Sunday, January 6, 2013

Niggling about MS weight loss, a recent obsession


I have become completely obsessed with my weight lately. Every time someone mentions to me “you are so skinny,” which, P.S., is so not true, I feel completely insecure, embarrassed and become slightly paranoid really because their comments usually follow with “not that you were heavy before…” Wait, what? These types of chats typically fuel my neurosis about my MS weight. I know it shouldn’t but I really cannot stop myself. I niggle and niggle about my weight, pre and post weight-loss.

It starts with…

Are people commenting on my weight loss because my business casual dress pants are falling off? Well, they are a little loose around the waist and in the butt. Sometimes I feel like one of those people in the weight loss ads, when they pull out their waistband to show off how much weight they’ve dropped. But maybe my loose pants are simply due to a bad dry cleaning experience. Yes, that’s it. My dry cleaners probably stretched out my pants. I have real facts to back this up people. There was this one time when I tried out a new dry cleaning place (read BIG mistake) and they totally stretched out my pants. Bastards. They didn’t even reimburse me after I complained.

The niggling continues with…

Did I look overweight to everyone before? What’s the deal with this? Why didn’t anyone tell me? Why don’t people ever say, “have you put on weight? Everything ok?” Did I grow to such a size that no one felt comfortable enough to tell me? Good grief. I thought people really cared about me, about my well-being! Fuggedaboutit. There is no way I would ever tell someone “you look great with all that extra weight, “ so why do I care so much that folks aren’t telling me?

So the niggling manifests…

Should I be worried that I am losing so much weight, too much weight? How much more can I go? What if this has nothing at all to do with my MS? Maybe something even more serious is happening to me. Naturally, I’ve been googling ‘weight loss and MS’ on our worldwide web yet don’t find many instances of this being a symptom for fellow MSers. Weight gain usually accompanies an MS diagnosis due to lack of activity which is completely normal because when you don’t feel good you don’t feel like doing much of anything except laying down to sleep. Am I right or am I right?

I jog down memory lane to my first year of my diagnosis. Well it’s not really a jog because this MSer does not run, ever. Not even in case of emergency. I’m more of a walk-briskly-kind-of-person. So, I walk briskly down memory lane and seem to remember gaining a little bit of weight back then. But really, who knows? I cannot remember a thing these days due to my brain fog constantly disrupting my memory bank. And it’s not like anyone would tell me I’ve put on weight so I really don’t have much to work with.

Not ever convinced that my weight loss is due to my MS, I continue searching the web for clues as to what’s going on. Google reveals other diseases that are correlated to weight loss. One in particular scares the shit out of me even though the practical Dutch in me realizes that I am not being very practical at all. I see cancer on my screen. It’s at this point I usually tell my sweetie that I am very concerned about my weight loss.

Me to My Sweetie: Should I be worried about my weight loss?

My Sweetie: No, not at all.

Me: Well I have lost like 20 pounds and everyone keeps telling me that I’m sooo little. My pants are falling off and this is really getting embarrassing at the office.

My Sweetie: So you’ve lost weight. I should be so lucky. We can go shopping to get you new pants.

Me: Maybe. I just bought a bunch of pants though and really don’t want to spend any more money. I’d rather spend money on fun stuff.

My Sweetie: I don’t know what to tell you. So we won’t go. But your pants are a little loose. You might want to wear a belt.

Me: That’s a really good idea. But I don’t have a belt. I’ll have to buy one of those too.

My Sweetie: okay..but I thought we weren’t going shopping?

Me: I’m not sure. But seriously, should I be worried about my weight loss?

My Sweetie: No, not at all. You’ve been going to the doctor’s and they aren’t concerned. They would tell you if there was something to worry about.

Me: I know, I know. You’re so right. You’re always right.

We usually go around like this every other day. I am also known to trigger these types conversations after hopping off the scale, which tells me that I weigh XXX lbs. Ha, ha! You thought I was going to tell you how much I weigh? Not a chance. I can tell you that it’s the same weight as yesterday. Or, did that needle dropped down a notch. I can’t tell because I’m near sighted and I’ve got optic neuritis in my left eye, which makes things look a bit wonky. So really, who the hell knows what’s going on?

I will tell you this. According to the NMSS, weight loss and weight gain seem to be related to MS. I am sure my weight loss has nothing at all to do with healthier eating habits, riding my bicycle really, really fast as often as possible, and consuming less alcohol.

How about you guys? Anyone out there experiencing weight loss or weight gain? I would love to hear from you and to hear about your stories.

Hope you’re well.

