OT Losing to much Weight

Discussion in 'Fibromyalgia Main Forum' started by Bruin63, Sep 12, 2005.

  1. Bruin63

    Bruin63 Member

    This has been bugging me for a week, and I didn't want to post about it, because, the Weight Issure, is such a Sensitive one.

    I lose weight, I have no Interest in any food. When I first lost the 90lbs practially over night, the Dr.s put me through every test, they could, that would have to do with Mysterious Weight loss.
    I ended up tappering off at 118lb.s I finally found a Great Dr. who dx me with FMS/CMP turns out there is a "Subset" of Fms'ers who can't keep weight on.

    This is dangerous to my Intestines, my muscle tone, and my strength. Also, I believe that my disposition is Cranky and Frustrated by my lack of eating.

    I eat every other day, and it's only because my Stomach gets to aching, otherwise, I do not think of it.

    I do belong to a Eating Disorder msg bd. But most of the folks, and very nice ones at that, have very different reasons/causes of their Eating Disorder.

    I posted about this, and believe it or not, got the Riot Act, from some of them.
    I thought, these people should be able to Understand what I am going through.
    It's not funny, it's not pleasant, I hurt like crazy when I do eat. Istill can only manage Chicken and Cherry Pie.
    It's all my tastebuds seem to reconize and like.

    Malts, Heath drinks, all make me throw-up, it will sit on my stomach and it gives me a Heavy feeling, same thing with any thing, that has Red Dye or anything Citris.

    When I first saw my Rheumotoligst, I was weighing 118, shse tried a lot of things to get me to eat.
    I was put on Meds. that helped to cut the Pain, and I could eat, gained back up to 133lbs for a couple of years.

    I meet, a few people from this board, about 2 years ago, and they thought I was, Anxieroxia, I'm not.
    They thought I was skinny then, they should see me, now.

    I hate this, and what scares me is there is NO ONE for me to talk to about this.
    No one understands.

    Well I feel better writting this, Please if you have anything neg. to say, don't because I have heard it all before, after all, I've been here forever, lol.

    I just needed to get this off my mind, and maybe, by reading it, it'll kick it into gear and I'll eat.

    I know I can't go on this way.

    I'm crying, so please do not make this a bad topic, I just want to talk about it, in a postive way.
    I know there are others who are UnderWeight due to this Syndrome, and I would like to hear what they have done to help with their lack of eating,

    Thanks, for reading this, I know some of you are going to say, How can someone Forget to eat? I ask myself the same thing. Believe me.

    Hoping everyone has a Painfree day,

    sharonk
  2. sfrazier

    sfrazier New Member

    My heart goes out to you. While I don't have the problem of losing too much weight I can only imagine the pain you must be going through. You are so right in the fact that being too skinny is just as bad as being fat. As a kid I always thought I was fat and now that I am a mom of teenage girls I look at them and what they weight and have discovered I was probably anorexic (sp). The damage that is done to your body for being too thin is terrible. I hope that you will find a doctor that can help you with this problem. Hang in there and stock up on chicken and cherry pies.
  3. rileyearl

    rileyearl New Member

    That must be pretty scary. I have the opposite problem, so don't really have any experience to draw from. Have you tried setting an alarm to go off when it's time to eat? Maybe if you didn't always feel like you had to have a full meal, it would be easier to eat?

    I hope you get lots of good ideas here. Take care!

    Francie
  4. Rose_Red

    Rose_Red New Member

    My girlfriend has the same type of problem. Her husband sends her out for giant milkshakes and stocked the cabinets with vit and supps. Her biggest problem is iron.

    Her clothes never seem to fit, they're always loose. I've spent countless hours being there for her when she needs a shoulder.

    My problem is putting on weight. I so much as look at cheesecake and I gain 10 pounds.

    As unhppy as I am overweight I think it's harder for her to be underweight becuase no one sees it as a problem or understands the health risks.

    All you'll get from this corner of the peanut gallery is support hun.

    michele
  5. justlooking

    justlooking New Member

    I'm 5'6" and my weight varies from about 98 to 105. I don't purposely lose weight or gain weight, I just eat when I'm hungry and when I'm not I don't.

    My weight fluctuates based on my illness. When I "crash" I lose weight and then gain it back when I'm feeling better. Usually during these times my food intake doesn't vary too much but for some reason my weight does.

    Before I got sick my normal weight was about 115-120 and I was at that weight since I was a teenager, I'm now in my late 30s.


    I don't stress too much about it, since I have so many other reason to stress :) I just try to keep lots of junk food around along with my good stuff so I don't completely wither away. I love chocolate so if I don't feel like eating, I eat some type of chocolate (candy, cake, brownies, ice cream).

