Malaise and fatigue problem

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Hello everyone,

I joined this forum in hopes of getting advice on my lack of energy problem. About a year ago, my doctor diagnosed me with malaise and fatigue. I will try my best to allow you all a mental picture of how I act and feel. My age is 21.

In social situations, whether it be a hand motion or talking, I have a slower reaction time than others. If I record myself talking, I notice that I communicate pretty slowly, and I pause to think frequently throughout what I’m saying. My eyes are usually half-way open in surprise photos. I get really tired at my job and have trouble making it through the day. Oftentimes I get really sleepy in the middle of the day even though I have gotten adequate sleep (7-11 hours), and only a few hours of recreation will completely sap my energy. Sometimes tourist customers will yell, "wake up!" at my place of work because of my eyes being halfway open out of fatigue. This infuriates me. One doctor that I went to plain out told me that I looked "completely out of it." Some people tend to think I'm high or on some bad drug. sad

After looking up fatigue on the Internet, I learned that there could be over 500 causes. It seems like a daunting task to narrow my problem down, but this issue is really lowering my quality of life. I’m not sure if I have some sort of imbalance, deficiency, or disease.

I have taken 2500 mcg B12 for a month straight, and this did not help. I have had a thyroid test, and it was normal. Those are the only two things I've tried so far. The doctor that originally diagnosed me with malaise and fatigue said that I should just try to exercise. Another doctor told me to eat vegetables. This issue feels like something worse than lack of exercise and vegetables. What do you all think?

Recently, I slept 13 hours with no problem. I feel that it's not normal at all!

Thank you for listening,

Shane

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  • Posted

    The first thing to do is to get a complete blood panel done. CFS/ME is a diagnosis of exclusion. There are no biomarkers for this illness. And it's true that there can be many causes for fatigue. Just reading your post, it's not obvious to me that you have ME/CFS. One hallmark of this illness is severe postexertional fatigue. Fatigue after a few hours of recreation doesn't quite fit the bill, in my experience. But then again, there are different levels of fatigue with CFS/ME. When I was first diagnosed with this illness, a simple shower would result in me having to lie down for hours. We're usually dealing with a "bone-crunching" type of fatigue. That's why I think the word "malaise" can be misleading if it's used in connection with ME/CFS. You might want to see an ME/CFS specialist to help determine if you do have this illness. After my blood panel turned up negative, I saw a specialist who asked me several questions. On the basis of my answers, he diagnosed me. This process took about 20 minutes.
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  • Posted

    Sorry to hear about it. As you said, lots of different things are known to cause these sorts of problems, and probably many more things that are not known do too. You could play about with trying to be healthy in different ways and see if you find something helpful? Lots of people have found trying to increase exercise levels to be unhelpful, but it could be of benefit to you? Eating healthily sounds likely to be good for anyone, but I wouldn't put prssure on yourself to try to eat some perfect diet when there isn't any evidence that you have a problem with your diet.
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  • Posted

    Shaney I had many years of thyroid tests all came back normal therefore I was told in no way was my illness connected to my thyroid !!!  All other tests for illnesses with my symptoms came back normal , so I was told I had CFS just live with it which I did.  19 years later I was seen by one of the doctors I last saw in 1997 , he was shocked that my medical records showed I had never been tested for autoimmune disease , hashimoto and after an ultrasound he told me I have not got now or ever had ME/CFS I have hashimoto disease !! I would check with your doctors to confirm you have had ALL tests and certainly mention hashimoto s . This may not be you but worth looking into I am sure you would agree. Thyroid disease is one of the most misdiagnosed illnesses . If you go to " I am hashimoto s a letter" and view comments , is this you???? Also Diane Holmes book, " tears behind closed doors "is worth looking up.she was misdiagnosed for 23 years Ended up in a wheelchair now she is a happy heathy woman living a normal life by only taking thyroid hormone tablets !!! Hope this helps you or any one else on this site looking for answers. Doctors do make mistakes certainly did with me! Good luck .  
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  • Posted

    Hi Shane,

    Sorry to hear that you are feeling so rubbish! I am also 21 and know how you feel regarding your quality of life - I am exactly the same.

    I have only recently been diagnosed, however, for me this all started early this year... I had been feeling really low in energy for some time and being anemic I naturally assumed my iron levels were low and bumped up the dose. In April I went to see my doctor because I was feeling worse than I had been (muscle pains, trouble sleeping, etc). I was then sent for over 40 blood tests - all of which were normal! I eventually went through private health care & got to see a specialist consultant in October where my diagnosis was confirmed.

    I am now on long term sick from work and like you can easily sleep for 13+ hours and still need a sleep during the day! It's a shame that people in your work place are not particularly sensitive, some people judge too quickly.

    I really hope you find a diagnosis, if you have any questions feel free to message me. Sometimes it's comforting to know there are others your age have this too & you are not alone.

    Kristy x

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