New Atmosphere, New Vision: Gibson and Whittemore Kick Off Invest in ME Conference 2016
Mark Berry reports on Dr. Gibson's introduction and Dr. Whittemore's keynote speech, at the 11th Invest in ME International ME Conference in London.
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anyone under 30 ?

Discussion in 'General ME/CFS Discussion' started by notmyself, Jul 31, 2017.

  1. notmyself

    notmyself Senior Member

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    i was wondering how many on here are younger than 30..i'm 26, i was wondering if cfs is milder at younger age,and get worst as you grow older?..I am mild compare to others,but i wonder if is not my age that make it milder, at younger age the aerobic capacity is higher to begin with,and pretty much every system is better ..If the disease struck at a younger age ,maybe it seems milder cause you already have more energy than older people to begin with..I don t know if it makes any sense what i'm saying :))) i would love to speak with someone close to my age,and with relative recent onset ( around 1 year) to see if our symptoms match..
     
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  2. herpesbaby

    herpesbaby Senior Member

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    Hi. I'm 29. Been sick for 104 days and counting (
    I work, because I have no other choice. (I live in a third world country that doesn't pay disability and I have no spouse) I lay down after work and on weekends.
    Main symptoms are fatigue, drowsiness, drooping eyelids, slight headache, low grade fever. It all started with genital herpes.

    What's your story?
     
    Last edited: Jul 31, 2017
  3. notmyself

    notmyself Senior Member

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    Hi.it started about 8 months ago,when i quit my job cause i was so ill..i dont know exactly what cause it,because prior to this i have like 2 years of being very anxious and apathic,i was working nights in clubs and get bad sleep aswell..I get some radndom cold for like 2 months and from there start to get much worse till the point i quit my job..So i don t know exactly my trigger, the anxiety and stress in the past,or those cold ,or maybe both..After this i got like one month of servere fatigue wich become better after..but i have all sorts of symptoms aching joints and muscle,sometimes digestive issue,diziness and others..Comparing to others on here i am much better, i can force myself to run a 10 km run..i can walk for hours if i want..with discomfort but i can.insomnia aswell comes and go..

    From what you describe,i'm not entirely sure you have cfs..( wich is a very good thing) you need to have some neurological symptoms aswell and muscle weakness or pain..also the worsening of the symptoms after exortion...
    YOu are also just 3 months ill..you can definatelly recover!! Did you see any doctors ,maybe the infection is still active and can be treated.
     
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  4. ChrisD

    ChrisD Senior Member

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    East Sussex
    I am 26 and have had similar symptoms to yourself @notmyself including Joint cracking and pain around spine, I've also had Fibromyalgia and I would say I have conventional ME and rate as something like 3/10. From Jan 2016 - Dec 2016 I was the same as you in that, I had the pain symptoms but mild CFS and could still go to work and also even do some running sometimes BUT with all of this I was pushing to hard and had little to no muscle recovery. I crashed hard in DEC 2016 and since then I have been using all kinds of supps and a holistic approach, i mostly feel like I am plateauing but also see some small improvements - my Fibro is very low now and brain fog is near gone, so at the moment it is mostly an energy problem for me
     
  5. Denise

    Denise Senior Member

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    @notmyself - Assuming that onset at a younger age means less severe illness doesn't match the experience of most patients. Some under 30's are far too sick to use internet connected devices.
    Finding this forum within about 1 year of onset is very unusual unless patients already know about the disease and/or were fortunate enough to have been diagnosed that early on. (For many (most?) patients, the time from disease onset to diagnosis can be many years or decades.)
    That said, I hope you do find people to speak with and that you have better days.
     
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  6. notmyself

    notmyself Senior Member

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    hi,so yes i find it early ,how this help me ,knowing early that i will never be the same?:)))i was much better latelly but the tought of knowing that i have this ''incurable disease'' was alwasys on my head even in good days,so i didin t enjoy even the them and eventually fall again it seems..i really wish i didin t know about this..now is too late..
     
