Many people, especially young people, get worse with time. Am I right?

[AdamS]

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

Marginally yes, I have full control of what I do on a day-to-day basis now so can avoid the push/crash cycle better, but leaving work is isolating and has had a huge impact on my mental health.

 

[Marky90]

There is no data that suggests age is decisive for how your ME progress

There is no data that suggests that young people are more likely to recover

The data often referred to in these cases, are bad research. Ive checked multiple times.

What will make you worse is not taking due note to your PEM. And importantly: the PEM is a different animal for every patient. Trust your body, even if you hate it for being so severely ill.

 

[Marky90]

Marginally yes, I have full control of what I do on a day-to-day basis now so can avoid the push/crash cycle better, but leaving work is isolating and has had a huge impact on my mental health.

Yep leaving everything sucks. Groundhog day gets repetitive when ur not demented. I feel like an astronaut on Mars, with social media access. Gotta keep hoping someone comes around to pick us up, and then we`ll get back at it

 

[taniaaust1]

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.

5mths that's actually a positive thing, many more do recover when they have had it only for a short time. With the common diagnostic criteria used, many wouldnt even diagnose you at a 5mth point. Its a pity that your parent wont support you to have a break from your studies and just focus on recovering. Its this time now early illness, which is most important with what you do and dont do.

I dont know what country you are in but I strongly suggest to try to find yourself a good ME/CFS specialist and then use that specialist to help educate your parents so that they will be more supportive for this ilness then they are being now.

I was 26 or 27 when I first got this .. and like yourself I was pushing myself through studies. I was a full time college studen when I got sick I pushed myself until I just couldnt do a full study load and still pushed myself to do what I could having no choice but to do less and less of the subjects.

I manage to reach exams and found my head hadnt absorbed any of the info over the whole year.. it was like I hadnt been in class at all. It was a scary realisation to make. On reading your post, I suspect this could happen to you. I pushed myself hard for a whole year for NOTHING but an empty head, all study info lost... all the effort I put in was wasted and my health so damaged by this.

So I attempted to cram study for exams right before them but then kept crashing to the point I couldnt even do them as I'd just go into raging fever, all my glands would swell etc. In the end I had to discontinue my studies but then my pushing with the studies had made me so sick by this time that I ended up bedbound for 9mths, couldnt even walk to the toilet most of that time so somone had to empty the potty, bring me food etc etc. Completely bedbound.

I even lost my ability to speak for a while and was going comatose without waking for drinks or toilet for days at a time. I almost died. If u push yourself and get that sick, there is not much anyone can do to help.

It took me like 5-6 years then to recover.. I wish I'd just taken a year off when I first got unwell. I did competely recover many years later for several years and that was with aggressive rest therapy. Having a year off is nothing really when compared to you could be otherwise left disabled for life

Would your parents read here about what happened to me when I pushed myself to study with this illness, if you showed them this post. Sadly they are risking your health and they dont even realise it.

Find yourself a good specialist who understands well ME/CFS. Get some recommendations.

 

[*GG*]

I wonder if/when it happens, perhaps it is due to pushing to hard? I know lots of younger people think they are invincible when younger, as you get older, you start getting those aches and pains

Speaking as a 46 YO male.

Or it could just be the path They are on for their illness. If at all possible, do not push yourself to extremes

GG

 

[Skycloud]

Hi @Frustrated , I'm sorry to hear you are unwell and have to cope with that and the uncertainty at an important stage of your education all at the same time. It's tough! I hope the links provided above and other information here will be helpful to you and your parents. Which country are you in?


Your studies are obviously a worry. It may be possible to arrange things with your college to support you and accommodate your needs better, including with exams. I don't know what steps you and your parents have already taken, but there may be things that can help. I only know about the UK.

Think about reducing your timetable, or taking a break as has already been suggested. Here in the UK you can take 3 years to complete 6th form studies. Your best chance of doing well is to look after your health. Your best chance of improving your health at this stage is to reduce your activity.

My daughter is in a similar situation, struggling through GCSE's and year 12 (1st year of 6th form - we're in the UK) whilst unwell (but not ME). She's just stopped for a break and will restart year 12 in September. It wasn't easy for her to make this decision but she is happy with it. She has also had a reduced timetable and other help with her studies, and things put in place for exams prior to this.


Also, I wonder if those who are quite unwell or getting worse are more likely to self identify as having ME on social media and get involved with groups etc.? Some people who have improved or got better may have other things to do!

