Elimination Diet...for my chronic fatigue

[Timaca]

Keep us posted and good luck!!

 

[SuzieSam]

I really empathise with you. To have beaten one horrendous health problem, only to be saddled with another... Too cruel. Me too.

I also did the can't-sleep-sleep-study and was told that the scant hour and a half of sleep I got showed them a healthy sleep cycle. But like you, I wake several times a night. That's absolutely not conducive to restful sleep. Please don't discount that as a contributing factor to your exhaustion.

My sleep doctor said it's a problem, if like me, you totally wake up, not just groggily stir. I tried long-acting melatonin, but the physical niggles that disturb my rest over rode it. Have you given melatonin a go? I have dry eyes that need drops, and usually need to pee at least once. I just can't get these issues under control.

I've also been gluten free for 6 months. For me, it's because I have Autoimmune thyroid disease (Hashimoto's) and the latest research is that it's beneficial for us. Not feeling it yet, though. I should go dairy free too. I applaud you for your determination and willpower! I'm so exhausted - giving up the cheese seems impossible today.

I hope that your doctor is right and these dietary restrictions help you - and that he can aid you further. Take care - eat well!

 

[soxfan]

@SuzieSam ....I do wake several times at night. At time I will fall back to sleep quickLy and other times lay there for an hour or more. Every night is different. I don't have consistent sleep at all. Ever since Lyme wrecked it back in 2004 my sleep is not of a good quality.

The diet is fairly easy since he said I would know within 3 weeks if something I was eating was part of the problem. After feeling so fatigued for so long I think I can handle 3 weeks. It really isn't all that bed...

I truly have no expectations of anything I was eating is the culprit but...
I have hypothyroidism since the Lyme...was diagnosed in 2006. Weird thing is I had no clue I had it and taking medication Levothyroxine for it doesn't make me feel any different..

 

[SuzieSam]

Wow, you'll know within 3 weeks? Definitely doable! Your hypothyroidism might be undertreated. How are your Free T3 and Free T4 levels? Mine are terrible, barely getting into "normal" but since my TSH was always low, my mainstream doctors insisted I was taking enough thyroxine. Big mistake. Integrative physicians prefer T3 and T4 to be in the upper quartile and ignore TSH.

Sorry if you know all this already - it's just so important and I've been WAY undertreated and struggling horribly for at least 10 of the 14 years of my diagnosis with hypothyroidism. The 10 years they say I've had Chronic Fatigue!

 

[soxfan]

@SuzieSam ...My levels are all pretty good. I had them checked in September Ann's they were in the upper levels. My endocrinologist surprisenly allowed me to try NP Thyroid for six weeks to see if it would help the fatigue but no such luck.

I have been on the same dose of Levothyroxine for years. I believe is different from what I would feel if it were Thyroid related I think.

Yeah...the diet hasn't been bad at all. I really don't miss any of the food I am not allowed but I also don't feel any better...still hoping though.

Been reading a lot on gluten intolerance and I also found an old test my Lyme doctor had me do back in 2009. It was a stool stest and I had a very high sigA anti-gliadin number 45.8 and normal is less than 12.3.

I think he had me go on no gluten back then but I don't think I stayed on it very long...so I am truly wondering if I have a gluten intolerance problem causing me the chronic fatigue.

I guess that high number signals immune system reaction to gluten. I don't think that is the only reason for my symptoms but we shall see in a few weeks when I re introduce wheat ...

 

[tudiemoore]

Soxfan, I just found your thread and am wondering what your outcomes are? We match in having very similar physical
symptoms. For some while I have been experiencing only fatigue and some brainfog--only! Fatigue rules my days.
Not sure exactly how impactful my brainfog is since I have ADD but it is not the burden fatigue is.

Especially interesting to me is your Lyme issue. I am currently ending undergoing IV infusions of Rocephrin, week 10 of 12 weeks. I moved to the South 2 years ago and, like you, had a horrid experience finding a doctor, in this case to address Lyme.
Here Lyme is a soap opera.
I am satisfied with my other medical treatments and have found my doctors concerned and helpful. But don't mention Lyme or CFS! "Nobody" knows anything about those things!

Hope your diet work has been wildly successful and you are ready to enjoy a beautiful summer!
tudiemoore

 

[Shoshana]

@soxfan

I wonder what your follow up is/ update.

Did you get any useful info from doing the elimination diet?

I did it years ago.... very extreme....just in case it would show me anything I didn't already know.

It didn't.

But I was glad to know I had tried it. Because I didn't want to leave that stone unturned. So I know I didn't.

It didn't help me though. How about you?

