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Thursday, January 7, 2010

On Fibromyalgia

I don't know if this will help you, but I thought I would share my story. Maybe it will help someone else.

I'm not wimpy about pain. I get all my fillings done without any pain medication. I have sprained my ankles, burned my hand severely once and never even said Ouch.

But I was diagnosed with Fibromyalgia 7 years ago, after being in pain for 20 years. I also had the symptoms of low thyroid, chronic fatigue, insomnia, pain in my legs, and IBS. I had a complete GI workup because the symptoms were so bad I wasn't able to function well anymore, but it was inconclusive. I was even screened for MS.

I used to think I was going to continue to slowly get worse for the rest of my life. I had adapted to it. I thought I just had to accept my fate. I learned lots of tricks for saving energy and still getting things done, but I would pay a big price later if I did too much, or missed any sleep. Missing sleep made me feel like I had the flu!

I tried elimination diets to look for foods I might be allergic to, and got food sensitivity testing done, and had already eliminated a couple of things I was sensitive to from that lab result. I ate really healthy and went for walks. I felt better for a few months, but the Fibromyalgia would never go away.

I am very strong; muscle-wise, and don't get colds and flu a lot, but last year I got sick several times. I was so sick my hair was falling out. I thought it was the end for me...I felt 100 years old!

So coincidentally, last year, I put my whole family on this diet for Autism to help my son. He was already partially on the diet, but wasn't strict enough for it to really work well. It is just easier to do if you cook the same for everyone. I decided to make sure to do it myself so I could see what my son was going through, and I thought it couldn't hurt to try it myself.

The amazing thing was that within 1 week of going on the GF/CF and No Yeast diet, all my symptoms went away, every one of them. Not only that, I have a lot more energy now, my skin looks better, and I feel like a weight has been lifted that I was carrying all these years.

I also lost all cravings for food. I used to feel hungry all the time--even right after eating--and I thought that was just because I had to eat less as I got older to maintain my weight. But I think because of the reaction to the gluten/casein, I wasn't absorbing the nutrients from the foods I was eating, and so I had no energy at all and felt hungry all the time.

Now, when I do get hungry, I don't have that dizzy, light-headed feeling anymore. I can exercise now without triggering it.

I also now can exercise without feeling worse, instead of better. I took up dancing, bike riding and I work out at a gym. All things that would have exhausted me before. I lost 40 pounds without even really trying. I just have had to learn to cook from scratch more, and I learned what to avoid. I just don't bring it into the house, and that makes it easy.

I think that the neurological effects that cause Autism in kids from eating gluten and casein can also cause the nerve and joint pain in other parts of your body.

In my opinion, Fibromyalgia is an auto-immune response to something, often triggered by being in an accident, surgery, childbirth, infection, or stress. It causes chronic inflammation and all sorts of other problems. In my case, what I have resembles Celiac.

The crazy thing is, I didn't do this for my health at all. I didn't do it to cure the Fibromyalgia. I had given up on that ever getting better.

I had been put on a low dose anti-depressant to help me accept my condition better, and thyroid medication, digestive medication, pain medication, etc..... chiropractic helped some. (I have TMJ, and neck problems from being a trick skiier.) Anyway, I was able to wean myself off of every medication (with Dr.'s monitoring.) Not needed anymore.

I can still get a flare-up if I eat something that has gluten or casein in it, or if I go to bed past midnight. But if I rest and am careful to stick with the diet (even very tiny amounts can trigger it) then I am back to being perfectly OK by the next day. My only lingering symptom is some stiffness that a good massage or a soak in a hot tub cures right away. It helps to take vitamins now, I think I absorb them better. I take extra B6, Iron, Calcium, Vit. D, B12, Choline, Inositol, Pro-biotics, and Magnesium. This all I need now.

I don't miss any of the foods I can't eat. Once I started the diet, I didn't want them any more. And my son is doing great, also. He's in a regular school, getting decent grades, and has lots of friends.

I don't know if Fibromyalgia is caused by gluten or casein or inflammation or whatever. It might have several causes. I know I got it after having a severe stress 20 years ago combined with getting a virus at the same time. And it got worse with any new crisis or illness. I thought I had worn out my Adrenal gland from stress. I do know that I had all the pressure points, and even more than that-- where there was both joint pain, pressure point pain, and this pain that felt like pins being pushed into my legs all the time, sharp pains would wake me up from a deep sleep.

