Review: 'Through the Shadowlands’ describes Julie Rehmeyer's ME/CFS Odyssey
I should note at the outset that this review is based on an audio version of the galleys and the epilogue from the finished work. Julie Rehmeyer sent me the final version as a PDF, but for some reason my text to voice software (Kurzweil) had issues with it. I understand that it is...
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weight Gain

Discussion in 'Gastrointestinal and Urinary' started by kat0465, Jun 24, 2010.

  1. Athene


    Just thought I'd also say, I have periods when I am so thin I look quite revolting, and others when I just blow up and up. Usually thinness is the problem but lately I am balooning.
    I have absolutely no control over my weight. It has nothing to do with how much or what I eat, or my activity level.

    Some info that I know:
    Your hormonal balance affects accumulation of fat, and in women with CFS this is very unstable. I think this is why the men are usually the ones who get really thin.
    With CFS your thyroid can be low periodically. Mine has varied notably from day to day, something which most doctors swear is impossible. You can also develop peripheral thyroid resistance, so your thyroid measures normal but your body tissues do not respond to it (same concept as insulin resistance.)
    Your liver helps burn up fat by creating ketones and when it is in a very ill state it cannot do this, The fat stays and you have no energy. Failure to mobilise fat for energy in this way is what many people call "slow metabolism".
  2. kat0465

    kat0465 Senior Member

    ya know, i never thought of it that way. Makes a lot of sense Tammie, and i do have awful PEM. i too think that the thyroid thing plays a big part also, i told my doc i feel like im trying to swallow a golfball at times. but she says my thyroid is ok ( i Have my doubts)
  3. Victoria

    Victoria Senior Member

    Melbourne, Australia
    Just skimmed through this thread, so please excuse me if I'm repeating what some else has said.

    My Dr & I have agreed it's my metabolism that has slowed down. I was model thin when young, and I still have a thin face & arms. But my torso has ballooned in the last 20+ years.

    They say that if you don't eat enough, your body goes into starvation mode. That is, it stores fat, believing that it will need that fat to keep you alive. Hence the theory that dieting or cutting your food intake does not work for losing weight.

    You need to eat 3 sensible balanced meals (or 6 sensible small meals) AND do regular exercise. You need mental & physical exercise to stay fit.

    I can lose about 3-6 pounds by eating a very, very high protein diet, but that's all. I haven't weighed myself in months, I just go by how well my clothes fit.

    When I used to be very fit & toned around 2003, I weighed even more. My "fitness trainer" neighbour said that muscles weigh more than fat (which is why my superfit, muscled body at that time was heavier).

    Now, I have not only flabby thighs & stomach/hip/bottom from lack of fitness, but in retirement, I seem to be even worse in some ways. Except for this last week when I have been unwell, I have started doing even more walking (slow walking so I don't get chest pain). I have noticed my stomach has gown down a little bit in recent months.

    If you follow the theory of "Your Body speaks your Mind" by Deb Shapiro, then I can equate some of my fat deposits as repressed anger. My Mother also put on lots of weight in her late thirties.

    If I was fat all over, then I wouldn't mind, as "fat" sized clothes would fit, but my odd, non stock sized body is extremely hard to buy clothes for (so I rarely have bought clothes in the last 15-20 years).

    I wish I was all thin OR all fat. The way I have stored stomach fat in the last 20-25 years means I always look pregnant (even at the age of 56).
  4. Hip

    Hip Senior Member

    Weight gain on the stomach (abdomen) can be caused by low growth hormone output from the pituitary gland.

    In fact, many of the symptoms of human growth hormone deficiency are quite similar to those of chronic fatigue syndrome. Makes me wonder whether certain people with CFS may have some symptoms due to growth hormone output that is a touch on the low side.

    Symptoms of growth hormone deficiency in adults:

    Anxiety and/or depression.
    Baldness (in men).
    Decrease in sexual function and interest.
    Decreased muscle mass and strength.
    Difficult to concentration and lack of memory.
    Dry, thin skin.
    Elevated triglyceride levels.
    Fatigue and/or tiredness.
    Heart problems.
    High levels of LDL (the "bad") cholesterol.
    Insulin resistance.
    Lower tolerance to exercise.
    Reduced bone density, making you more susceptible to developing osteoporosis.
    Sensitivity to heat and cold.
    Very low energy levels.
    Weight gain, especially around the waist.
  5. anna_o


    Yep, if I eat more than approx 1200 calories per day, I gain weight. If I eat a moderate amount of carbs, I pack on the pounds even faster. I have no appetite really, so I eat small snacks every couple of hours to keep the CFS hypoglycemic-type symptoms at bay (could care less about food actually). Nothing I do seems to help me lose weight even though I consume low calories per day. I am not able to exercise at this point beyond a low/mod pace walk, and I really think exercise is the key for me to get my metabolism going again. Hopefully I'll be up for that again in the not-too-distant future.
  6. Nielk


    I did gain weight around my stomach and have many of the symptoms you listed. Is there a way to check GH levels?
    In addition, I feel like I am retaining fluids. Does anyone else have that?
  7. November Girl

    November Girl Senior Member

    That sort of fits with my experience. The only time I ever lose weight is when I'm on a nice plateau which allows me to consistently do a little bit without developing PEM.

