Can't stop gaining WEIGHT! ...Eat low carb, gluten free, organic, tons of water etc etc...

Discussion in 'Fibromyalgia Main Forum' started by happycfs, Jul 24, 2013.

  1. happycfs

    happycfs Member

    Hello all friends,

    I have always been a very steady weight for my entire adult life, which I was very happy with. I am a man, in my thirties. Most people called me thin and I had a decent amount of muscle mass. I was doing well in that avenue (unlike many other avenues due to this illness). I started slowly gaining a couple of pounds per month a few years ago, and every time that I brought it up with a doctor, they always blamed it on getting older and my metabolism slowing down. I just do not agree with this! Now, I am very noticeably overweight, to the point that people are saying that they do not recognize me! I was normally around 155. Now I am around 230 pounds. I have stretch marks all over my body and it is getting unbearable to look at myself, due to the fact that I am now having a hard time recognizing myself. This is unbelievably depressing, and even scary because of other health risks that weight gain adds. Here are some important points...

    *I am totally housebound now due to my overall pain and fatigue issues. Though, I have had so much blood work at this point -- Everything is within normal range, besides slight bordering factors, which are as follows: My testosterone is low for my age; my adrenals are low, with high cortisol at night and low cortisol in the morning (opposite what it should be); and my thyroid seems to be "slightly sluggish" and on the border of hypothyroid.

    *I have had very severe and sensitive reactive hypoglycemia for a couple of decades now, ever since I first became very ill.

    *I am more active now than I was a couple of years ago, and yet, I am heavier now than ever. I am able to at least stretch everyday.

    *I have NO appetite, and I have to force myself to eat everyday. Though, when I do eat, I usually eat something like a salad and a sandwich, 90% organic most days. Plus, I drink only water and some almond milk. I do drink a lot of Pedialyte because of my chronic dehydration too.

    *I do not take any pharmaceutical meds (way too sensitive) and I do not smoke, drink coffee, and certainly no alcohol whatsoever.

    ...I made a food diary and went to one doctor who said, "I know your problem! Trust me, eat slightly less food everyday" ---Then, about a week or two later, I saw a different doctor who said, "I know your problem! Trust me, eat slightly more food everyday!" I am not kidding here. Both doctors were so incredibly adamant, and yet, they were both wrong. I really have done every-single-thing I can think of to do. Still, my body grows larger on a daily basis. I am getting scared that I will just have a heart attack or an aneurysm one day if I don't stop this weight gain now. I know that many people with ME/CFS usually gain weight, but not usually 80 pounds.

    Any thoughts, empathy, advice etc?? Thanks, everybody! (This really is the best forum in the world!!!)
    elmay01 likes this.
  2. IanH

    IanH Active Member

    happy cfs: What nutritional supplements do you take?

    You cannot gain that much weight without eating more than your body needs? Given your low activity levels you will need little food. since you have "NO appetite" it wont hurt to eat very little at all. Don't force yourself to eat, your anorexia is not of that type. Lack of appetite is a symptom for some people with ME/CFS and yet others have an increased appetite. A survey of our patients with ME/CFS showed that most are overweight and their weight gain occurred after they got ME/CFS. Low energy output sometimes increases appetite even though logically you would think it should lower appetite.
  3. Mikie

    Mikie Moderator

    If you are not hungry, why not try eating more smaller meals, like grazing. For me, it doesn't much matter what I eat if I'm not active. That's when I put on weight, when I got CFIDS and could no longer work out. Ian's question about supplements is an important one. It may hold some answers for you. I hope you see his response and let us know what else you are doing.

    Keeping weight in check is so important. Before I got sick, I did in-home sales of Medicare insurance. So many of my clients were in a downward spiral. Their weight was so hard on their joints, they could no longer be active and most had developed Type II Diabetes. Heart disease also seems related to weight gain. Of course, with our illnesses, we may no longer be able to be active so weight control can be very, very difficult for us. Good luck to you.

    Love, Mikie
  4. happycfs

    happycfs Member

    Hi guys! Thank you for your replies. .... Well, I take a whole slew of supplements. Though, I do 'rounds' now, where I go on and off for a month or two at a time with many of the supplements. Otherwise, I just get too nauseous and the supplements end up hurting more than helping. But, all that said, my main supplements are D-Ribose, Alpha Lipoic Acid, NAC, Acetyl cysteine, Isocort (for adrenal fatigue), Vitamin D, fiber, and a vitamin powder mix (I was taking Dr Jacob Teitelbaum's 'Energy Revitalization System' for about two years. That proved to be just too disgusting to take. I gagged everyday on it. So I switched to Vega One nutritional shake.)

    I actually have eaten so little that I have had convulsions, even seizures and fainted on different occassions, so I have to be careful about that now. I often get severe headaches, neuropathy and dizziness, from not eating enough. (People often question this, but I assure you, after dealing with this every single day for over two decades, I have learned this very well about my body. Many of my symptoms are directly affected by my food intake, or lack thereof.) So, I really do make / force myself to eat now, and I try to space out small meals every few hours in the day.