  7. Denise

    Denise Senior Member

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    @notmyself - There are many chronic diseases that people live with for decades.
    From my experience (this may not match everyone's experience) this disease requires a great deal of flexibility in one's expectations regarding physical and/or cognitive activity levels. One has to try to find a new "normal" and even that may change over time.
    Generally it seems that those who have been sick less than 5 years have a somewhat better chance of improvement but more studies are needed (as in all aspects of this disease).
     
  8. Vickytoria1988

    Vickytoria1988

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    GREECE
    Hey!I just turned 29. I had my first crash at the age of 21 (lots of clubbing during this age...!) After a very intense period I got terrible headaches and I would need to rest for a week in bed after a simple coffee with a friend.

    I recovered at the age of 24 thanks to good treatments and patience...but then I almost acted like this never happened. I was in remission for about 4,5 years when I unfortunately crashed again.

    From my experience, the older I am, the worst the crashes feel like and of course, they leave their trace. The symptoms become worse and worse, especially the neurological ones.

    You are very lucky that u found this forum-I found it a couple of months and I wish I had found it earlier!!!

    My advice...be rational with what u will do with your life. Try to fully recover and then program your life in a way u will avoid crashing. Working in a night club is maybe not a good idea. You could find a day job. If u find the day job hard, try to work part time, do as u feel. Try to be proactive. Do not let ANYONE push u. Explain to everybody around u that u have this problem, that u may cancel last minute plans with others. Listen to your body. Your body talks, you have to follow it before u go too far. Do not start any project before having fully recovered!

    Do blood tests, check that u are organically ok, search in depth.

    Good management in CFS plays a vital role. You may have a mild CFS and suddenly, if the damn constellation of tireness, anxiety and flu is created at a damned point of time, u can go to moderate or even severe CFS.

    My "perfect' constellation was created on January of this year. Anxiety, a damn flu, extreme tireness and very low level of vitamins and iron. Boom.

    Please do not arrive into a state when u will blame yourself.

    Having CFS or not, it is perfectly rational that you have to change your lifestyle and take very VERY good care of yourself constantly from now on, even if u feel good. Nobody will do it for u as well as u can do it for yourself.

    Hope my advice helps. Wish I had sb to give it to me some months before.
     
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  9. GlassHouse

    GlassHouse

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    I just turned 27 last May. Been ill nearly 6 years now (POTS for 11 years).

    Things have always been progressive for me and there have been triggers that precipitated a faster rate of decline (gallbladder failure in 2013, severe idiopathic hypersomnia resulting in loss of driver's license in 2014, liver inflammation and ascites in 2015, and c diff sepsis hospitalization in 2016).

    My spinal fluid shows high protein, indicating that I still have brain inflammation (my cfs started with a really high fever in Jan 2012) and my cytokine profile matches that of the atypical CFS patients (according to dr Peterson). I think this is why I keep sliding downhill.

    I find it hard to accept the constant decline at an age when I want to start a family. Sadly I can't because I already need someone to care for me. I try not to dwell on it but it's like every baby I see reminds me that I'd be an unfit mother (I'm asleep up to 22 hrs a day because of the hypersomnia).
     
  10. Dainty

    Dainty Senior Member

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    I'm 28.

    Onset began at age 13. I was "mild", meaning I could fake normal. But I had to drop out of gymnastics, which was a HUGE passion of mine. I was lying on the bleachers in between routines, and couldn't complete a floor routine without collapsing, sometimes in front of the judges. I was unable to keep up with school, even though I was homeschooled.

    At age 16 I had a summer of remission. Got caught up on school. I could run a mile with ease. I was able to keep food down. I thought I was fully better.

    That fall I relapsed into a fairly severe case. Almost completely bedridden, severe pain, severe MCS, moderate to severe POTS, lots of food issues, lots of neuro symptoms, couldn't hold conversations, couldn't handle any daylight whatsoever, significant noise sensitivity, severe memory problems....you get the gist, It was a blur. My MCS and food issues became life-threatening, when I was reacting to all known foods (the latter) or when I was having life-threatening reactions no matter where i was (the MCS).