 

[soxfan]

Hi all....NO the elimination diet did nothing. I stayed with it for a month (a week longer than the doctor wanted). It didn't help with fatigue...sleep...nerve pain...nothing. The only thing I got out of it was a great morning cereal recipe which I make myself.

I am now going to do acupuncture next week because the doctor wanted me to try it and heck I have tried everything else so why not.

My sleep is junk...Klonopin does not work anymore (after five years) and they won't up the dose which is fine actually.
I was given Ambien 5 mg which does knock me out but for only about 6 hours ..then I am wide awake.

Nothing I have ever taken for sleep gives me a refreshing sleep so I always wake up feeling tired and un rested.

Every night is the same thing...get into bed and my body goes nuts..the nervous system gets going and my heart pounds and I can't sleep. When I do fall asleep I suspect my body is not resting or restoring itself...

Will let ya know how the acupuncture goes...not really sure what it will accomplish except a lighter pocketbook...

 

[Shoshana]

Good to hear your update, @soxfan

Sorry it didn't help you,
but at least you know you did try it.

And that great morning cereal recipe is worth something.
A small but real, visible reward , for the work of doing that food restriction routine.

I tried the acupuncture too, which actually helped me a lot, for some months, then stopped helping.

But again, worth a try, and it might help you. Yes, it does cost money, though.
Sorry nothing is truly helping you. Yet. We hope something will! Prove itself worth the money!

 

[soxfan]

@Shoshana ... I am seeing an Intergrative Doctor because it's all I could find down here. I know he will not be particularly helpful since he knows nothing about CFS but I am going to do my best to try and educate him. I have some articles I printed on my most troublesome symptoms so he can read up...one is sensory overload...and the other is sleep problems in CFS.

He is all I have at the moment so I have to do what he asks..I am still looking for someone else or maybe he can recommend me to another doctor. He did say he believes I have chronic Lyme but I feel I beat Lyme back in 2007 with Rocephin...

Thanks for posting and i truly feel if I could get a refreshing sleep I would do much better during the day..

 

[Shoshana]

I agree that refreshing sleep, would help me too, and many.

It seems like a good decision you have made, to go with the best you can find, where you are, for now.
Its a good idea to take him articles, too.

And we can hope that when more good research info come, then maybe some local doctors will be more willing to go with whatever becomes recommended, ....we hope it is not too long in the future!

And we hope, in the meantime, that some of the things we do will help in some way.
And, At least he believes, you have something!

(Hey, what's a sox fan doing in North Carolina? Oh, sorry, that is off-topic! )

(Maybe if I connected it to the topic, such as, its enough to make any sox fan ill, to be in North Carolina. haha, No I guess that doesn't work very well! )

 

[tudiemoore]

Acupuncture gave me my very first glimpse of how it could be to be "better"---after my treatment I left feeling overjoyed and normal!
Opening the car door--no pain, a miracle! On and on! I was struck with the simplicity of all these movements--amazed actually.

Within an hour all this was gone. My following treatments never produced that glow but with each one an area was addressed and I had some sort of positive, but brief, outcome.

I hope you can greatly benefit from this too. Maybe it is not a solution but an addition to the arsenal (or bag of tricks!)
we have to create and carry/drag along.
The Art or Science is thousands of years old--seems there's gotta' be something to it!

 

[soxfan]

I am from NE...thus a Soxfan! It is hard to keep going when I have already tried so many things with no success at all. None of the things that are supposed to help actually do...pacing doesn't work...resting up before doesn't work...great sleep hygiene doesn't work...none of the dozens of supplements I have spent a fortune on ever help.
I for sure know my sleep has a huge impact on my daily living but no one has been able to solve that and get me a somewhat refreshing sleep.

@tudiemoore ...I am not exactly sure what the doctor thinks the acupuncture will accomplish as he had a hard time understanding my symptoms...(sensory overload easily, mental fatigue easily, feels like my body is racing inside constantly, unrefreshing sleep. Hopefully the acupuncturist will "get it" and decide whether or not she can help...I decided to give it two appointments and if there is no results then I am done...

 

[tudiemoore]

If the acupuncturist is experienced and well-trained he/she will be able to determine the direction to take. However, in my case, I had to force myself to just ride along and not take too many mental notes!

I would be interested in knowing if you have any thoughts about what effect a treatment may have?
I had a good bit of confidence in my acupuncturist going into the experience and, as I related, a great initial
response to my first treatment!

And if one of the first suggestions is a little brown bottle of a brownish liquid...no, just kidding...!
I do believe treatments can be helpful. I want to resume acupuncture treatments when I can. Lots of other stuff taking my time, energy and $$$ right now.

Sounds weird, but I am excited for you!
Just remember--not too many mental notes--let us know?