Dieting with Obstacles - Multiple Sclerosis




View Full Version : Multiple Sclerosis


babsw
01-01-2013, 06:11 PM
Hi! Is anyone trying to lose weight while dealing with MS?:?:


ronni62
01-01-2013, 06:56 PM
Yep, I have MS and I believe there are some others on here with MS. You're not alone:hug:

valpal23
01-01-2013, 09:23 PM
Hey! with ms and freaking rebif I lost 115 lbs. gained a bunch back with depression and from flare ups but am still doing really well

What plan are you using to lose weight? I was a calorie counter.

Now I just focus on whole grains, healthy fats fruits and veggies. :). I walk when I can feel my legs. But just got a stationary bike because I feel stupid using a cane at the walking track

Honestly, my motivation was fear based. I was 21 when I was dx and stayed pretty sick for a few years. I was always heavy but hit 325 and had flares that kept me from having any sort of life. Somedays I couldn't walk so it became a " what would I do if I ever got to have the life I dreamt of" situation. I started small. Walks etc. and tried vegan ism For awhile my neuro said losing the weight was the reason I'm doing so well. Lol now he's back to giving credit to rebif. Who knows.

All the best! Focus on what you can do :). ( easier said than done. I know!)


babsw
01-02-2013, 05:41 PM
So glad to find some friends! I'm trying to lose some weight because I know I'll feel better if I do, but also because if, God forbid, I start really having issues, it's not fair for my poor husband to have to lift me up! I'm taking Gilenya now, but was on Tysabri, Copaxone and Betaseron in the past.

I'm going to start focusing on lean meat, seafood, fruit and vegies. I've lost 10 lbs., but I need to lose 45 or so more! It sure seems like a lot when I put it that way! Is there a specific thread for those of us with MS?

ronni62
01-02-2013, 07:58 PM
There was a thread for people with MS and a couple other similar conditions, but, I was 'gone' for awhile after losing my dad and fell off my plan and many of the group at the time seem to have disappeared or have moved on to other threads. Valpal was part of the group, if I remember correctly. So, Babsw, you may have just started a new thread for MS'ers here :)

Glad to have you here!

valpal23
01-02-2013, 11:09 PM
Yep it was a few years ago I think? I've been around a lot less because I found myself way too obsessed with my diet and exercise.

train
01-02-2013, 11:42 PM
I have MS too! It takes some adapting to lose weight with MS, huh?
I'm currently on Copaxone...

valpal23
01-04-2013, 12:24 AM
Lol. I have been unable to walk for exercise (power walker here) the last few months. So I've been using my workout times to get a home improvement project done. I just finished refinishing my kitchen cabinets. https://www.facebook.com/media/set/?set=a.582056428896.2045347.180500192&type=1&l=0561e6fb0e

So I needed an evening activity that be counted as movement. So I took my stationary bike back from my mom, put it in my basement. And have started doing 15 minute intervals (body temp)

I used to do Zumba. So I mixed some flailing in while I rode the bike.

I may have just created a new form of exercise. Ha ha

ronni62
01-07-2013, 12:55 PM
Valpal-Your cabinets look great!! So much better than the before pic!

I'm just starting to get the Christmas decorations put away today. It's our first day back to normal since before Christmas, with DH back to work, DS3 at school and PT, and DS2 getting ready to go back to college (as in....playing as many video games as he can fit in in 24 hours, before he has to leave:lol:).

Have a great day-looking forward to getting to know you all!

valpal23
01-14-2013, 11:33 PM
Thanks ronni I'm pretty proud of em :). Got them finished just in time to take an online course

So I'm on a spaghetti squash kick this month. I live in a remote part of Canada and the store doesn't stock it here but I drove 7 hours to visit my parents at Xmas and found 3 squash of the spaghetti variety. They even fit in my mini slow cooker - anyone ever tried em?

