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Chronic Fatigue Syndrome
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ferrari
New Member
Joined : Jul 2004
Posts : 1
Posted 7/20/2004 6:20 PM (GMT -8)
 

Well after 7 years of being ill and quite disabled, i have just been told the root to my problem is cfs/me. The first thought was ms but my neurologist has now decided what it is i am sufferring from.

Unfortunatly it is making me very disabled and sleep is bad along with severe exhaustion, even tidying the living room nearly kills me. I also suffer immensley with pain both muscle and joint, bowel, heat, memory (short term), to name some of the symptoms sad Sometimes just trying to walk is impossible.

I have been reading alot on the internet as i obviously would like the best quality of life i can have, but my biggest thing is diet.............is there any thing with diet any of you have found helps or makes matters worse. Any helpfull advice etc., would be greatly recieved.

Thanks

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Brynn
Veteran Member
Joined : Mar 2003
Posts : 1663
Posted 7/24/2004 12:36 PM (GMT -8)
Hi ferrari,
Welcome to HealingWell and the CFS message board!
I don't know if you have learned this yet or not, but one of the main characteristics of CFS is that it affects everyone differently. Most everyone who lives with CFS has diet issues, but they are all different. So you may get replies from several people claiming their diet is the best. And it IS the best, for THEM. But I believe that each person must find what works best for him or herself. If your symptoms don't appear to be related to your diet, then don't even bother with changing your diet. If they do seem related to your diet, the following is my suggestion.

Personally I have found the elimination diet to be helpful. Plus the nature of an elimination diet makes it suitable for individual needs. Basically, one eliminates things in their diet which they think might be causing their problems. Allow a week to go by after you stop eating one item, and if you are still having trouble, eliminate something else. Do not add the first thing you eliminated back. Keep eliminating things, either individual foods (cheddar cheese, pork, oranges, for example) or dietary groups of foods (dairy products, meat, fruits, for example), one per week, until you are eating only those things which are not causing problems. Be sure to keep a written history of what you eliminate, when, and the results of eliminating it. This will reveal SOME helpful info. But the most important part of the elimination diet is adding things back to your diet, which you previously eliminated.

Add ONE food item back, not a whole group, in roughly the same order you eliminated them. Even though you may have eliminated a whole food group at once, it is very important to add back individual foods. Any foods to which you have an allergy, sensitivity or intolerance, will cause your symptoms to flare back up. They will flare up severely, because you have avoided that food for the last several days or weeks. So there will be no doubt. As you identify each one, wait a week for symptoms to die down, before trying to add the next food back. You'll find some that you are able to add back without incident, and you'll find some that clearly cause problems. Be sure to take notes, as this is obviously a complicated and involved process, which you don't want to have to go through again.

If you do a search for elimination diets, you will find more specific instructions for performing each step--such as exactly what day to eliminate exactly which food. And that's fine if that is easier for you. But note that they all say to wait 4 days between each elimination and between adding each one back. But I would strongly suggest waiting a full week. Most of those instructions are written under the assumption that allergies are the only problems around. And 4 days is fine to identify allergies. But other reactions, which are more common (meaning you are more likely to have them than allergies) such as intolerances and sensitivities, take up to a week to run the course of its symptoms. (If that sentence is hard to understand, let me know, and I'll rephrase it!)

Good luck with this. I'll be glad to answer specific questions, if you have any. And I just want to stress one more time, if your symptoms don't appear to be connected to your diet, you probably won't have much success with relieving symptoms by changing your diet, in my opinion. Take care.
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snohare
Veteran Member
Joined : Oct 2004
Posts : 2088
Posted 10/18/2004 8:21 PM (GMT -8)
Love the name ! (Slo hare is probably a better one for me nowadays)

I know just how you feel, but from memory - I reckon the first five years are the worst, so hopefully things have begun to improve for you already...

I'd agree with everything Brynn said - bang on. Having said that, if I meet anyone on this BBS who has CFS and has no dietary problems, they'll be the first one.

My big sis has ME, so has her husband (probably gave her it), I've various friends who had/have ME or CFS, I have CFS or something very close, and we all have problems with foods. (In my case gluten, maize, cow's milk products, carrageenan, cocao mass, etc, etc.) For me, it was often my favourite foods ! (Chocolate, coke, Corn Flakes, toast.. nono ) But that's just me.

Once I eliminated one food from my diet, I had an immediate dramatic increase in energy; no longer sleeping for 24 hours after walking 500 yards. That was by no means a cure, but the start of light dawning.

So - an elimination diet is worth a try. I loved my dietitian, she knew all about CFS symptoms ! 

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mscarrot
New Member
Joined : Oct 2004
Posts : 15
Posted 10/23/2004 2:59 PM (GMT -8)
Hi Ferrari,

LOL, love your name !!!, hopefully you will be back on your feet running like a real ferrari soon !!!.
I also tried a diet, you can find info here:

http://www.aeonbiotech.com/pagify.php?page=novo_prog_bginfo&lang=english

it seems like a diet for overweight people, but here in the Netherlands it is mainly given to people with CFS.

I have to be honest, -at least here in Holland- it is very expensive. Your blood is tested for allergic reactions to food components, and mostly there are al lot.

you get a list of all products that you aren't suppose to eat/drink for 3 months. After those months you can eat very slowly some products again, and you will immediatly feel if you are getting an response becose your body is "clean' for 3 months you really can tell.

I did this and it is very hard, I wasnt allowed to eat anything......well almost....at least it looked that way, but after 2 weeks you get used to it, and you do feel a noticable change fast.....that is in a few weeks.

For me the result: no more problems with my irritable bowel syndrome, I did got energy back, no more infections (exept for a flue right now.....aarrgghhh), so i can reccomend this diet cause it is personal, at least it is U're blood they check :)

Ofcourse you can also try Brynn idea, it is the same, only now you know exact what your problem-food thingies are.

I guess it is a good idea to try to eliminate the things you "kind-of-know-allready" from your eating/drinking pattern.

Gosh hopefully you can still make sence from my story, am a little bit -very- exhausted and the brain fog is getting real thick.....

anyway, lots of love and good luck,

Paula
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