Neurological conditions
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How do I stop severe hunger caused by fibromyalgia

deb74deb74 Member Posts: 754 Pioneering
edited November 2020 in Neurological conditions
Hi. I was just wondering if anyone had any advice on how to stop feeling really hungry all the time if you have fibromyalgia. I am always hungry and often feel like I am going to be sick if I don't eat. I often feel like I haven't eaten for ages even if it is less than an hour since I did eat. It is driving me mad!

Replies

  • OxonladyOxonlady Member Posts: 381 Pioneering
    Hi, @deb74, I have exactly the same problem with Fibromyalgia only it's even worse as I'm on steroids. I didn't realise that the Fibromyalgia also had that effect. It's been driving me mad, too! I want to lose weight but I'm barely mobile and being hungry all the time really doesn't help. If anyone has any advice, I'd love to hear it! 
  • poppy123456poppy123456 Member Posts: 22,218 Disability Gamechanger
    HI,

     May i ask how you know it's the fibro that's causing this? Or have you just assumed this is what's causing it? I've had fibromyalgia for over 10 years and i must admit i've never heard of this as a symptom, although fibro does have many different sypmtoms and we are all affected differently.

    Have you spoke to your GP about this? Maybe there's something else going on here, although we can't tell you what maybe going on because we are not medically trained.

    Maybe you're not eating enough or not eating the right things to keep you fuller for longer.

    Proud winner of the 2019 empowering others award. This award was given for supporting disabled people and their families for the benefit advice I have given to members here on the community.
  • deb74deb74 Member Posts: 754 Pioneering
    Hi @poppy12345.When my doctor diagnosed my fibro he asked me if I had had a change in appetite but he didn't tell me how to stop the hunger. It doesn't matter what I eat I am always hungry! 
  • deb74deb74 Member Posts: 754 Pioneering
    Hi @Oxonlady. I can't imagine being on steroids as well as dealing with this. I have found that fibro causes all sorts of weird symptoms that you wouldn't expect.
  • poppy123456poppy123456 Member Posts: 22,218 Disability Gamechanger
    I've never heard of hunger being a symptom and reading this link here it doesn't mention hunger. https://www.healthline.com/health/fibromyalgia#natural-remedies

    My advice still stands, speak to your GP because i'm not convinced this is related to fibro. Please do let us know the outcome, i'd be very interested.


    Proud winner of the 2019 empowering others award. This award was given for supporting disabled people and their families for the benefit advice I have given to members here on the community.
  • deb74deb74 Member Posts: 754 Pioneering
    Sorry @poppy123456. But If you can be bothered to read the reply from Oxonlady you will see I am not the only one with this symptom! and as you have already said we are all different. Just because you don't suffer from it that doesn't mean it isn't a symptom. As I have already said one of the questions my doctor asked me was about my appetite. I have also said that my doctor didn't tell me how to deal with it. I was looking for some peoples suggestions on how they dealt with the symptom not people telling me it isn't a symptom!
  • Francis_theythemFrancis_theythem Member Posts: 120 Pioneering
    edited November 2020
    If i can jump in, I think what Poppy's getting at is that if it is another condition, treating that condition will manage the symptom. Understanding what's going on, which bodily system and the cause is important so we can find the right treatment. Also, if someone else has the symptom who has fibro it doesn't mean it's automatically and exclusively fibro e.g. could be a consequence or a comorbid disorder of the fibro present in some people.
    My personal opinion is it's better to go back to your doctor with this symptom exclusively as they will be able to a) double check that there is nothing else that *may* be going on to make sure it's not part of something else that's easily treatable and b) they can give you symptomatic advice, or prescribe medication that could help.
    Generally, drinking lots of liquid at once can fill your stomach up so can trick your body into thinking you have a fuller stomach. It's something I used to quell hunger when I had anorexia. But because I don't have the understanding of what's the cause and what's going on in your body I can't really give any coping tips.
  • deb74deb74 Member Posts: 754 Pioneering
    when I  went to see my doctor he asked me if my appetite had changed and told me it was a symptom of fibromyalgia in some people but couldn't suggest a way of stopping it! I will try drinking more and see if it helps.
  • poppy123456poppy123456 Member Posts: 22,218 Disability Gamechanger
    deb74 said:
    Sorry @poppy123456. But If you can be bothered to read the reply from Oxonlady you will see I am not the only one with this symptom! and as you have already said we are all different. Just because you don't suffer from it that doesn't mean it isn't a symptom. As I have already said one of the questions my doctor asked me was about my appetite. I have also said that my doctor didn't tell me how to deal with it. I was looking for some peoples suggestions on how they dealt with the symptom not people telling me it isn't a symptom!

