Diagnosed with CFS at 13 years old - now 24 I am getting worse!!

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I was diagnosed with CFS when I was 13 years old, I spent a lot of my teens trying my hardest to join in with everything and not sit in the house or sleep for hours. Before I was diagnosed I was really active and used to swim 5 times a week as well as play tennis and row all for differnt clubs. CFS completely stopped me being able to do any sports or anything really. 

I struggled for years with it and my mum was so concerned, other family members were a lot less understadning and said it was just because I was a teenager and I didn't want to participate in things which was totally wrong. At 18 I got Galandular Fever and because of having CFS as well I was really unwell, I had to do college work from my bed and hardly ever made it into lessons. Then one morning around 6 months later I woke up and I felt like a cloud had lifted. 

Since then I have been to university and spent my time trying to be like everyone else and have nights out and enjoy myself while I was still able to. I then went into the working world after I graduated. I struggled to keep up with everyone else but found so many ways to be able to do things such as sleeping during the day and learning to say no when I knew it was going to knock me back if I went out. I work in a stressful industry where when I was feeling well I could work up to 15 hours a day (as you can imagine the aftermath of that was horrible)

Around two years ago my mum passed away and I threw myself in to work and trying not to be lazy mainly because I felt like no one else understood apart from her. In the last year I have tried to be more careful and calm down a bit, I am now in a job where I mainly work from home which helps a lot. 

However, I just seem to be getting worse. My symptoms seem to be worsening, I have always had really bad sore throats, bowl problems and everything else. I now have days where getting out of bed is just not an option. I have always been able to push myself and make myself cope but I am losing that control and even walking to the shop is a massive task. I have been to my GP but they have just said there is nothing that they can do. I don't want to be like this at 24 years old I don't want to have to sit inside and be in bed all day. My main problem with CFS is that I am one of those people who loves being around other people, I am a really sociable person so working from home is tough enough without not being able to leave the house for a pint of milk. 

I am sorry to rant but I just wondered if anyone had any experience of this getting worse! My doctor always said if I manage my symptoms I will be able to live a slower paced but pretty normal life.... and that seems to be slipping away from me. sad 

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8 Replies

  • Posted

    You poor thing.

    What treatments have you tried.

    Do you take any supplements currently.

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    • Posted

      Thank you so much for your reply. I don't I was taking supplements for a while when I was younger. It sounds stupid but once my mum passed away I moved away and she was really up on the supplements stuff but I couldn't remember the names and gave up on trying to find anything. The only thing I take right now is iron and herbal IBS tablets.  I'm trying to get referred again to the ME/CFS group in my current city but as I haven't had any bloods done for a while my new GP is doing all the testing again even though I have an official diagnosis. 

      I have mainly just been managing every symptom individually taking pain medication, stuff for my bowls, throat treatments, treatment for circulation etc I have really bad skin so I'm with another doctor for that but that's about it. I don't know if that's really the best thing to do. 

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  • Posted

    Hi ya. I understand as I have had it since maybe 14 yrs old, I am now 36.  Reading your story you are like me and it's severity has gone up and down through your life.  When I look at my life there were periods of times it was worse than others.It got in my way more than others.

    Right now I am going through my worse patch ever.  I am hoping this will be like before it will last so long and then it will calm down again.  I have to get out of bed each day to get the kids to school.  Although it's a tough start it does help motivation.  I get them to school then collapse with a cup of teacheesygrin.

    My advice, is see what meds you can have and suppliments.  Pace yourself (gosh that word drives me mad but it is right).  Wait until your current phase changes.  I believe we have got to believe when we are in a bad phase that it is just a period of time.  It will change again.  We've got to hold onto that to keep us going and looking forward.

    Here's to the next good phase of ME/CFS wink

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    • Posted

      smile this made me smile! I am hoping this is just a phase and things will get better. I don't want to live like this. It's not nice for me or my partner. I try so hard to get out of bed, some days I literally feel like my limbs are so heavy I can't physically move, but I try to rest as much as I can on a weekend so that doesn't happen during the week. It's nice to talk to other people who actually understand! It must be exhausting for you having kids!!! But I can understand it must be such a good motivation! 

      I hope you have some good days over the next week! 

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    • Posted

      Hi ya, having kids is exhausting. Thankfully mine are now 9 & 6 yrs old.  I went to a 1yr olds party yesterday at a neighbours. Some how I ended up being the one looking after him straight from the start for 2 hours. Includign holding the boy while he blew out the candles (well it was actually me trying to stop him touching the candle, whilst holding him and me attempting to blow out the candle). How's that for multitasking whilst having ME lol. Must admit I don't feel good today - another case of boom and bust. How can you not boom and bust and still live life?

      Kids are exhausting and I need lots of help with them but they also motivate me and help me smile. xx 

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  • Posted

    I feel the exact same way Kiya! I love being around other people laughing smiling being adventurous but with CFS & ME comes devastating nerve pains that keep me from being around me or any moderately loud atmosphere. Its crazy construction workers were outside my house all morning doing something in the yard and the whole time I was cringed up in the bed nerves hurting at the sound of every tap and beep from the construction outside. I didnt go back to sleep til the construction was done. Im so sorry that you are so young as am I. Im 22 so if you ever need a friend you can find one in ME 😀😊. I never go out so i cant hang with the friends i did have like i used to.  I never really see them maybe a few times a year if that. And Im sorry about your mom. I lost my big sis to breast cancer last summer then my grandma to cancer in February. I know you may feel alone. I do too! So if you ever need someone feel free to message me wecmaybe we can become good friends since we're on the same journey.  Take it easy today. Try to relax and watch a comedy maybe something that will make you laugh.  Even if its temporary laughing is always good and makes a person feel better.
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    • Posted

      Hi Tiara,

      I sent you a private message on here. Hope you are feeling better today now the construction work has finished! 

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  • Posted

    I feel the same, it's so hard when you have been social to goto this isolation, with this illness two days are never the same, until there is a cure, the drs will always say there is nothing they can do, that is if you are luckt enough that they belive you.  Hang in there, there are people that have got better.
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