Gained 100 lbs in 6 months and nothing can be done

Discussion in 'Fibromyalgia Main Forum' started by Alyndra, Mar 20, 2006.

  1. Alyndra

    Alyndra New Member

    I'm literally numb right now.

    I've had alot of different emotions going from doctor to doctor this past year, but today seems like the end all.

    December of 2004 I weighed 170.

    A month later, I weighed 210.

    By April 2004 I weighed 265.

    The entire time doctors tried telling me it was because of what I ate, and that I was lazy.

    The end of April I was admitted into the hospital, and under MAJOR food restrictions (almost liquid diet) I still gained 2 lbs a day. Within a week, I weighed 277. All of a sudden it was a medical problem!

    It took until August for them to figure out I had what's called Metabolic Syndrome X. In short, my pancreas was producing WAY too much insulin, and my liver; not knowing what to do with it - continuously turned the insulin into fat. I had an insulin level of 383, and 20 is what they consider a 'normal high'.

    I weighed 298 the day they diagnosed me.

    I was put onto pills to reduce my insulin in August, and by December I was down to 247, and my insulin was down to 192.

    I was SOOOO excited!

    But now..

    One day I stepped on the scale and instead of losing 2 lbs, I had gained 2 lbs. No problem. From time to time I would gain a couple lbs of water retention, but within a few days twice as much would come off.

    But then I gained 2 more, then 3 more.. etc

    As of today I'm back upto 265, and my insulin is back upto 252.

    The pills aren't working for me anymore, and with this being such an unheard of condition - there's not anymore options for treating it.

    I left the doctors office today with nothing more then an understanding that it will continue to get worse.

    When I was first diagnosed with this, the doctor told me it could have been fatal had I not gotten treatment in time. Today, he just kept saying "We'll try and find something"

    Since my health decided to go into hybernation a year ago, I've been dealing with "it can be controlled" and "it's not a progressive condition".

    Now what? I was told months ago that this is a fatal condition if not treated, and today I'm told I have no other options for treatment?

    I don't know where I'm supposed to go with this.

    Is it possible that I'm just going to have to sit back and watch my body fail one part at a time?

    I just really REALLY don't know how to deal with this.

    ~Amanda
  2. ilovecats94

    ilovecats94 New Member

    Amanda,
    Hon, I had no idea you were gaining like that. It took me 11 years to gain about 80 pounds. I have lost like 13 of them for sure, but it has taken me a year almost.

    Oh, I'm so sorry, Amanda. At least the doctors know what is wrong now.

    You need a second opinion or even a third opinion. Are you seeing an endocrinologist?

    As you can see from my photo, I'm fat too and it is tiring to carry so much weight around. Makes me tired, plus I have had diabetes for 29 years and insulin makes you fat. I take 2 to 3 shots a day of insulin to keep my blood sugar in control. Believe it or not, I only eat dinner at around 7:30 PM. Just one meal a day. I can relate to how you feel about your body. Hope there is an answer for you.

    Sending prayers to you and hugs,
    Faye
  3. pirtpain

    pirtpain New Member

    I can tell you that I have gained 50lbs. in the past 8 months. I can agree with all of those out there with FM
    that our system is going wild on us. I too have been given
    the insight into this syndrome but my insulin, when taken

    has not been that high. I know that I consistantly eat sweets and am constantly hungry & can't seem to stop eating. I find it hard to believe, and I do ? why the drs. that you have gone to seem to feel that there are no

    answers!! This is a crock!!! I would continue to go to other experts that are mentioned in the replies to your post until you get the answer and treatment that you so deserve!! I bought a book called "Syndrome X " and is

    written by Jack Challem, Burton Berkson,M.D.and Melissa Diane Smith. I have not read the book yet, but bought it awhile back. I hope this will be helpful to you. GOOD LUCK!

    Barb
  4. lovethesun

    lovethesun New Member

    That you are having so much trouble.I can do nothing but say a prayer.Hope you find your answer soon,Linda
  5. morningsonshine

    morningsonshine New Member

    This is scary, I encourage you to do your own research, starting with what Wake, gave you.

    You may not be able to count on the dr. to help in time.

    Keep us updated on this please.
  6. mbofov

    mbofov Active Member

    I agree with Morningsonshine - you need to do your own research, you can't just rely on the doctors. I would definitely check out the recommendations others made to look into the possibility of a tumor and to research Cushing's syndrome.

