The power and pitfalls of omics part 2: epigenomics, transcriptomics and ME/CFS
Simon McGrath concludes his blog about the remarkable Prof George Davey Smith's smart ideas for understanding diseases, which may soon be applied to ME/CFS.
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diagnosed with cfs, what now?

Discussion in 'General Treatment' started by sleepingbeautyxxx, Jan 31, 2017.

  1. sleepingbeautyxxx

    sleepingbeautyxxx

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    Hey, today I got diagnosed with cfs (only a mild form, luckily).
    Lately I've been worse than ever and I got a few more symptoms (especially pretty frequent, mild joint and muscle pain). I'm still able to go to school, but it doesn't make things easier. I try to rest as much as possible, but often even after school I have to study a lot or have to finish homework.

    I want to get better and I start taking d-Ribose now. I'm also trying to find my baseline and get better at pacing, since I don't want to get worse.

    Besides d-Ribose, I'd like to know what helped you, so I can try a few things and hopefully get better! I would also appreciate tips on how to deal with school, having cfs.
     
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  2. trishrhymes

    trishrhymes Senior Member

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    Hello @sleepingbeautyxxx I'm glad to see you are talking about finding your baseline and resting, that's so important. Sounds like you are getting good advice.

    Are you getting any help with baseline and pacing? If not you might be interested in this website:
    http://www.cfidsselfhelp.org/library/topic/Energy Envelope and Pacing

    Some people find wearing an activity monitor with heart rate monitor and keeping a symptom diary help with this. It could also be useful with your school in explaining and showing them objective evidence of the level of activity that you need to stay within.

    I would say it's important to inform your school about your diagnosis and your needs. They should be able to work with you to make adjustments to your school life to help you. And tell your friends when you are ready to so they can help you pace yourself.

    As for homework, can you do things like reading lying down, and maybe get someone to record things you need to go over a lot to help you remember them, so you can listen while lying down.

    You may need to cut back on some of the less important subjects at school to give yourself a chance to have rest breaks. I hope your school will be helpful with this.

    Best wishes, and welcome to Phoenix.
     
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  3. sleepingbeautyxxx

    sleepingbeautyxxx

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    Thank you @trishrhymes for that nice response :)

    I thought about telling my teachers so they could understand that I'm sometimes very nervous about presentations and things like that due to problems with brain fog etc., and probably have a hard time concentrating on some days.
    I think/hope most of them will be understanding, but this illness can be so hard to explain..

    best wishes to you too!
     
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  4. trishrhymes

    trishrhymes Senior Member

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    Hello again, @sleepingbeautyxxx

    Have you come across the TYMES trust which is a British charity that helps young people with ME.

    They have some excellent leaflets and other materials that cover things like telling your friends and teachers about ME.

    http://www.tymestrust.org/

    I see you are in Germany. I don't know whether there is an equivalent German organisation.
     
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  5. sleepingbeautyxxx

    sleepingbeautyxxx

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    @trishrhymes no I haven't, but thank you.

    I might have to do some research on that, but Germany is (sadly) far behind in helping people with cfs...
     
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  6. TiredSam

    TiredSam The wise nematode hibernates

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    @trishrhymes lately I have read a few OPs, thought about how I would reply, then scrolled down a couple of posts to find that you have got there before me and written exactly what I was going to write. It's starting to become a thing and it's freaking me out :eek:.

    Exactly this when you are working at home, if you can do it lying down then do it lying down. In the classroom, standing up and sitting down too often is exhausting, so if you're sitting, stay sitting unless you really have to get up, and remember to lean back in your chair rather than sitting up straight, which takes more energy. If you have to stand up, lean against something, and if you have to keep getting up and down in a short space of time it's better to stay standing up and lean against something rather than sitting down briefly and then standing up again. (I learnt this stuff in the classroom - I'm a teacher). If you wear a heart-rate monitor (fitbit etc) it can help to remind you about this when you forget.

    I take a tupperware box of sliced apple to my lessons and have a piece to give me a bit of a boost if I start feeling weak, and I always have a bottle of water on the desk for the same reason.

    If you can get someone else to carry your bag around for you that would help. If tables and chairs need moving around in the classroom let other people do it. Take it easy walking up stairs, do it slowly or take a lift if you can.

    About the brain fog - you are suffering from a neurological illness which can sometimes make it difficult for you to concentrate, find words or remember. Hopefully that will make it easier for your teachers to understand.

    Be careful about trying out supplements, they can cause side-effects and further problems in some. As a mild case myself, I've relied on strict pacing alone and am managing well.

    This is the German ME society:

    http://www.fatigatio.de/

    Here's a film about ME in German:



    The mother of the 2 girls in the film, Katharina Voss, has blogged here:

    http://meversuscfs.blogspot.de/

    and written a book here:

    https://www.amazon.de/ME-Myalgische-Enzephalomyelitis-Hintergründe-Forschung/dp/3959021003

    There are other sufferers from Germany on PR, maybe@Joh might have something to add.

    EDIT: here's the website of the Charite with some documents you can print out:

    https://immunologie.charite.de/pati...chronisches_fatigueerschoepfungs_syndrom_cfs/
     
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  7. purrsian

    purrsian Senior Member

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    Hi @sleepingbeautyxxx , glad you have found these wonderful forums so early in your illness! So much support and so many knowledgeable people here. I would've also suggested everything Trish and Sam said. I'm currently studying part time (tertiary level) so I thought I'd give you some study specific tips.

