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  • Has anyone suffer extreme weight loss due to RSD

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    Old 06-16-2008, 08:40 AM   #1
    rayefaye
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    Has anyone suffer extreme weight loss due to RSD

    I was wondering if anyone dx'd with RSD has had any problems with weight loss since being dx'd. At first, I gained alot of weight due to the fact that I quit smoking along with the medications I was on. The nine months later after putting on 42 lbs., I started back smoking due to the fact I couldn't handle the weight gain. I've always been a very small person and my normal weight was between 120 to 125 lbs, I'm 5' 5" in height. Now three yrs later, I have now dropped almost 50 lbs and for some reason no matter how much I eat, I still cannot gain no weight. I have always had a very high metabolism rate which has always been a factor in keeping my weight down. I was always be very hyper-active and was even asked by a neurologist if I was ever dx'd with ADHD. I said no because when I was young there wasn't such a thing as ADHD. I have also had problems with Acid Reflux disease which I have finally gotten under control thanks to Nexium and a change in my eating habits. Still even after eating 3 meals a day and taking vitamins, I still cannot seem to gain any weight. I do tend to lose weight in the summer months due to the fact I get outside and work in my flower beds. So I was wondering does anyone else have a problem with extreme weight loss or troubling gaining weight?
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    Old 06-16-2008, 07:06 PM   #2
    Gaollan
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    Re: Has anyone suffer extreme weight loss due to RSD

    *Hugs* Here I thought I was the only one on the earth with rsd and was seriously underweight!!! *Gives you a big kiss on the cheek* Oh man......You weigh less than I do right now. I'm a whopping 82-83 and have been for about 3 1/2 to 4 years of the 5 1/2 I've had rsd. I'm 5'2" myself and have always been tiny with a fast metabolism thanks to my dad. I weighed 105 when I was a teen.

    Then at 18 I had my 1st baby. I didn't gain much with him but after having him went right back to 105 but it didn't stop there!! I slid down and ended up between 92-97. I didn't gain anymore, except for when preg with my next 2 kids, then right back down. I briefly gained a bunch of weight when I was drinking a lot. After having my 4th child, it did the same, back under 100. The lowest I went down was about 87 and was slowly gaining a bit.

    At the time I was injured at work, I had just gotten back up to 97-98 lbs after 2 years of trying to gain. After the rsd hit me, I began to lose weight, just a little at first, then within a couple of months, I took a free fall to 82-83 where I've been ever since. I eat all time and no matter how much I eat, I can't put on even 1 ounce either! Lyrica, the great "weight gain" drug, Phhhht not for me!! LOLOL I've been taking it 5 months, not one ounce gained and everyone else I've talked to that is on it gained quite a few pounds in a couple of weeks! *sigh*

    I hate being so thin. I'm sure you are like me, you can really see it in pics just how thin the face and body are. It bothers me but I can't seem to do a dang thing about it! I did figure out though from working and all that while I was working and going and staying very active that I gained but as soon as I could do that no longer, I lost it. Not being active equals weight loss for me. My oldest daughter is the same way. She is very tall and skinny. As long as she is active she maintains her weight. If she gets a cold or is the least bit inactive for a couple of days, she'll lose between 2-10 pounds depending.

    I'm so happy to know I'm not all alone in this!

    Hugs,

    Karen

     
    Old 06-17-2008, 06:43 AM   #3
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    Re: Has anyone suffer extreme weight loss due to RSD

    there ARE others out there like me.sorry you are in this too. the one BIG thing i recently found out about the SNS damage that casues the RSD to trigger to begin with? well in some people such as myself,it can leave your body kind of 'stuck' in that fight or flight response that the SNS governs. i knew my body was stuck there mostly because i have extremely high overall body tone(along with this constant overall feeling of too much energy that makes me feel like i am just always 'spinning my wheels" in one place kind of thing?) which we had just assumed was due more to the spinal cord injury i suffered which is also what damaged my SNS. well recently after doing just a bit of research on that fight or flight response,i found out the opposite of what i believed went on with the metabolism while in this mode was actually true. i assumed the metabolism actually slowed down due to the energy being needed to do the fight or flight thing? not true,exactly the oposite occurs when this happens. the metabolism actually goes into like a 'hyperdrive' type of mode as well. this really explains alot for me and my overall fat loss and a huge inability to even gain anything no matter how much i push into my mouth and eat. nothing shows up on me or on the freaking scale either. i look like a freaking coat hanger right now. all my fat has just gone from my body with no new fat actually showing itself. its really sick to be here in this state since i was always heathy and toned before this crap? my normal weight was right about perfect for my 5'2" body and smaller frame(105-107),now i am hovering around between 95 to down to about 90,on a good day. its just SOOOO sick to even look at myself in the mirror now.

    just letting you know that what could be going on is what i was told by my neurosurgeon way back when too. i just didnt look the way i look now back in 2003 when my injury occured. this just has happened over time,along with also losing my hair. god this RSD and the SNS damage that goes with it just all really sucks. if either of you find any possible way to actually add some weight that works,PLEASE pass it along? i do feel for ya too,believe me.Marcia
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    Old 06-17-2008, 08:17 AM   #4
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    Re: Has anyone suffer extreme weight loss due to RSD