Best always,
Christie

27 comments:

  1. Hello. I've been following your blog for a while now. This is the first time I've commented.
    I was diagnosed a year ago. March 2012. Although ms was suspected for a year before that. since march I have lost 40 lbs.
    I have not changed my habits or my diet as far as I know.
    I am still learning about this ms thing and what approach to take.
    People have been commenting on my weight loss as well.
    In my case I had, and still have plenty to lose. I've always been a big girl.
    The comments however have become a double edge sword. I'm glad that they notice I'm losing weight. But every time they comment it makes me think about how big I was. Then about how big I still am.
    I also worry that they see the weight loss as a sign of how sick I am. I don't want my co-workers looking at me and seeing no more than a sick person. Then like you I think about how sick I am and if maybe this is a sign of some new horror. Which has happened to me twice since diagnosis.
    I also have asthma and ulcerative colitis now.
    I really wish I could enjoy being two sizes smaller and not stress about it.
    Thank you for blog. It helps me as a newbie to this ms world.

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    Replies
    1. Hey Bonny. Thanks so much for swinging by and sharing your story. Sounds like you and I share an MS symptom, weight loss. I totally understand what you mean about folks looking at you and seeing only sickness. So frustrating and stressful which is something we don't need, right? It's good to meet you and I hope you feel okay. Best, C.

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  2. I so wish the scale needle was dipping downwards :-P
    About 6 yrs ago (4 yrs after diagnosed) I lost a bunch of weight (sz 18 to sz 4) right before my wedding. I didn't change my eating habits, meds or anything and my mother-in-law, husband, and friends were actually planning the entire wedding. I just had to pick my dress, attendants' dresses & flowers. I didn't even consider it could have been MS related. I was just happy to have lost the weight, regardless.
    About 2 yrs ago I was put on Opana for undiagnosed muscle and joint pain. That caused all scale to swing right back to almost where it was before hand. The worst part - when I was able to wean myself off the Opana, they STILL didn't know what was causing the pain, why it suddenly went away, or what will keep it from coming back. I'm still trying to lose the weight again and I'm slowly succeeding, but I'm always worrying that I'll need a strong pain med again and just start the upward swing :-(

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    1. Hey Jenna. Thanks for stopping by and sharing your story. It's good to meet you. How frustrating to go back and forth with weight and even more annoying that the weight gain was a side effect of the meds. I'd be worried, too, about the introduction of something new to help with the pain. I hope the pain subsides a bit and that you find the right solution(s). Best, Christie.

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  3. Great blog!!! I lost 35lbs since diagnosis. I hate when people ask how I did it. I'll throw out "stress" as an excuse but they look at me like I have nothing to be stressed about.

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    Replies
    1. Hey Nina. Thanks so much for stopping by. It is so difficult to address everyone when they ask about the weight loss. I feel embarrassed sometimes too and it always, always catches me off guard. I need to rehearse a speech and maybe I'll borrow from your "stress" excuse. Nonetheless, I hope you are feeling okay. Best always, Christie.

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  4. LOL .... Diagnosed with MS 2006. I have actually gotten rid of my scale! I was thin to start out ... so i wear shirts with ruffles in the warm months and chunky sweaters, and thick stocking under my pants to hide how thin i have become. People at work always comment on how tiny i am .... i reply "tiny but MIGHTY!"

    PS., eating cheesecake doesn't help put on the lbs ... but it is really yummy to try ;-)

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    Replies
    1. I love cheesecake, it's one of my favorites! Cheers to being tiny but mighty! Thanks so much for stopping by!

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  5. I have lost 20 pounds in 4 months on the aubagio. Its not been intentional. No nausea or vomiting. Just no real appetite. I wonder how long this will continue. I have had MS since 1985. Have been on both the avonex and rebif in the past. No weight loss on those. I hope this weight loss stops soon. I am actually starting to look sick even though I feel fine.

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    1. I hear 'ya. The weight loss can be a bit scary. Have you talked with your doctor(s) yet? It could be a side effect of the drugs or it could be something else. Thx so much for stopping by! Best, C.

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  6. I loved reading this piece! Well written! :)

    Andres
    stomach support

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  7. Hi all,
    Reading these posts really help! I was Dx in 2012, and have lost over 20 pounds. Dr's don't understand it and the internet searches don't help either because weight loss doesn't seem to be related to MS. Super frustrating !

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    1. My neuro did not seem to think my weight loss had to do with my diagnosis but I swear I read somewhere that it is a symptom, just not very common. I guess we're all MS outliers!

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  8. Hello everyone,
    I definitely believe that weight gain turns in to weight loss the longer I have the disease. I was just on Amazon to buy a seat cushion for my skinny behind and came across a review from a 90lb woman with MS. I'm just under 100lbs and have had MS for 45 years. I am very self conscious of my weight (or lack of it) because I don't look well. There's no energy for cooking if i even remember to eat, plus not much of an appetite; mix a little depression in and voila you have weight loss. i was so concerned about eating healthy food that when I couldn't eat healthy, I wouldn't eat. So if you have some extra pounds, see it as a blessing! It's always better to have some extra weight in because your body has reserves and you never know when you might need it! Bon appetit!