    Fatigue so severe, so traumatic, I said it ought to be classified as a form of pain.
    I'd have to lay down and rest multiple times to and from a bathroom visit. I'd spend hours unable to roll over in bed, wanting to, but unable. Sometimes I'd lay there convincing myself to take the next breath, because it felt like if I didn't manually decide to breathe my body would simply be too tired to do it.

    The severity of various aspects of it fluctuated some, but it basically stayed around that level for about 8.5 years. After all that time, and all our efforts, I was still experiencing life-threatening issues on multiple fronts. And i decided to cease treatment and seek to only be made comfortable until I died.

    Ironically, that's what brought on a radical change that ended up bringing significant improvement for me. There's more to it than that, but I'm trying to be brief.

    I'm about.....4 years into my recovery? It's hard for me to keep my timeline straight. I've been obviously too disabled to work my entire adult life. But the past couple years started freelancing odd jobs. And a couple months ago I landed a unique part time job that I'm BARELY able to keep up with....but I can do it! I must nap for several hours after work, and 3 days a week is the most I can do, with one or two recovery days after. But I'm doing it. :)

    I still walk with hiking poles most of the time, and cannot walk long distances. And if I get out of breath my body has a very difficult time recovering. Occasionally I'll still have episodes where i become nearly paralyzed, which usually occur randomly during periods when I'm overdoing it, or sometimes in response to too much stimuli. It tends to last about 5-24 hours when it happens.

    For me, even though I was very young, my illness became quite severe. I definitely consider myself one of the lucky ones to have recovered this much. I now have fairly severe complex PTSD from the ordeal, and must be careful about sharing anything from that time because it can trigger flashbacks. But I'm the happiest I've ever been and engaged to the love of my life, with nothing but hope for the future.

    I hope this was helpful, and wishing you all the best in your journeys. <3
     
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  11. adelheid55

    adelheid55 Senior Member

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    Hi, my daughter is 29 and has been very ill for more than 4 years. She couldn't finish her Master course on computer sciences. And she is able to read here but cannot write. She is completely housebound and has to rest in bed a lot.

    I wouldn't say that younger onset leads to a milder version of ME/CFS. I think she would like to get in contact to younger members here, because she can't I will follow this thread. Maybe some day she will be able to write to you.

    Wishing you the very best!
     
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  12. notmyself

    notmyself Senior Member

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    I am sorry she is going trough so severe illness,i wish her all the best.I hope she will get better with time..
     
    adelheid55 likes this.
  13. notmyself

    notmyself Senior Member

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    Thanks for the reply, it's inspiring how powerfull you are to be honest, being unable to even roll in bed is something i just can't even understand,and despite that you fight and get better and you happy now.I am mild to the point i'm not even sure is cfs and yet still i am so miserable all the time..I probably should pe thankfull ..Thanks and i hope you keep getting better!!!!
     
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  14. Sabrina90

    Sabrina90

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    Hi, I'm 27 and I've had a huge crash despite being mild to moderate for just over 6 years. I had the Epstein Barr virus whilst at uni and working part time. I'm really struggling to think and put my words down at the moment and being new to this site I'm having a bit of trouble finding my way around. I'd really like to chat to people around my own age who understand the horror of flares. I'll be following this thread and reading some when possible xx
     
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  15. notmyself

    notmyself Senior Member

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    Hi and welcome, i'm sorry for your troubles..you will find a lot of answers on this forum,my case is little different then yours cause i don t have epstein barr and My symptoms are constant ,without drastic ''flares''..\If you need any information just ask..take care
     
    eric_gladiator likes this.
  16. HowToEscape?

    HowToEscape? Senior Member

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    Not everyone has muscle weakness or pain. Prolonged exhaustion, Brain fog and PEM are key features, combined with a few others.
     

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