    If you happen to look at the time in which myself and oxonlady posted our comments then you will see that there was a 2 minute time difference, which could have meant that we cross posted with each other. As it happens i didn't actually see the comment. So it's not a case of "being bothered to read the comment"! but thanks for the advice here, i'll bear that im mind next time i answer 1 of thousands of posts here.

    My advice still stands, sorry. You need to speak to your GP because it could be something totally unrelated to fibro. I won't make any further comments on your thread but please be mindful to others.
    Proud winner of the 2019 empowering others award. This award was given for supporting disabled people and their families for the benefit advice I have given to members here on the community.
  • Francis_theythemFrancis_theythem Member Posts: 120 Pioneering
    deb74 said:
    when I  went to see my doctor he asked me if my appetite had changed and told me it was a symptom of fibromyalgia in some people but couldn't suggest a way of stopping it! I will try drinking more and see if it helps.
    This is exactly the point I'm making - understanding why it is happening, whether or not it is within the scope of fibro, is important to understand how to stop it. For example, it could be a result of malabsorption as a consequence of fibro, where your body is just not capable of absorbing the food you're eating, in which case the treatment would be based around that. Or, not regulating serotonin properly as a consequence of fibro can cause hunger as serotonin regulates hunger, among other things. In which case the treatment to alleviate the symptom is very different.  
    This is my advice, to properly investigate it so you can understand and treat it effectively. Liquid is a stop-gap measure but not a solution.
  • deb74deb74 Member Posts: 754 Pioneering
    I will go back to see my doctor again !
  • Pixie51Pixie51 Member Posts: 59 Courageous
    I would have to agree with Poppy on going back to your Doctor to have them look at this. Not because it may not be a symptom of the fibro for you but just to check that nothing is being missed. I know like oxenlady steroids can make you ravenous! I have had fibro (or been diagnosed for 7 years) but cant say its something i have experienced. Maybe if the Doc says it is the fibro they can refer you to a dietician to help you look at what you can eat that may help you not get that hunger. Hope you get it sorted. 

    Pix x
    Yoga heals the soul 🙏💖
  • mandyocanmandyocan Member Posts: 1 Listener
    I just wanted to comment because it definitely is a symptom! Not a lot of people have this symptom or complain about it so I have found it to be a rare symptom. I have had it for three years since all of my symptoms started. Explaining to doctors let alone anyone is hard because no one really understands what you mean by a constant hunger. The docs test for normal issues that would cause it like diabetes, thyroid ect
    I wish I could say I found something to help but I haven’t this far. 
    I think that it has to do with the mitochondrial dysfunction and the body not getting what it needs. I bought a glucose monitor and have found that my sugars consistently run in 120’s which goes along with one of the theories of your body not responding to carbs and sugar like it should. I am 5’7” and 129 pounds so shouldn’t have sugar issues. 
    I have tried a low carb diet and have also seen an endocrinologist who started me on metformin which also hasn’t helped. 
    I have a functional medicine doctor who I have run multiple tests with. I also have malabsorption in my gut but that was also obvious to me through changes in my BM. 
    No matter what I eat it just doesn’t seem to be getting into the cells so I am constantly eating and feeling starved! I have a lot of symptoms daily! 
    This all started three years ago and whatever change went on in my body definitely caused the constant hunger and malabsorption so def a symptom! 
    Do you have constant symptoms or do yours flare now and then? 
    I also had a bone scan and have osteopenia. I am 35 so another abnormal find but common with the fatigue/pain syndromes. 
    I would be curious to hear if you find any explanation or if you find anything that works for you as I am in search too for help! 
    Right now I am following Dr Brooke Goldner and am drinking green smoothies and following a plant based diet high in raw veggies with chia seeds. I have just started but will see if it helps with any symptoms! 
  • mikehughescqmikehughescq Member Posts: 5,987 Disability Gamechanger
    The fundamental issue is not whether or not it is a symptom but what fibromyalgia is in the first place. There is no settled view on this but people like labels and fixed perspectives even when they make no sense. 

