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CFS Causes Full-Body Dysregulation

By HERWriter
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By fall of 2001, my CFS symptoms towered over me.

I couldn't read more than five minutes, before the fog and inner tremors would rear up. I felt like huge adrenaline rushes were coursing through my arms and hands, felt like I was shaking apart. I could not formulate clear thoughts. My face and lips would go numb, speech was difficult. My hands and fingers would get clunky and everything would have to stop.

I still had no idea what I was dealing with, or how to cope. Except for this -- when I could no longer function, I would go to bed. Sleeping, or even just laying with eyes closed in a quiet room for 20 minutes, would sometimes take the edge off my symptoms.

I had IBS, and was gaining weight at an astonishing speed. My hair was falling out. My hands and arms, legs and feet were puffy and sore with edema. I had pain in my neck, shoulders and arms, which would stab here and disappear, only to reappear elsewhere, coming and going like shards of flashing light. Pain messages gone nuts.

My sleep was completely dysregulated, with no pattern to it. I might sleep all day and be up all night, or sleep a few hours at a time or maybe sleep for 14 hours. And still not feel rested when I awoke.

I moved like a ghost on the outside of my family's life. My husband Alan kept the household running, and did what he could for me. Neither of us had any idea what was going on, or where it would all end. We lived this way for many years.

Grim picture. Grim life. The good news is, everything I described here has changed for me over time.

When I went on a low-carbohydrate diet, for instance, the IBS symptoms left within 48 hours. Within three months my hair quit falling out. Other symptoms were slower to change, but all of them have improved and some have disappeared.

I'll talk more about these things in future articles.



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Hi Diane

That sounds like a great idea.

I will start looking into that, and see what I can put together.

Thanks for asking, I appreciate it.

July 14, 2009 - 6:07pm

Jody, just a nod and a bit of applause from me. I love how detailed you are and how responsive and empathetic you are in your blogs and your answers. I know that many people would love these tips about your nutrition and supplements, and might not find them at the end of this blog, since the title dealt with something else. I'd like to encourage you to just write an EmpowHer blog entry that uses all this material again, from the D3 to the low-carb diet to the hints about conditioner and detergent, and put them all under a title that's something like "25 tips from my life with CFS" or "diet, supplements and other things that help my CFS" so that future people just doing google searches will come across all this information very easily. You have a treasure on this thread that I want people to find!! Thanks for considering it.

July 14, 2009 - 8:28am

Hi Mera

I'm sorry to hear your symptoms got worse.

Were you possibly not eating enough vegetables on low carb? There is a common misconception that low carb means next to no veggies but I would never recommend that. The basic concept is less grains and other starchy carbohydrates (wheat, other flours, possibly rice, pastas, etc.), and less sugars including fruit sugars, but vegetables are good in any diet. With few exceptions (like if you're allergic to tomatoes or corn or whatever) lots of vegetables are a good idea.

Of course, just because I do best on a carnivore's diet doesn't mean everyone else will.

There are also different variations on the low carb theme. For instance, some people need to avoid gluten and just removing wheat and some other flours make the difference. Some have big problems with fruit.Some can eat just about any whole foods but really have to stay away from "enriched" devitalized foods. Some are better with whole grains. The main thing is that the types of foods, and amounts needed are unique to the individual's own body's needs, not some dietary chart.

It's just a matter of finding out which ones work best for you and which ones don't.

That's always the acid test. You'll know if a diet is a good one for you or not by how you feel on it. If it makes you feel worse, something definitely needs changing. :-)

Whey protein has helped you in the past? Getting some more sounds like a good idea.

I am actually doing a lot of computer time. I post here on EmpowHer.com, and on my website Ncubator.ca, and have recently started a blog. I post on a forum for people with CFS that is getting pretty interesting.

I post on a writers' forum as well. And I have recently started to do some freelance writing, and am looking for more of that.

It feels really good after being unable to do anything like this for so long. Alot has changed in 3 months.:-)

Is it more time than I spent with my first website, Ncubator.com, do you mean?

Nope. I spent easily twice as much time every day on Ncubator.com. Loved every minute of it too. :-)

I'm not up to that kind of energy consumption yet but I am being pleasantly surprised every day with just how much I am up for, and there seems always to be just ... a little ... more room for just ... a little ... more writing. :-)

July 13, 2009 - 10:06am

Hi Mera

I'm sorry to hear you're still experiencing those types of days. It is a terrible thing to have to endure. It can make you feel like the good and happy part of your life is over never to return.

Cutting out sugar and grains and eating far more protein than I had been, were the turning point for me, diet-wise. I improved so much in a short time after that, that I really believed for awhile that it was just that I was seriously hypoglycemic. A crash that fall told me otherwise.

Even so, sticking to a low carb diet makes a huge difference for me. If I deviate much from it, old symptoms begin to return fairly quickly.

Is a low carb diet helping your symptoms?


June 5, 2009 - 7:27pm
EmpowHER Guest
Anonymous (reply to Jody Smith)

Pain and tender points slowly got worse on low carb. It may be different with FM. I added in more carbs like beans, tomatoes. That eased up on the pain. I'm having a hard time last couple of months.I usually feel better in the summertime. Still can't put my finger on it. I was on whey protein, too. I need to buy some more.

It seems that you are putting in a Lot of computer time lately. Is it more than you did with Ncabator?


July 13, 2009 - 8:55am
EmpowHER Guest


How utterly and entirely sad. I'm so glad you are not there now. I have days like you described. Not all the time. And there's the pictures of places it seems I'll never see again.
To help me feel better I'm doing a low carb diet right now. I'm improving what I eat. I'd like to know, what was the change in your diet that started the 'big" improvement?


