Severe ME Day of Understanding and Remembrance: Aug. 8, 2017
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Many people, especially young people, get worse with time. Am I right?

Discussion in 'General ME/CFS Discussion' started by Frustrated, May 9, 2017.

  1. Frustrated

    Frustrated

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    I've been following a lot of other teenagers (I'm 18) on social media with ME/CFS. They all seem to deteriorate and never get better. It seems like many start out being able to still go out, then they worsen, become housebound, then bedridden and get stuck in hospital. Could this be because our nervous systems are damaged at a vulnerable age when they're still developing?
     
  2. TigerLilea

    TigerLilea Senior Member

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    It's the younger people who haven't had CFS/ME for too long that have the BEST chance of recovery.
     
  3. AdamS

    AdamS Senior Member

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    Firstly, i'm sorry to hear that you have this devastating illness aged just 18.

    In terms of getting worse over time, that's a hard question to answer. The push/crash cycle which causes PEM has been suggested to keep the disease going or in some cases make it worse, it's definitely advisable to avoid pushing through any boundaries.

    Additionally, other factors such as viruses, infections, surgery/trauma seem to commonly make people worse.

    In terms of age/not being fully developed at onset, i'm not sure, it is a good question though.
     
  4. MEMum

    MEMum Senior Member

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    Hi frustrated.
    The good news is that there are huge advances being made in biomedical research.
    This is mostly in other countries due to the tragedy of PACE. However I feel that there is a growing volume of journal articles/letters/editorials alongside the proponents shooting themselves in the foot... that it will be challenged in the media, funding institutions, politicians... before too long.
    Hopefully UK and Europe-wide #MILLIONSMISSING events this Friday will help this process along.

    see https://www.facebook.com/events/414...sion_id":"91a749189556742c2ba3d7879b4e9aff"}}
     
    Snowdrop likes this.
  5. Frustrated

    Frustrated

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    People always say that but is there any data to back it up?
    Well I haven't been diagnosed yet but yeah I'm like 100% sure I have it. Wish I could I see don't suffer from this post-viral chronic fatigue crap and it be something actually treatable but so far no tests have shown anything wrong with me. I've been ill for 5 months now almost with 0 improvement so it seems that it's just an urban myth that young people get better.
     
  6. AdamS

    AdamS Senior Member

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    I'm in a similar situation to you, i'm 25 though. What is your current level of functioning out of interest?
     
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  7. Frustrated

    Frustrated

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    I can still force myself to go to 6th form/college everyday, but cannot concentrate on anything and feel ill 24/7. What about you?
     
  8. AdamS

    AdamS Senior Member

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    I was forcing myself to go to work initially, but after around 2 months I had to give up, be careful, I really hope you don't have ME.
     
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  9. Frustrated

    Frustrated

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    Well I have post-viral fatigue so I automatically have ME :(
     
  10. Snowdrop

    Snowdrop Rebel without a biscuit

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    @Frustrated

    If you were my child I'd tell you that it's best not to worry as to whether anyone else gets better or worse from anecdotal reports.

    You may not want to hear this but you have not been sick that long (I know that it feels differently and that you must be scared).

    There is something called Post Viral fatigue where people do recover within a few years and it is still unclear as to your diagnosis.

    What's IS important is what is best done for you. Finding some symptomatic relief if possible, resting more than you think necessary if possible, connecting with others and trying to keep a realistic attitude neither expecting miracles from some treatment or despairing that nothing will change.

    While there may not be any medical help on offer through normal medical channels there is still hope.

    I don't know how much you know so far about ME but MEMum is right. Things are very much changing in ME research and also attitudes in the media.

    Here are a few links that might be of interest:

    Diagnostic criteria for ME:

    http://onlinelibrary.wiley.com/doi/10.1111/j.1365-2796.2011.02428.x/full

    Change in how ME is viewed and treated will take time. Many here although quite sick are fighting for change so that anyone presently being diagnosed with ME won't have to suffer the same decades of abuse they did.

    See:

    https://millionsmissing.meaction.net/

    http://www.unrest.film/about/ The documentary film Unrest will premiere in the UK in Sheffield June 10th.

    for info in the UK see:

    http://www.investinme.org/landerP5.shtml
     
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  11. slysaint

    slysaint Senior Member

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    This is the classic problem at the beginning; ie doing too much even though you feel you can handle it.
    It is incredibly hard(particularly at your young age), but cutting back on activities, getting to bed earlier, and learning to relax, really taking it easy and looking after yourself need to be your main priorities.
     
    justy, Barry53, TrixieStix and 7 others like this.
  12. Wonko

    Wonko Senior Member

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    The other side.
    If it's all cost and no benefit then why do it? ( a lesson it took me many, many years to learn)
     
  13. Frustrated

    Frustrated

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    Because it's not my choice. If it were up to me I would drop out, but my parents would go mad if I did that so I have no choice.
     
