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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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Add a Comment16 Comments
Jody, 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 - 5:10pmThis Comment
You 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 - 6:52pmThis Comment
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 - 6:40pmThis Comment
Hi, 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 - 7:02pmThis Comment
Hi 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 - 5:44pmThis Comment