Try not to be too pessimistic

 

[AdamS]

Yep leaving everything sucks. Groundhog day gets repetitive when ur not demented. I feel like an astronaut on Mars, with social media access. Gotta keep hoping someone comes around to pick us up, and then we`ll get back at it

Couldn't have put it better myself mate!

 

[Frustrated]

I really want to drop out but there's no way people will tolerate me doing it now a few weeks before my A levels start

I feel like pushing myself to become severe. I don't want this. If I had the choice I would spend almost the entire day in bed and not do anything to stimulate myself physically, but I don't have a choice. When you are a teenager living under your parents' roof, living off their food etc. you do as your told.

 

[Valentijn]

When you are a teenager living under your parents' roof, living off their food etc. you do as your told.

Can you look into getting accommodations elsewhere? Your health really does need to take priority over your education. If there's no way to get your parents to understand that, you need to get into a situation where you have control over yourself.

 

[Skycloud]

I really want to drop out but there's no way people will tolerate me doing it now a few weeks before my A levels start

I feel like pushing myself to become severe. I don't want this. If I had the choice I would spend almost the entire day in bed and not do anything to stimulate myself physically, but I don't have a choice. When you are a teenager living under your parents' roof, living off their food etc. you do as your told.

Hi@Frustrated! Firstly, please, please don't push yourself to become severe!

No one here can tell you if you should sit your exams or not, but we can advise you that rest will help you and not resting enough can make you worse. Your GP, if he's got this working diagnosis of post viral fatigue syndrome, should support you here. You are 18 and can see him about your concerns on your own if you feel your parents aren't supporting you. I think sorting out the situation at college, for the sake of your health, is a priority.

People becoming ill before exams happens all the time. I'm not a trained advisor, I've just helped my daughter deal with a similar situation. She has just taken a break for her health, including ditching her AS level. She is retaking the year again from September, as I think I posted above. Perhaps our experience might help you.

There are things that can be done for people in your situation - have ANY steps been taken with your 6th form/college?? Are they fully informed about your illness??

People who need to know are the Special Needs Coordinator (SENCo), your Year Head or Head of Learning and your Form/Personal Tutor. A Pastoral Worker will be really approachable and helpful too. I don't know who is best for you to talk to first where you are, but you need to talk with somebody about how ill you are and your concerns asap if you haven't already. They can help you decide what to do and will help you do what needs to be done. The SENCo especially is paid specifically to do this.

I don't know what has been done by your college to help you, so apologies if what I say next is old.

Sitting Exams - Has anything been put in place to help you?

For example, you can apply for Special Consideration to be applied in the marking of your exams. This takes your illness into account and gives you a few extra points, not many, but it may make the difference between grades. Does the Examination Officer know about your illness, have they been given a letter from your GP? It's not too late to do this if not.

Also, chronically ill students can ask for things like extra time, supervised rest breaks, a quiet room in which to take your exams, and maybe other things to help. These Adjustments also need to be supported in a GP letter. The Special Needs Coordinator and the Examinations Officer deal with this. Again, approach your school/college and the Examinations Officer if not done already and see what they can do. You are disabled by your illness, they have to follow the regulations to help you.

If you are going to sit your exams but miss some because you are ill, the GP letter would cover you for that too, and there is a procedure to follow to give you a grade. The Examinations Officer can advise.

You and your parents may find this useful, It's the rules Examinations Officers have to follow. The things I've mentioned above are included there. Maybe other things would be relevant to you. See Section B Chapter 5 especially - link to download the JCQ regulations and guidance for exams:

http://www.jcq.org.uk/exams-office/...ngements-and-reasonable-adjustments-2016-2017

Stopping School :

This might be best for you. If you decide you can't do your exams, discuss this with your parent's and ask your college about taking an extra year to do your A levels, rather than just dropping out. It can be done. It could be the best way to look after your health and get your A Levels.

Lastly, here is a link to the website of the Tymes Trust, a charity for young people with ME that can give you advice.

http://tymestrust.org

From their website contact page:

"Leave your message on our Voicemail at 0845 003 9002 and we will prepare information to assist with your query before calling you back. Don't forget to speak clearly when leaving your number. We look forward to being of help. If you also give us some times when you'll be available to take our call, we'll do our best to fit in with your needs. "



Sorry if this is a bit long and rambley, I'm brain foggy. You really have my sympathy you're in a horrible stressful situation. There are people who can help you though, and we're always here too


ed-format

 

[AlwaysTired]

I really want to drop out but there's no way people will tolerate me doing it now a few weeks before my A levels start

I feel like pushing myself to become severe. I don't want this. If I had the choice I would spend almost the entire day in bed and not do anything to stimulate myself physically, but I don't have a choice. When you are a teenager living under your parents' roof, living off their food etc. you do as your told.

