At crises point and needs advice

Brain and nerves
1

Hey all! I'm 16 (from Australia) and really hoping to find people that understands what I'm going through and hopefully can offer some advice or opinions.

I'm really sorry for the long post... But there's so much more ..then this, so I tried really hard to shorten it. I feel like I just need to get all of this out there.

I am currently in the process of a CFS diagnosis, and although I have not been diagnosed as of yet,  I am at crises point. I have a specialist appointment in over a months time (it was a 3 month wait); and I will be 17 at that time (the day after my birthday) I would like to know what others think, if I have it or not judging by your knowledge and experience, or if it could be something else...

As much as I hope that CFS is not the reason (my older sister was diagnosed over 2 years ago in year 12, so I am aware of the struggles that accompany CFS) for all this, I really need answers. I know that until my specialists appt. not much can be done for the documentation side of things for school etc. but the fear of the unknown is becoming really distressing. I need to know that what's happening to me is not in my head, I need some form of confirmation, anything that will put me at ease for the coming month... 

Middle of last year I became unwell after a few things had happened in my life. Ever since then I've slowly gotten worse. I was 15 then, healthy, active and doing really well at school. I thought that what I was experiencing was what everyone else around was going through as well, and I was just 'weak'. It's so common for teens to complain of being tired and unmotivated. But days would become and still are unbearable, with overwhelming fatigue , muscle soreness, brain fog, and headaches. I also suffer from really bad nausea, diarrhoea and much more.

I didn't mention anything to anyone, not even my family as I thought that if I just got myself in a routine I would begin to get better. I felt like I could handle it and didn't need any help. But the major thing was that I thought myself to be too weak for simply not being able to overcome all this and that it was all in my head. I thought that I just needed more sleep. But mo matter how much sleep I got, I was still overwhelming tired and I began to feel frustrated with myself.

I've played basketball for over 6 years, and as much as I enjoy it, I resent it for the way it makes feel following the days and even weeks afterwards. Things were getting tougher in April this year. My breaking point was going back to school and basketball again after 2 week school holiday. I had an extended day at school and an intensely  hard training session where I pushed myself to far. Everything just came at once. I had been feeling this way, and was getting worse for so long. I've never been "sick" in my life, and hadn't been to the doctors in years. I was at a complete loss of what to do. 

Since April I have been to 6 different doctors (at the same clinic). The first two appointments I was so out of it, and couldn't communicate my symptoms and the history. The third, I decided to bring a list, however without any discussion, the doctor had already diagnosed me as depressed with mild anxiety, ignoring most of the symptoms and only taking those that fell in that profile. This made me second guess myself, maybe it is in my head.

At my fourth appointment, I finally felt like someone was understanding me. She actually asked questions, and believed me that it wasn't a 'mood thing'. She ordered many tests, such as rheumatoid arthritis, celiac and many more, all with a negative result.

The fifth doctor decided that antidepressants might be helpful. But nothing was getting any better. Finally the sixth... At the time I wouldn't have thought this, but the wait was worth it. He understood to a degree how much this was really starting to drag me down. I had had over 2 weeks off in the span of 8 weeks whilst at school. Following discussion, he suggested that we increase my dosage to try and rule it out as a way to manage my symptoms and he would also refer to a CFS specialist. Finally something more long term was being done.

I'm still slowly getting worse, as the demand of school and sport constantly make me have crushes. School is getting really hard. But nothing can be done officially until I'm diagnosed. Weekends are no longer enough time to recover. I come home from school exhausted, nap until evening, attempt homework that doesn't get me anywhere. 

I'm in a really crucial year at school, and unfortunately I have taken on extra subjects, doing more than most of my peers, but also doing 2 year 12 subjects whilst everyone in my year are doing only one. Don't get me wrong, I enjoy school so much, and am doing really well. I wish so badly that I'm not sick so that I could do as well as I know that I am capable of. But I'm not sure how much longer I can continue this pace. 

I want to study medicine once out of high school, but I'm not sure what I should be thinking about regarding my future. It seems like all my dreams and aspirations are slowing slipping out of my reach.