    I think my biggest problem is finding the energy to make myself something. By time I take care of my family, I'm just too exhausted to eat. So I always eat a bowl of cereal at night.... its one thing I can always manage! What people probably don't understand is when you don't have an appetite its hard to make yourself eat even when there is food in front of you.

    There are some prescription appetite stimulants you can get from your Dr. If this problem is something you are worried about, and it sounds like you are, please speak to your Dr about the medication options.

    Best of luck!
    Sincerely
    JL
  6. earn

    earn New Member

    Dear Sharonk.
    I hope I do not say anything "out of line"--I can tell you are very sinsitive---as most of us are about our weight. I weigh 190 lbs--and very sensitive.

    I have a niece who had simular prob-and a psyc dr gave her a certain antidepression med. It helped her--and every time she stopped taking it, she could not eat.

    I have always had an "overeating problem", but several months ago, I started having swallowing problem, and lost my appetite. Doctor thinks I may have had light stroke--or very bad reflux. First time in my life that I did not want to eat all day.

    I could not tolerate an MRI----that may show the stroke or brain damage. I started getting better--am able to eat -but still have prob swallowing.

    I understand how weak you must be, as I got very weak. This won`t help you much--but I wanted to share that with you--and hope you g et better--and find a doctor who can help you. Take care--and thinking of you-Laverne
  7. orachel

    orachel New Member

    Went to UCLA from 93-96, I think. Anyway, about the weight issue, there's been a ton of attention lately on people who are underweight, or can't keep weight on. I'm sure everyone (or at least I'd hope everyone...) at this point knows that this is a real problem for some, not a "guise" of an eating disorder....Kind of like FM and CFS are real problems, not the "imagined" problems some idiots assume.

    Best suggestion for you (and i've always battled with trying to get last 10-20 lbs off, until few weeks ago when I quit smoking, and I literally would "forget" to eat for like 2 days on end. Believe me, I didn't mind the weight loss, but it TOTALLY flipped me out that I could just forget like that!) is to get into higher cal smoothies/shakes that you can sip continuiously throughout the day. Theres tons of stuff you can buy or make, and since high cal is good for you, you can experiment with all kinds of things, icecream and chocolate thrown in, or tons of fruit. I'd treat it just like anything else that you have to train yourself to do. Just remind yourself that you should always have that sportcup with shake in it next to you, and you should always be sipping on it.

    Just a suggestion, but this way, at least if you don't sit down for major meals (which can be very difficult when you're quite thin...your body doesn't want to accept much food at one sitting!), you are getting constant source of nutrients and calories. I'm sure there's better stuff now, but old boyfriend was into putting metrx powder in with berries and vanilla soy dream. I'd get your blender and get experimenting!

    Best!
    Rachel
  8. 123sandra

    123sandra New Member

    Me Too!!
    I'm 5 foot 1 inch tall. As of last Tues(by way of hospital scales) I weighed in at a grand total of 7stones and 4 pounds exactly. I'm British so please excuse the weigh-in stones and pounds!!
    I to can actually forget to eat, I hate losing the weight because I CAN'T afford to lose it, but I TOTALLY understand what you mean. But you can't let it worry you.
    I've lost 3 quarters of a stone since christmas and not dieted to do it, it's just gone.
    I've always been small for as long as I can remember and I used to worry but not any more.
    It's part of who I am, I don't like it but I have to accept it.
    LOL
    Sandra
  9. fificat

    fificat New Member

    Hi Sharon and everyone
    I'm a newbe and have just resently discovered the reason for all the werid things ALL the hard days and months of terrible pain I've been. Of course I've read and you all completely understand. After I gave birth to my daughter 18 months ago I never lost the 35 pounds that I had gain then started the attacks and then I would just forget to eat. Days would go by.
    Evenually I lost 15 pounds in like 3 weeks.I have lost another 30 pounds since then But peole would see me snack here and there I wasn't straving myself. I just wasn't hungery. Just like you, Still to this day, I to have FM and have NO interst in food and can't put weight on. So youre not alone and thanks for writing it cause I really thought I wasthe only one...
    [This Message was Edited on 09/12/2005]
  10. hehmommy

    hehmommy New Member

    I can understand where you are coming from. I have always been thin all my life, but I too am 5'5 and barely 100 pounds. I am healthy it seems with everything except FM and CF. The doctors don't seemed too concerned. I would be concerned if you have lost your appetite. They do have meds that can help you regain your appetite so you can get a little weight back on you. You need to bring this concern up to your doctor and let them know how serious it is. Don't sugar coat it. Losing this weight can be dangerous to your internal organs. Not a good thing. Can cause all kinds of health problems. I hope you can get something to help you feel better. Yes if chicken and cherry pie is all you can eat right now then eat plenty. Most important thing is getting liquid. Get lots of water when you can too.