It really disturbs me that your parents don't seem to care about your health. Do they not care if you become so sick that you can't even speak? Or go to the toilet? Because these are some of many realities of people who have severe CFS/ME. Do they not realize that if you get severe you will be bed bound and unable to do anything at all? Then what good will A levels have been?

I wasn't suggesting previously that you tell them upfront that you're too sick to attend school for a long time, just take it day by day saying you're too sick to get out of bed, move, whatever is going on, and just say that each day. Eventually the days become weeks and weeks turn to months. Or is it not even acceptable to miss a day of school due to illness?

Sorry to say but what they are doing to you *is* abusive. What they are doing could push you into lifelong illness and disability. You do not want this to get severe.

My heart really goes out to you and I hope you are able to find a way to get the rest you need and get them to leave you alone. Getting a doctor that is supportive of you involved if you can will go a long way.

This just makes me really sad and angry...

 

[Dainty]

I got a "mild" case of it at age 13, (meaning I could kinda sorta fake wellness if I dropped out of almost everything). After a summer of remission at age 16, I then became mostly bedridden after attempting community college. I continued as mostly bedridden for about 8.5 years, I think. I was fighting for my life from a multiple of angles. We expected me to die.

But I started improving. I found some things that helped. And slowly, I improved.

I'm not well. But I'm in a ridiculously happy relationship with the love of my life, I only rarely need him to play caretaker these days, and I take care of him just as often. Last year I began earning an income for the first time ever in my adult life. I do odd jobs, mostly for friends and family. I cannot yet support myself fully, but I'm getting there. These days I often have long breaks in between symptoms, especially if I don't overdo it.

And I'm still improving.

I'm 28 now.

I feel like at least an entire decade of my life is basically missing.

But...I'm living NOW.

I know all stories don't turn out like mine, and I'm so sorry. But MY story has turned out this way, so there's a chance yours could too.

Take care, I'm rooting for you!

 

[Dainty]

Sorry to say but what they are doing to you *is* abusive. What they are doing could push you into lifelong illness and disability. You do not want this to get severe.

My heart really goes out to you and I hope you are able to find a way to get the rest you need and get them to leave you alone. Maybe getting a doctor that is supportive of you involved if you can will go a long way.

Quoted for truth.

I have seen similar stuff pop up elsewhere around here. If you are 18 you are now and adult who gets to make your own decisions about your body. If you decide your body is not up to doing something, you get to rest instead. If your parents think the world works differently, they are wrong. Parents are used to getting to control their kids, and when we are sick and living under their roof they often think they get to keep making decisions for us even after we're adults.

Links to a couple other threads regarding this so you know you aren't alone:

On asking family for help
Please help me find a medical explanation for noise sensitivity that will convince my parents

I know there are more, those are just what I've recently read and responded to.

I personally ended up living in a vehicle on the streets to get away from my parents' behavior. I risked my life to do it, as at the time I was still far too unwell to care for myself. I now have a fairly good relationship with my parents, but it required proving to them first that they no longer get to be in charge of my life. It proved a key part of my healing process.

 

[MargUK]

Marginally yes, I have full control of what I do on a day-to-day basis now so can avoid the push/crash cycle better, but leaving work is isolating and has had a huge impact on my mental health.

Completely agree with this. Although I consider myself lucky in that my symptoms came on 2 years ago when I was 56 so that at least I'd already had some life and winding down was slightly easier, giving up work was a tremendous shock. Initially it vastly reduced the stress of constantly having to get in touch with my boss and say I was signed off for yet another two/four weeks or the humiliation of desperately trying to live up to Occupational Health's suggestions of trying to do a graded return to work, but after a while when it hit me I may never return to work again, I was devastated. Not to mention terrified about what I was supposed to do about income for the next 10 years until I could get my pension!

I think it must be tremendously difficulty for young people to cope with this illness - first of all to convince anyone they're not just being lazy or 'not bothered' - but just the reality of trying to reduce your life at a time when you're supposed to have the most energy and have the world at your feet - I just can't imagine.

 

[Belgiangirl]

I got a "mild" case of it at age 13, (meaning I could kinda sorta fake wellness if I dropped out of almost everything). After a summer of remission at age 16, I then became mostly bedridden after attempting community college. I continued as mostly bedridden for about 8.5 years, I think. I was fighting for my life from a multiple of angles. We expected me to die.

But I started improving. I found some things that helped. And slowly, I improved.

