Struggling with Chronic Fatigue Syndrome and just need to talk to people who understand

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I am 20 years old, diagnosed when I was 18. I currently work part time, 20-25 hours while also doing my degree from home with the Open University over the course of 3 years. I chose to do my degree at home due to my fatigue.

I have recently had to reduce the amount I am working as it was making me immensely ill and thankfully, my manager is super understanding and has agreed to give me set hours each week. 

My worst was when I was diagnosed, I was still at College, my manager asked me to hand in my notice when I told him about my condition. I felt worthless. A teacher at the College was trying to get me kicked out because she thought I was skyving. Beforehand, I had doctors tell me I was wasting their time and money and should stop returning. Found a doctor who believed me and thankfully things got a lot better. I am in a job that I love, doing the degree I want to do and all the friends I have now are ones that are extremely supportive and my boyfriend is supportive also. 

However, things seem to be digressing back to how bad I was 2 years ago and I worry about what this means for me. It's hard talking to my friends or boyfriend about it all as they don't fully understand and have debated joining a forum for a while for support as I often get really down about things and just need someone to understand how I am feeling for once. It's utterly frustrating talking about this to people who can only imagine how I feel on a daily basis and even then, they don't know what to say or do so it's quite discouraging. 

I'm hoping to just find some people to talk to this about, it would be insightful to see how they deal/cope with their fatigue and if anything in particular helps them that might also benefit me.

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10 Replies

  • Posted

    Dani, sorry you have been going through this at such an important time in your life. I'm happy to talk to you about all the things I have tried...some have worked and others have not. Sometimes I neglect this site during the work week but happy to corroding through email. Good luck and stay positive.

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    • Posted

      Hi Joe, thank you for reaching out. If you could private message me your email that would be fantastic, I just want to start finding something that might help. So hopefully some of yor suggestions will help!

      Dani

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    • Posted

      Joe....I was wondering what something of the things you have tried that have helped you! Thank you!
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  • Posted

    Dani,

    I'm so sorry to hear that you are struggling with CFS at such a young age. I was diagnosed in my early 30s and still long for the day that I felt "healthy!" In terms of coping, it sounds like you are doing a terrific job maintaining a part-time job and pursuing your degree on line. That's amazing. I worked part-time teaching for many years, but recently decided to retire from that job and work in the family business where my hours are more flexible. 

    I think pacing is the best thing you can do for CFS. It's important that you try to be social, yet you must be selective and only choose to do things when you are feeling your best. I think light to moderate exercise (if well-tolerated) is good for the mind and soul. Meditation is helpful to some. I know Benzos are addictive, but they help with sleep and brain fog. As you know sleep is critical and finding ways to reduce stress is also so important. 

    Like i said before, I think you have a good handle on things and you seem to be managing your disease very well. Good luck and feel free to chat here anytime! KPD

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    • Posted

      Hi KPD, thank you for replying to my discussion. I think my main issue is that I am in a job that is very physically and mentally demanding but I love those environments. May not be so good for my health but I thoroughly enjoy the job. 

      I just come home and have to spend my evenings in bed as if I do anymore I will be ill the next day. I always work as hard as I can but I feel like my CFS is in the way all the time.  I just get so frustrated at myself and my lack of being able to change my state of feeling ill all the time. Just want to find some answers that will help. I will definitely check out some of your recommendations so thank you so much! Getting a solid sleep routine has always alluded me as I've always struggled with sleep. I know it would help a great deal but I just can't seem to crack it, unfortunately.

      Again, thank you for your feedback, I will definitely do some research into it!

      Dani

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    • Posted

      Hi again, Dani. There has been some recent discussion about a drug called Low dose Naltrexone or LDN. I belong to a closed group on FB and a lot of people suffering from autoimmune diseases including CFS/ME/Fibromyalgia have gotten relief from their symptoms. I'm going to ask my doctor about it. It sounds promising. 

      I understand how you feel about working in a physically and mentally demanding job and actually enjoying it. Teaching required lots of energy during the day, and I would come home and crash in the evenings. 

      Best of luck to you, and hope you find better ways to manage your CFS. KPD

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  • Posted

    Hey Dani. You're in the infant stages of the fatigue. I also for sick when I was 18, I am 27 now. There are sooo many things that I wish I would've done differently and I wouldn't still be sick today. There can be so many things causing the fatigue. Do you know what your cause is? I can give you a few pointers. I will Private message you my email. I'm also looking for someone to talk to who understands.

    - Rube

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    • Posted

      Hi! As I’m in year 2 of this I would love to hear what you would have done differently. I’m guessing not over do things, which I apparently did yesterday and appear to be paying for it today. Any guidance would be great. Thx
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  • Posted

    I understand everything you are saying.  I got sick with CFS in 2001.  I have had to give up a job I love, can no longer have a social life and endure yearly relapses.  I have tried everything to get well.  My family thinks I am lazy because my once neat house is an absolute mess, friends no longer contact me because I have been unable to be "life of the party"  anymore.  I have a spouse who fails to give me the support I need.  If you need to shout, scream, lash-out or just whine, I am willing to listen,  this illness is plain and simple a nightmare.

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  • Posted

    Hello Dani, 

    I hope you're doing alright. I am 24 and have suffered from chronic fatigue syndrome since I was 14. I am very good a denying I have it when I'm feeling good and then get very frustrated when I cant keep my body upright. Like you I feel mi have no one to talk to a lot of the time about it and a lack of understanding from the people I work with etc. I am also at open uni, as this is the only way I am able to study. I am lucky my manager is very understanding too, which really helps and makes me feel more human. I am finding right now the balance between supporting myself with work and studying at the same time very difficult. 

    I am happy to chat further about all things Cronic fatigue and also uni if you want to. This is the first time i have reached out also. My email address is

    Love , 

    Sophie x

    Moderator comment: I have removed the email address as we do not publish these in the forums. If users wish to exchange contact details please use the Private Message service.

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