    Trish :)
  11. elsa

    elsa New Member



    Dear Sharon,

    I am so sorry for your pain. I can hear it loud and clear. I can't imagine a weight disorder support group hurting you that way. I wish I had some words of wisdom for you. I'll keep you in my thoughts.

    Take care,

    Elsa
  12. tandy

    tandy New Member

    I understand your weight problems.
    I've always been small too and when I flare up or get worried about my health I lose weight.
    I'm not teeny tiny grossly skinny right now,...but I have been. I'm 5.5 and weight 110,...but have gotten down in the 90's before. For some reason even a small weight gain or loss really shows on me!!
    For a long while I think my family thought I was anorexic too. But I'm not at all.
    I eat!!! but I fill up easily and I can easily eat one good size meal a day and be ok with that.
    anyways~ I just wanted you to know your not alone :)
    and sometimes people can be just as cruel to skinny people as they are to heavy ones.
    Hugs
    Tandy
  13. UPK5

    UPK5 New Member

    Hi Sharon,
    I too, can understand the perplexity of your problem, but mine comes from the opposite spectrum. Since I have been diagnosed with FMS, my weight keeps going UP and UP and UP.
    I had been taking Neurontin, and many people warned me that one of the big side effects of these medication, is weight gain. I thought, it would NOT affect me. Oh well, I was in for a rude awakening. The pounds kept popping on. I decided to wean myself off the medication because I noticed it had stopped helping me with my pain, yet the weight gain was still happening.
    I have been off Neurontin for many months and I am still gaining.
    I have a big catered party coming up in October for my son and will be having lots of friends and relatives at this memorable & special event. I am not looking forward to taking pictures when I look and am so heavy.
    Before I had gotten sick, I had joined weight watchers and lost 60 pounds. It felt sooo much better then. I have not put all of it back on, but I am still TOO FAT!
    I want to mention a dear friend of mine who is a fabulous cook, is a size 1 or so. She says when she eats, she gets terrible stomach pains. She loves to cook, but can't eat the food she makes. She is also very organized, and I look at her house and think I too, can be like that. She and others have told me, being organized is not always so great. They can't rest until everything is just so. I can rest even though my place is turned upside down, cause I don't feel well enough to clean it.
    Anyway, I hope you can gain the weight you want. I wd. imagine it is just as frustrating, cause your body is doing something beyond your control, and there isn't anything that you know of that you can do to stop it.
    Wishing you success and good health.
    Feel better.
    With gentle hugs and smiles,
    Cindy
  14. Alyndra

    Alyndra New Member

    I'm completely with you on the not being able to eat thing. (What most people like to think of as the 'don't like to eat' thing)

    I have a piece of toast in the morning to take my pills, and have the worst uncomfortable feeling in my stomach for the rest of the day. At night, I'll have some plain white rice - sometimes. Today so far has been one of those days where after my toast, I've felt too naseaus to have anything else.

    The difference part comes in here though - I can't eat hardly anything (also because of food allergies) but I've gained 90lbs in the past 6 months. (Maybe you just sent your on over my way!)

    I went through tests and all the fun stuff - for the first while was being treated as though it was cushings disease.

    It wasn't though. It was actually because my insulin level was WAY off. I should have been at 100, but even eating as little as I do - I was skyrocketed as 383.

    Since going onto medications to treat only the insulin levels (not a typical diabetic medication) the weight has slowly been coming off. Very slowly.

    I would imagine it would be worth asking your doctor to refer you to an Endocrinologist if you don't already have on. Mine indicated that the situation I'm in could be vice versa. Too little insulin being made might cause someone to be UNDER weight.

    Just a thought. You might have to specifically ask to have your insulin levels tested. For 2 years now I go for constant screening for Diabetes, and it never showed that my blood sugars were off. When I was tested specifically for insulin though? That's where the ray of light came from.
  15. Mar19

    Mar19 New Member

    In the last few months I've lost weight for no reason that I can tell also. I dropped almost 40 lbs and when I mentioned it to my doctor he told me that I was now at a "healthy" weight.

    Duh! After being housebound for over 5 years I did gain too much weight, but I wasn't trying to lose.

    Your description sounds like me. I jut lost my appetite. Almost anything I ate made me feel ill or extremely bloated and uncomfortable.

    I've been doing a tiny bit better -- no thanks to my doc. I've gained back 3 lbs. The last couple of days, however, I sense the "I-just-can't-eat-anything's" creeping back.

    Unfortunately, I have no answers for you, but I do understand how you feel.