    Fibro is a name ascribed to a set of symptoms which do not make sense when you do a differential diagnosis. CFS, IBS and other conditions are in the same place. They are names given to a collection of symptoms apparently unexplained by any other diagnosis. Some people accept that at face value and some refute that and want it accepted as a thing in itself. Like it if not neither perspective has the monopoly on truth or fact as yet but many people stand to profit from the argument. 

    Consequently, a bit of research shows that when fibro first started to be used as a label hunger absolutely was not one of the symptoms. It has been added by multiple web sites as multiple users add it as a symptom but there’s zero evidence it has anything to do with fibro at all. People making that assertion need to get to grips with some basic science; the history of fibro and an understanding of the difference between correlation and causation. 

    Hunger as an additional symptom needs to be reported as it needs to be investigated as a stand alone thing so other causes can be ruled out. Argue in front of a scientist that hunger has anything to do with fibro and you will be plain laughed at. Sorry to say that but I’ve sat in a room with 200 health care scientists and heard the whole things stripped down to basics. When hunger was raised as a symptom or was laughed at. That doesn’t mean people don’t have that issue. It does mean that only quacks think ot has anything to do with fibro. 
  • lisathomas50lisathomas50 Member Posts: 3,869 Disability Gamechanger
    Hunger can be associated with many things sometimes it's just how people's bodies work  my grandad was hungry all the time and when investigated it was becsuse his body only way I can describe it as I don't know how to spell the proper word for it his body burnt it up to fast  so an hour after eating he was hungry again 

    The way my grandad dealt with it was 
    He would have breakfast 

    Two hours later he would have a snack 

    Two hours later he would have his dinner 

    Every two hours a snack  then his tea 

    Snacks every two hours until bedtime 

    Then he would extended it by an hour  until he could eat normal again 

    I know that was long but it worked for him 
  • deb74deb74 Member Posts: 754 Pioneering
    Finally been to see the doctor and it looks like I have gastroparesis which he reckons has been caused by me/cfs which I have had for the last 8 yrs
  • deb74deb74 Member Posts: 754 Pioneering
    Forget to say I need more tests. I have started altering what I eat and eating smaller meals to see if that helps
  • deb74deb74 Member Posts: 754 Pioneering
    Hi @OLIBEHER6. As I said in my last post I am waiting for more tests but have been diagnosed with gastroparesis. Thanks for the the advise though.
  • Wini1960Wini1960 Member Posts: 125 Pioneering
    [email protected] Hi have you tried drinking more fluids to fill you up. It's good that you are having more tests so hopefully will get to the bottom of your issue and will make you feel more in control. I do wish you all the best🙂👍
  • deb74deb74 Member Posts: 754 Pioneering
    Hi @Wini1960. I drink quite a lot but then I have to go to the toilet all the time. I am not able to eat much so whatever I drink tends to go straight through me.
  • Wini1960Wini1960 Member Posts: 125 Pioneering
    [email protected] know what you mean its frustrating. I have problems with blood clots to which i take anticoagulant medication. I guess the only thing to do is eat small meals throughout the day but do get a second opinion if your not happy with your treatment. I hope you get to the bottom of your issues🙂
  • MarkN88MarkN88 Member Posts: 793 Pioneering
    edited April 22
    You should give this a read:

    https://www.everydayhealth.com/fibromyalgia/weight-loss-tips-for-fibromyalgia-sufferers/

    Although it’s about weight loss you should look at the following:

    When you have fibromyalgia, the appetite-signaling hormone leptin may be out of sync. That sends inaccurate hunger messages to the brain, making you eat more, says Dr. Holtorf.


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