"Disability" and keto/low carb buddies?
sweetteadrinker2
Posts: 1,026 Member
I've got a few different autoimmune and genetic issues. I'm curious if anyone else in the group has EDS, dysautonomia, or other conditions that cause the need for a wheelchair or make exercise impossible somedays. I'd like to be friends 
Unfortunately it took my medical team a long time to find what was wrong, and my medications have caused lots of weight gain, as well as stress eating all the chinese food. Back on the wagon now though.
Unfortunately it took my medical team a long time to find what was wrong, and my medications have caused lots of weight gain, as well as stress eating all the chinese food. Back on the wagon now though. 6
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I am not in a wheelchair but I have RA, a Chiari malformation, and a form of dysautonomia. I have not been diagnosed with EDS but it often accompanies Chiari, I do have some joints that are hypermobile but not enough to be considered as EDS. You are welcome to friend me. I do have intermittent issues with exercise. Each time I embark on a serious program I sidelined by RA flares, tendonitis, stress fractures, or just overwhelming fatigue.3
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Hi there. I have ME - which is basically a physiological intolerance to exertion - so all my weight loss has to be on dietary restriction. I can walk slowly to get about now, but for a few years I needed wheels.
Anyway, I was "fortunate" when I first became ill with ME that I rapidly lost about 25lbs taking me to my ideal weight. However over the six years since then, I've gradually re-gained those lbs. In truth I probably only want to loose 20lb this time (family didn't like me looking "gaunt" LOL).
So I lost some weight a few years ago using calorie restriction alone, this time I'm hoping to go more LCHF. Low sugar isn't too tough for me (although I like a little fruit) but I sure find it hard not to eat potatoes - yup I'm from Ireland!
So any tips?
I read lately that some of our sugar cravings can be led by salt depletion, so I'm now happily shaking salt on my meals. Yum.
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I have RA and Crohn's disease and a congenital hip defect. I definitely have days where I use a walker. And I use a cane alot. I kept hearing that keto is an anti inflammatory diet that would help with my immune problems but I still manage to have flares on it. Swimming and pilates is the only exercise I do. I have 2 small kids so if I can walk I do. Unfortunately going to the zoo often means I am in bed all the next day. You can friend me.2
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sweetteadrinker2 wrote: »I've got a few different autoimmune and genetic issues. I'm curious if anyone else in the group has EDS, dysautonomia, or other conditions that cause the need for a wheelchair or make exercise impossible somedays. I'd like to be friends Unfortunately it took my medical team a long time to find what was wrong, and my medications have caused lots of weight gain, as well as stress eating all the chinese food. Back on the wagon now though.
@sweetteadrinker2 I deal with autoimmune issues. Ankylosing Spondylitis is no fun but the damage from years of taking Rx meds about killed me in one way or another.
Since Keto/LCHF I have ditched the power chair for theme park, etc usage. I have some walking canes but do not know where they are at any longer.
No Rx meds plus this WOE for going on 4 years is helping my health to recover so at 67 it is better than 30 years ago.
Currently I am working to try and remove calcium from my arteries, muscles, tendons and ligaments into my bones and teeth or out of the body.
At 63 the kids then 16 were having to help me in and out of cars, get dressed, etc.
This last weekend by myself I picked up and hauled a 3600 Ford tractor and pulled it for a total of 350 loaded miles with a pick up truck on pig paths and interstates without any down time being required this week unlike in the pass.
While I am excited about restoring the 1980 tractor for my use the ability to go get, restore and use it would not have been possible 4 years ago due just to the pain and feeling like death warmed over all of the time.
We are all different but I think in time most anyone able to log into MFP can figure a better Way Of Eating for themselves and just by sticking with that WOE with perhaps some future modifications may see continued health improvements.
In my case trying to avoid a new dangerous Rx med on a hunch I cut out all food containing added sugars and any form of any grain. Pain started dropping like a rock in just 30 days so I did not need to start on the Enbrel injection.
Today I am now fine tuning Magnesium and Vitamin D3 and K2 (MK-2 and MK-7) usage as noted above.
Due to my age and low state of health four years ago I know this is going to be a long haul for me but it is working in awesome ways already.
Failure is falling and failing to get back up in my view. Actually it has been over 3 years since I have physically fallen which is a record for me.
Best of success.2 -
Good for you for getting "back on the wagon". I have a neurological movement disorder but it is not disabling and frankly more embarrassing than anything. I'm a bobble head unless I accept my head being turned right and accept groping for things to my left usually to have them end up crashing to the floor. I knock things over and walk into walls.
I walk half sideways so I can see things in front of me and have had embarrassing things happen like a store manager place his arm across me as we were walking to the back of the store "because I wasn't paying attention to where I was walking" and he didn't want me to knock over a display. A day of Spasmodic Torticollis aka Cervical Dystonia. Mine doesn't cause much pain though I do have times I feel like someone is trying to twist my head off my neck due to the muscle overactivity.