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Dear 'Makeely', my heart goes out to you. But your story sounds so typical of CFS. High achiever, pushing yourself etc etc. My CFS started when I was about twelve (but I didn't have an official diagnosis until in my forties!! I'm 59 now). For the sake of your future it sounds as if you need to pull back a bit at the moment. Much though you love it, are you able to give the sport a miss for the time being? There comes a time when we need to listen to these old bodies instead of pushing them over their limit.  Fortunately you are young and, hopefully, with the right management at the outset you may well be able to get a good recovery. YOU ARE NOT WEAK! And, when you go on to do medicine the experience you are having now will make you an even better doctor.  i do hope that the specialists appointment is constructive, and maybe you need to work with an Occupational Therapist who understands CFS to look at yoour daily schedule and see where you can 'drop' a few things and build in rest periods. The concept of having CFS/ME specialists is still new to me..... I've only ever seen one (and that was privately) but he was amazing. You will be in my thoughts and prayers.

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Wow! I’m so sorry you’re going through this, and at such a young age. First off, and I can’t say this strongly enough: it’s not in your head! Your symptoms sound spot-on for ME/CFS. But you do need to get complete bloodwork done to rule out other diseases, if you haven’t already done so. I think it’s shameful that doctors you’ve seen are fobbing your symptoms off as depression and anxiety. Unfortunately, this happens all the time to people with ME/CFS. Doctors all over the world are still woefully uninformed about this illness. Therefore, we have to be our own advocates, insisting on being taken seriously. When I first got ill, my doctor told me I just needed a vacation. So I saw a second doctor. She told me a lot of doctors (obviously, her included), didn’t think ME/CFS was a real disease. But I knew I was very ill, so I went to a specialist at UCLA (I live in California). I was diagnosed with ME/CFS within 20 minutes, just by him reviewed my normal bloodwork and asking me questions. You’re obviously very Internet savvy, so you have one tool I didn’t have when I first got ill. Google “ME/CFS symptoms” and see if  what you read sounds familiar. Here’s another piece of advice: you need to cut way back on your activities. This may be hard for you to “hear,” but I think you should stop doing sports right now. This can make the illness way worse, I mean waaaay worse, and can lessen your chances for a good recovery. If there’s any way you can cut back on school activities, do that, too. Can you take some sick time? Or rest at home while friends bring you homework? I know that this is extremely hard to do, and I’m only suggesting it so that you can rest and give your body a chance to get better. To maximize chances of recovery, rest and pacing yourself is extremely important. You can’t exercise your way out of ME/CFS. Beware of programs that advocate GET (graded exercise therapy). This can result in severe relapse and has been widely questioned as a viable therapy. Eat healthfully, avoiding alcohol, caffeine, and sugar. You might find that eating foods with protein can help. Get a good night’s sleep if you’re able to do this. And de-stress as best you can, whether it be by listening to music, deep breathing, or meditation. Stress is really bad for this illness. Finally, trust yourself. I know this is hard when doctors are questioning your symptoms, but nobody knows your body like you do. Even the so-called experts. Best of luck to you. Let us know how you’re doing.

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Dear makeeely. I am very very sorry for you, getting what sounds like ME so young. There might still me a chance that it is something else, but in that case probably something in the same vein.

In case it is: STOP driving yourself so hard! There is a risk that you are making it worse, or ruining the chance of it eventually getting better.

I realize this is incredibly hard to do, but please listen, this risk is there. it happens to some.

Do not think of the future right now, do not try to understand what ME might mean. Just SLOW DOWN, and wait for the result.  Take things one step at a time.

And we are still here when you get it.

The very very best of luck.

 

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Hi makeely; I Totally agree with what the others have said......two things that I will add are 1st)...think also of Fibro, as if you get Bad Pain, too, this may be an extension of CFS...and will treating as well.............2nd)...as you are still young,and if you do get an Official Diagnosis, would you consider talking a Break from School for a year..(even 6 months)...for that will give your body a real good rest...and then you can put All of your efforts into your study and then proceed to uni/Med school....if you don't heal properly now, you Won't be able to cope at Uni....and this is what we want for you...a Real Good Caring Doctor...think about this, and talk to your parents...if your sister has been through this, they should understand, and know how to deal with your situation....did your sister recover?...it really upsets me to think that people (like you), are succumbing to this/these conditions, and Really makes me wonder, What is happening to us all....I, too had a Full load during my last 2 years (studying 7 senior subjects)..but didn't get sick then....there has to be something that is causing this epidemic (for that's what I feel it is becoming)....please keep in contact, as you are special, and we want to help you through.........do you have a sports' physio...they can work wonders on our bodies after exercise...and take supplements, now, even if you don't get a positive result, they can't hurt...............Bron