    Hi Karen and Marcia, I'm so glad I'm not the only one with this problem. Currently, I weight around 108-109 lbs. the highest I got was 162 lbs. This happen 4 yrs ago after I was put in hospital for double puemonia and dehydration in which I spent 1 1/2 weeks in the ICU. After I got out of the hospital, I had lost my desire to smoke since I had went that long without one. Then I was put on alot of prednisone at one time and between not smoking and the prednisone, I gained up to 162 lbs from being 125 lbs. I couldn't stand the weight gain and between that fact and dealing with RSD, I started smoking again. So now in a period of over the last three yrs, I have loss all that weight down to 108 lbs. My doctor is really having a fit about my weight loss and like I tell him I eat but for some reason I can't gain no weight. I also just like you two, I had to look at myself in the mirror because I look like the skelton I was went I was a child. I was so skinny and bony as a child my mother had to take up all my clothes when she bought them or make me clothes herself. My arms are the worst they look all dry up like a 80yr old lady. They look so terrible I hate to wear tank tops now. I asked my daughters don't they look terrrible and they told me no but I know better. The thing that really gets me is I eat more now than when I was younger and yet still can't gain. Well at least I know now I not the only having to deal with this maybe one of us will eventually come up with something that can help us gain weight. Thanks again for your responses.
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    Old 06-17-2008, 06:01 PM   #5
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    Re: Has anyone suffer extreme weight loss due to RSD

    Hey Everyone..
    I really haven't gained much weight since RSD.. I have noticed that I lost weight.. I think I am actually losing muscle done which is making me look alot thinner... I can actually see the skin hang off my muscles.. Mostly in my legs. They look so weak.. When I first got RSD I was 128. I am about 112 now.. Doesn't look good at all...
    I am actually seeing the specialist down in Philly PA ( Dr Schwartzman).. the end of June.. I am going to talk to him about it.. I waited so long for this appt.. (10 months.) Can't wait to see what he is going to say..
    Michelle

     
    Old 06-28-2008, 07:32 PM   #6
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    Re: Has anyone suffer extreme weight loss due to RSD

    You're not alone. Though I can't say that I am underweight. I am 5'11", so I always look like I weigh less than I look. When I was first diagnosed I was wearing between a size 14 and size 16 in clothes. Now I wear a size 10 and wear 12's just for comfort at home. I lost over 40 lbs. And honestly I couldn't put the weight back on if I tried. Are any of you on topamax or cymbalta? When I started these medications thats when my weight dropped. I do have to watch it though. There are times I have to force my self to eat. I could just drink water all day long. Often times I completely skip breakfast and lunch and eat and small dinner.

    If your having problems with weight try drinking those nutrition drinks they have in the grocery store plus eat a meal. I forget the name write now, but they have all the nutrients of a complete meal, and are for people who don't eat enough. They don't taste too bad either.

    Kat

     
    Old 06-28-2008, 09:20 PM   #7
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    Re: Has anyone suffer extreme weight loss due to RSD

    Michelle,
    You and I are in the same boat... I weighed 128 when I got RSD, I'm currently at 109!!! I feel it's the meds I'm taking. Are you taking Lyrica?
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    Old 06-29-2008, 05:49 AM   #8
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    Re: Has anyone suffer extreme weight loss due to RSD

    Blondesan,
    How are you? I know why I lost weight... I am taking neurontin.. I don't think my weight loss is from that.. I feel mine is from stress, loss of muscle mass.. When I get stressed out I don't eat.. Some people eat everything is site.. I am the opposite.. I just don't feel like eating sometimes.. I thought lyrica caused people do gain weight.. I think I heard that about Neurontin also.. Its good question to ask the dr..
    Michelle

     
    Old 06-29-2008, 09:00 AM   #9
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    Re: Has anyone suffer extreme weight loss due to RSD

    My husband gained weight on Lyrica and Neurontin and lost weight on Topamax. I think that is fairly typical from what I have heard. He is currently on Lyrica. The topamax made him lose weight, which was a good thing for him, but it made him extremely depressed and he slept all the time--until 4:00 PM and then he would eat one meal, which is of course why he lost weight. So we stopped that!
    Kat, I think you are talking about Boost or Ensure. They might help.
    Sunny

     
    Old 07-22-2008, 04:06 PM   #10
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    Re: Has anyone suffer extreme weight loss due to RSD

    Boost or one of the products is what I meant. I just had a brain fart.... I will blame that one on the topomax, when I up the topomax the harder it is to find the words that I want to say or write. I am sure many of you have the same problem. I have a good support group. I don't mind being thin, but if I get too thin I have a lot of explaining and eating to do.

    Kat

     
    Old 07-22-2008, 05:47 PM   #11
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    Re: Has anyone suffer extreme weight loss due to RSD

    Hi everyone,
    I've lost approximately 25 lbs. in the 2-1/2 years since dx'd w/ RSD. I'm 5'8" and weigh 118, up from 109 at my lowest! I'm so sick of people telling me I'm too thin, I have to eat more, etc. I eat 3 full meals a day and snack between so it's not that I don't eat enough. I have an enormous appetite, but to no avail. I've always been thin and used to consider myself very lucky but this is just too much! I'm on Neurontin and it's done nothing for my weight. Also tried Ensure and all the other supplements.

    I guess I always had a fast metabolism and the RSD kicked it into high gear. Loss of muscle tone is a big problem for me, too. I'm at a point where I won't wear short sleeves or shorts because I look way too thin and it's embarrassing I can't wait for winter when I can hide in sweaters and baggy pants. What really kills me is when I'm scheduled for a procedure and can't eat from midnight before. I lose weight every time and it's a battle to gain what I lost.

    I'm sorry to see so many other with the same problem. I'm going to print this thread and read it to everyone who comments on my weight!

    I'm going to have a snack now regards to all,
    Vicki

     
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