    But beyond that, there are several books out there on Syndrome X - do a search on Amazon.

    Also, cinnamon may help. My blood sugar was creeping up, I'm about 60 pounds overweight and can't exercise due to CFIDS (I crash if I exercise) so was pre-diabetic and feeling very frustrated because I'm careful about my diet. Then I read about cinnamon which helps to regulate blood sugar. So I started taking 3 capsules a day with meals and a year later my sugar levels were in the normal range, and I still wasn't exercising.

    Exercise is important and I would give my eye teeth to be able to do it - I used to walk lots.

    So you don't ahve to sit back and watch your body fall apart, but you're going to have to take charge of your health, and educate yourself and do whatever you need to do to help yourself (e.g., proper diet (I would not ask a doctor about proper diet here), exercise, supplements, etc.) Get some books and read, do on-line research, etc.

    I'm sorry you have to go through this, I know it's hard and scary, but I do think there's hope -

    Take care -

    Mary
  7. Alyndra

    Alyndra New Member

    I thank the people who have responded.

    I've been stirring in all the mixed emotions all day now.

    For Wakemeup, and every one else who recommended looking into Cushings - it's a wonderful idea, unfortunately Cushings and any type of tumor has already been ruled out by multiple tests. That was my doctors firsts thoughts when they realized it was actually a medical problem.

    And Mary, I really appreciate the suggestions, but I have to stay away from anything that will lower my blood sugars. I average at only a 4.0 for my sugars, and that is already to a point that I have to be very cautious about.

    Another problem I have from the Metabolic problems is that my body only holds a temperature of 94.7. I'm considered clinically hypothermic because of this.

    The doctor I'm seeing in regards to the Met-X is the only Endocrinologist that specializes in the condition that's in my area.

    His biggest worry is my other medical problems that are restricting his ability to treat me.

    I have enough food allergies, my dietician felt there was no reason for me to see her. Enough medical allergies that some medications aren't even an option for me. And enough natural/environmental allergies that I'm not able to consider any naturopathic treatment, and so on... I've even had to stop certain supplements because of adverse reactions.

    The specialist I see is in touch with other consulting doctors that specialize in Met-X, and at this point anything else they may want to try will be a blind case study.

    There is a medication my specialist suggested, that I have to decide if I want to try. It's not something proven to be effective, but there IS a possibility that it could work. The downfall to it is that I won't know for 3 or so months if it is really working. In the meantime, my risk for cardiac failure, multiple organ failure, etc. absolutely skyrocket.

    The weight gain used to be my biggest and only concern when I was first diagnosed. I never prepared myself for any of the rest of it.

    I think it might be a good thing that I'm still numb to my lack of options at the moment, because my mind is still telling me that there's going to be a miracle cure.

    The biggest part I'm dreading is having to tell my boyfriend. He gets off work in 10 minutes now, and I KNOW that I'm not going to find the words to explain this calmly in 10 minutes.

    And Faye - I'm always happy to see a post from you. Even on the worst of days you can make me crack a smile. I'll make you a deal.. You NEED insulin, and I have TOO MUCH insulin.. we'll set a date with the donor clinic and I'll give you some! I'd bet I have a lifetime supply for you running through my body right now, and then some!

    For the next little while I think you guys are what's going to keep me in check. There's no one better then the people here to try and figure out these screwed up health problems!

    Again, I'll thank you guys now, and probably another million times before all of this simmers down.

    ~Amanda
    [This Message was Edited on 03/20/2006]
  8. jole

    jole Member

    Hon, I know things are going to go well for you. All the wonderful people on this board will be here to help you get through whatever lies ahead.

    Know you are important to all of us -
    Friends - Jole
  9. mbofov

    mbofov Active Member

    I wish I could have been of more help. I still do think research is very important, you may stumble across something the doctors miss.

    One more thing you might consider is RNA (ribonucleic acid). I had never known you could take this as a supplement, but you can. My doctor recommended it to me last November for energy. He told me that there was a doctor named Benjamin Frank who successfully treated several people who had congestive heart failure in the 1970's using RNA therapy, a combination of foods high in RNA and actual RNA supplementation. My doctor told me to do research, which I did.