6

Thanks Deborah so very very much for your response. I am very lucky that I have access to such specialists, as I know that there are others who are not as fortunate. I have seriously considered stopping sport but as much as my brain is telling me that it would be the right thing, I'm going to really struggle to give up something that I love so very much, and is a major part of my life... I know that I should listen to my body, however as much as it screams out for me to stop, and I want to stop, I don't feel like my life at this moment allows me the time to be sick. I'm forced to carry on and push through days acting as if nothing is wrong, and that in it self is tiring. I will look into Occupational Therapy, and hopefully something like that will be of great help. Thanks again, I really appreciate it everything that you have said !

7

Hi Makeely, welcome to the site.  Hear you will be listened to, every word you type.  It is definitely not in your head.  I know of a couple of young people who have cfs/me.  One was diagnosed at 14 and the other at 17.  You really and truly must cut back, especially on the exercise.  I know it is extremely hard thing to think about and do, but if you don't then you could be heading for a very rough road in the future, one which all of us here who have suffered this illness for years, do not wish you to take.  Speak to your sports teacher, or get your parents to.  Maybe you could still be involved by doing a bit of coaching.  Take 30 min break after every 1 1/2 hour of school work.  Tell your teachers what is happening so they can make provisions for you.  If they don't know they can't help.  If you explain how ill you are feeling they have a duty of care whilst you are in their school and teaching period.

Don't worry about the anxiety diagnosis and anti-depressants.  I was given many until I was placed on pregablin which I take now.  I have had the illness for 7years now, it hit me in my 40's.  It was  mild to begin with and I thought I could cope and kept pushing myself with family life and even more with work.  I had a major relapse in 2013 which affected my mobility quite a bit, and have been hit by really bad pain.  This is not the route for you.  You MUST, MUST, listen to your body.  I agree with what has been said, eat healthy, don't be pushed into exercise, let your body try and heal.  It you are going to heal it will be quicker for you as you are young.  Go to Action for ME site for advice and guidance on how to approach different people with your condition, and see what you should expect.

I wish you all the luck in the world and hope you suceed in fullfilling your dreams and ambitions.

Now don't forget we are here when the going gets tough.  We have all been through it and know exactly how you feel.

All the very best

Tx

8

Hi, Bron: You use the word "epidemic," and I think you're right. I've been thinking about this a lot lately. I believe that ME/CFS is truly a worldwide epidemic. And, for the most part, it's being ignored by governments and the medical community. How can this happen? I would bet that it's the number 1 cause of people not being able to work, and ends up costing huge amounts of money in disability programs throughout the world. I think part of the problem is that we're so disabled, so deeply fatigued, that we're unable to advocate for ourselves. As we withdraw from our community because of our fatigue and illness, we become invisible.

9

Morning jackie;  yes, but my mind Won't stop thinking, as I would like to know why???    and yes, I thought it was "random", until coming on this forum, and realized It's worldwide, and too many differing factors (countries/climates/lifestyles), so what is the causitive factor?..I can't say that I've read re any asian/iindian/middle eastern areas on here, yet, but does that mean that they, too,  are healthy/ill?

10

 I know that major research has been done in Japan, so ME/CFS must exist there. So I assume it also exists in other Asian countries. I don't know the extent to which they have the illness. There could be a predisposition in certain groups of people to having/not having the disease. For instance, blacks are more likely to get sickle cell anemia. East European Jews are more likely to get Tay-Sachs. But I think that a huge number of people worldwide are struggling with ME/CFS. My doctor and others in the filed estimate as many as 17 million.

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so that means we  have to start donating monies into research for these conditions....they ask for "cancer research and others", and have made treatment more advanced......now we need to firstly Find the researchers and give them a helping hand.....for if teens are succumbing....it's too much, they havn't even lived yet?  so that puts a Big question mark against the "life's stressors" causing the condition.....opens many tins of worms for me.......Bron

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Yep, Bron. Research is where it's at. I've donated money via a crowd-sourcing site to one researcher in the U.S. I also give to the "Solve ME/CFS Initiative," formerly called The CFIDS Association. But what galls me is that the U.S. government funds ME/CFS research to a lower level than hayfever! 

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Thank you so much for your reply. Apologies for the long long delay in getting back to you...

