Tingling body precursor to hunger

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itisbeckx
itisbeckx Posts: 13 Member
in Sleep, Mindfulness and Overall Wellness
I get patchy tingling and pain in my extremities, limbs, neck, face, and tongue as a precursor to hunger. It is paired with nausea, dizziness, and brain fog. The only way to dissipate these symptoms is to eat enough and regularly. This has caused me to gain more than 10kg over the past year (current BMI low-mid 20s). If I ignore the symptoms and try to live through them, it gets to the stage where I feel like I need to go to the emergency department as I cannot function normally. All my blood tests and my heart, endocrine, and neurological checks are normal. I have a history of anorexia nervosa. Any ideas as to the cause? I have no quality of life with this problem.
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  • BartBVanBockstaele
    BartBVanBockstaele Posts: 623 Member
    edited November 2022
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    itisbeckx wrote: »
    I get patchy tingling and pain in my extremities, limbs, neck, face, and tongue as a precursor to hunger. It is paired with nausea, dizziness, and brain fog. The only way to dissipate these symptoms is to eat enough and regularly. This has caused me to gain more than 10kg over the past year (current BMI low-mid 20s). If I ignore the symptoms and try to live through them, it gets to the stage where I feel like I need to go to the emergency department as I cannot function normally. All my blood tests and my heart, endocrine, and neurological checks are normal. I have a history of anorexia nervosa. Any ideas as to the cause? I have no quality of life with this problem.
    My problem was extreme hunger, abdominal pain, nausea and vomiting. It drove me to eat and made life essentially unlivable. I wound up 60 kg heavier than I am now. I managed to get some 40 kg off, but life was worse than death during that period. I gave up and was very rapidly regaining. And then came a tentative (but wrong) diagnosis of diabetes as a result of which I was told to "pay attention" to carbohydrate intake.

    I took the extremist route, limiting myself to non-starchy vegetables and no-carb protein, reasoning that I could always add back in my favourite beans, lentils, rice and bread later on and found out by accident, that while the hunger remained, it was less extreme, the pain, the nausea and vomiting gradually disappeared and I was now able to eat less, so I reduced high-calorie foods as well.

    I started losing weight again, but this time, the only unpleasantnesses were hunger and the willpower needed to "say no". That is where I am now, having lost 60 kg, and –very slowly– continuing to lose.

    Except for soybeans, I am still not eating anything that is "starchy" or "high carb" and it may well be that this will have to be the case until I snuff it. I miss the other stuff, but if that is the price to pay to keep life livable, I am all for continuing. It has become second nature and a "lifestyle" by now. Even if my weight is now considered "normal", it is obvious that I am still very much overweight. Hunger remains constant, but the pain, the nausea and vomiting have stayed away. My life is simply so much better now.

    As for the cause, no idea. All I know is that while I am still on two blood pressure medications, everything seems to be under control to the point that all the regularly tested markers are "better than normal", with the exception of TSH.