    I had been diagnosed with a pituitary tumor (prolactinoma) years back. My prolactin levels are normal now, but who knows, I might have a sliiight hormone imbalance. I am thinking of possibly looking into sub-clinical hypothyroidism.. But I don't know. This is rough.

    I really do appreciate your input so much!!! Thank you for your support, and your understanding!
  5. Nanie46

    Nanie46 Moderator

    Hi happycfs,

    Keep in mind that the 2nd ingredient in Pedialyte is dextrose, so you may be getting a fair amount of sugar daily. I think there is 25 g of dextrose per liter.

    You may really benefit from a good hormone Dr who can help you resolve problems with your adrenal fatigue and get your cortisol balanced so it is higher in the a.m. and lower at night, and boost you out of that near-hypothyroid state, adjust your testosterone, and check your pituitary status.

    I found out 4 years ago that I had chronic infections causing my symptoms. My lyme literate MD tested my hormones as part of my treatment and prescribed bioidentical hormones. Those hormones made a big difference in how I felt. Slowly, my fatigue, insomnia and brain fog resolved.

    I avoid processed sugar (or high fructose corn syrup) in any food or drinks and now I don't get hypoglycemic anymore. Avoiding sugar also helps with pain. I also avoid sugar substitutes, dairy, soy and gluten.

    Perhaps a Naturopathic Dr or Integrative medicine Dr would be very helpful since they tend to think outside the box, unlike many conventional Dr's.

    I recommend eating many greens, including kale, so that your mitochondria will be able to produce energy.

    I hope you feel better and get some answers soon.
  6. happycfs

    happycfs Member

    Wow- great stuff here!! I do drink almond milk everyday, though the kind that I drink is organic and unsweetened, so the carbs are pretty low. FUnny, the coconut milk that I tried was too high in sugar! ;-) Maybe we need to swap our milks around. ... I will definitely try searching for more coconut milk. (I know coconut is super healthy, even for blood sugar balancing)

    As for the dextrose-- wow!! I never even knew that it was a form of sugar! Though, I must say, I am incrediblyyyy sensitive to carbs / sugars, and I've never felt any blood sugar reactions from it. I do drink it about every other day and I have felt a lot of improvements from it. But still, I will definitely research this further!! I am working of supporting my mitochondria a lot as well. ( tries the diet from the book 'minding my mitochondria' but it was too intensive for me.) I eat a good deal of kale. In fact, I drink it juiced about once or twice per week, along with spinach and parsley. (yuck! --But I often feel a tiny bit better after drinking it.) Plus the D-ribose is huge for helping mitochondria as well.

    I have been working with a Naturopath, scraping by to pay for him whenever I can. I will bring up a lot of your suggestions!! For now, I will start researching on my own.

    Truly, THANK YOU, everyone!! I just love your comments, and support!!! Any and all thoughts are certainly welcomed!! ..Thanks!!!
  7. gb66

    gb66 Well-Known Member

    Happy CFS. Have you had your blood sugar tested recently? Sometimes diabetic and pre-diabetics will have episodes of low blood sugar, hypoglygemia. That's where I would begin. You may be diabetic, or pre-diabetic. This can effect your appetite and your weight.

    You might try a moderate carbohydrate diet. Check out the diets on the board.
  8. IanH

    IanH Active Member

    The other sugar you are taking, Ribose also has about the same caloric value as dextrose, both only slightly less than glucose.
  9. Windytalker

    Windytalker Member

    There's a mistaken belief that being gluten-free means fewer calories. Gluten substitutes "can" be high in calories. I prefer to find substitutes that use bean flour more than rice. But, is sometimes difficult to find.

    I used to believe that my being overweight was a negative. A nurse once told me...if you feel well, don't worry about it. For me, feeling well IS more important. Too much emphasis is put on how we look these days. The most important thing, IMHO, is to be healthy and feel well.

    Listen to your what it's craving (I don't mean simple carbs but don't deny yourself a treat once in a while) and eat when you're hungry. If I delay eating, I overeat at my next meal.

    Personally, I can't exercise (won't go into details why), but we do need it. Even a small amount is beneficial.

    Again, JMHO...
  10. happycfs

    happycfs Member

    Hey guys-- more great stuff! .......I have had severe blood sugar drops almost daily since I was a teenager. I used to use a blood sugar tester, like a diabetic. It never went very high, but it sure dropped low. (Some of those compassionless docs who doubted me looked foolish when I showed them the proof that I had recurring low blood sugar: reactive hypoglycemia.) So, I actually test it fairly often now. ...Also, I have found the same thing about gluten free. Have to be careful, because it is often higher in carbs than the other stuff.