Oh! And I'm having lunch with the museum director this week to ask em if we can use their venue to host the ms walk :). Just did my rebif without eating before bed so I'm out. Take care! (Ronni my gamer brother just played for 4 days. He had a long weekend off work. Eesh)

ronni62
01-15-2013, 09:28 AM
Val-I do like spaghetti squash. I've even used it as spaghetti with our regular sauce and it's really good! Never tried the crock pot method before though. I usually poke the skins and then nuke them until I can cut in half to pull out the 'strings'. What else do you do with yours? I'm interested in other recipes beyond the spaghetti sauce to use with the squash.

I have a question for all you other MS'ers--does anyone else have gastric or digestive issues? Or, issues with swallowing?

Have a great day!

valpal23
01-26-2013, 10:31 PM
I have ibs for most of my life but only figured out my trigger foods in my 20's -- have you read into that new research that connects gut flora with ms?

I did my rebif yesterday --- and I guess having a fever all night makes the numbness in one of my legs worse. So that was a crappy way to wake up on a saturday.

am currently slacking in the exercise department. its easy to feel overwhelmed by life right now... and going into the basement to do an interval or two on that stationary bike is just low priority. i havent cleaned my house in weeks!

how's everybody feeling through the crappiest part of winter?

ronni62
01-27-2013, 10:32 AM
Oh, yeah, I hate this time of year....feeling the blues and tired of everything, including being tired of being tired! I have recently read about the gut connection with MS after having to eliminate wheat and dairy due to allergic reactions to both. My arthritis doc even mentioned that having an autoimmune condition like MS predisposes you to other autoimmune conditions like the arthritis or gout. Eliminating the wheat and dairy has helped many of my symptoms, especially the joint pain, so I'm curious to see what happens the longer I'm without those items.

Hope you get to feeling better, Val:hug:

Have a great day, everyone!

valpal23
04-02-2013, 10:39 PM
Well I had a crazy feb/ march which culminated in several doctor visits and a trip to the ER! My stomach med stopped working while I was on cacao and it caused a loooot of suffering! Does anybody participate in an ms walk? I organize the local walk :) first committee meeting is tomorrow. Goes the wheat/ dairy free life ronni? I don't think I could live without either of those!

ronni62
04-16-2013, 04:00 PM
Val-The wheat/dairy-free life goes very well! In fact, I think my MS attacks are less severe. I've lost about 40 pounds since eliminating the wheat & dairy and continue to slowly lose:) Just figured out this week that I must also be allergic to strawberries and possibly bananas. Strawberries have started making me get hives and then I read that if they make your mouth sting or burn when you eat them, it's an allergy. That's been happening for years, but had no idea what might cause it. Bananas do it too sometimes, so I'm eliminating a couple more things, but it's ok. I'll live.....I will miss those strawberries though..

Sorry to hear that you've not been well the last couple months. Hoping things improve quickly. Spring's almost here, so maybe a little sunshine will help too! I know it's working on my mood a bit, finally.

Take care!

ShootingStar
06-26-2013, 03:39 PM
Hi there :wave: Another member of the MS club here. I am 49, and was dx in '08 with RRMS. I did ok for the first couple of years, but had TWO nasty relapses in '10 (April and September), and my cognitive issues and physical issues were such that I was able to get SSDI fairly quickly. I am happy to say that I haven't had any relapses since then :carrot:. I've been on Avonex for the past year and a half and just switched to Tecfidera (BG-12) with no side effects after the first couple of days.

Trying to lose weight with MS is hard if you can't exercise like you should. I used to enjoy walking and dancing, now I do stretches on the floor with one of those big rubber balls, and I also have a stationary recumbent bike. Leslie Sansone and I used to be best DVD buddies, but I recently realized that I wouldn't be able to keep up with her ever again and it just makes me wistful, so I donated them.