    Sending (((((((hugs))))))) and compassion your way.

    Love & blessings
    Mar
  16. motomom412

    motomom412 New Member

    I have the opposite problem. I can't seem to lose weight. Even worse, I'm taking amitriptyline and it makes me crave sweets. That's bad when you're a diabetic. Another problem is that my cravings are like a drug addict craves their drugs, I can't control them. Hang in there sharon and I will keep you in my prayers. Just be determined to find a doctor or someone who can help you find a remedy.


    Hugs!
    Regene

    [This Message was Edited on 09/13/2005]
  17. JLH

    JLH New Member

    I certainly understand how sensitive weight issues are--I have the problem opposite of yours! I know exactly how it feels when someone starts discussing "weighty" issues!!

    We're here to support you! I hope no one will do otherwise.

    My younger daughter has the same problem as you do. When she was in high school, everyone thought she was anorexic, and 5 years later she admitted to me that she might have been a little bit. She is still concerned about eating very healthy and working out and is still very thin, but healthier looking. She lives out of town and when she comes home, other family members always comments on how she needs to gain weight. This really hurts her and I've told my family to just lay off the remarks, but they persist. Ugh!!

    I hope you and your doctors come up with a way to help you soon.

    Take care,
    Janet
  18. Bruin63

    Bruin63 Member

    I am touched that you all took the time to read my Pity Post. I am even more touched that a lot of you replied, and thank you so much for the suggestion's, and the good wishes.

    I was offline yesterday, or I would have written back then.
    I think I made one post, then my Hands, which have OA, with complacations of Digital Muscous Cysts flared up.
    I also have the good old, "Trigger Finger" problem in my left hand pretty bad these days so, I couldn't type much.

    I have been seen by a Gastroenterologist, one who was doing a study in the Long Beach, Ca area.
    They put me through horrible test's and only come up with, IBS, which I have had since childhood.

    I was thin as a Kid too, and even through my early years, untill I hit 40. Then I gained weight, I seemed to have discovered my taste buds, because I was eating foods I usually didn't before.
    Like Cheesecake, I had never like it before, but then I had a Sara Lees, Cherry Cheesecake, OMGoodness.

    Plus I was starting to show the FMS symptoms, but at the time it was still a mystery.

    When I got to my early 50's, I lost the weight, almost over night, I didn't even notice, my Sister, told me that my Clothes were to baggy.
    I like my clothing to fit losely, but I guess that was too baggy.

    I left, Idaho, went to Ca. by then I had gone from 190lbs to 118lbs.
    Met this GI Dr., but all he was interested in, was my being a person, who had been S.abused from a very early age. Who had IBS, he was convinced that the two were linked.
    He also wanted me to stop my pain meds, and soma.
    My smoking MJ was ok, in fact that was another aspect that he wanted to research.

    I quit going to him, and was sent to another GI Dr., with the same results. Nothing major, just IBS and Inflammatory Bowel Disease.

    So it's gotta be the FMS, I was always thin, but this is not good.

    I can't eat some of the things that were suggested, and I Thank You for making them, hopefully it will be of help to someone who did read the reply.
    That is whats so cool about message boards, we do learn from each other. ;o)

    I did eat Monday, both the chicken and the Pie, and I do eat them at different times, so it's like 2 mini meals, ;o)

    Then yesterday, I just had the pie, grr!

    I bought a very expensive Gown, on flex-pay, I recycled cans and bottles for that money, ;o) and now the gown is to big, I am afarid to have it altered yet, because New Years is still a ways off.
    At least my Shoes fit.
    That's another thing, I have gone from a siz 8 to a 71/2 shoe.

    Just downright weird.

    Ok I've rambled enough, again thank you so much for Your Kindness, I really needed that Support,
    May you all have a Painfree, day,
    sharonk
  19. alaska3355

    alaska3355 New Member

    and our new doc says it is mercury poisoning..., at least in part. He has 8 fillings in his mouth and we are going to start replacing them with composites. Amalgam fillings can make you very sick, losing interest in everything (even eating!). I'd consider this if you have amalgams....
  20. sofy

    sofy New Member

    is essential to keep your body running. If you dont give it fuel it wont work.

    I too am very thin, but luckily I can eat everyday.

    Try to change your mindset and think about food as your medication that you need 3 times a day. Spend a lot of time and map out just what you need to maximize the nutrition you need to have from the minimum of food you are eating.

    We are too use to thinking of food as something we like, dont like, or gives pleasure. Its essential fuel for our body and if we dont provide it then there are consequences.

    I hope changing your thoughts and actions about food will able you to eat the minimun basic nutrition each day.

    Thats pretty much how I think about food. Good luck