    Dr. Frank wrote a book called Dr. Frank's Anti-Aging Diet, which is out of print but I got it on-line used from Amazon. The book is very interesting, and talks a lot about a high-RNA diet and the success he had in treating various conditions. Dr. Frank did not know about chlorella, which is about the highest natural source of RNA around. But chlorella is very de-toxing so I can only take it in small amounts.

    Supposedly the RNA can help with many degenerative diseases, including diabetes. In addition, it can help with body temperature, I think basically helping to modulate it so that people can withstand heat and cold better. I've been taking it for about a month, and I think my energy is a little improved.

    My body temperature is generally 96 to 97. At the doctor's last week it was 97.8, which it never gets to unless I'm sick, and I wasn't at the time. Today I checked it and it was 97.7. So, it may be raising my body temperature, which would be a good thing. Of course yours is much lower, but maybe the RNA could help.

    My doctor told me to take 500 mg. twice a day for 2 weeks, and then up it to 1,000 mg. twice a day. I'm still at 1,000 mg. a day because I'm taking a special chlorella supplement which is very high in RNA.

    In doses over 3,000 mg. a day it can lead to high uric acid levels and kidney stones but my doctor said that at 2,000 mg. a day it's safe.

    Anyways, it's something you could look into. I'm very sensitive to meds and have had no adverse reaction to the RNA.

    I've been taking Nature's Life brand RNA/DNA from the health food store, three 324 mg. tablets (which is almost 1,000 mg.) a day with food.

    Oh, one more thing - the RNA is actually supposed to make your skin look younger, in addition to everything else - actually diminishign wrinkles and age spots, etc., sort of just rejuevenating the whole body.

    It's interesting to read about if nothign else.

    Take care --

    Mary

    Mary
  10. lenasvn

    lenasvn New Member

    Here is a nutritional company from my home country Sweden(NOT trying to advertise!) that sell a product for this very problem- syndrome X. It might be worth a dry. They have a seller company in Tampa, FL. I wish I could do more,,

    Many hugs

    ://www.vaxa.com/300.cfm

  11. ilovecats94

    ilovecats94 New Member

    Amanda,
    I have the insulin, it is just I have diabetes type 2. Meaning my body doesn't know how to use the insulin and I'm insulin resistant. Probably why I'm fat. I know then how does my body know how to use the insulin I inject? Don't ask me, I just do it and take the blood tests and check the numbers.

    I'd rather be fat than obese. I hate that word. Too bad we aren't the size of little Qwanto. lol

    Speaking of insulin, it is time for me to take my 52 units of Novolin N.

    But I do have to pay for my insulin. So if you'd give me some free, I'd pay you $10 for each 10 ml you give me. lol

    It's diet soda time.... lol

    I was a good girl tonight. I didn't eat any junk and all I had was Tums and Pepto Bismol for the GERD I have. I had to lay down after dinner and that is a no no.

    Now I have to stay up some so I can go to sleep if that makes any sense. I'm sleeping on 3 pillows now, it's a miracle I don't wake up with a stiff neck, but it does help the GERD.

    Oh well this isn't helping you lose any weight. If you could weight train that would build muscle and you would lose fat that way. That is how I lost a lot of weight prior to FMS. But I can't weight train anymore and I highly doubt you can either. I use to do step 2 days a week and low impact aerobics 2 x a week.

    Can we just all go back to 1993 or something? Then when I find out I had FMS in 1996, I would stay on a strict diet and never gain a pound back then. :( If only and if only...

    Take care of yourself and I think everything will be okay. Too bad we couldn't laugh ourselves thin. lol

    Love,
    Faye =^,,^=

  12. painandagony

    painandagony New Member

    i am so sorry you're going through all of this. i don't even know what to say....but you will work through it somehow. i've been gaining a lot of weight (uncharacteristically) too, so I will have to keep an eye on it and keep bugging my doctors.
    thanks and hang in there
  13. kch64

    kch64 New Member


    you need to get on a low carb diet right now.

    No sugar, starches or breads. Meats and veggies only.

    The Southbeach diet or Atkins would be good. Southbeach is easier.

    Let us know how you're doing.

    Kendra
  14. Cromwell

    Cromwell New Member

    For sure is required here. I would not just go wiht this one opinion.

    There MUST be a center for metabolic ilnesses here in the USA.

    I recall something about that program too. Also the MRI sounds like a good idea.

