing 1,000 mg of EPA.
     GLA = Plant Oil: borage oil, black currant seed oil, evening primrose oil.
                There are many plant oil sources. Try to use more than one kind, mix it up.
MAGNESIUM   (two to four "Slo-Mag" tablets per day)

      Proper doses of magnesium have been known to help stop or reduce muscle soreness, weakness, and heart "skips". Take a product called "Slo-Mag". It is the best over-the-counter source of magnesium chloride. DO NOT take "cal-mag". It DOES NOT WORK. Do not take chelated magnesium. Slo-mag is brand name product and is very difficult to find. I haven't been able to find it at any of the "discount vitamin" websites, but, I happen to know CVS carries it. You can shop CVS online or find out where the nearest CVS is to you via their website. You can find links to CVS in my Great Links - Vitamins & Nutrition page.

VITAMIN B COMPLEX   (50 mg per day)

       Doctors have long known the benefits of vitamin B complex in fighting infections. It may also give you more energy.
MULTI-VITAMINS (one per day at bed time)

      Centrum Silver is recommended.

IMPORTANT NOTE:
Don't skip doses - you'll only be cheating yourself.
Buy brands you know & trust.
PLEASE READ THE DISCLAIMER

If you try this recipe, please give it at least four months.
I'd like very much to know if this works for you too.
Please contact me and let me know how you're doing.

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     Living a healthy lifestyle is something we all should do but it's my belief that it's even more important to PWCs. By a combination of trial and error, extensive reading & researching, and listening to what doctors and nutritionists had to say, I made myself a list of do's and don'ts for healthy living with CFS. This is what works for me.

Drink Plenty Of Water (at least six to eight 8oz. glasses per day)

      Space them out, don't down them all at once. If you're overweight add one more 8oz. glass for every 25 pounds you are overweight. Water means water, not clear liquids, but pure water. People with weakened immune systems should take extra precautions. You may want to invest in a water filtration system for your faucet or under your sink. You may even want to get a water cooler for your home. It's a smart idea if you drink a lot of water. And if you have CFS, you should be drinking a lot of purified water!!

Reduce Alcohol Consumption

      Many PWCs report intolerance to alcohol. I found that my reaction to alcohol changed when I became severely ill with CFS and I was unable to drink as much as I use to. I'd get drunk on one glass of wine and hangovers lasted for days. When I was in recovery from CFS these "hangovers" often brought on a relapse. To avoid this I drink only on special occasions (holidays, birthdays, etc.) or not at all. If you must drink, limit your alcohol consumption to one or two drinks per occasion. These "occasions" should be few and far between.
Stay Away From All Forms Of Caffeine!!

    Caffeine is a drug. Caffeine is in many drinks, foods, and medications. Read labels! You may be getting caffeine and not know it. Did you know some sodas besides colas contain caffeine? Did you know many over-the-counter and prescription medicines contain caffeine? Caffeine can make you feel stressed and keep you awake. Again, read labels.
Don't Smoke!!

     Need I say anything more about this subject?
Eat Healthy Foods

     Eat well balanced meals. Stay away from excess anything - sugars (carbohydrates), salt, fat. Try to eat little or no processed foods. Processed foods contain chemicals and preservatives. PWCs seem to have less tolerance to chemicals & preservatives than the average person. Processed foods also usually have less nutritional value than unrefined foods. Stay away from "fake" sugars like Nutrasweet.
Keep Your Home Clean & Chemical Free

     Try to make sure your home is dust free. Household dust contains many irritants to which PWCs may have an intolerance. I placed air purifiers in each room of my home. Within a few hours I noticed a marked difference in how I felt. Over the years I've tried many different types of air purifier and have come to the conclusion that the Ionic Breeze is the best. Though this purifier is a bit expensive, there are never any filters to replace so in the long run it's worth it. And it's quiet - a must for anyone who has trouble sleeping. You can get the Ionic Breeze at The Sharper Image.
     Try to eliminate or reduce the use of perfumed air fresheners and chemicals for cleaning. PWCs tend to have a low tolerance to chemicals. The general rule is if the product you're using has more than two or three ingredients or if you can't pronounce the ingredients, don't use it. You may be having a bad reaction to it and not even realize it. You can also follow the very simple "if it bothers you don't use it method". If you find any chemical or perfume gives you a headache or makes you dizzy just don't use it. For me I found I could only tolerate Windex and certain pine cleaners (Real Pine is my personal favorite - not only does it not bother my head, but it cleans well as has one of the highest concentrations of pine oil on the market). Try using more "natural" cleaners. Everyone is different. You may be able to tolerate something someone else can't. But keep in mind the cleaner you are using may be hurting you and you don't even know it. Got frequent headaches, feel dizzy? Pay close attention to your environment and your cleaning habits and how they relate to when you feel bad. Keep your home well ventilated when using any cleaning solution.
     Your lack of energy will probably prevent you from cleaning as much as you should. If you can't get someone to clean for you, you may want to consider temporarily removing any items from your home that collect dust or are hard to clean.