I'm not well. But I'm in a ridiculously happy relationship with the love of my life, I only rarely need him to play caretaker these days, and I take care of him just as often. Last year I began earning an income for the first time ever in my adult life. I do odd jobs, mostly for friends and family. I cannot yet support myself fully, but I'm getting there. These days I often have long breaks in between symptoms, especially if I don't overdo it.

And I'm still improving.

I'm 28 now.

I feel like at least an entire decade of my life is basically missing.

But...I'm living NOW.

I know all stories don't turn out like mine, and I'm so sorry. But MY story has turned out this way, so there's a chance yours could too.

Take care, I'm rooting for you!

Can you please tell us what made you improve?

I'm ill from 15-16, now am 31.
What did doctors do since they thought you were not going to make it or they saw you were bedbound but found nothing to help you out?

 

[Ambrosia_angel]

@Frustrated

Please don't use internet anecdotes to measure the recover for ANY illness. It is very bias. Most people with severe illnesses tend to gather online way more that people with mild illnesses who are able to carry on with their lives somewhat normally.

Until their are accurate studies we won't know. But I do believe that young people have a better chance of recover. It's like that for a lot of illnesses. Our bodies are more likely to have been through less physically and emotionally. Then again I'm bias

On a note of the OPs exams. I think the issue here is that you are pushing yourself far beyond what you are able to manage and you have unintentionally created a facade. Therefore your parents see you as a lot better than you really are.

From what you've said, I don't believe family is being abusive but they are being ignorant. They feel your exams are more important than what they believe is mild fatigue. They want what's best for you in the future.

Honestly the best thing you could do in this case is the ease up on the amount of revision you are doing. Usually around the exam period you et study leave? Your health is more important than your exams and if I were you I'd only study when you feel well enough and then go to your exams which are often only 1 - 2 hrs a day. It's hard to manage but from what you've said it seems like the most realistic option for you. Do not studying unless you feel well enough!

You really should have more support. You could be able to get extra time for your exams as well. You can even get someone to scribe for you in class and take notes if you're too tired. If you get in touch with your school they can submit for extra time last minute sometimes. I've seen it happen before.

Please approach your head of year about your health issues. They may be more understanding than you think. Update us on how it goes. Good luck

 

[Dainty]

Can you please tell us what made you improve?

I'm ill from 15-16, now am 31.
What did doctors do since they thought you were not going to make it or they saw you were bedbound but found nothing to help you out?

The last doctor I saw at the time was double-board certified in both gastroenterology and internal medicine. He was also independently rated one of Seattle's top 10 doctors. At the end of the appointment, he said that 1) I was the sickest patient he had ever seen in over 30 years of practice, 2) I am too ill for private practice, period 3) My case requires several specialists all collaborating together on it at once. He said the most likely place we'll find answers is at the Mayo Clinic, but warned that even there, it was unlikely the answers would be found. But it was my best shot.

Basically, most doctors washed their hands of me. The good ones passed me along confident I'd find someone else better able to help me out. The bad ones...well, we all know what that's like.

What made me improve is difficult to summarize. Cranial osteopathy treatments was a key factor (skip to last paragraph for links), but not the only one. I did it for the symptomatic relief while I waited to die.

One thing cranial osteopathy did was give my body a MUCH louder voice regarding what it needed. I listened, and turned my life completely upside down and inside out to comply. I was already doing intense lifestyle management, but this was an entirely different thing. This was my body continuously bugging me to do bizarre stuff that helped. For example, my body would tell me when (gross alert!) I needed to sit on the toilet with a turd hanging halfway out for a good hour or so because it was helping my coccyx. Or to spend several days laying only in one specific position, breathing specific ways. Or even that certain mindsets were directly damaging my healing process. Or spending hours just vocalizing random sounds because for whatever weird reason it helped.

I transformed from a total prude who felt even masturbation was "wrong" to someone with a large sex toy collection, purely because my body required it to heal. That in and of itself is a pretty incredible story. The month I got my first sex toys, at the next appointment my osteo - whom I had been seeing for years - said "You've just gone from being a complex patient to a boring one." He and his apprentice were totally stunned by the difference. And I hadn't even told them what I did!

I went from someone who kept emotions in to someone who expresses them freely, because if I don't my health takes a dramatic step backwards. I lost the good graces of my entire in-person support network along the way. It was not easy. I gave up key aspects of my religion, because I decided that anything that interfered with healing couldn't possibly be correct. I had to cut out anyone from my life who did not have a positive effect on my healing process. Some of them were toxic, while others had no fault - just somehow didn't jive with what my body needed.