I started a meal replacement diet yesterday as I just can't keep out of the goodies or do well with portion control. Now it's done for me, and I will stick with it for two weeks and see how it goes. Nice to "meet" you!

ronni62
06-28-2013, 09:09 AM
Hi, Shooting Star! Nice to see you here too! Your new med-is that the new thing on the market right now? My sister has been on tysabri for a few years, but it's very risky as she tested positive for the JC virus that, with tysabri, can lead to PML, so her doc wants to change her to the 'new med.' She's concerned about side effects, plus, her insurance doesn't want to cover it. She says she may just go off all the meds, as she has read recently that, after a certain age, the progression of the disease seems to slow up and even stop. I, myself, haven't ever taken any meds for my MS. Docs have always thought that the meds would have worse side effects than my symptoms and, now, my diet seems to be making things a lot better.

Anyway, glad you're here! We MS'ers seem to post here slowly, but it's nice to keep in touch and have someone who understands some of the issues related to the disease.

valpal23
08-08-2013, 04:30 PM
*wave* sup ya'll. been awhile. I'm still pluggin away MS and all.... i've had GERD for like a year now, which my dad has suffered from for 20+ years.... so I'm looking at getting a lot more serious about getting under 200 pounds. Since I'm so tall, I've been okay with my current weight... but GERD has been messing me with too long now, I'd really like to be able to eat spicy food and vinegar salad dressing again :)

ShootingStar
08-14-2013, 05:43 PM
Hi all, checking in here. I'm still plugging along doing the best I can. I need to get out and "walk" more, but when its over 90 degrees it's not so tempting. My job consists of sitting for 6 hours with a 5 minute break every hour, and oddly enough, I am TIRED when I leave.

Time flies so quickly between 3:00 pm and 10:00 pm, it's amazing. One wouldn't think it would take so long to put together a salad out of a bag and cook some chicken, but it seems to. Have a great evening!

:wave: :dancer: :woohoo:

ronni62
08-15-2013, 12:39 PM
Hi! I haven't been here in a while either. It's been a busy, busy summer, but now, DS2 is back to college and DS3's football season has begun, with school starting next week & I'm taking time to clean and organize.

Val-I've heard of some people actually using cider vinegar to treat their GERD. Don't know if it works or not. My DH has the problem, but he relies on OTC stuff and refuses to change his eating. I've also heard that eliminating wheat has helped many with the GERD symptoms. I know I never have indigestion anymore, but I never had a problem that was considered nearly as bad as full-blown GERD. I hope you find a way to deal with it. That's a really nasty thing to have to deal with all the time.

ShootingStar-I also have found 'sitting' jobs to be tiring. I think it actually has to do with focusing attention and the mind rather than physical activity or lack of. I also had a problem working 2nd shift and being tired alllllll the time. Hope the weather cools down for you soon so you can get out more and be comfortable. We've had some really unseasonably cool weather the last couple weeks and have been enjoying it immensely!

So, not much going on here right now. Shredding old paperwork of my dad's to free up some storage. It's taken me 3 years, but realized it was time to go through it and get the unnecessary stuff out of the house.

Hope you all have a great day!

ShootingStar
08-15-2013, 05:24 PM
Sweetie and I are going to one of the local casinos for a little "staycation" and dinner tonight. I love the buffet, I can eat all the peel and eat shrimp and prime rib that I like, and the potatoes don't even tempt me :smug: We always feed a machine or two as well, who knows, we might win :goodluck:

The only thing I hate is the LOOOOONG walk through the casino pushing my rollator and hoping I don't biff it on the hard bumpy floor before I get there. I have figured out that it's easier for me to walk on the (very flat) carpet, so I do that any chance I get. Phil just rolls along on his scooter while I'm wishing that mine was easier to pack in the car. Oh well, I count it as exercise, so that's a good thing.

valpal23
08-22-2013, 11:01 AM
morning! I woke up with gerd symptoms at 5 am today. am trying some fat free yogurt to ease the symptoms now. I've heard about wheat too ronni - i love bread - but definitly aiming on stepping back from breads with starchy veggies. so far so good. I really dont want to suffer my entire life like my dad. I have some pretty heavy prescribed meds that turn off all acid production but the side effects of those arent something i'm willing to live with.