Pollutants & Chemicals Outside The Home

     When outside your home try to stay away from any environment where the air may be polluted or contain chemicals (cigarette smoke, dust, car exhaust, heavy perfumes, cleaning solutions, etc.). If a co-worker wears a scent that bothers you, politely explain that you have "severe allergies" and ask that they change to a softer scent. Make it clear that it is a medical issue for you, not that you just don't like the way they smell.
A Word About Exercise

     Exercise is very healthy, for the average person. Keep in mind many CFS authorities believe exercise is dangerous for PWCs while others believe it's helpful, in moderation. For me I found exercise of any kind hindered my recovery during the worst stages of the disease. I added small amounts of exercise to my daily routine only after I began to feel stronger. I had to experiment with what my body could handle. Very often I over did it and set myself back months in terms of recovery and how I felt. You must be very careful with exercise and CFS. The adage "No pain no gain" does NOT apply for the PWC!!

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     There is no magical solution, no formula, no recipe. In the game of Rest for the PWC it's every man and woman for themselves...

Do What Ever You Need To Do In Order To Sleep - But Try Not To Use Drugs

    It's suspected that certain chemicals and drugs can exacerbate CFS. Try not to use any drugs to get to sleep.
     Unfortunately most conventional tips on how to get a good night's sleep don't work for PWCs. For me reducing stress, blocking outside noises & lights, and doing the things that made me happy helped. So think happy thoughts, play soft music, pet your cat, read a book (if you still can), wear ear plugs & eye shades, hang wind chimes in the window, drink warm milk (yuck!). Do what you must to get the rest you need, but please try to stay away from drugs of any kind.
If You're Able To Sleep Do It - Any time, Anywhere, For As Long As You Like

    Don't worry about what people think of you. Those who don't understand CFS and don't believe you're sick are going to think you're lazy anyway. So the heck with 'em! If you can sleep do it any time, anywhere.
Stay Away From All Forms Of Caffeine!!

Read labels! Caffeine is in many drinks, foods, and medications. You may be getting caffeine and not know it. Did you know some sodas besides colas contain caffeine? Did you know many over-the-counter and prescription medicines contain caffeine? I said it once and I'll say it again and again - caffeine can make you feel stressed and keep you awake.
Quit Your Job (if you can) And Apply For Social Security Disability Benefits

     Not working will allow you to rest and get well. But don't take my word for it - discuss the possibility of quitting your job with someone you know and trust, perhaps a friend, family member, or clergy before making your decision. Quitting your job is a drastic measure. It worked out for me but it may not for everyone.
     CFS is one of the few "conditions" accepted by Social Security for full disability. But don't try this on your own. There are plenty of lawyers that specialize in SSD and there are usually no out-of-pocket expenses. They're paid with a relatively small percentage of your settlement. If you do this on your own not only will it cause you added stress but you will most likely spend years trying to convince the government you're sick. Leave it to the professionals.
     In order to qualify for and receive SSD you must be seeing a doctor regularly who would be willing to "testify" in writing about your condition. Be sure to contact a lawyer right away and have them explain your rights before you make a decision.

Reduce Stress

     If you're having trouble sleeping or getting enough rest I'd be very surprised if it didn't have something to do with worry, anxiety and stress. It's easy to say "get plenty of rest" but as a recovering  PWC I know first hand it's not easy to do. How do you rest and how do you sleep when your heart is racing, everything hurts, your head feels like it's going to implode, you're worried about your health, your finances, your relationships & your future? How do you put your mind at ease so you can get the rest you need so badly? The following section explains how I greatly reduced the stress in my life. I hope it helps you.

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     Let me warn you now, some of what you're about to read may seem drastic, some of it may even seem stupid or silly to you. That's OK, because you don't have to do any of it. I'm just letting you know what worked, and still works, for me.