At any step of the way I could have stopped, but my healing would have stopped too.

When I first saw my osteopath, before even examining me he looked at how I was breathing from across the room and said: "You're breathing with a catch, as though bracing yourself to hit the ground after you've begun to fall." My body was in a continuous state of bracing for and expecting trauma. Osteopathy is all about helping tissues release and recover from trauma. I had a lot of structural issues (that no chiropractor was ever able to find) and the reasons behind them or behind why they didn't resolve on their own were often related to various life stuff I needed to work through.

The simplest straightfoward example I can give is my ribcage was compressed, which prevented breathing deeply. I didn't know this because I had never known anything different. One way emotional states can affect structural things is through lack of movement. So having anxiety through key development years means shallow breathing, which means the ribcage never expanded like it was supposed to. It didn't get the movement it needed to reach the proper shape. Osteopathy can coax the body into expanding the ribs out to where they need to be, which was a painful and shocking and amazingly relieving process. I felt like I was breathing for the first time in my life, it was glorious! But if I don't continue taking deep breaths it will return to its previous state.

The process forced me to face the fact that my parents' behavior was abusive, even though they cared about me and sacrificed a lot. I was unable to get the rest I needed with their behavior repeatedly putting me on edge and stifling my autonomy. As I recovered, their behavior towards me worsened, until I risked my life to live in a van on the streets when I still couldn't care for myself. Free of the daily emotional trauma, I could rest even more deeply, and my healing continued despite multiple close calls where strangers saved my life.

I should just end this there - I apologize for the long post. This website explains more about osteopathy and The Cranial Academy has a good starting point for finding a physician in the U.S. I'd recommend only considering those who do it on 100% of their patients. And ask around - my osteo was not on that list but recommended by another osteo who was, once she heard how severe my case was.

@Belgiangirl I'm so sorry you're going through this. I'm hoping hard for any sort of relief for you, and offering virtual hugs in the meantime.

 

[Neunistiva]

Most people with severe illnesses tend to gather online way more that people with mild illnesses who are able to carry on with their lives somewhat normally.

When it comes to ME/CFS though, people with severe illness are too sick to type and look at a screen. There's a reason why we use hashtag #MillionsMissing. On the other hand, a lot of people with mild illness tend to be very active in blogging, protesting, making films and advocating for all of us, so it seems to me we have a chance to hear a lot more about people with mild ME/CFS than severe.

 

[Ambrosia_angel]

When it comes to ME/CFS though, people with severe illness are too sick to type and look at a screen. There's a reason why we use hashtag #MillionsMissing. On the other hand, a lot of people with mild illness tend to be very active in blogging, protesting, making films and advocating for all of us, so it seems to me we have a chance to hear a lot more about people with mild ME/CFS than severe.

I think you misinterpreted what I was trying to say. I'm not saying that people with mild illnesses aren't active in activism because we know that they are. When I talk about recovery and how mild and severe illnesses are I tend to refer to people with chronic illness as a whole and not just ME. People who suffer mild chronic illnesses tend to need less support because it affects their life in such a minor way. The main focus of their life wouldn't necessarily be activism because the illness hasn't/doesn't affect very much. Their main focus is more likely to be trying to balance work, family and friends on top of their chronic illness.

In response to what you say about severe ME. That's more of an anecdotal observation. People with severe ME are able to look at a computer screens and participate with online discussion. Others aren't. It varies. I had severe ME myself and my time was spent online forum and knitting. I think you'd be surprised at how many people who consider themselves to have severe ME (what I'd class as mostly house and bed bound) are active on here. Joining online communities allows you to have contact with the outside world that is taken away when you are severely ill.

I'm just speaking from the experience of being on here and other health forums as well. My experiences could also be classed as anecdotal.

 

[Neunistiva]

In response to what you say about severe ME. That's more of an anecdotal observation. People with severe ME are able to look at a computer screens and participate with online discussion. Others aren't. It varies. I had severe ME myself and my time was spent online forum and knitting. I think you'd be surprised at how many people who consider themselves to have severe ME (what I'd class as mostly house and bed bound) are active on here.

It was not my intention of getting into discussion about how to define "severe" ME/CFS patients, but to point out that there are people with ME/CFS who are too ill to communicate online (this is a fact that you can check) and that we have much better chance of coming across someone who is at this moment mildly ill like Cort Johnson or Jennifer Brea, than someone who is very severe like Whitney Dafoe or Karina Hansen. We wouldn't even know they existed if they didn't have loving families fighting for them.