    So, while this is by no means certain, it seems that the lowER carb diet has done the trick for me. Who knows? It might work for you, so it could be worth trying. Do consult a doctor MD before you try anything. It is important.
  • itisbeckx
    itisbeckx Posts: 13 Member
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    Is there a chance that you are celiac?
  • avatiach
    avatiach Posts: 291 Member
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    I would go back to your doctor—who hopefully knows your eating disorder history—to discuss. You are an appropriate weight right now and maybe your anorexia history causes you to misread eating cues. So maybe the solution really is to eat! But maybe it is something else.
  • JaysFan82
    JaysFan82 Posts: 851 Member
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    I get this every so often but not to the extent of yourself. I have a general anxiety disorder and it definitely flares up when I'm having this issue.
  • itisbeckx
    itisbeckx Posts: 13 Member
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    The problem is not a lack of understanding of hunger cues, that has been determined by my doctors, nor it being a psychological cause. It is clearly physical, the doctors just can’t work out what it is.
  • BartBVanBockstaele
    BartBVanBockstaele Posts: 623 Member
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    itisbeckx wrote: »
    Is there a chance that you are celiac?
    I was diagnosed with it, almost 60 years ago. It turns out now that it was almost certainly a misdiagnosis, made at a time much less was known about coeliac disease.
  • BartBVanBockstaele
    BartBVanBockstaele Posts: 623 Member
    edited December 2022
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    itisbeckx wrote: »
    The problem is not a lack of understanding of hunger cues, that has been determined by my doctors, nor it being a psychological cause. It is clearly physical, the doctors just can’t work out what it is.
    That was my problem as well. In my case, the worst of the problem spontaneously and gradually disappeared over several months when I was tentatively -but wrongly- diagnosed with diabetes and was advised to "pay more attention" to carbohydrates and eliminated bread, rice and other grains as well as beans, lentils and the like. The hunger is still there, all the time, but it is tolerable now. After having lived through hell for most of my adult life, living with constantly gnawing but relatively minor hunger doesn't seem so bad, so I can lose weight now, and I have. That said, most people don't seem to be able to stomach my diet, but I have no problems with it and love its simplicity. As I write this, I am eating spinach with soybeans. I like it, a lot, but it is not a trigger food.

    I have only learned in the beginning of 2022 what it feels like to be "full and satisfied" and it was heaven. Unfortunately, it takes about 3 times the calories I burn in a day, so I can't enjoy it.

    I hope you find a solution. Self-discipline is one thing, but the suffering that it can cause is not always clear to those who are lucky enough to be "normal".

    There is, unfortunately, a very big difference between hunger and mere cravings and the standard advice of not giving in to cravings but eating when one is hungry is deadly to those of use who are experiencing unadulterated hunger all the time. But then, you know that already.
  • kshama2001
    kshama2001 Posts: 27,898 Member
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    @Xellercin - any thoughts on this?
  • itisbeckx
    itisbeckx Posts: 13 Member
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    I would like to note that the symptoms are a precursor to hunger, not extreme hunger. I am so sick of eating so much food, but if I even eat slightly less in the first half of the day or have a snack a half hour later than usual I become so unwell.
  • jeri30
    jeri30 Posts: 46 Member
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    Maybe you're hypoparathyroid? Not enough magnesium can cause it....you're magnesium gets low, you get symptoms, than eat and it goes away? IDK. Not a doctor. Just a thought. https://www.mayoclinic.org/diseases-conditions/hypoparathyroidism/symptoms-causes/syc-20355375
  • itisbeckx
    itisbeckx Posts: 13 Member
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    All blood tests have been normal, but thanks for the ideas!
  • kshama2001
    kshama2001 Posts: 27,898 Member
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    itisbeckx wrote: »
    All blood tests have been normal, but thanks for the ideas!

    Are you sure everything mentioned has been tested? Despite being anemic for 20 years, for a while there I had to remind them to test my iron levels.
  • itisbeckx
    itisbeckx Posts: 13 Member
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    Yep I’m sure! My iron has been tested and I had an infusion ages ago. My levels have been normal since then. I have had regular blood tests.
  • DebbsSeattle
    DebbsSeattle Posts: 125 Member
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    Are you taking niacin/B3? Cholesterol fighting supplements? Might be buried in a multi vitamin. If so follow the research path on nicotinic acid and niacin flush. Also check your regular foods. With a history of eating disorder, do you fixate on any one food that might be too high in niacin? If you do seek a more varied diet. I am a believer in chiropractic, massage therapy and acupuncture. Those methods saved me when traditional medicine just threw pills at me and told me seek psych care. Consider trying something new.
  • nsk1951
    nsk1951 Posts: 1,295 Member
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    Totally probably not your issue ... but this reminds me ... back about 35 years ago I started to have a gnawing hunger pain that made me feel nauseated and very sick. Eating a little food helped, for a little while and then it would start all over again. I found myself sipping water constantly because it helped to quite the pain a little bit but it didn't help very much at all. It was awful.