It's hard to expalian just how relived I am to know that there are people out there like yourself that are willing to give advice and support.

I have looked into ME/CFS via google, and it does sound very similar to everything that I am experiencing... It is nice to know that there is something out there that can expalin all of this, and although it potentially may not be ME/CFS, it certaintly seems to be in that general area. I have cut back on a few more activities, however I had already done this in the previous year/months. I have discussed with my parents about school and sport, although they seem to be taking the "let's wait and see" approach. They do not want me making decisions without being officailly diagnosed. 

It is very hard to explain to them how hard I am trying to keep up with everything, and the fact that if I say I can't do something, then I physically can't. I am struggling to get to them to understand, but it's difficult when they're not able to. I guess that is one of the hardest things.

This past month I have struggled alot, especially as i notice how ill I'm actually feeling. I have my specialist appt, in 2 weeks. Although I have been feeling worse then what i previously have been, my head is in a much better place. I am fearful though that this appt. won't offer any answers... I have placed so much hope into this, what if nothing can be resolved? I know that it's silly to be thinking about the what if's, but the uncertaintaty is still there.

Thanks again, Makeely

14

Thanks for taking the time to reply. I apologies that it's been so long.

I am so so so so hoping that it is not ME. But at the same time, it would be really nice to get some answers and have a reason for feeling like this.

In the past month I have definetly learnt the effects of pushing to far... I am trying really hard to avoid doing it, but I guess I am still learning.

I have finally discovered to an extent that it is silly to think about the furture when it is out of my hands. Taking it one step at a time is the only way that I have been able to keep my self sane these past months.

Thanks for the advice  

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Thank you for taking the time to reply. I am sorry that it has taken me so long to write back.

I will keep Fibro in mind and continue to look into it as well. I know that as far as school goes, I could take a break but that would have to be a year. However there is an option to split the workload of the final year over two years, which was what my sister had done. In an ideal world I would prefer to graduate with all my friends, but what is the point if I run myself down to the extent of being unable to put my best efforts into Uni.

I have had a real hard time trying to communicate with my parents and family as to how I am feeling. Early on when I began going to the doctors, my mum was convinced that I was depressed. She herself has gone through a hard time, and I belive it doesn't help when she sees so much of herself in me.

My sister has also been giving me a hard time, as "I don't look sick", "I am not bedridden" and "I appear to not struggle". It makes me upset that out of anyone she would be the one that would understand the most... She seems to have this idea that because I don't have the same symptoms as her, then I mustn't be sick, because I don't voice how I'm feeling and I'm not constaly reminding everyone around me, because I seem to be able to get through days without many problems. She seems to have improved, however it is difficult for me to tell as we don't really discuss those type of things (unfortunetly).

I have never been the type of person to speak out when I am feeling unwell, even to my mum who is a nurse. And the times that I have she dismisses it. However as she is a nurse, my family have many stories where she has dismissed some serious conditions/injuries, but that is another story

Do know how I could try and explain it to my mum? I feel as if sometimes she does understand, but then other times all the progess we have made has gone out the window. I am not sure if this is because she doesn't undrestand, belives it to be depression, or is in denial that I am not well...

Thank you so much for your kind words. Just simply knowing that there are people here that will listen is comforting.

16

It is odd that ME/CFS is a relativly well know condition compared to some due to it being worldwide, yet little is being done in ragards to research. However I think another problem is that there are few people out there that would actually know what it is unless they themselves actively looked into. All of us are aware of diseases such as cancer etc. which is why we donate money and time into that area of reasearch.

I agree jackie. It would be increadibly difficult to advocate when one is so ill. I think it's unfair that people with ME/CFS should worry about advocating for others, when their main prioty should be themselves and their health.

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Thank you for your reply. I really appriaciate you taking the time to write back and I apologies that it has been so long. It is so good to know that there is some where I can go where people can understand me and what I am going through.

I have cut back on some activities, but there aren't many more that I can without an official reason. The school are aware, and some of my techers have been fanatastic, however it is diffucult when you yourself do not know what you have and how to deal with it. I have mentioned many times that I am far behind on work, but they keep dismissing it (including my mum) saying that I am not as far as what I think, and coming up with different excuses. I feel as if some of my teachers view me as being uninterested in class, but I don't belive that they know it is just because I am struggling to stay awake and deal with how unwell I am feeling. I'm afarid that I come across as being rude sometimes.

