Dystonia and burning calories
I burn about 3000 calories a day with Dystonia. I have to replenish those calories or else I drop weight quickly. Anyone else experience the same?
Replies to This Discussion
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Permalink Reply by Ellen S on -
Hi noelv,
That's a lot of calories to burn. I assume your Dystonia is Generalized? When my Dystonia was bad (before Sinemet) I know I burned a tremendous number of calories. Just sitting there I was exercising to exhaustion.
Something to consider is your metabolic state. Did you know that endocrine disorders, especially autoimmune endocrine disorders, can actually cause Dystonia? Especially hypERthyroid conditions like Graves' Disease. Fortunately, this is a treatable condition, and often when the primary condition is treated, the Dystonia gets better, or even disappears. It is of course different with each disorder and each person.
Graves' hyperthyroid causes the body to burn energy very quickly. One of the most noticeable symptoms may be weight loss. A few blood tests can help determine if something like an endocrine disorder may be causing or making your Dystonia worse.
Just a thought.
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Permalink Reply by noelv on -
My dystonia is not generalized but multifocal. But your suggestion is good. When my Dystonia was DX'd, I was not burning calories then or before the diagnosis In fact I was at 165 lbs after dropping from 195 4 years earlier when I was healthy and the weight loss was intentional. It was after the Dystonia became acute and I went on the usual round of meds that I started losing weight dropping to 142 lbs from 165 until I found good treatment. I have since regained 10 lbs and am actually at my ideal Body Mass Index, I may not be at 3000 anymore because I found that I can skip 1 or 2 of the extra snacks. The improvement in my neck spasms may have helped me regain the 10 lbs The weight loss could be a side effect of the klonopin or the occasional valium.
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Permalink Reply by Bren on -
When my spasms were really bad I lost 12 lbs in a week. When I was having good days (no spasms) it wasn't uncommon for me to gain 2-3 pounds back. Recently I had surgery and it flared up my spasms...lost 7 pounds in one week. Of course my MDS tells me that the weight loss has nothing to do with my spams..I beg to differ. I used to have to diet and exercise and was lucky if I could lose one pound in a month...since my spasms became prominent..I now have a hard time gaining weight.
I read that one pound equals 3,500 calories...
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Permalink Reply by noelv on
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Exactly my experience. And we can't just load up on junk food.. My weight will vary losing 5-8 lbs a week and 1-2 lbs a week to regain it.
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Permalink Reply by Rosemary on -
Yes. I have posted similar comment with different titles here and at other discussion boards. I have Generalized and eat more than I ever did even growing up and playing field hockey 3 hours a day. Actually I had lost a disturbing amount of weight when my symptoms became very bad and before I finally clued in that I was well underweight. I find I need about 2500 calories a day to keep my weight healthy ( I am 5' 6", #118). That is a pretty good intake for my size and considering my activity level is greatly reduced from what I did pre-Dystonia- I still try to stay active but everything is modifed. I know the MDs never seem to think Dystonia can "burn calories" but you do see it vaguely mentioned in movement disorder texts. Any PT or RD will say it can.
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Permalink Reply by noelv on
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And they have to be a good 2500 calories (3000 for me, 5'5", 150 lbs), not junk food. No need complicating our situation with Type 2 Diabetes and/or cardiovascular disease. I'm lucky my internist recognizes but false high BP readings with Dystonia. Our muscles are all tense whether they are dystonic or not. He taught me how to take my BP once the storm dies down and I go through my relaxation techniques. After 5 minutes, the reading is 115/80. When I take a measurement immediately, it's 140/100 consistently. His words:"the are no false low BP readings only false highs" if the measurements are done properly, cuff at heart level. He recognizes the calorie burning and he monitors my weight, glucose, and cholesterol quarterly.
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Permalink Reply by Rosemary on
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Yeah, I have about a healthy a diet as you can eat, per my endo and GP. I grow many of my own organic greens,vegies, herbs (in elevated pots), make my own low sodium soups and whole wheat, no/lo sugar, flax seed breads. Mostly plant based. My cholesterol is 170 with very high HDL and very low LDL, triglycerides, VLDL (like at the lowest pt in the range). My blood pressure is 100 over 70 on a high day. Dystonia does not always correlate to high BP. at least not in my case. I would be as healthy as they come if it weren't for the failed neck surgeries, even despite Gen Dystonia. So frustrating.
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Permalink Reply by noelv on
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People always comment how lucky I am to not have to count calories. I tell the I have to count them too just I have to reach a higher level and not aiming for a lower level. It is not easy eating a healthy 3000 calories a day. That's a lot of veggies, whole grain breads, and very lean meat and fish. And all with low/no salt or sugar. We Dystonians are the least understood because every case is different.
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