Anyone on here with MS (Multiple Sclerosis) trying to lose weight?

[EiYogi]

Hi Everyone,

I'm new to the Forum, but hoping to find others with MS or similar diseases that struggle to lose weight due to inactivity and medications.

I was diagnosed 7 years ago and put on 60pounds. I have lost 20 but am stuck now. I will gain a few, lose a few.

I still manage to do Yoga in a studio 3x a week and Reformer Pilates 2x a week, but in between I am laying down.

This is a huge challege, but I'm not willing to give up.

I do tend to eat carbs in the evenings and although all my food is healthy, it's still carbs.

I'm searching for people MS or not, that can offer advise, encouragement, and ideas. I used to be a Weight Watchers Leader and lost a large amount of weight in my 20's but that was a lifetime ago and here I am again, in my 60's and back in the battle. I know a fair amount about nutrition- -- so maybe I can help others too.

I'm feeling desperate to get this weight off in spite of limitations.

Thank you all. I look forward to hearing other stories too.  

[ski_bum_1958]

Hi,

I have had MS since 1982.  I too have been on the weight roller-coaster.

The key to getting to where you want to be is slow progress. You have to ea a balanced diet and stick to an exercise program.  Unfortunately you must adapt your exercise program with disease progression.  For example:

1982-1997 ( I used to run/jog for exercise)

1997-2000 ( I quit running and started using a nordic track ski machine)

2000-present ( Could not use the ski machine due to balance and started using an elliptical}

2005-2010  (Martial arts training)

(2000-Present)  I ride a mountain bike in the summer.

You really have to get out and do what you can.

Also you should be on disease modifying drugs as soon as possible, they can help stop flares.

Eventually you will progress to secondary progressive (I have been there since mid 2000's) and it will require more adaption.

All through this adventure I have been working full time at various jobs.  In the late 90's my weight topped out at 230.  I had some bad ms flares and it dropped to 160.  I try to keep it at 175 now.

I hope it helps.

tg

[EiYogi]

Thank you so much! I should have been more descriptive because you took so much time writing about what you do and trying to help me. I really appreciate your help and hopefully you will have an understanding of where I am now.

I have Primary Progressive. I had to stop working shortly after diagnosis and haven't had a break since diagnosis. I got to Johns Hopkins and have the best doctor! 

My progression has been steady and painful and I'm getting weaker... but my weight doesn't move. 

My brain is full of lesions (too numerous to count they say) and I have lesions on brain stem, C and T spine. 

I just got leg braces so I could walk and use a walker with them; but for distance longer than house to car I use a scooter. 

I am on Tramadol ER, Klonopin, Baclofen, Cymbalta, Flexeril and Copaxone. I use Hydrocodone for breakthrough pain. 

I still do Yoga 3x a week, Pilate Reformer 2x a week, but it's getting harder and I'm getting weaker. 

[MattB159]

This may sound crazy, but look up MS bee sting therapy. I saw a documentary on it and though there isn't much research yet it has been effective for some people.

[ldwestmo]

I was diagnosed with MS since 2010.  I was very blessed that this was my first episode and was diagnosed within 6 months.  I began taking the DMD AVONEX immeidiately and have not had additional episodes.  I do however have minor symptoms that are worse when I over do it.  Clumsiness (legs and hands), spacisity in my neck and upper back, fatigue.  I also take 10 mg baclofen up to 3 times per day.

In 2010 I had weight loss surgery and lost almost 100 lbs.  (Thank goodness I lost the extra weight before the MS hit me!)  I kept the weight off for 2-3 years. In 2014/15  I gained 20-30 lbs back and this year I've put on another 20 or so.   I MUST get a handle on this and TURN IT AROUND.

I eat healthy for 1-2 weeks - then go CRAZY on sweets and carbs.  I have not exercised in a couple of years.  I'm planning to join the "Y" so I can start some exercise classes and water aerobics.  The classes are very motivating for me.  

Also, when I eat less carbs, more veggies, fruit and protien I feel better and have more energy so that is the type of diet I need to follow.  Have you heard of the Trim Healthy Mama eating program?  It is a really good plan but (as all diets do) requires planning, cooking, and discipline.

I'm new to FITBIT and I'm hoping it can help motivate me also!

[A_Lurker]

@ldwestmo - I can't speak to your health challenges, but maybe can help with the food choices.  Although I eat mostly homemade foods for breakfast, lunch and dinner, I still have a little bit of what some would consider as junk for my snacks.  Since I started counting calories I'm simply careful about how many calories I have each day.  For example, I know I'm going to eat after dinner so I leave calories.  I try not to cut anything completely out of my diet since if I do then I just end up wanting it more.

[Bkboo]

I have had MS since 1992. I use to teach Martial Arts (4Th degree black belt), Dance and Kickboxing Aerobics, I had been very active. Did not hear from the MS for 15 years! However, in 2013, MS decided to visit again.....In 2017 I'm 40 Pds heavier. I look at myself and say who are you and what did you to my body?! Anyway, It IS A STRUGGLE to loose this weight and very  FRUSTRATING to say the least. I take Gilenya, and other meds. count calories and have finally gotten myself to workout 3x a week. Also, I have knee and back injuries, put braces on and do it anyway. I cant workout as hard as I use to, I try, but get out of breath, weak....from the MS. So I know how frustrating it is when you have MS.

Ive lost 4 pds, in 6 months!!! I am not prefect with eating, I get frustrated and will binge on comfort foods. But get back on track, so I understand the struggle. I just keep trying! I really cant give up my favorite type of exercise, which is High intensity, but body says oh yes you will...so we battle a lot.  I think we need to give ourselves a break, say good job and try again...ya know.

BkBoo

[EiYogi]

Like you, I used to be very active, but can't do what I used to do. I have
also put in 40 pounds and as hard as I try, it won't come off. I do Yoga 3x
a week, but then have to come home and get into bed.

I'm very frustrated and don't know what else to do anymore. I hate the way
I look and wonder why such a double whammy 😢

+ Peace and Blessings +

[Bkboo]

I understand completely. I have my days but I choose to look at the positives. Its hard to accept that its a new.... well....challenge so to speak. I do what I can, if that's 10 minutes so be it and I try not to say ugh you use to do hours of workouts! This bites!! my internal dialogue gets me all the time with the you use to this or you cant do this....ugh that's a waste of energy.

I try to be nice to ME and say good job! You did the best today and the weight sticks around...for now, ya know? It can be frustrating, but I look at it as a new challenge for me to take care of me!

I look at it one day at a time and sometimes Ill eat well and I have to try not to focus on the numbers. (weight). How old are you? If you don't mind me asking?

[Bkboo]

Pat yourself on the back, you do a lot which is hard to do when you battling this disease!

[EiYogi]

I'm 64. I have ppms and use a walker, scooter, wheelchair depending on the
day, minute. I am going to see an endocrinologist the end of November to
find out if it could be thyroid.

I'm a happy person even with my MS progressing, but my weight bothers me a
lot. I pray I can find a way


+ Peace and Blessings +

[Bkboo]

I'm 57 and my weight bothers me too and I'm sure age, ms, meds all contribute ...I understand its frustrating!

Bkboo

[EiYogi]

It has to be the meds. I have tried Everything and if all is normal at the
endocrinologist, there is nothing more to do, but stick with Weight
Watchers and my Yoga for as long as possible, so I don't need to go on the
600 pound show, LOL. It will then come down to acceptance.

+ Peace and Blessings +

[Bkboo]

I think it contributes, definitely!