    The doctor thought I might actually be having acid indigestion and had me take stomach acid lowering medications ... and they didn't help at all. It was a problem for at least 10 years and just kept getting worse and worse.

    In the end, pre-hunger pains became so bad that I would cry from it. And, yes, I put on weight from all the extra nibbling I did to try to hold the pain at bay. ... and then ...

    And then I had an endoscopy performed at a hospital by a gastroenterologist ... and GUESS WHAT ??!!?? .. I had H-pylori infection in my stomach. They gave me a 6-month treatment for it and had to repeat it again one year later because the symptoms started to come back ... but I have been pain free since then.

    And I am very, very careful about washing my fruits and vegetables, where I eat out, and keeping my washing my hands before handling food.

    Maybe something like that is going on with you 2? ... See ... the little bit of food, or a lot, would temporarily block the acid but then it would rebound as the food got digested and then the acid paid would be greater than before .. it was a vicious cycle. ... Go see a gastroenterologist!
  • avatiach
    avatiach Posts: 291 Member
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    Go see a gastroenterologist!

    That’s a good idea. Sometimes it does take a specialist. I also had some success (different problem) with acupuncture and IDK if that could help.
  • alfacarole
    alfacarole Posts: 1 Member
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    Hi I only just saw your post so I apologise for the late reply
    I just wondered if your drs had thought about vestibular migraine? What you describe sounds very familiar to me
  • shaumom
    shaumom Posts: 1,003 Member
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    Do you know if they ever checked you for Reactive Hypoglycemia? It is different than 'fasting hypoglycemia' and is when the blood sugar crashes within a few hours of eating (rather than after a long fast without food). The symptoms would track, although I don't know if the tests you had included ones for this.

    Fasting hypoglycemia is what they usually test for if they are looking for hypoglycemia, and is not quite the same testing.

    It is also often, but NOT exclusively, seen in folks who have had stomach surgery. So could be something that doctors may not consider if you haven't had that.

    The test for it might have involved you needing a blood test while having symptoms, potentially, and then likely a Mixed Meal Tolerance Test ("The MMTT is performed by feeding the person a beverage rich in protein, carbohydrates, and fat (such as Ensure or Boost). After drinking the beverage, blood glucose levels are retested every 30 minutes for five hours").

    If you haven't had the MMTT, might be worth asking about it?
    (article on it - https://www.verywellhealth.com/what-to-know-about-reactive-hypoglycemia-1087744


    If you have had that type of testing, another possibility, although pretty rare, could be a mast cell activation disorder. More likely if you have a history of things like, possibly, skin issues, rashes, stomach problems, allergies, and/or sensitivities. It's a rare disorder where the mast cells get, well, bejanked. They are the cells that, among other things, release histamine with allergic reactions.

    When they get bejanked, they can start releasing the histamine (and other mediators that cause other effects) for all sorts of triggers, typically stressors of various kinds. One such stressor can be low blood sugar.

    I would not expect this would quite fit the pattern, although the symptoms could match up, depending on the mediators released. But having to eat so frequently, i wouldn't think low blood sugar would be present to cause this issue.

    However, it is a quirky, odd disorder that is unlikely to be tested for, and if nothing else, support groups might have a pool of people who have had to do a lot of searching for 'what is wrong with me' that are often willing to give some advice about the various conditions and disorders they've come across along the way that might match up to your symptoms, you know? (would have to hunt down some of the forums on facebook to talk with folks who have it - medical sites focus on the worst cases of it, and don't tend to even mention the milder, or more oddball, ones - just look for mcad, mcas, mast cell disorder, and the groups will pop up).

    good luck and I hope you find the answer!
  • csplatt
    csplatt Posts: 1,013 Member
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    Could it be panic and anxiety related to starting to need to eat but being worried about choices, weight gain, etc?
  • astengo1
    astengo1 Posts: 5 Member
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    Hypoglycemic , would be my guess

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