    I do feel that the D-Ribose has been one of the few things that has helped me. So I cannot stop taking it as of yet. But I do take the sugars into account for that. I also believe that we need to listen to what our bodies crave, at least to a certain degree. I have had some difficulties there because it is verrryyy rare that I ever fully enjoy what I eat. I eat now just for survival. I am usually nauseous and without any appetite. I know that I am more extreme than most people, being that I am completely housebound with some pretty severe symptoms. But this is where my body is at now. I still am not sure why I have gained THIS much weight. I am very seriously looking into all of your suggestions though! So we will see what happens next. For now, I think I will switch to a low carb coconut milk. That's an easy start. Plus, if I can, try to cut back a lot of Pedialyte (it helps me feel a LOT better when I get especially ill. so, we will see how I can navigate that.)
  11. kbak

    kbak Member

    It's very possible to be eating right and still gain weight if your hormones are off. If your thyroid is off, you can starve yourself and not drop a pound, not to mention your other hormones. I would say see someone , maybe an alternative doc, who is willing to look at your hormone levels and treat them accordingly. Men usually lose weight way easier than women, so there is something going on.

    Wish you luck!
  12. IanH

    IanH Active Member

    Sorry kbak but I must counter this statement: you can starve yourself and not drop a pound.
    Maybe for a week or so, but beyond that it is impossible to maintain weight in starvation. Irrespective of hormones no adult can maintain their body weight on less than 5600Kcal (25,000 Kj) weekly, even lying down all day.
    Also men lose weight more quickly than women because they have greater muscle mass and are usually heavier anyway, not as some believe: something to do with hormones. Administration of testosterone can assist women and some men to lose weight but the increased heat output due to the testosterone is minor. The main difference after testosterone administration is in exercise and motivation to exercise. Testosterone allow you to exercise more without feeling fatigued or "ill" as a result of the exercise, the most common complaints of obese people when they exercise.
  13. happycfs

    happycfs Member

    Thank you again for your further input! I just appreciate every single bit. I do think that kbak was being somewhat facetious with the exact use of the word 'starve', and I understand the point. I do also appreciate and understand your clarification too, IanH! ...All good stuff! Thank you so much.
  14. kbak

    kbak Member

    I'm glad you understood I was not being literal :)
    happycfs likes this.
  15. razorqueen

    razorqueen Member

    I would check out My Fitness Pal on line and they have an app as well. I never thought I could lose weight and had actually considered weight loss surgery. I finally got to the point that I new if I wanted any kind of future I needed to try. I went on MFP, and I am now logging everything I eat and logging my exercise too. Yes, I thought I couldn't exercise either. I started walking of short periods of time on my treadmill and have progressed to riding my new bike, gardening and yard work! Things I never in a million years thought I would ever be able to do again! I am proud to say that I have lost 46 lbs since the end of Jan/13 and hope to lose at least another 40-50lbs!

    There is a support group there as well for FM. My FM pain is still there but I have a lot more energy then before and if I start to flare it doesn't get near as bad nor for as long either.
  16. Mikie

    Mikie Moderator

    Any ingredient which ends in "ose" is sugar in one form or another. Starving actually causes the body to go into survival mode and can cause weight gain. To lose weight, one MUST eat. It would seem to me that a full workup by an endocrinologist would be helpful. Good luck.

    Love, Mikie
  17. happycfs

    happycfs Member

    Just a quick update... I have been trying and trying so many things, and I am over 250 pounds. I am beyond depressed and embarrassed. I am SO. UNCOMFORTABLE. IN. MY. BODY! ...I have never ever looked like this in my life, and I cannot move as freely. Everything is a thousand times more challenging. I truly am feeling desperate.... And defeated.
  18. RadioFM

    RadioFM Active Member

    Hello Happycfs,

    What are the possible contributing factors to your unexplained weight gain?

    I know you have a history of pituitary tumor (prolactinoma) in the past. I would investigate the pituitary gland more as tumors or cyst can effect the thyroid hormone and cortisol production as well as increase IGF - 1 levels.

    I feel that you should take guidance from an well informed endocrinologist who can assess you first hand and plan further workup if deemed necessary.

    Please review the links below.

    This information is not intended to be medical advice. The information is meant to inspire and motivate you to make your own decisions surrounding your health care and dietary needs. We need to challenge ourselves and ask the right questions and never give up the fight!
    Last edited: Oct 2, 2014
  19. happycfs

    happycfs Member

    Thank you for your input. It means so much. Thank you...
  20. Gaining weight slowly, making it hard to notice until it's a big problem.
    You can make small changes is lifestyle for a small change in weight, rather than feeling like you have to make a big change in lifestyle so you can lose a lot of weight.
  21. elmay01

    elmay01 Member

    You are not alone. I started gaining weight the first month I got unwell following mono, 27 years ago. Have doubled my weight since being healthy. I read somewhere that this affects 15% of CFS sufferers. I constantly have to watch everything i eat. I keep hoping that something will be found that helps. I can not exercise without going to bed for a couple of days to a week. Constantly trying everything I can think of. If I discover anything that works, it will be on this site. Never had a problem with weight before getting unwell and have tried the sugar free, carb free , dairy free diets with very little results. It is really depressing looking in the mirror and as equally depressing wondering what to eat. Dr doesn't think it is my thyroid either. Try to remember, its what you are inside that counts. hopefully, one day we may see our real selves again.