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At crises point and needs advice

Posted , 9 users are following.

makeely98825
makeely98825

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.

0 likes, 29 replies

29 Replies

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  • tina58520
    tina58520 makeely98825

    Posted

    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

    • makeely98825
      makeely98825 tina58520

      Posted

      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.

       

    • bronwyn97278
      bronwyn97278 makeely98825

      Posted

      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
    • Beverley_01
      Beverley_01 makeely98825

      Posted

      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

    • makeely98825
      makeely98825 bronwyn97278

      Posted

      Hi Bron, I have been looking/researching some sites and what I have been finding has been awesome. There's heaps out there with a lot of information. I love researching things, so I have actually enjoyed reading about cfs/me, and in a way it has oddly been reassuring.

      I'm sorry to hear about the trouble that your grand-children have had/are having. I am hoping that once I know what I am unwell with, the school will be able to give me more support. The next couple of days I will be meeting with one of my teachers, who I know quite well, so I am hoping that she will gain some understanding and give me a starting point. That way I will know where to go from here. I am very very very sure that I can not continue to carry on pretending like there is nothing wrong. Doing that hasn't helped at all. 

      I know when my sister became unwell, the school was very helpful. She had one close teacher that basically coordinated with all of her other teachers to organise things and put things in place. 

      Thanks so much for your words. I now that personally this forum has been so much help. 

      Thanks again, Makeely

    • makeely98825
      makeely98825 Beverley_01

      Posted

      Hi Beverley,

      Hopefully I will get the chance to talk to the specialist re the antidepressants. 

      I have been keeping a list of things, and will make sure I have a few different copies (thanks for that advice!!). When you mention forgetting the list... There are so many times when I remember something or something that I need to do, I then find I forget whilst trying to find somewhere to write it down! Then it's a case that I should keep something on me most times so that if that happens, I can write it down straight away, but then I can even forget that I remebered to do that confused ahaha, still trying to figure out the best system for the everyday things.

      The list has actually helped, as I can read back over previous days and that will remind me of other symptoms that I had throughout the day but had forgot. smile

      Do you know what type of questions the specialist might ask me? 

      I need to make sure that I take my time answering questions as with previous appointments I havn't really thought out my answer before I say it. But then again all the GP appt. have been less then 10 mins, the speacialist will be 1.5 hours 

      Thanks, Makeely.

       

    • Beverley_01
      Beverley_01 makeely98825

      Posted

      Hi makeely,

      I didn't get a message telling me you had replied to my message so apologies for not replying to the last one you sent me but seems you have been to see the specialist and it went ok which is good. There seems to be alot of support available where you are in Australia thankfully.

      In your message you seem relieved and am glad you are now getting the support and the specialist is understanding and has experience of working with young people and has the knowledge of how to work with schools.

      In regards Ritalin, I have only heard it used for the condition ADHD to help concentration and so can't help you with that in relation to cfs. How did your family take the diagnosis? Hope things get easier now with you and mum and your sister.

      I know having cfs Isn't really something any of us want but you seem more positive with your diagnosis, and from your other messages it seemed to be getting you down so am glad the appointment went well for you. Did you get to talk about the anti-depressants with the doctor?

      Best wishes

      B

  • makeely98825
    makeely98825

    Posted

    Hey guys! Just wanted to update you...

    I have been diagnosed with CFS. The Specialist was absolutly fantastic. Somehow he just understood and was able to ask the questions in such away that I was able to explain what I am experiencing. And the best thing is that he has a lot of expeince working with teens, so he knew alot about the school system!

    He's started me on very low dose of Ritalin.... It's suppose to help with concentration. Do any of you have any experience with this drug?

    I also have B12 injections, one every fortnight for 6 weeks. Lucky for me my mum is able to give it to me as she's a nurse. 

    I am also in the process of getting an appt. at an Exercise Physiologist clinic who specialise in CFS and other Chronic condition. My sister went through the program and it helped her immensly so fingers crossed smile

    Currently with school I am still struggling very much, however I haven't had the opportunity to have much discussion with them. I am hoping to meet up with some of my teachers early next week. At the end of the day I can vent all I want about how school is incredibly difficult at this time, but nothing will get any better if I don't put in that little effort to put strategies in place.

    My Mum is still causing alot of stress, but I think we will get there smile Only positive is that I have some very close friends who I can speak openly too and they can understand but also offer some personal advice. Basketball is looking more promising as the season is coming to an end (we play for a spot in the Grand final next week!), and the next season will mean more players in the team.

    Thanks so much for all your support and advice!!! I truely do appriaciate the time and thought you have put in.

     

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