International ME/CFS and FM Awareness Day Is On May 12, 2018
Thomas Hennessy, Jr., selected May 12th to be our international awareness day back in 1992. He knew that May 12th had also been the birthday of Florence Nightingale. She was the English army nurse who helped to found the Red Cross as well as the first school of nursing in the world.
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Help understanding and getting diagnosis?

Discussion in 'General ME/CFS Discussion' started by dinobark, Apr 12, 2017.

  1. dinobark


    Hello everyone!

    I wanted to find a support group somewhere as I am currently struggling to get a diagnosis. If this is the wrong thing to do here or should be in a different forum - apologies! If not... brace yourselves for an essay of a life story!

    I'm 23 years old and in the UK. I was diagnosed with depression and anxiety at 15. I had family issues most of my life, but at 15 my mental state was most worrying because I was going through exams. My family were very supportive, but my mother was/is severely depressed. She is on ADs and when they put me through counselling I also tried to get her counselling, but she did not want it when it was offered to her. She sleeps 60% of the day, gets restless leg syndrome and I know she would sleep more if she could. She had a mobile hairdressing business but only really does friends now, she can't work full time or even part time. I now think she has CFS too! There is a lot more to it but as this is a public forum I don't want to share too much about her.

    At the time I do believe I had depression and anxiety, as I was going through panic attacks etc etc. I left school without any further education and went onto learn about dog behaviour academically from home, and also self taught myself in graphic design. Both are my passions. My parents were very supportive of this and very helpful, but I did spend the majority of my time sleeping.

    Social situations have exhausted me since as long as I can remember, and although I do enjoy them - ultimately I prefer little physical social life. Fast forward to 20yo and I moved further down the country with my now ex. He wasn't very nice but I thought the problem was me. Again assumed my issues were depression. After some time I broke up with him and he moved back whilst I stayed down the country. I 100% felt much happier, and met someone new a year ago.

    He is the nicest, most supportive person ever and equally he doesn't depend on a social life. I haven't felt sad in 12 months, so I know I no longer have depression - but I am exhausted. All the time. Sleep is rarely enough and I get claustrophobic with restless legs (whole body really). I work full time now, and I think it helps my mental state to keep a little bit busy - but I feel like I am really pushing myself. I am regularly physically sick, I have constant lower back pain and I always pick up any bug or illness that comes near me. I actually really enjoy fitness but my heart rate is always too high and I get dizzy easily.

    But the mental stuff is the stuff that really gets to me. Brain fog is very strong. I can struggle to read sentences out loud, can blur over them easily in a book, struggle to count money around people, absorb new information, etc. Often I can hear words and understand people are speaking but I just simply cannot process them. It's a bit scary. Sometimes talking myself is exhausting.

    I spoke to two people I know with CFS and they both individually agreed I have it. So I went to my doctors but she told me I didn't have it, that it sounds like depression and gave me ADs to help with energy. I took them and was sick for 4 days... I knew this can happen though so kept to it. Felt a bit happier and more... excited... but it didn't really stop the crashing so I didn't continue with another prescription. I also didn't want to go back and feel deflated by someone else telling me how I felt.

    In November I felt a weird pain in my jaw whilst at work. I ignored it and went to a dog show that weekend (in a cold equestrian barn so not good for sick people!). Soon I physically couldn't move my neck, it became incredibly swollen and at 5am the next day I was admitted to hospital as my infection levels were through the roof. Turns out I was only a few hours away from having sepsis. I spent a week in hospital and took 4 months in total to really recover. Doctors just said I got an infection and no one can really explain how or why. For the record I have no idea if this relates to CFS whatsoever, but certainly my restless leg syndrome was the worst it had ever been. Just wanted to mention it in case.

    At this point my bloods were obviously taken regularly and my last bloods revealed that I am back to being a perfectly healthy 23 year old. But I'm still exhausted. I'm typing this because I've just been sent home from work as I've been sick, with absolutely no sign of a bug or any other symptoms. I'm just tired.

    I've booked another doctors apt for Tuesday morning. My theory being that my bloods have confirmed nothing is wrong with me, I'm the right weight and fitness for my height and age, my diet isn't bad - but still tired and still struggle to function.

    I'm mostly posting to rant I think, as no one around me understands it. But I'm also looking for advice on how to approach my doctor. They obviously don't like self diagnosis of any kind, I think it automatically makes them defensive - but I also know they're not going to come up with this on their own. How long did it take you to get a diagnosis? From what I've read online I should hopefully only be mild - but can this make it harder to make it official? Is there anything you did specifically to prove your point?

    Thank you in advance. Other than matching the symptoms I don't know anything about it, and there seems to be soooo much info here. Hopefully someone can start lightly with me haha. I hope it's OK to post this!
    TiredSam, Hutan and Valentijn like this.
  2. Valentijn

    Valentijn Senior Member

    @dinobark - Have you been able to determine if your heart rate and/or blood pressure are normal when you get exhausted? Some people get symptoms of orthostatic intolerance when they're sitting or standing up for too long, and it might get triggered by an infection. If something odd is happening, it can be diagnosed with a Tilt Table Test, and there are usually treatments available.
    Hutan likes this.

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