    In the past year, I've seen several old photos of myself on FaceBook. It's amazing to me now to see how thin I was all of my life until I developed CFS, which is when I started to gain weight. Of course, I was only 19 then, but it's still hard to realize I used to be so slender.

  8. ldhunter


    Same problem here...Had my leptin hormone checked and it is high. I think we crave carbs to produce energy, but our metabolism is completely out of wack. I think our bodies go into protective mode, storing fat for possible needed energy. I eat a pretty healthy diet, and still gain weight.
    beaker and GcMAF Australia like this.
  9. justy

    justy Donate Advocate Demonstrate

    Thanks for this simple way of putting it. I agree with your theory about craving carbs for energy. I have messed up mitochondria from testing and always want to eat to feel more energetic. I lost a lot of weight when i was first ill and now have gained tons -and continue to do so despite not changing ym diet. Its so depressing and im sure being overwieght doesnt help my illness. Last time i actively tired to lose weight i gained another 2lbs!
    beaker and GcMAF Australia like this.
  10. Calathea

    Calathea Senior Member

    I put on a small amount of weight gradually, then five years ago I suddenly started putting weight on rapidly. There was no obvious reason for it, I was eating the same and exercising more, if anything (just started a new relationship). I also developed PMDD at the same time, whcih I've been told by several doctors may well have been triggered by the oestrogen in the excess fat.

    I started dieting 8 months ago, kicked off by temporarily losing my appetite on amitriptyline. I'm simply doing calorie counting, losing about 1lb/week, and judging by this forum, I'm lucky to be losing at all. I'd particularly put on weight around my abdomen, and I'm noticing that despite being very close now to the weight I was before, I still have plenty of abdominal fat. On the other hand, the weight has been melting off my hips much faster, I don't remember being this slim-hipped before. I've just about managed to get into the "high risk" category for waist-hip ratio well after getting into the healthy BMI range, I must have been way off into the "extreme risk" before I started measuring. We all know that abdominal fat is more dangerous and more likely to cause hormonal problems, but there's a bit of research out there about hip fat actually being protective, though I can't remember how it worked nor whether it was actually decent research. I just found it interesting since I have noticeably more abdominal fat and less hip fat than I did at the same weight years ago, before I put on weight.
  11. mellster

    mellster Marco

    San Francisco
    If you can exercise and are exercising, weight gain is not uncommon and should not be dreaded. I think one of the biggest fallacies is that exercise causes weight loss. Unless you are really obese and have a lot of fat to lose chances are that your muscle gain will literally outweigh your fat loss - and that's a good thing.
  12. Athene


    Can I mention vitamin D?
    I started taking it to boost my immune system and I lost 12 pounds over about 6 to 8 weeks, without changing my diet or exercising. I found out that it is literally impossible for the body to burn up stored fat for energy if you do not have enough vitamin D. And the latest research is showing that the old definition of "enough" vitamin D was actually far too low.
    beaker likes this.
  13. *GG*

    *GG* senior member

    Concord, NH
    I wouldn't see why not? I take over 10,000 IUs per day and have my blood levels checked periodically. I am trying to keep my level above 70.

  14. GcMAF Australia

    GcMAF Australia Senior Member

    Hi, i hope this helps
    According to Dr Lewis, in this condition "insulin resistance decreases and the appetite hormones grelin and leptin are altered. Therefeore need to eat more to satisfy the hunger"
    I hope i have written this correctly.
    Vitamin D levels are altered
    Best wishes
    justy likes this.
  15. richvank

    richvank Senior Member

    Hi, all.

    For what it's worth, here's why most PWCs tend to gain weight and why the weight gain is so "stubborn" and difficult to take off, according the the Glutathione Depletion--Methylation Cycle Block hypothesis (I also discuss weight loss in other cases below):

    The problem is indeed in the mitochondria, and in particular, in the Krebs cycle, which is in the mitochondria.
    Because glutathione is depleted, there is a partial block of the enzyme aconitase, which operates early in the Krebs cycle, to convert citric acid to cis-aconitic acid and isocitrate.

    Both carbohydrates and fats must enter the Krebs cycle as acetyl-CoA, which is converted to citric acid. The problem in most cases of ME/CFS is that the partial block at this point causes the citric acid to be exported from the mitochondria and to go into the synthesis of fatty acids, to form stored fat. This causes weight gain when either carbs or fats are consumed at rates higher than the dysfunctional mitochondria can burn them. And the reason the weight gain is stubborn is that the mitos are not able to burn off fat at normal rates because of this same partial block.