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    1. Weird that you, too, have experienced weight loss through the years of your diagnosis. And, glad to hear we are not alone. Really appreciate you stopping by to share your story. Hope you're feeling well today, as well as possible. Best, Christie

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  9. Took a break from writing, grabbed my newly skinny waist and decided to once again google MS and weight loss...found your blog and I'm glad I'm not alone .... lost about 15 lbs w/o trying since my diagnosis .... I was assuming it's my diet ...I eat really well. But not this well!

    Anyway Thanks,

    A

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    1. Hey there. Thanks so much for stopping by - I, too, am glad to hear that we are not alone with MS weight loss. Strangest thing, right? Hope you're feeling okay these days. Take care and have a glorious day!

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  10. Hey,

    I was diagnosed over 20 years ago and have lost 25 lbs, which puts me now below 100 many days. Bummer because wrinkles show and hard to buy clothes, but I never though it was MS related... Interesting, so glad to discover this blog and read of others getting through their days with "my" disease. By the way, for me from diagnosis to now, it has lost a lot of power, so wait it out!
    Karen

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    Replies
    1. Thanks so much for stopping by Karen. I've lost about 25 lbs too. So weird. I find that each year I live with MS, MS loses its power over me, little bit at a time - thx for saying that. Best to you!

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  11. I am so grateful for your blog! I was diagnosed 4 years ago and let me tell you "loosing weight" is a symptom. I was always an overweight child and even in my 20's I battled with weight... I thought it was going to be a life time battle due to the women in my family are built like amazon women and very statuesque. We can hold weight on our bodies and looking at us you would never know how much we really weighed. I was always over 200 lbs... I am 5'9" and at my heaviest weight about a little under a year before being diagnosed I started to loose the weight.... The thing is this weight has not stop coming off......... I was a size 18 at 220... my normal wight is 195-200 and that dress size is 12-14 for me but now I am a size 8 I may even be a 6 and every time I have to see people I have not seen in a while I cringe! They all think I am stuck on trying to loose weight and I have to play it off some how. I am just tired of nothing fitting.... Literallly my entire closet is on the floor in my room because nothing fits. I bought clothes for when I got smaller and alllllllll of my those clothes are too big. My boyfriend is supportive and for that I am grateful but it has not been easy. Just glad to know I am not alone. And to KAREN with the above comment THANK YOU for the hope!

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    1. I totally can relate to your story and really appreciate your sharing it. I know what you mean about clothes laying around everywhere, trying to make something work. Yes, Karen rocks with her words of hope. MS loosens its grip every year that passes. Hope you're feeling alright these days and enjoy the holiday weekend! C.

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  12. So glad to see this. I was diagnosed in September 2013, started Aubagio in December 2013, and have lost 28 pounds, going from a size 8 to 4. I also eat more healthily and exercise, but I was always quite healthy. My doctors aren't worried. What I've found most difficult - and shocking - are the comments from friends, colleagues, cafe owners etc. I would NEVER comment on someone's weight, never mind tell them they looked better before or have 'gone too far'. As most people don't know the reason, I tell them it wasn't by choice and change the subject. Hoping it stabilises, as I'm really too thin for my taste now, although still a healthy BMI. Never thought of it as an MS symptom, but maybe it's a combination of diet, drugs, exercise?

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    1. Hey Julie. Nice to meet you and thanks for stopping by the blog. I think you're right, it's gotta be the combination of diet, drugs, and exercise. Maybe even the MS itself? I'm not sure. Nonetheless, people's reactions are pretty interesting. Like you, I heard a wide variety of them, also quickly changing the subject. I hope you're feeling okay. Best always, Christie

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  13. thank you for this blog....was diagnosed 3 years ago...have recently dropped from a size 12 to a size 6 and even these are starting to get too big. My best friend who has always been tiny started saying that I am getting smaller than her. S he actually seems a bit upset about it. I'm not doing anything different. I used to love hiking at local state park, but the trails are too challenging when I can't feel my feet. I thought I would gain weight when the symptoms start, but the opposite has happened.

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    1. Hey - thanks so much for stopping by. The weight drop is certainly weird, right? Hope this note finds that you are feeing good, as best as it is possible. Take care, Christie

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  14. I was beginning to think I was the only one that noticed the weight change. I was recently diagnosed, March 31 with MS,RA and Osteoarthritis but have been dealing with symptoms for over 14 yrs. In the last two yrs it's hit me pretty hard and gone untreated, as insurance was not an option or available. It's been in the last year that I've lost weight without trying. But the MS is also affecting my diverticulitis. Some days I have no appetite and others I can't find enough to eat. People noticing is definitely a double edged blade. We need their understanding when we have bad days but don't want to be seen as sickly either.

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    1. Hey there. Sorry to hear of the struggles you've recently encountered. And, I certainly hope at the time of this reply, it has gotten a bit better this week. Have you spoken with a doctor about the weight loss? Or, maybe a nutritionist? I wonder if that would help maintain the levels you want. Regardless, I sincerely hope you're doing okay. Best, C.

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