cruisin for a cause is today! all a & w's across canada will donate a dollar for each teen burger sold. the local restaurant is closed - so I wore last year's ms walk shirt to work :) happy #cruisinforacause every use of the hash tag on twitter equals an extra dollar donated!

valpal23
10-01-2013, 10:26 AM
how's it going ms'ers? I had gotten down seven pounds, but had a gerd flare (my brother tried to cook for me and nearly killed me with taco seasoning). back at er, finally.

ronni62
10-07-2013, 03:38 PM
Val-7 pounds down is great!! Keep it up! Hope that gerd settles back down for you. My DH has been having trouble again the last few weeks, but he hasn't been willing to make any changes--stubborn, stubborn man!

I've been having a flare up again and it's making me mad! I'm sooooo tired alllll the time! Not getting anything done around here at all. Seems to be all I can do to get meals fixed and cleaned up and a little housework. Plus, the itching and needle-stabbing pains are worse now than they've ever been. I keep thinking I may need to go back to my neuro, but just can't afford any more medical bills right now, so I keep putting it off.

Take care, everyone!

RavenWolf
11-05-2013, 04:10 PM
Just recently dx'd with MS and am really struggling! I'm so tired all the time and some days barely get out of bed.

My biggest issue is that for over a month now I have not been able to have a bm on my own! I've been prescribed lactulose and miralax and still don't go every day. And I'm so bloated. :(

The constipation is really hurting my weight loss efforts. I get to the point that I can barely eat some days because it makes me nauseous, which the doctors said is normal since I don't go regularly.

I go to neurology on Thursday and am waiting on my gastro referral.

Any tips/pointers on dealing with MS constipation during weight loss? (Oh, I've been stuck in the 170's for several months now! UGH!)

ronni62
11-06-2013, 08:15 PM
RavenWolf-Welcome! And, yes, like you, I suffer almost constantly with constipation. After figuring out that I had an allergy to wheat & dairy, a referral to a gastroenterologist gave me a lot of information to help. First thing they found was that I'm also totally gluten intolerant, which can be autoimmune-related. So, that's one thing to check to try to become more regular. I had also developed a SIBO infection (google it-there's a lot of info about it out there), which is frequently caused by constipation. I've had to treat 3 times this year with the antibiotic used most frequently for it and have to avoid most raw vegetables. Also, the more wheat I ate, the worse the constipation got. Metamucil made it worse as well. So, the only thing the doc recommended for keeping regular, besides the dietary modifications, was Milk of Magnesia, at least 2 tablespoons twice a week. When I'm having a flare up, I have to take 2 tablespoons every day or I end up vomiting from lack of going. I hope this isn't too much info, but I know how horrible this problem is and it's taken me a couple years to find out what works for me. :hug:

RavenWolf
11-07-2013, 06:42 AM
RavenWolf-Welcome! And, yes, like you, I suffer almost constantly with constipation. After figuring out that I had an allergy to wheat & dairy, a referral to a gastroenterologist gave me a lot of information to help. First thing they found was that I'm also totally gluten intolerant, which can be autoimmune-related. So, that's one thing to check to try to become more regular. I had also developed a SIBO infection (google it-there's a lot of info about it out there), which is frequently caused by constipation. I've had to treat 3 times this year with the antibiotic used most frequently for it and have to avoid most raw vegetables. Also, the more wheat I ate, the worse the constipation got. Metamucil made it worse as well. So, the only thing the doc recommended for keeping regular, besides the dietary modifications, was Milk of Magnesia, at least 2 tablespoons twice a week. When I'm having a flare up, I have to take 2 tablespoons every day or I end up vomiting from lack of going. I hope this isn't too much info, but I know how horrible this problem is and it's taken me a couple years to find out what works for me. :hug:

Thank you for sharing your experience! Yes, I get nauseas and vomit from lack of going. Your body just knows when there is "no more room!"