I also had all the symptoms of low thyroid, and the thyroid medication helped to give me some energy, but it wouldn't last, and I could never take enough of a dose to really feel normal. I could function, but it felt like walking through molasses just walking across the room.

I don't know if people have ever tried this approach for Fibromyalgia. I don't see why anyone would think to recommend it for that. I guess I just got lucky, and what my type of Fibromyalgia is, was the same thing that was hurting my son, but in a different way.

I was mad at my Doctor because he never suggested even trying to look for a dietary problem. 20 years of pain!!! (Well, I didn't actually yell at him, but he got a very dissapointed-sounding lecture.)

All I know now, is that I walk around now just being aware of the feeling in my body, it feels like I'm floating. It is so strange to be in a body that doesn't hurt anymore. Its like its not even me.

My family saw so much improvement in me that several other family members have gone on this same diet without me suggesting it. I would never have suggested such a thing as this for anyone who isn't sick because I think it is more difficult if you don't have severe symptoms to motivate you to stay on it. One of them says it helps her with arthritis, and fainting spells (she's only 18). Another used it to loose some weight (she's a size 6 now.) And now another is trying it for a daughter who has ADD.

Oh, and I also eliminated Aspartame and High Fructose Corn Syrup and most food additives 9 years ago--after a relative was diagnosed with MS, and the whole extended family got rid of Aspartame then. She was a diet soda addict before getting diagnosed. (She's better now, but still has MS.) My other son gets a bad migrane headache if he drinks a diet soda. We all felt better, but eliminating those things was not enough to get rid of my Fibromyalgia. I still avoid them, though.

I hope this helps someone. More people are doing this that don't say anything about it to anyone, because two men I dated also couldn't eat anything with gluten in it. I found this out when we ordered our food in the restaurant!

I think it is worth a try, if you have tried a lot of regular treatments and that hasn't worked for you. Plus, it doesn't cost anything to do this--you just have to learn it, make some adjustments in your lifestyle, and cook from scratch more often. If you try it for a few weeks it can't hurt you in any way. It is a healthy way to live, actually.

I think I actually saved money. I take no medications, see the Doctor less often, and I get more done every day, with less help. When I don't sleep it is by choice because I am addicted to reading Forums!

Some people who have Fibromyalgia have said that they have improved from going on a low-carb diet. This is also called a Specific Carbohydrate Diet, and is sometimes good for Autism, also.

But to clarify here, the diet I am on is NOT a low-carb diet.
I eat lots of potatoes, rice, corn meal, and even some dairy-free chocolate, and lately I just discovered Agave Nectar for a sweetener, (YUM!)

Anyway, I am not doing this to loose weight. Low carbs is a great way to loose weight, and it probably works for short-term weight loss. What I am doing is a lifestyle change. I lost a little weight, and some puffiness, and swelling I used to get, but I am on this for good, so its not really a "diet." Its a lifestyle. I can still overeat if I am not careful, but I think that overweight just compounds Fibromyalgia and almost any other disease.

This is what I had for dinner tonight:
lemonade made with lemon juice and Agave Nectar, cucumber salad, a turkey burger made with onion salt (I had it plain this time, but I sometimes have it on a gluten-free bun,) a baked potato with olive oil margarine, fresh sweet corn, Hagen Daas strawberry gelato. This was delicious, and I am doing great!

This is a diet that avoids all gluten, which is a protein that is found in several grains, and avoids all casein, which is a protein found in milk products and is a common food additive in vegetarian products. These two proteins can combine to form a toxin that can affect the brain and nervous system. You have to eliminate even tiny amounts of these--even a few crumbs of bread or a dusting of flour on some candy can cause the symptoms to come back for a day.

It is really an Autism diet, but it has somehow been exactly what I needed. I was diagnosed by a regular Doctor with Fibromyalgia, using the typical tests, but really Doctors don't know that much about what causes it, and there is no real cure. As I said, I was given all the usual treatments, (except Lyrica so far.)

However, I consider myself "cured" because when I stay on this diet and am very strict with following it, I have no symptoms at all. I guess a real "cure" would be if I could eat whatever I wanted to, but I will settle for this one: no pain, no problems, no pills, no cost to do. I eat really well. It isn't rabbit food. I love the food I eat, and after the first week of feeling better, I have absolutely no desire for the things with gluten or casein in it. Can't beat that.