    This is the reason why many PWCs do better on a high-protein diet: Protein is broken down into amino acids. These can be fed into the Krebs cycle beyond the partial block, so they can be used as fuel. In order for this to happen, though, the person must have high enough levels of several of the B-complex vitamins, because these are needed to process the amino acids.

    When glutathione becomes depleted, it also takes down B12 function and puts a partial block into the methylation cycle. These effects produce more problems for the mitochondria, including depletion of carnitine, coenzyme Q-10 and phospholipids, all of which are needed by the mitochondria for normal function. The depletion of glutathione also allows buildup of a variety of toxins in the mitochondria, which block enzymes and transporter proteins. The levels of essential minerals, such as magnesium and calcium, also become abnormal.

    What is the solution to this problem? Ultimately, glutathione must be raised back up to normal. We have found that in order to do this on a permanent basis, it is necessary to lift the partial block in the methylation cycle, and that's what the simplified methylation protocol is designed to do. It is discussed elsewhere in these forums.

    What about the people who lose weight and have trouble gaining it back? In most cases of this in ME/CFS, the problem is in the digestive system. There can be parasites, dysbiotic bacteria, or other pathogens. Some people have celiac disease. Others have serious food allergies. Correcting these problems requires comprehensive stool testing and then targeted treatment for whatever the problems turn out to be. If the condition of the digestive system becomes too seriously dysfunctional, it can be necessary to do intravenous feeding via a picc line while the gut problems are treated. It is very difficult to get this done, and it carries its own risks, such as infection.

    I hope this helps.

    Best regards,

    justy likes this.
  16. user9876

    user9876 Senior Member

    Insulin resistance can be associated with polycistic ovary syndrome and if this is the cause of insulin resistance then it gets worse as you put on weight. Its treated with Metformin.
  17. hurtingallthetimet

    hurtingallthetimet Senior Member

    hello kat...i can really unfortuantley relate..i use to exercise ALOT and was very active in every way and very fit and thin thne i got ill and it hurt to much and too much fatigue to exercise as much plus i was put on seroquel to help with insmonia and depression and gained a HUGE amount of is very depressing...ive lost a little of it...weaning off the searoquel but it is hard dealing with side effects of that right you mind me asking what the name of the shot you are taking is? is it hte hcg shot? mixed with b/12?

    hopefully you have a good suportive family and social life was my work...i miss having a job so badly becuase i dont have a social life anymore...and family i love them but they some..such as my mom and sister wehn they see me make very hurtful remarks about my weight...i saw them recentely and had lost 25 lbs of the giant amount id gained from the seroquel...not one word was said to me personally about losing the 25 lbs...but i overheard them talking about how i looked like i lost weight and looked better...but if id gained a pound they would have pounced on it...not sure why family do that..

    .when they had seen me when i first gained all the weight they had made very hurtful jokes about my family member {my somewhat estranged father} even said to me "boy you sure did get fat didnt you" others would say "but you use to be so thin" one even asked how much i weighed out of blue not even talking about anything that had anything to do with health, weight, nothing on the subject..and then rudely guessed a HUGE hurtful weight that was even alot more than i weighed...who out of thin air when the converstaion had nothing to do with health or weight...tells someone youve gained alot of weight i bet you weigh :."and say a giant number" very cruel and evil....

    getting off the seroquel and cutting out sweets as you mentioned has helped me lose the 25 pounds...i am on pain medctiations vicodin and morphine the morphine i feel has been a blessing other than causing severe constipation i have ibs also...but it helps me to walk around neighbourhood with kids or hubby some and i really miss walknig and nature...
  18. Sallysblooms

    Sallysblooms P.O.T.S. now SO MUCH BETTER!

    Southern USA
    Have you had all of your hormones checked? Being on Bio Identical hormones has been great for many reasons for me. I get all hormones checked twice a year. I take Estrogen and Progesterone gels, Thyroid, 7 Keto DHEA, and others.
  19. mtnbibliophile


    Nielk, I don't see anyone who answered your question about getting your human growth hormone levels tested, so I'll reply. Yes, it can definitely be done if you go to a good endocrinologist who knows that to get a meaningful result, blood has to be drawn periodically for a few hours while you are fasting. This is not something to go to your PCP and probably not even your CFS specialist about - ask them for a referral to an endocrinologist. I LOVE my hgh - it definitely improved my body's ability to heal and repair itself. All the supplements in the world won't do you much good if your hgh is as low as a 90-year-old's. I can only take limited doses, however, because I get a major craving for sweets if I take any more. It's a good idea to remind your endocrinologist, as it is with most non-CFS specialists, to start you out on a subclinical dose, and build up from there if appropriate.
    Zensational likes this.
  20. Zensational

    Zensational Senior Member

    Orlando, Florida
    I am happy you love the HGH. Is it the injectable or the spray homeopathic version. Please tell us how much it costs and does any insurance cover it? I was denied any hormone replacement by endo because I'm over 65 even though I have pituitary that is partially empty sella caused by EBV.
    I'm looking into other options.

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