June 5, 2009 - 1:50pm
EmpowHER Guest

Dear Jody

I have been sick for over 9 years. Most of it bed-ridden with the monster that is CFS. Your description of life sounds so familiar to mine right now. It gives me hope to know you are feeling better. I would love to know what all you have done, if you have found a physician that helps. I need help to get stronger. I know my body can do it, if I just knew how to fight. The odd symptoms that nobody truly understands except a fellow sufferer are endless, in a sad way, it was just comforting to hear of someone else feeling the way I have been...I'm not alone and I can get improvement!
thank you for sharing your story.


April 27, 2009 - 12:34pm
HERWriter (reply to Anonymous)

Hi CJ. My daughter-in-law goes by CJ as well. :-)

I expect it was difficult for you to even be able to write your comment. I empathize with how hard it is to do some of the things you really want to do.

My doctor wasn't helpful, no. He didn't get in my way exactly. If I asked to see this specialist or that specialist he would always give me a referral. But he had no knowledge of my condition and made no pretense that he would try to find anything out about it either.

My naturopath has made a huge difference for me in the past 2 yrs. Before that time, I had learned that low-carb is best for me. My symptoms lessened almost immediately. Not that they didn't also flare up sometimes and crash me, but on the whole, things got a bit less ... bad.

Sleep was very important. The more you can sleep the better. Any sleep is a good sleep. Also, lying down in a quiet room, especially with eyes closed, helps. Even sitting up in bed reading or watching TV can be a good thing. Less stimuli than sitting for instance in a busy living room with other people talking, coming and going, etc. Even moving from a big visually more stimulating room to a smaller one makes a difference (eg. my living room to my bedroom).

You might consider lying down for 10 -20 minutes every one and a half to 2 hrs through the day. Just regenerate for that little bit, every couple hours. Works with the ultradian cycle. Google it, you'll find a few interesting sites.

Also, if you can have a more or less regular lay-down time, maybe morning and afternoon and evening, if you need that many take that many. It will help you heal. I used to go to bed to sleep after being up for like 2 hrs in the morning; then by late afternoon another couple hours, sleep or read; and then I'd read from 8 p.m. till bedtime in my room. It helped. It's an investment. It's regenerating. It isn't being weak. It isn't giving up. It's reclaiming your life. It's protecting your life.

Through my naturopath, I've learned some things. Eg. I take omega 3 oil, liquid. It helps the joint and muscle pain. Also helps the brain, central nervous system, among other things.

Also, I take 7,000 IU's a day of Vitamin D3. I started lower, after reading about its benefits, and gradually increased. I ran out for a couple weeks and started crashing -- felt like I was in a heavier gravity, weighted down, gasping and panting, legs weighed a million pounds, could hardly hold up my head, and very foggy. All symptoms that had been gone for months, maybe a year. And now back! Scary.

Within 2 days of starting back on Vit. D, the symptoms began to ease and within a week or so, pretty much gone except for times of extra duress or tiredness.

For tired adrenals, I take ashwaghanda. Licorice tea is good for this too. Ginseng was too strong for me, made me feel like I was on speed (the CFS version anyway)and couldn't sleep at night. Google adrenal fatigue or adrenal insufficiency.

Whey protein isolate helped my distressed GI tract. Helped get regular, also selenium tablets work together with the whey protein. Other things, I take liquid chlorophyll, it helps clean toxins from the blood etc.

Apparently we just leak magnesium like crazy, so you could check that out. New data says if you're also taking calcium, take an equal amount of both, NOT twice as much calcium as magnesium.

My naturopath figured I needed some detoxification. Figured I probably had still undealt with infection, viruses, bacteria. Oil of Oregano in liquid or capsule are antibacterial, antiviral. Probiotics help balance bacteria in intestines.

This is getting way long so I should tie it up. Everyone with CFS has their own unique symptoms but some things are universal. Hopefully there might be something here of use to you.

Let me know one way or the other. 'Cause I've got more. :-)


April 27, 2009 - 3:39pm
EmpowHER Guest
Anonymous (reply to Jody Smith)

Dear Jody,

Thank you so much for the information. I am looking into everything you wrote about. I would appreciate anything else you have to share about CFS! It helps to think there are different things I haven't already tried that could improve my condition.

Thank you again

April 29, 2009 - 1:19pm
HERWriter (reply to Anonymous)

Hi CJ.

I take Vitamin B12 in the form of Methylcobalamin (5 mg), and Vitamin B6 (250 mg). I also take 1,000 mcg of folic acid (folate)as part of a Vitamin B complex. They will all work more effectively when taken with B complex.

Here are some things I've done to reduce some of the burden on my immune system. I use vinegar instead of dryer sheets or fabric softener, and borax instead of, or supplementing, laundry detergent.

I buy a beautiful all-natural face and body soap that is made locally instead of the commercial brands.

There are less chemical - ridden deodorants available, a google search could be interesting. You can try using straight baking soda under your arms, or mixing it with coconut oil first. I find it a bit harsh on my skin personally, but it absolutely keeps you dry, and no aluminum or other harmful ingredients.

For hair, cider vinegar can replace cream rinse, and olive oil or coconut oil keep hair from being dried out, thus no need for conditionner.

Baking soda, or baking soda mixed with coconut oil makes a good toothpaste, with, again, no chemicals. I figure each of these things are worth doing if they might make any difference for me.

Hope some of this might be of help to you.


April 30, 2009 - 10:49am
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We value and respect our HERWriters' experiences, but everyone is different. Many of our writers are speaking from personal experience, and what's worked for them may not work for you. Their articles are not a substitute for medical advice, although we hope you can gain knowledge from their insight.

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