New to group, have 50 pounds to lose, HELP!!

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Hi there! My name is Lizzie. I am 23 years old, and I have been diagnosed with MS for just over a year. I have had to undergo 3 seperate IV infusion cycles, and each of those, gained several pounds. I now find myself, over 200 pounds, and in need of weight loss. When my heart rate increases at all, my optic neuritis pain skyrockets, and I get numb and tingly all over from other symptoms. I also am on Tecfidera, and have really bad reaction to the meds. My MS doctor told me to eat high calorie, high fat foods the 2 times a day i take my pill, to ease the side effects. So those are my biggest challenges, those are the reason I haven't been able to lose any weight. And I need help. I eat organic, and I use this tracker off and on. If anyone has any pointers, things they find themselves being able to do physically, foods to eat with Tecfidera, or general pointers on getting fit with MS, please let me know. Thank you, look forward to getting to know you guys. :)

Replies

  • squeakyfish
    squeakyfish Posts: 109 Member
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    Hi lizzie, welcome! I started with 50# to lose as well. I'm down 30# with another 20 to go. I'm also on tecfidera, 2 months now. I'm able to eat a normal meal with my two doses. A moderate number of calories with a moderate amount of fat helps me. I can't get away with just a yogurt for breakfast, but I've found that an egg and egg white omelette and apiece of toast with avocado spread on it are perfect. Right at 300 calories and enough fat to help prevent any side effects. I also take acidophilus. Some people find that taking something like prevacid also helps with the nausea and an aspirin for the flushing. As far as pointers, the important thing for me is to use the tracker religiously. If I' m not logging everyday, I am not accountable. Case in point, I quit logging for close to a month and gained 5 lbs. Log every day, everything that you eat. As far as exercise, find things you can do that won't raise you core temp. They make special cooling vests and neck wraps for people with ms. Try just walking on a treadmill. If you walk a mile or run a mile, you will still burn 100 calories...running just lets you do it faster. Better yet, exercise in a pool. Our local 's group subsidizes water aerobics, or you can swim laps or water walk. Losing weight is the best gift I could have given myself. Things that I thought were ms-related were actually weight issues. You can do this!
  • hartland45
    hartland45 Posts: 53 Member
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    Hi there. I've been on Tysabri for 4 years, and try to keep the known side effects -PML etc- at the very back of my mind and concentrate on losing the weight that has crept up over many years. Results are painfully slow as I find it very hard to do any meaningful exercise,but mfp really helps, provided I log on! I began at 241, am currently 217, with a target of 161. So, if I'm doing all the conversions from kg to lb correctly, I'm averaging about a lb a week loss, which is ok if I can only keep it up and keep it off.

    I was interesting in the cooling body and neck wraps mentioned - who makes them? US? [I'm in the UK hence the hesitant kg/lb conversions].

    Best of luck to all MS mfp-ers. Isn't it great that there are now so many and varied treatments for at least some forms of MS. Right through the eighties and nineties all I was offered for relapses was steroids and yet more steroids. My moon face has never recovered from those days. Any suggestions anyone, for exercises to help that particular side effect?
  • squeakyfish
    squeakyfish Posts: 109 Member
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    Hi Hartland,
    There are many manufacturers/suppliers of cooling devices. The National MS Society (US) directs you to polar products for a comprehensive list of products and price comparisons. http://www.polarproducts.com/polarshop/pc/home.asp I"m sure if you look on amazon, you'll find some for delivery to the UK. Good luck. I don't have problems with heat, but some of my friends use cooling devices and swear by them.
  • hartland45
    hartland45 Posts: 53 Member
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    Hi Squeakyfish [great name!],

    Thank you for the info. I'll have a look and maybe order before next ?hot summer.

    Hartland45
  • hsmaldo
    hsmaldo Posts: 115 Member
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    Hi and welcome!

    I'm on Tecfidera as well and I've been getting away with eating a slice of bread with 1 T peanut butter with my morning pill and ice cream with my evening pill. I also take Kefir water as a probiotic before each pill and when I started I was also doing a baby aspirin before each pill.

    As far as exercising, I take walks on my breaks at work...15 min in the am, 15-30 at lunch and 15 in the pm. Depending on work, I may get all 3 walks in or I may only get 1 or 2. But it really helps!

    Another tip with the Tecfidera is to stay hydrated!

    As far as your doctor's advice to eat high calorie, high fat foods with your pills to ease the side effects, if it's working, I would stay with that, but not necessarily in LARGE amounts. Peanut Butter is what works for me, but I only eat a tablespoon....not 3 or 4 and it works.

    If you want to see how my journey with Tec went and what I did, you can certainly check out my blog...I started Tec in mid-August.

    Feel free to add me as a friend and good luck to you! :)
  • Emilyschumacher
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    I will agree with everyone here, 1. be happy with .5 lb or 1 lb a week weight loss. 2. Try shorter more frequent work outs - less aerobic work outs. Try 10 -15 minute walks on treadmill or around the block. 3. Strength training keeps up the metabolism for longer afterwards and I don't work up a sweat by resting between reps. I don't do more than 10 minutes with my legs and 10 minute arms, use your own natural weight, resistance bands or low weights. I also start with the strength training, then wind down with the walk. When I started with the walk, I would go too long and couldn't get off the elipitcal or treadmill easily. Remember to keep it short and sweet, but frequent. This was the hardest for me to get use to. I use to work out regularly and equated how much I dripped with success. When I started to have the heat sensitivity, I got stranded a couple of times at the qym, unable to get out to my car and home. From there I had to work on overcomming my own fear of doing to much, and being okay with a little of exercise more frequently. I also got a Nutritionist that told me honestly your food intake and tracking is the first step, then adding exercise.