I'm on Lactulose right now but have to mix it with prune juice for it to work just a little. And then I get awful gas pains and still don't have a complete bm!

I have been thinking of going gluten free and maybe I will have to take the plunge and go. But limit raw veggies? That's a tough one! I love veggie loaded salads!!! :)

Neuro appointment today, so I will also address this with him, since I don't even have the urge to go! It's not even that I'm straining to go, I just never even feel the need! There is a major disconnect going on and it's really freaking me out!

Bleh...

ronni62
11-07-2013, 10:20 AM
Thank you for sharing your experience! Yes, I get nauseas and vomit from lack of going. Your body just knows when there is "no more room!"

I'm on Lactulose right now but have to mix it with prune juice for it to work just a little. And then I get awful gas pains and still don't have a complete bm!

I have been thinking of going gluten free and maybe I will have to take the plunge and go. But limit raw veggies? That's a tough one! I love veggie loaded salads!!! :)

Neuro appointment today, so I will also address this with him, since I don't even have the urge to go! It's not even that I'm straining to go, I just never even feel the need! There is a major disconnect going on and it's really freaking me out!

Bleh...

I'm sure that not feeling the urge is an MS issue. I get that sometimes, less now that I'm struggling with the constipation. Mine used to be that I never felt the 'urge' until I needed to be very near a restroom about 3 minutes earlier! Always running for a seat, you know:p Now, it's, usually, not always, the sluggish bowel issues. I do miss the salads, too, but found that all those raw veggies make the sluggishness worse, which then leads to the SIBO, which makes the sluggishness and bloating MUCH worse, which leads to……..It's just a vicious cycle. I seem to be eating more Paleo now even though I never intended that to be my healthy-eating plan. I've switched to almond flour and coconut flour instead of the usual gluten-free stand-by of rice flour, as the rice flour, but not rice itself, make the constipation issues worse. Hoping that once I get all systems functioning optimally again, I'll get off this plateau I've been stalled on for the last 6 months.

Let me know what your doc says-I'm interested if they're suspicious of SIBO, as some of your symptoms, especially related to lactulose, sound very familiar. Best wishes!

kimsdietsaga
04-12-2014, 08:37 PM
Hello-- I rejoined this forum to get support and see if there is anyone else dealing with MS. I found this thread but no one posted in a while.

I am 47, need to lose 40 lbs (more or less) and have been losing the same weight over and over. I dropped a jean size (yeah!) using WonderSlim and counting calories. Not easy for me.

I am toying going back to WS or Medifast and needed some opinions. I am on a tight budget since I can't work anymore (I am 47, had MS since 1989, SPMS now) -- I do best with simple, don't think about it. I saw a thread in the forum about tricks to save money or coupons. Any other input? I am trying to do WW Smart Start (or whatever it is called... MS brain fog) and I cannot stick with it, I get lazy.

And yes, dieting with MS between exercise issues and for me keeping up with water when I get bathroom issues, is not easy!!! :dizzy: For me, the issue usually is needing to pee often, a few times I have had the other issue. I always make sure i take a fiber supplement because the walking or exercising as much as I should affects things

I hope to hear from you,
Kim

loririnnie
05-10-2014, 12:19 AM
Hi there! I just joined today, and I was diagnosed with MS in 2011. I was 170 lbs before I was diagnosed and then they placed me on Copaxone and gained weight slowly but surely. I always swore that I would start working out if I ever reached 195lbs. The Copaxone wasn't doing it's job, and all I was doing was gaining more and more weight. I quit smoking and didn't gain any extra weight, but I was sitting at 204 lbs after being smoke free for over a year so now is the time. I get up at 5:15 am every morning, and if I am lucky enough to be able to walk, I go to my gym at work and walk at least a mile. I am using MyFitnessPal app on my iphone to keep track of all of that, but happened on this site when I was looking for SBD recipes.
How long have you had MS?