I will post more on this diet in the future as I transfer my writing from another location. Mainly was interested in it because of how it helps people with Autism, but since I feel so much better on it, I thought I would offer it as a possible suggestion for people with Fibromyalgia, since that is what I have been diagnosed with (I guess you could say "had" but it is in remission, I guess.)

I have a hunch that when some people who are like me try to do a low-carb diet, that they greatly reduce the amount of wheat breads and pastas that they would normally eat, and this is what causes the improvement.

I would go crazy never having carbs. I need some carbs for energy. I just eat different carbs than most American's do. But in China and Japan they eat very similar to this and do just fine.

So it was suggested that I might have Celiac, but I was tested for celicac. I don't have that. I wish the test would have shown it because then I would have a more standard diagnosis that I could get insurance to cover. I have heard though, that in other countries there is almost triple the rate of Celiac diagnosis (Italy has something like 30% of the population!!!) So there are some gastroenterologists that are thinking that here we have too stringent of a set of standards for diagnosing Celiac disease. Perhaps I should fly to Italy and get tested there (after eating a ton of pasta, yum!)

This is much more complicated of an etiology than just celicac disease, but I think that there is a part of it that mimics celiac disease. I know that the latest thinking with Autism is that there is a strong auto-immune component, and many of those that benefit from this diet are missing a key digestive enzyme required for humans to digest both gluten and casein. There is usually something that also causes irritation to the lining of the intestine, like a chronic candida infection (thrush, or yeast) and that irritation allows the toxins from this incomplete digestion to enter the bloodstream. The toxin can cross the blood-brain barrier and cause neurological troubles. It can also cause numbness in the other parts of the nervous system, and perhaps cause the symptoms I was having for all these years.....

This is rather contraversial in the medical community, but so many people are trying this diet anyway and getting better, that the controversy is pretty much moot.

This book was written by the wife of a gastroenterologist whose son is Autistic. He did some of the original research on this disease process and almost lost his license because it was such a novel finding (he discovered the toxins in the urine of Autistics).
So his wife wrote the book and published it--he couldn't. Its a great book that describes the entire complex process of how digestion, immunity, and neurology relate together in Autism:

"Unraveling The Mystery of Autism and Pervasive Developmental Disorder A Mother's Story of Research & Recovery" by Karyn Seroussi

This is part of a new field of research that I am studying, called "Psychoneuroimmunology."

There are also many websites that address this diet. If you Google GFCF, you will get a lot of them. There are even some great cookbooks out there now. When I started with my son 10 years ago there was nothing at all to help. Now there are plenty of resources. But you have to know about it and want to try it. Its not hard to do, but you do have to get used to a new way of thinking and cooking. Once you get used to it, its not really a problem at all. (Except getting school, grandparents and others to help out by not sabatoging it.)

There is a good magazine that helps me a lot called "Living Without," and a great blog called "Gluten-Free Girl" and she also has a book out.

I love the way I eat now. I love to cook, and there are a lot more prepared products available now that are GF/CF that weren't around even just a few years ago, so I can make anything I want to eat, and still be okay. I feel great and I look better. Another bonus is that my skin is much better, I have noticed my skin has improved a lot.

I know of a few people with Asperger's Syndrome who also have serious digestive problems and fatigue.

I am a high-functioning Aspergers person. I don't actually have the diagnosis because I have been tested a few times in the last couple of years, and I test out as normal. But when I was younger I fit the criteria.

I know there are a lot of parents of Autistic persons who discover that there are adults on the spectrum in their immediate family when their child gets diagnosed. Part of this is heredity, and so that could be why I improved when my son did on the same biological treatments. Temple Grandin, and other Autistic adults I have researched all claim to have digestive problems and unusual body responses to pain, that have plagued them since childhood in their books. A lot of them are now being tested for these and going on specialized diets based on their lab results (often it is hereditary enzyme deficiencies, coupled with nutrient deficiencies, an inability of their liver to get rid of heavy metals and toxins, and chronic, low-grade infections such as candida.)