Get rid of everything in your life that causes you undo hardship

    That includes people, places, things, situations. It's been long suspected among PWCs and researchers that physical and emotional stress plays a huge roll in prolonging and/or worsening CFS. In fact if you've done enough reading on the subject you'll find many also believe physical and emotional stress may be a factor in what actually causes CFS. So if there's something or someone causing you physical or emotional stress fix it or get it out of your life. You've got enough to worry about just trying to get well. If it takes too long or too much energy to fix, say bye-bye.
     I realize this sounds harsh. It may even sound unrealistic and nearly impossible to do. But if you really think about it there are a lot of stressful situations in your life that you have control over. Much more control than you probably give yourself credit for. For example: Someone you spend time with gets on your nerves or makes you unhappy - don't spend time with them. The drip drip drip of a leaky faucet keeping you awake at night - ask someone to fix it for you. All the bad things in the world upset you - don't watch the news and avoid all situations you feel may upset you. It's really very simple if you think about it. The only strength you need is the strength it takes to make a decision and stick to it. Think about your health, be selfish for a while. Granted you probably won't be able to get rid of everything that brings you stress, but if you want to feel better shouldn't you at least try?
Surround Yourself With The Sweet Things In Life

    That doesn't have to mean caviar and a yacht. Some of the sweetest things in life can be the least expensive and easy to obtain. Spend time with people who care about you and show it. Does the laughter of a child make you feel good? Spend your days in a playground. Enjoy candles? Light 'em up! Listen to your favorite music. What's your favorite TV show? What ever it is watch it. Record your favorite episode and watch it over & over. Hey, if it reduces stress and makes you feel good why not? Sleep with a teddy bear! Yes, I don't care if you're a man or woman, 25 or 45 yrs old. If it might help make you well do it! And don't forget the benefits of laughter - Visit my Great Links/Happy Links page for ways to make you smile, laugh, and generally feel good and reduce stress. I've included some great doctor and lawyer jokes!

Stay Away From All Forms Of Caffeine

     Are you sick of me saying this yet? I hope not because I'll say it one more time, that's how important I feel it is - Stay away from all forms of caffeine. Caffeine is a chemical. Caffeine is a drug. Caffeine makes your heart and metabolism work faster than it naturally would. You don't need the added stress to your body. You should also know this: If you're a regular caffeine drinker you'll probably swear that you feel better, even less stressed, when you have that first cup of coffee or can of cola. That's because you're actually addicted to caffeine and you're giving your body the fix it craves. Like any other addictive drug, just because your body craves it and feels better after the fix that doesn't mean it's good for you. I hope I've made my point.
Quit Your Job (if you can) And Apply For Social Security Disability Benefits

     The added stress that comes from working any job when you have CFS is sometimes enough to put you over the edge. PWCs need to reduce stress and get plenty of rest. Not working may help you to reduce stress and get well. But don't take my word for it - discuss the possibility of quitting your job with someone you know and trust, perhaps a friend, family member, or clergy before making your decision. Quitting your job is a drastic measure. It worked out for me but it may not for everyone.
     CFS is one of the few "conditions" accepted by Social Security for full disability. But don't try this on your own. There are plenty of lawyers that specialize in SSD and there are usually no out-of-pocket expenses. They're paid with a relatively small percentage of your settlement. If you do this on your own not only will it cause you added stress but you will most likely spend years trying to convince the government you're sick. Leave it to the professionals. Not working will also allow you to rest and get well.
     In order to qualify for and receive SSD you must be seeing a doctor regularly who would be willing to "testify" in writing about your condition. Be sure to contact a lawyer right away and have them explain your rights before you make a decision.

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CFS stands for Chronic Fatigue Syndrome or Chronic Fatigue and Immune Dysfunction Syndrome. It is felt there is a problem with the immune system. Some doctors feel it is all in your head. But this is not the truth. There really is a lot of pain. Some people think they have Lymes or Lyme Disease (sometimes misspelled Lime Disease). Some people are diagnosed with a diagnosis of MS (Multiple Sclerosis) and some are told they have arthritis. There is no cure, but there is help. There is treatment. There is self-help. This is a real illness. It is physical and emotional. There are relationship problems and financial problems. There are real symptoms. Some people think it's associated with AIDS. Some think it's a virus. Some think it is caused by stress. Some think it's psychological or psychosomatic. Patients are often treated poorly. I know. There is often depression associated with CFS. That's why I've included Doctor Jokes and Lawyer Jokes. You can apply for SSD or Disability Benefits if you have CFS. You get this from the Social Security Administration. There are groups that offer alternative treatments. CFS, Chronic Fatigue Syndrome, Chronic Fatigue and Immune Dysfunction Syndrome, AIDS, Lyme Disease, Immune System, MS, Multiple Sclerosis -some people think these may all be related in some way. Diagnosis is difficult. Self-help is available. A cure for this illness is not. Treatment for your symptoms depends on your relationships with your doctors and lawyers. Jokes help relieve tension. CFS may be a virus. Some say it's psychological or psychosomatic or related to arthritis or emotional upset. It can ruin your financial situation. You can get help for depression. You can qualify for SSD (Social Security Disability) by contacting the Social Security Administration. Alternative treatments may be the best way to deal with CFS.