    Good Luck, there has to be an answer here.


    Love Anne C
  15. kimfibro

    kimfibro New Member

    I hope telling your boyfriend goes well. it's his support you should get in return.

    "Google" everything you can think of. you've got your computer with a world of medical sites on it and like everyone has said, do your own research.

    With a combination of your research and the advice from your doctor, you should get a clearer picture. I also agree that you need more than one opinion from one doctor!

    Keep your chin up, do more homework. you'll feel you're accomplishing a lot. you WILL be accomplishing a lot.
  16. mme_curie68

    mme_curie68 New Member

    Hi -
    What a nightmare for you. I am so sorry to hear of your troubles. The National Institutes of Health US has many clinical trials listed for Metabolic Syndrome X - perhaps looking through them, you or your doctor may find additional medications that are being studied for treatment of this

    The web address is

    www.clinicaltrials.gov

    just type in "Metabolic Syndrome X"


    Hugs,
    Madame Curie
  17. bunnyfluff

    bunnyfluff Member

    Here they are just caling you "fatso" when you are having a real problem!! How typical of the medical profession! I am in a similar predicament. I am borderline Met-X right now, and CFS as well as FMS, so now exercise makes me feel like vomiting for about 2 days- literally! It's horrible- I used to ride my bike 5 miles 3 or more times a week and felt so much better, but now I'm not sure what to do.

    I eat very little- when I look at what they call for on diets I laugh! I eat about 1/6th as much food as they want you to eat, and yet I am still gaining. It is upsetting, depressing and frustrating all rolled into one.

    I was never larger than a size 6 my whole life- I weigh close to 180 lbs now! Everyone acts like you must be some sort of secret eater or something! Like when I was so sick from undiagnosed Celiac's and weighed 110 lbs they thought I was just an anorexic. Go figure.
    [This Message was Edited on 03/21/2006]
  18. smiffy79

    smiffy79 New Member

    i'm sorry sweet heart thats a major bummer.
    i agree with the others, get some research of your own done and search for others with the condition.
    an answer will come up for you hon.xxx
  19. Alyndra

    Alyndra New Member

    Seriously.

    Every route of options I'm finding has a MAJOR road block in it for me.

    lenasvn - I checked out the website, and the company lists a number of medical conditions of which if you have, you shouldn't use their product. Unfortunately, I have 5 of the things that they list.

    An extra thank you for the people who recommended the site for clinical trials. I checked it out, but at the moment there aren't any studies available for Metabolic X that I qualify for. All the Canadian ones I found require someone at least 30. All the others were American, that being Canadian; I don't qualify for.

    Just the same, there's no clinics for this in Canada. US isn't an option for me.

    I'll definately keep checking the site though.

    And here's the one even I have to laugh at...

    kch64, a low carb diet would be WONDERFUL if possible. My food allergies though include meat, fruits & veggies amoung other things. Breads, rice, pasta etc are the only food options for me

    I swear, I must have REALLY done something horrible in a past lifetime to have this much bad luck now!!!

    I'm still ripping the internet apart trying to find SOMETHING I qualify for.

    On the other hand, I told my boyfriend when he got home from work last night that the pills weren't working anymore. I was hoping I wouldn't have to explain anymore then that, but he insisted to know all of my "options". Of course he wasn't very happy to see that my options list was empty at the moment.

    I'm almost to the point where I wish this was all because of a tumor. At least that could be removed. Afterall, I'm pretty sure removing my stupid pancreas isn't possible.

    In the meantime, I really thank all the people for their prayers & best wishes. It's hard to talk to my family about it because they all shutdown when an unpleasant topic is brought up.

    As harsh as it sounds, ignorance is their bliss.

    I'm definately not giving up, but I have to admit - it's really more frustrating then I ever expected!

    I'll keep you guys updated, I'm hoping it won't be too long until I have good news to share.

    ~Amanda
  20. lenasvn

    lenasvn New Member

    Bless your heart, Amanda, I am so sorry about this situation. I wasn't paying attention to additional conditions you had, please forgive me.

    I can't imagine how this must be for you, and the frustration with no meds to recommend and ignorant docs.

    I will keep searching about this syndrome, reseaching is one of my addicitons anyway. I'll let you know if I find something good, although I doubt it, you seem to have done so yourself.

    Keep us updated

    ((((hugs)))