But there are new problems for children to deal with these days that made my son's heredity more of a problem for him, such as twice to three times the number of immunizations, environmental toxins, powerful antibiotics, food additives and pesticides that didn't exist when I was young. I feel like we are the Canary's in the mine...just the first to go.....

So here are some more recommendations from people with Fibromyalgia who have improved or gotten better:

Get your metal fillings replaced with porcelain if you can afford it.

For pain:
Try homeopathic Rhus tox 6C
Take 3x per day 1300 mg Glucosimine, Chondroitin, with MSM
L glutamine
Acupuncture & Chinese medicine
Arnica gel on painful areas, or tablets.
Magnets (bracelets, pads, shoe inserts, etc.)

For better sleep:
Take a bath with Epsom Salts in it before bed. 2-3 cups per bath.
Take a Melatonin.
If you have restless leg problems have your iron blood levels checked. Low iron can cause sleep problems.

For general better health:
Evening Primrose Oil
Omega 3 fatty acids (flax oil has this)
Vitamin B6 (helps with the brain fog)
Magnesium (helps prevent muscle cramping, helps with sleeping)
Vitamin B12 (helps with symptoms similar to anemia, and with brain fog)
The spices found in curry help, like Turmeric.

Yeast infections or candidia can be a symptons of a Hidden auto-immune desease.
Avoid products made with yeast, including Brewer's yeast.
Get your Doctor to give you a round of Difulcan and then Nystatin for a longer time.

Avoiding these things is mentioned in many places:
Aspartame (artificial sweeteners) can cause migranes
Sugar causes lethargy and brain fog
Gluten (in all wheat products)
Casein (in all dairy products except eggs)
Nitrites (in processed meats. You can find nitrate-free meats in groceries now.)
MSG (Monosodium Glutamate) can cause migranes
Artificial preservatives (salt, vitamin E, and citric acid are ok)
Artificial colorings cause muscle spasms and headaches

Take some vitamin D and/or go out in the sun about 15 minutes per day. This helps produce hormones that help you to sleep better.

For exercise, swimming is a good choice since it might not trigger the Fibro as much because it is low-impact. Then find a sauna or whirlpool to soak in. The heat might kill any lingering illnesses that your immune system can't fight off well enough--just like a high fever does.

Sugar aggravates Fibromyalgia. It made things worse for me. I remember that the thing that triggered a really bad year of illness for me was when I broke up with my boyfriend and ate a lot of Easter candy. After that, I got very sick, and realized that it was probably the sugar, when I did the same thing at Halloween and had the same problem. (It's really tough when you have kids around to avoid sugar!) I normally don't eat a lot of sugar, but when it is in the house, it is so tempting. I find its best not to have it around. I now give any extra candy to my local food pantry...not that I think they should be eating sugar either...just hate for it to go to waste.

I highly recommend that anyone who isn't feeling well avoid sugar at all costs. I think it aggravates all kinds of problems. There is some research that shows that the body's immune cells are reduced in number for several days after ingestion of sugar. I know one person who used to get sinus infections after eating a lot of sugar, and they stopped after she gave up eating processed sugar completely.

I use Agave nectar now for a sweetener because it has a low glycemic index (doesn't raise your insulin levels quickly.)

You can also use stevia. Stevia comes as a powder, made from a plant and you can even grow it in your garden, and use a leaf or two in your tea. Its really sweet.

If you are trying to loose weight, though, eating a lot of sweet-tasting things a lot might just stimulate your appetite, even if the sweeteners you are using are low in sugar.

If you were on a lot of anti-biotics after surgery or an accident, you might want to try taking a variety of pro-biotic supplements, or eating foods that are fermented, like miso, buttermilk, yogurt, tempeh, saurkraut, etc. Look for those that have live, active cultures in them.

I just read up on the Blood Type Diet while trying to help someone else with weight loss issues, and I discovered that the diet recommended for my blood type is the same as the GF/CF diet that has helped me so much. So perhaps you could try this diet also. You find out what your blood type is and then follow the recommendations for your type.

I really suggest that you try doing an elimination diet to determine if you have an immune response to certain foods. This means eliminating the most common allergens from your diet for a while. There are only about 7 allergens that account for over 90% of all food allergies/sensitivities. You do this for a couple of weeks, and then add back one allergenic food at a time, wait a day or two and see how you are affected by it. It is worth a couple of weeks to try this, and it doesn't cost anything but your time.

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