Multiple health issues

ballerinawannabe86
ballerinawannabe86 Posts: 4 Member
in Health and Weight Loss
Hiya
I have multiple health problems one being ehlers danlos syndrome, fibromyalgia, crps, bladder failure, pots, gastro failure, ME, the list goes on I would be here all day listing them but I would get bored.
Anyway does anyone else have any similar conditions and have any advice on shifting weight with low tolerance to exercise.

Many thanks in advance

Heather

Replies

  • Vune
    Vune Posts: 674 Member
    I, too, have been diagnosed with everything, but mostly different everythings (genetic kidney stuff that led to transplant, ligamentous arthralgia in so many joints, but they won't give me the hEDS dx, migraines that hit every joint when they flare, the medication side effects to treat these things, etc). I have to maintain my weight for the kidney transplant because you don't just get a cadaver kidney, then treat it like crap (or *I* didn't get a cadaver kidney just to treat it like crap), so I control my food intake. I try to front-load my day with fresh fruits and veggies, then the second half of my day is snacks with nutrition, like cheese and crackers. I like snacking, so that's how I arrange it. But I worked hard to get here and I spent a lot of time using a kitchen scale and learning what portion sizes look like. "Real food" hurts my stomach more, so I have to plan my day around it.

    I exercise, too. I use resistance bands and do exercises I learned in physical therapy. I don't have a strong support system, so I need to be able to maintain self-sufficiency as a disabled individual as I get older. I walk when necessary, but now I prefer it when I have access to a rower. Much easier on my most painful parts.
  • claireychn074
    claireychn074 Posts: 1,656 Member
    ballerinawannabe86 wrote: »
    Hiya
    I have multiple health problems one being ehlers danlos syndrome, fibromyalgia, crps, bladder failure, pots, gastro failure, ME, the list goes on I would be here all day listing them but I would get bored.
    Anyway does anyone else have any similar conditions and have any advice on shifting weight with low tolerance to exercise.

    Many thanks in advance

    Heather

    In terms of losing weight, that’s down to your calorie intake. Exercise is great for your health but you lose weight by lowering the calories you eat. Put your stats into MFP, select a slow rate of loss (not 2 pounds per week - that’s aggressive and might exacerbate some of your conditions) and weight absolutely everything you eat on a food scale. Record everything honestly and stick to your calorie intake, and you will lose weight.

    In relation to exercise, you might like to try to find a support group online for some of your conditions. For instance, I know there’s an active online population of EDhmS in the UK and they have some great exercise tips. There are also some free workouts online for hypermobile people, but I suspect they don’t have multiple conditions. So you might have to gently try some things and see how you react, anything which helps to build a mind/body connection is helpful. As is working out in front of a mirror so that you can see when you are hyper extending.

  • yirara
    yirara Posts: 9,986 Member
    What the person above said. Exercise is generally not for losing weight but for health. Do you have a physiotherapist? They might be able to work for you on stabilizing your body more by building stronger muscles. If you EDS is very strong, depending on the country your in some hormonal products might help. There's evidence that a very low dose of testosterone might stabilize you more. But of course changes t brings to your body, like changes to voice, body hair etc are kind of permanent. If you're getting close to menopause that restoring your hormones to younger level you might also help. But of course one needs to be willing to do this. There 's a good and knowledgeable eds community on reddit: https://www.reddit.com/r/ehlersdanlos/
  • ballerinawannabe86
    ballerinawannabe86 Posts: 4 Member
    Thank you both so much.
    I've started to record what I've eaten and drank today. It's amazing how it all adds up and so quickly. It's frightening how quickly how a little thing here and a little thing there adds on and before you know it your add your calorie limit.
    Especially with a few cups of tea and some milk in it that's quite a few calories before you even have your meal.
    I put my details in and it came up with a calorie limit and says if I continue my days like today in so many weeks I will be at around a certain weight so hopefully that will be good but I won't get my hope up as I know medication and good days and bad days do come into play x
  • claireychn074
    claireychn074 Posts: 1,656 Member
    ballerinawannabe86 wrote: »
    Thank you both so much.
    I've started to record what I've eaten and drank today. It's amazing how it all adds up and so quickly. It's frightening how quickly how a little thing here and a little thing there adds on and before you know it your add your calorie limit.
    Especially with a few cups of tea and some milk in it that's quite a few calories before you even have your meal.
    I put my details in and it came up with a calorie limit and says if I continue my days like today in so many weeks I will be at around a certain weight so hopefully that will be good but I won't get my hope up as I know medication and good days and bad days do come into play x

    Over time you’ll find what you enjoy eating and what fits your calorie limits. Some people find eating volume (like lots of veggies and huge plates of salad), others find fat filling, and do make sure you get plenty of protein. I don’t know what milk you use, but switching to semi or skimmed can save calories, and bowls of fruit with lower fat Greek yoghurt can be really filling for not many calories. Ultimately with your conditions you need to ensure you eat well, so take it slowly by recording your food and experimenting to start with, but then do focus on good nutrition. If you start a new exercise then also be prepared for a bit of short term water weight. It’s really common but can be freaky when it first happens!
  • kshama2001
    kshama2001 Posts: 28,052 Member
    Weight loss comes down to Calories In being less than Calories Out. Since you're not able to accomplish a lot on the CO side, you'll have to focus on reducing Calories In. Since at least one of your conditions is gastro, you're probably already thinking about food a lot.

    I'm glad to hear you've started recording what you eat - this can be very illuminating. Now drill down and find which foods you can tolerate are the most satisfying for the least calories.

    That said, exercise can help with fibro, and for me is crucial to manage my anxiety and depression. I have that and multiple injuries hindering my ability to exercise, but I just keep working on finding things I can do.

    This article on exercise and FM talks about starting slow.

    https://www.health.harvard.edu/blog/fibromyalgia-exercise-helps-heres-how-to-start-2020101321153

    Take it slow

    When you are ready to begin an exercise program, start slowly. Taking a small-steps approach to beginning an exercise plan can help. Add activity in small doses, every day if you can. Then build up your activity slowly over time.

    For example, if you walked for 10 minutes today, try 11 minutes — a 10% increase — a week later. This approach is especially important for avoiding a phenomenon called post-exertional malaise (PEM). Many people with fibromyalgia have this problem. When they feel less pain or more energy, they may try to get things done that they have been unable to do because of symptoms. Often, they don’t realize when they are doing too much at once. They may wind up feeling so exhausted that it takes days or longer to recover. This is PEM, better known to people with fibromyalgia as a “crash.” A gradual approach to exercise can help prevent it.

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