I have been listening alot more to my body. But when I say that I can't do something, my mum says you need to push through. It's so fustrating that no matter what I try, I still can not get her to understand. There are many many many times that I know I really can't do something and the best thing for me to do is just stop and rest. However, others don't seem to realise how overwhemling everything can get. And although I may complete what I said I couldn't, I most definetly pay for it later. Some days I have no idea how I was able to get through without collapsing...

I have visited the site and it looks very very helpful!

I have been thinking recetly about stopping the anti-depressants...? They do not seem to be helping, and to be complety honest my mum is giving me a hard time as she does belive they are, which is only reinforcing her idea that I am depressed/have anxiety. Would it be a good idea to bring this up the GP or wait until my specialist appt.?

There are times when I am so exhausted during the day. Is it best to rest up, or have a nap? Sometimes I feel as if I'm in this state where I don't have the energy to do anything, yet I am not sleepy enough to nap.

It is hard to express how much it means to me that I able to be completly honest and have people know how I am feeling.

I am a little unsure of what will happen at this appt. Is there anything I can do to prepare? With previous appointments I have found it very difficult to explain my situation, especially when it comes to symptoms as I tend to forget all the history and only focus on the previous day. Which is very annoying.

Thanks once again, Makeely.

 

18

Hi makeely,

Its so hard when those closest to us don't seem to hear or see how ill we are but, we still need that support! Your sister is probably just being a sister and not quite getting that you're ill like she has been because, as she says-you look ok. I too look ok but, I too, like you have the symptoms on the Inside, as most people on this forum. Its a shame that as your sister has had this there Isn't a bit more more understanding for you but, cfs/me seems totally misunderstood by the majority. Also, your mum maybe scared that you have cfs if she has watched your sister with It too?

You asked how can you get mum to understand and I recommend writing a letter to her. Letters still have an amazing affect and you can write everything you feel necessary.

I know you came on here as you felt at crisis point, you have an idea of your future in the medical profession and maybe this difficult time right now will be really useful then in your work. Now though, put your thoughts to caring for you. If you need to take a break break from school, do so. If you don't graduate with your peers, don't feel bad but do try to enjoy the end party with them.

If you have to drop sports, you can rejoin when you're less fatigued I hope?

If it is a cfs/me diagnosis, you'll hopefully get more support from school, the medical profession and home. If not then maybe the cause will be revealed and dealt with promptly.

Best wishes

B

19

Hi Makeely;  I know this is rather a "late" reply, due to personal issues here in my own life;  but am thinking re what you can do, and after having read the latest from a Website here in Aussieland, the WA Fibro site, they are asking if any of us would like some Phamplets to hand out to Educate our families/friends etc on our condition, and am wondering do you have/registered with a similar site in your country, that helps us receive ALL the lates knowledge/news of this?   They maybe able to not only help you with the latest, but also have similar phamplets for you to give to your family and school????.......as to the teachers, I AM very upset by the lack of Understanding that teachers/schools give to their students in today's society, as you all have so much more to contend with than I had, and that of my children (my youngest is only turning 25, but have noted the difference between he and my eldest grandchild, in what is presented to them....my grandchildren....than he even had to deal with......), and the teachers are not made to Step-up to these challenges that present themselves to you and your age groups.......(I could give you one very good example of what one grand-daughter had to experience this term, but will not.....but letting you know that the response that came from a teacher, who I had asked to Keep an eye on her, said to her.....which was Very Inappropriate, and if I thought it would help, I would confront this teacher, as I feel she is not an adequate teacher to be trying to teach/care for teenagers of today).............why don't you Register with a Fibro Group locally/in your country, and research for yourself, and be "armed with the needed knowledge" to present to all concerned.    We on this Forum will support you, as we all have gained so much from here, but still feel that the knowledge gained from the Research that is being done, first-hand, is a useful tool.......we can even pass on what we learn to others on here, that have not read what we read.....it ALL helps each of us...........chin up and will be following how you get on............Bron

20

Hi makeely,

Hope you can get to see the doctor and explain how you feel re the anti depressants. Over here they usually say stick at them for a couple of months but, if you don't feel they are good for you, tell he doc.

In regards your appointment, write things down so you have a record of symptoms so If you have "mind fog" on the day, you have that to rely on. I find i then forget the list! So, why not write it on your phone as email or sms.

Best wishes

B