It didn't hinder weigh loss. I'll walk for exercise/activity and have to stick to our city sidewalks which are much better maintained than neighborhood sidewalks. I'll do aerobics with the screen to my right rather than in front of me. Most comfortable is my stationary recumbent but that is mighty boring. CD/ST is purely neurological with a few overactive muscles resulting peculiar postures being the primary symptom. Nothing else.
My Dad was a paraplegic his last 20 years of life. He'd usually gain a few pounds during the winter from inactivity but was able to shed it in the summer just by being engaged in things he could do outside and making a conscious effort to eat less. He fortunately didn't have any other disabling health issues so when the snow was gone he was outside gardening, woodworking, etc. from his wheelchair. No pain that he mentioned but I'm sure he probably had some major wear and tear on his shoulders from wheeling that chair around all the time. He had an electric chair but chose not to use it much to keep his upper body strength. I digress. He was a pretty cool guy.3 -
CD/ST is purely neurological with a few overactive muscles resulting peculiar postures being the primary symptom. Nothing else.
Too late to edit so I really want to ETA: "In my case". My CD/ST is not debilitating. I have continued to work and make adaptations for daily activities. I have met others with more severe cases and they have got be absolutely miserable all their awake hours. Mine is mild comparatively. I don't want to minimize the condition. It can be incredibly painful, frustrating, embarrassing and debilitating. I'm just very fortunate. It could be much worse.
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sweetteadrinker2 wrote: »I've got a few different autoimmune and genetic issues. I'm curious if anyone else in the group has EDS, dysautonomia, or other conditions that cause the need for a wheelchair or make exercise impossible somedays. I'd like to be friends Unfortunately it took my medical team a long time to find what was wrong, and my medications have caused lots of weight gain, as well as stress eating all the chinese food. Back on the wagon now though.
I have a few autoimmune diseases- Myasthenia Gravis (the more I use a muscle, the weaker I get, to the point of paralysis and needing a ventilator, affects all skeletal and breathing and swallowing muscles), Neuromyotonia (muscle cramping and twitching), and Hashimoto’s.
The key is to find your excuses, and choose not to use them. As @wabmester says, “No guilt, but no excuses.” There are forms of exercise that can maintain muscle strength but require very little movement, and even I can do them on days when I’m bedbound without further flaring the MG. Find a good PT and find what you can do to maintain your strength and flexibility. Meeting your body’s needs might be different day to day.
I took a “maintenance break” for most of 2017 at a high weight on the recommendation of my neurologist, when weightloss seemed to be aggravating the autoimmune issues. Learning the skill set to maintain proved to be invaluable. When I was cleared to start losing weight again, it was easy to take a slight calorie deficit. Despite being bedbound or homebound for three months, on a pureed diet with thickened liquids, I was able to lose about 30 pounds. It would have been easy to revert to making excuses for eating shakes, ice cream, etc with the chewing and swallowing issues, but luckily I had made the decision not to rely on the excuse of “but life with chronic illness is hard.” It is hard, but it’s the reality of my life, and that’s what needs to be dealt with. Don’t use it as an excuse.
I’m lucky, there’s a new treatment for MG that I started last month, and it’s working. I’m able to walk again, and have been off the ventilator for a few weeks now. I’m glad I made the commitment a year ago to do whatever strengthening I could on any given day, it’s helped me recover much more quickly than hoped for.8 -
To everyone posting here I really admire your courage and attitudes. It's obviously hard but you seem to have chosen an amazingly positive attitude and that must help with so much for your own health and for the people around you who care about you.
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I'm not in a wheelchair, but occasionally I have to use a walker or am bedfast. I have minimal cerebral palsy, type 2 diabetes, hypothyroidism, primary lymphedema(mostly in the legs), osteoarthritis in the right knee, and irritable bowel disorder. Some days it is hard to exercise and sometimes if my IBS acts up, the only exercise I get is running to the bathroom
. I have been trying to exercise 3 days a week and started at about 10 minutes at first then gradually built it up to 28-30 minutes. Sometimes I do HIIT on the treadmill, sometimes chair exercises or a peddling machine while sitting on a comfortable chair. Once in a while, I use the Wii for Zumba or other dance games. It's hard to find fitness videos or games that are modifiable. I turned 50 this year and it seems a little harder to lose weight; but I've always had weight problems(except when I was a baby). I no longer need my diabetes medicine since starting this WOE last fall, and it's not my first time on a low carb diet. 1 -
The bad thing about lymphedema is that I can lose 5 pounds, then a flare up will take it back. It's frustrating.0
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I am not in a wheel chair; but have a number of health issues and have been on long term disability for apx 15 years. Keto/low carb has helped me to lose weight and has reduced a lot of my pain caused by inflammation. Feel free to add me. Best wishes for you.1
