CFS Causes Full-Body Dysregulation
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.
We value and respect the experiences of all of our HERWriters, 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.
Add a Comment16 Comments
Thank you for sharing your story, Jody. I also have IBS, but I would have trouble going low-carb because I'm a marathoner. I tried doing that during one training season and found my performance suffered greatly.
I'm looking forward to reading your story about how you were able to take charge of your health.
April 21, 2009 - 6:50pmThis Comment
alysiak, I've read that there are more than one metabolic types and I seem to be predominantly a protein and fats type. I was fortunate to have low-carb work for me.
Have you tried just cutting out gluten or dairy?
Jody
April 22, 2009 - 6:40pmHi, Jody:
Cutting out dairy is no problem, since I can't have it, anyway. I can, however, tolerate cultured dairy, like yogurt and even low-fat cottage cheese.
As far as gluten, I'm not a big bread eater, but there's also gluten in rice and I'm a big sushi eater. As an endurance athlete, it's a bit difficult to carb up if pasta is ruled out. I eat brown and wild rice, whole grain pasta and bread.
So, how do you cut out gluten for someone like me who is reliant upon a high carb regimen? What swaps would you suggest?
April 22, 2009 - 7:02pmHi alysiak.
This isn't my area of expertise as I stay away from all gluten, most of the time. A websearch could be helpful though. There seems to be alot of information along those lines on the net.
Jody
April 23, 2009 - 5:44pmJody, thank you so much for bringing the real plight of those of us with CFS to the public. Fatigue is only the very tip of the iceberg, as you have pointed out..
As a suffer of CFS for 36 years (most of my life), I, too, cannot stop gaining weight. Have you done any research to explain this issue?
Good luck and God Bless
April 22, 2009 - 5:10pmYou have my sympathy for living with CFS for such a long time.
I have an article in the works about the weight thing.
When I went low-carb, the weight began to come off. It first started disappearing from my abdomen which had become quite prodigious. In a matter of months, I'd lost a few inches from around my mid-section, at the same time as I ate as much protein and some vegetables and healthy fats as I wanted. I was never hungry but the pounds and the inches steadily disappeared. Eventually I lost 8 inches from my middle, just from the diet change.
I think I had food sensitivities that were at least partial causes for the GI problems and the weight gain.
It can be a tough diet I guess, but it makes such a difference in how I feel, and look, that I don't mind. I've stayed on it for the past 7 years (with cheat days from time to time). :-)
Jody
April 22, 2009 - 6:52pmDear 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.
CJ
April 27, 2009 - 12:34pmHi 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. :-)
Jody
April 27, 2009 - 3:39pmDear 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 - 1:19pmCJ
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.
Jody
April 30, 2009 - 10:49am