Chronic Fatigue Syndrome

I am a girl in year 10 and was diagnosed with CFS in December. I had been on a swim team and had gained county times in 3 events when I started having a gradual increase in tiredness towards the end of year 9 and in October started to have stomach pain and digestive problems and took a week of school and then it was the half term holidays. During the holidays rest helped but when we went back to school the tiredness increased and I was struggling to keep food down- throwing up after everything except water and also having diorreah as well. We went to see the GP and she didn't think it was too worrying. But it persisted and I ended up going from 52 g to 45 kg in just 10 days. My parents tried to keep me in school but it didn't work. They took me to A and E after the 11th day and then to a special stomach doctor who focused on the stomach rather than the tiredness and wanted to shove a camera down my throat. Then we went to see Pediatrition on the NHS who diagnosed CFS and has given me anti nausea pill and stuff to settle my stomach, but sometimes they don't help with nausea and the diorreah and the tiredness keeps getting worse. I've missed a lot of school and the SENCO have been very helpful (I've dropped RE and can go to the 'Loft' (a quiet computer room) when ever I need to, but I'm struggling with my stomach and mental abilities. And most of my teachers don't realise that I'm ill (event though they had a meeting with my head of year about it) and think that I'm slacking off and being stupid...

How do I do my work when I get the waves of tiredness? And any tips in general for coping with it???

5 Replies

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  • Hi, My daughter had to get through school and uni with ME/CFS. I am going to be very bossy in what I write, I also have ME/CFS and I am not feeling good today so I can't find the right words to say things "pretty". The first thing to know is that you need to rest BEFORE you are tired. They call this "pacing" and if you have ME/CFS it will make the most difference of pretty much anything you can do. So you need a plan to find your "baseline", that is what can you do without getting tired/ill by the end of the week. What lessons are you going to attend. Ideally you would do one lesson, rest the next and keep resting and attending throughout the day. If you get to the end of the week feeling OK, do not increase your lessons, give your body a chance to get well, then after a couple of weeks add in just one extra lesson and see what happens. If you feel rubbish you need to cut down more. Also I would say rest in the "loft" is not really good enough, you need to lay down, and just listen to music or an audiobook, something that lets both body and brain switch off. My daughter used the bed in the sick room. I am going to stop there as I think those are the most important bits to start with. Education is very flexible, you can easily catch up later so don't worry about missing lessons. You are entitled to extra time and rest breaks during exams I can't find the link for this at the moment I have posted it here before. PS My daughter did 3 lessons a day from age 11 onwards and got a 2.1 at Cardiff Uni so it can be done :)

  • Hi, I am a swimmer too and I completely understand where you are coming from. I get really tired and I get bad joint pain a lot. Sorry I don't know what Year 10 is as I live in Scotland so we do school years differently. I'm nearly 14 and I am in Second Year but anyway I do struggle to concentrate sometimes at school and I just try to breathe deeply, take a quick break to have a drink and maybe (this sounds wierd) move my fingers and toes and move my head round in a few rotations just to release any tension. I hope this helps :) Also I was wondering if you had any tips on how to explain CFS to my friends so they understand.

    Thanks

    Katy

  • I just told my friends that I get really tired and have digestive problems... not sure if that helps

  • You could say that you have a really mysterious illness that not many people understand? That might make them keen to be your friend? Maybe young people need to have a mystery to solve. You could ask them to help you to plan how best you can cope with the symptoms and tell them that you need them to keep records for you of how you are doing and write a report for your teachers. Choose on reliable friend and encourage the others to help her. It appears that Florence Nightingale had ME and did most of her work from bed after all her nursing care in the War. She started statistics in the Health Service that had never happened before so no hospital knew how many people they saved or killed until then. Then they were abke to compare the performance of hospitals.

    Just a thought to make other people work with you and assist you, rather than wonder what you're doing. Maybe someone could take ME/CFS/Fibromyalgia up as a project? A group of students for Cardiff Uni are doing a film and project on ME for their course and helping us with an Awareness Concert on MAY for ME Awareness Week.

    All the best. let me know how it's going. But DO NOT PUSH YOURSELF just to please other people or to make out that you are really ok, just to please people. Go to bed at an early and regular time and rest before you get exhausted. Arrange to go into school late, if you find it too hard to get to lessons.

    I can write the school a letter for you, if you want or need this to happen, as sometimes words from 'outside' are more effective than your speaking up for yourself. Remeber that it is a very real illness and it is not imaginary and cannot be cured by exercise that is increased regularly and you must not 'push through the pain'.

    Miriam

  • Hi SSK01

    This may be off topic a little, but it occurred to me that your symptoms may have been triggered by a gut problem. CFS/ME can be caused by many different things, but digestive problems seem to be a recurring theme. A few years ago I was fortunate enough to go on a pacing course for adult patients with CFS/ME and all 12 of us reported having had digestive / gut issues.

    Anyway, the point of this reply is, if you can find a competent nutritional therapist or functional medicine practitioner, they take a completely different approach to assessing your gut health than the NHS do. A very useful test to undertake that they can order and interpret for you is called a comprehensive digestive stool analysis (CDSA). It sounds very yucky to do (I've done it - it is!) but it gives you a ton of information as to why you may have digestive issues, and almost certainly in the functional medicine model, a disrupted gut will be contributing to your CFS/ME symptoms. Several specialist labs do the analysis e.g. Genova Diagnostics, available at

    gdx.net/uk/product/comprehe...

    It tests if you have any gut parasites or fungal or bacterial infections (which might explain the sudden onset of your symptoms) whether your digestive enzymes are working properly (if not you can't absorb your vitamins and minerals, so will have CFS symptoms due to their lack) whether you have underlying gut inflammation, do you have a good balance of 'healthy' gut bacteria necessary to balance and support your immune system.

    You can find lists of local nutritional therapists at the British Association of Applied Nutrition and Nutritional Therapy online at : bant.org.uk/bant/jsp/practi...

    Not all will be able to carry out the testing, so you would need to enquire.

    Functional medicine practitioners can be either medical doctors or nutritional therapists with additional training in functional medicine. You can find a list of practitioners (not that many in UK, and mostly in the south of England) at:

    functionalmedicine.org/prac...

    Good luck, I sincerely hope you start to make progress soon. Never give up hope, you need to do your research, there are people who understand this illness, but I haven't found any in the NHS - yet.

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