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  14. ljimbo423

    ljimbo423 Senior Member

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    @Frustrated- I'm really sorry to hear that are ill! I got cfs/me for the first time when I was 18 also. I cleaned up the junk food in my diet, like cookies, cakes, etc, and quit drinking. I slowly over about 2 years went into remission and was able to work again, full time for many years. I eventually got sick again. Had I known back then what I know now, I don't believe I would have gotten sick the second time.

    I was 80-90% bedridden at one point after my second onset of cfs. Now I rarely even take naps, sleep only 8 hours a day and continue to improve! So improvement is, without a doubt possible.

    I don't know what you have heard about dysbiosis and leaky gut but treating these things have made me feel tremendously better, in just a few months! Here is a study talking about treating leaky gut. People that were younger and ill less than 5 years showed a MUCH better response to treatment.

    In this study they didn't even use antibiotics or antibiotic herbs to treat the dysbiosis that often causes the leaky gut to begin with. Had they done that, I am sure the improvements seen in these patients would have been dramatically better.

    This is the link to the study-

    Bolding and underlining mine.

     
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  15. AdamS

    AdamS Senior Member

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    @ljimbo423

    Interesting. What supps did you take? Glutamine, N-acetyl cysteine and zinc as shown in the study? At what dosages?
     
    MEMum likes this.
  16. Hutan

    Hutan Senior Member

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    @Frustrated, my son must be about your age. He has had ME since he was 13. He got worse when he was doing too much. And he has improved when he has reduced activity. He is still far from well, but his current level of activity allows him to enjoy life and to gather qualifications and experience that will help him achieve his aims.

    My daughter got ME at the same time as my son (and I). She improved back to very nearly full health over two years. She now goes to university and has a full and good life.

    You do have choices although of course there are consequences and only you can decide what is possible for you. At some point though, if you keep pushing yourself, your body may do the deciding. My son eventually got to a point where he was sleeping 20 hours a day and could hardly walk.

    I really encourage you to talk to your parents and try to arrange for you to take the rest of the school year off. One year of school is very little in the scheme of things. Don't frame it in terms of dropping out - it's just a break to help you recover. What country do you live in?

    This whole thread
    http://forums.phoenixrising.me/inde...ng-teenager-with-cfs.50626/page-2#post-835473
    would be good for you and your parents to read. The particular post I've linked to on the thread gives some more detail about my son's experience.

    This thread addresses your question about the prognosis for young people.
    http://forums.phoenixrising.me/inde...ecovery-how-much-do-we-know-about-this.50570/
     
    Last edited: May 9, 2017
  17. MEMum

    MEMum Senior Member

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    Are you able to say where you are being "treated". I found it unbelievable that at Great Ormond St they could only trot out the CBT/GET mantra. This did nothing for my daughterage 16. Fortunately the GET was so ridiculously out of reach there was no way she could even attempt it. She was just so desperate to get better she was saying "Yes I think I could do that". The psychotherapist was actually quite reasonable and sessions were done with parent(s). There was no pushing of you have false illness beliefs/you are deconditioned, from her. Both physio and psych moved on shortly after we left...
     
  18. boombachi

    boombachi Senior Member

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    @Frustrated, one thing that is repeated here time and time again is how important rest is in the early stages. Its important later too but we get better at it. About 3 years into being ill I finally gave in to it and asked my doctor to sign me off sick. I was amazed that after about 3 weeks of sleeping most of the days and night I started to experience days with less severe symptoms. I got to a point where I actually couldn't fall asleep during the day. Unfortunately this is not a realistic way to live my life so it didn't last but it helped me understand the connection between activity and symptoms.

    It might be that a few months off college will make a difference. No one really knows the answer to this but we definitely know that pushing through the fatigue is a risk factor for getting worse. Can you get your parents on your side with this? Are they open to joining the parents/carers forum on PR.

    @AdamS, did you notice an improvement when you gave up work?

    Trying to predict the future will do your head in. If you need to sleep today -sleep! Take one day at a time.
     
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  19. boombachi

    boombachi Senior Member

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    Wish I had said all that suff.....wise words
     
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  20. AlwaysTired

    AlwaysTired

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    Can you just stop going to class without officially dropping out? Maybe if you say you're physically too sick they will realize how serious this is. You need to be resting right now and not pushing yourself or you will likely make things worse. I dragged myself to work for a month and a half like this, because I technically could, but I wish I hadn't now (I didn't know what was going on at the time though).

    Your health is the most important thing. You need to take care of yourself and make it clear to your parents that it's not a matter of not wanting to go to class, but that you can't because you're way too sick.
     
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