Undiagnosed and rare conditions
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Extreme constant fatigue, body pain but no cause found?

anonomyouslytiredmananonomyouslytiredman Member Posts: 1 Listener

Hello, new member here. 

I’m a male in my twenties. I’ve been experiencing extreme fatigue and tiredness for about 8 years now. I also yawn all the time and have the desire to just close my eyes and sleep all the time but yet it doesn’t feel like I’m sleep deprived. I do have to take naps throughout the day though. The sleepiness gets worse after eating and after showering.

This tiredness and fatigue is really terrible. I feel soo ill and feel like I’m “drugged” 24 / 7.  It makes doing anything very difficult, especially studying. 


I also have been experiencing tingling sensations all over my body, particularly in arms and legs. It’s definitely noticeable. I also have constant whole body pain, feels like throbbing or a dull pain. Pain is much worse after showering and in the morning. 


My memory seems to be poor, along with my concentration. I have mini black outs where something I just did disappears from my memory. 


All symptoms mentioned so far are relieved by taking a nap and by lack of sleep (lack of sleep numbs the pain and the feelings of fatigue it seems). 


I also have digestive issues that have gotten worse and worse over the year. I can barely tolerate anything it seems. Corn chips send me almost immediately to the bathroom. Peanuts, pistachios, cream, candies and potato chips also have a similar effect. I struggle to find anything to eat that doesn’t bother me. There is this constant tightness in my abdomen and I’m always bloated and gassy. I also seem to get very sleepy after bowel movements and the entire process is just very uncomfortable. 


I seem to always be nervous, edgy and irritable for no reason and feel agitated. I struggle feeling emotions properly and caring...I’m just too tired, I feel apathetic. Everything seems so slow, every movement, every thought. I could just collapse on the floor and lay there forever.


Lastly my hands and feet are always cold and my nose is always stuffy.


I’ve seen many specialists and have had so many blood tests and imaging tests but everything is normal. I’ve been checked thoroughly from head to toe by a rheumatologist, internal medicine doctor, psychologist, psychiatrist, neurologist, GI doctor, GPs, etc. I’ve had a gastroscopy and colonoscopy with biopsies, full brain and spine MRIs, chest X-ray, EMG, EKG, NCS, test for SIBO and much much more. All is normal. Only thing is an unexplained elevation of a test called rheumatoid factor and another one called IgM. 


It’s extremely difficult to live feeling like this 24/7. It’s gotten to the point where all I want to do is rest, everything is exhausting.


Diagnosis so far: EoE (but last endoscopy was normal), acid reflux, IBS, OCD and social anxiety.


I’m posting all this because I was wondering:


Does anybody experience this or know what can cause this? 


Replies

  • pollyanna1052pollyanna1052 Member Posts: 2,032 Disability Gamechanger
    could it be ME?
  • Chloe_ScopeChloe_Scope Scope Posts: 10,653 Disability Gamechanger
    @anonomyouslytiredman, it sounds like things have gone on for a while! It must be extremely difficult to manage with those symptoms. 

    Unfortunately we are not medical professionals. 

    @pollyanna1052 mentioned ME (also known as chronic fatigue syndrome), here is the NHS information for that condition.

    Do you have any appointments coming up that could give you more answers?  
    Scope

  • thespicemanthespiceman Member Posts: 6,408 Disability Gamechanger
    Hello @anonomyouslytiredman     Pleased meet you.

    Thank you for joining.

    Understand I am not a Doctor but do have  qualifications in diet, nutrition..

    Looking at your symptoms.

    This does sound familiar.

    Adults experienced the number of these.

    Fatigue, tiredness.  Depression, aches pain, tingling, bloating, pale weak, diarrhoea, weight loss.

    General loss of wellbeing and health, plus mouth ulcers, rashes and unexplained tiredness.  Sleepiness.

    The following are a part of Coeliac Disease.

    Coeliac Disease is can not eat gluten, anything containing that.

    Including the list  Cereals, Wheat flours, Bread, Pasta, Cakes, batters, biscuits any oat products.

    Tinned refined products using wheat flour as ingredient.

    Sausages, processed meats.

    Drinks alcohol from barley or made with malted milk.

    In our bodies have villi hairs like projections in the intestines can make eating hard.

    You would need to get a proper diagnosis .  Speak to a nutritionist, also your Doctor ask about doing a screening. 

    Do a food diary.  Inclusion one which foods are worse.

    You can do a diet based on Salads, Vegetables, Fruit.

    Lentils, Peas, Beans and Nuts.

    Cheese, Milk, Eggs, Lean Meat, Rice, Potatoes.

    According to my own knowledge that is what it could be.

    Hope that helps reassures you.

    Please any questions please happy to help if I can.

    Please take care.

    @thespiceman


    Community Champion
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  • Chloe_ScopeChloe_Scope Scope Posts: 10,653 Disability Gamechanger
    Hi @anonomyouslytiredman, how are you feeling today?
    Scope

  • Jenny11Jenny11 Member Posts: 2 Listener
    Hi!
    Did you ever get your vitamin d checked out? My friends son was having these exact symptoms for ages and what helped him was taking a quality high dose vitamin d everyday. With Magnesium. On youtube if you look up vitamin d deficiency story, People had similar crazy symptoms, for years no one could find out the reason and it turned out to be simple vit d deficiency. Maybe some thing you can try?? I hope you feel better!! 
  • Chloe_ScopeChloe_Scope Scope Posts: 10,653 Disability Gamechanger
    Welcome to the community @Jenny11. :)
    Scope

  • Jenny11Jenny11 Member Posts: 2 Listener
    Oh and take a look at this: https://www.potsuk.org/ and addison's disease symptoms in google.
    Both rare and symptoms look very similar.
  • jen10jen10 Member Posts: 1 Listener
    edited April 2020
    Hi anonomyouslytiredman,

    I am not medically trained, but your symptoms sound very similair to my symptoms of underactive thyroid (also called hypothyroidism) . The extreme tiredness, an inability to concentate, memory problems ,cold hands and feet, constant body pain,and the tingling sensation sound particularly familiar. Once diagnosed this condition is very treatable with just a tablet taken once a day.

     Ask your GP for a blood test for thyroid function and thyroid antibodies. Point out that you do have many of the symptoms of underactive thyroid.

    Self refer to see an endocrinologist if you can afford it, this is a very complex area of medicine that GPs generally have relatively limited training in. Thyroid UK have a recommended list of endocrinologists that they can send to you.

    Interestingly, people with thyroid problems are more likely to be coeliacs too. 

    The thyroid function blood test is not however always definitive. If it comes back negative it is still worth seeing an experienced consultant endocrinologist may diagnose you based your symptoms alone. Thyroid UK is a really good place to find out more information. It is a fantastic support group with a wealth of information.

     http://www.thyroiduk.org.uk/tuk/about_the_thyroid/hypothyroidism_signs_symptoms.html

     I wish you the very best of luck.
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