    I have a small luggage bag on wheels that I use when I go to college as my text books are heavy and I have to walk from the train station. At first, I used a good quality backpack, but the wheeling luggage is just SO much better. When I was in high school, we rented text books from the school, so my mum paid double and got a second set for me. One for home, one for my locker at school. It still meant I had to carry around a little from class to class, but my bag wasn't insanely heavy to and from school.

    I also have everything set up around me in bed so that on a poor day, I can still do things. I have one of those tablets on wheels that you pull over the bed (like hospitals often have) that I go cheap from Aldi. I use it for my laptop or my books. I have a pile of books on the opposite side of my bed, so I can study whatever I want, whenever I want, without getting up. I find that being able to lie down or lie on my side and study is much better than up at a table. I can last longer and think clearer.

    I study in short periods, depending on how I feel, and prioritise my subjects. Do your hardest subjects when you feel your best, then the easier subjects can still be done when you feel not quite as well. Plan ahead, so that there's no leaving assessment to the last minute - that is a huge mistake in CFS. Doing study and assignments gradually is so important. While I do much of my study on my laptops (because writing too much can hurt), I still do one subject of written notes because otherwise I think it will be too hard when I get to an hour long exam and have to write that whole time!

    Talk to your friends, family and teachers. It took me 8 years before I worked out how important communication is. By that time, I'd lost most of my friends - partly because I couldn't physically or emotionally maintain my relationships anyway, but also partly because they stopped inviting me to things because they assumed I'd just say no. Don't be afraid to say no to things and to tell friends about your needs, such as if you need them to speak quieter. Your health is number one priority, but if you communicate well you can encourage friends to work with your health.

    Always have a little food and a bottle of water with you. Drinking plenty of water is so important, as it is beneficial to so many parts of our bodies. I always have a bottle with me. Sometimes, I feel terrible if I haven't had food in a while and just a little snack is all I need to stave off a bad crash.

    I have an app on my phone called chronic illness assistant. I've found it's really helped me to understand what triggers symptoms, what times of day are my best/worst and what symptoms are closely interconnected. (https://chronic-illness.com) It might also prove to be useful in explaining your health to everyone. I now have an easier time explaining things to my doctor, as I am used to rating individual symptoms out of 10. I don't use all aspects of the app, as I think that might be overwhelming to keep up with, but I track symptoms, activity, meds and water. Great for determining if meds are working or really seeing the effect of post exertional malaise, which can be hard to get your head around in the beginning.

    Finally, always remember that you have a very physical condition. It's easy to doubt yourself because everyone's idea of CFS tends to be so flimsy and that it's not really that bad. But not overdoing it at the start of your illness is really important - many of us did and we sincerely regret it. Science is proving that we have biological differences in the way our bodies are working. Our cells are literally not making the energy they require to function effectively. The process of coming to terms with chronic illness, understanding it and accepting it's impact on your life is hard and we all struggle to work through the emotions at times. You're life changes a lot with CFS, but it's still a wonderful life, just different to the one you expected to have.

    Sorry for the long post, kept thinking of more tips and didn't realise how long it had got lol
     
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  8. TiredSam

    TiredSam The wise nematode hibernates

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    That was a brilliant post, I'd give it two likes if I could :thumbsup:
     
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  9. sleepingbeautyxxx

    sleepingbeautyxxx

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    Thank you @TiredSam for the links!

    And I agree, this was an amazing post @purrsian! Very helpful. :)
     
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  10. trishrhymes

    trishrhymes Senior Member

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    Great minds... :D
     
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  11. Joh

    Joh Inactivist

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    Hi @sleepingbeautyxxx,

    So sorry, that you're sick, but great that you got the right diagnosis and found PR!

    I'm from Germany, too. Your English is much better than mine. Please feel free to PM me with any question, would be happy to help, if I can.

    My absolute favorite organization is the new Deutsche Gesellschaft für ME/CFS (https://www.mecfs.de/) and there's also the Lost Voices Stiftung (https://www.lost-voices-stiftung.org/). With the Fatigatio, that Tired Sam mentioned, that would be the three German charities. Oh, and last year in September, Hamburg participated for the first time in the millions missing event (http://millionsmissing.org/), I hope it'll happen again in May.

    I liked this radio report about ME from December, accurate media reports in German are very rare: http://www.ardmediathek.de/radio/Notizbuch-Nah-dran-Bayern-2/Soviel-mehr-als-nur-müde-Leben-und-Übe/Bayern-2/Audio-Podcast?bcastId=7261240&documentId=39461958

    I mainly write in a German forum, but it's tiny in comparison to PR, with maybe 10 messages on a very good day (and unfortunately it's a little too psych-friendly for my taste, you know, laughter is the best medicine, you have to think positive to get better, Gupta (a program to eliminate negative thoughts etc.)). So PR is definitely the better source for information and support, but it's easier for me to write in German: cfs-treffpunkt.de.
    There's also a Swiss forum with mostly Germans: symptome.ch (but only messages every few days/weeks in the ME section).

    Please don't believe people who try to tell you it's about thinking positive or will power or pushing yourself or exercising or relaxing properly. It's not. But suddenly everybody's a doctor.

    If it's not too private, would you mind to share, which grade you're currently in at school? I guess it's harder to miss classes in Germany than in other countries because of our "Schulpflicht" (obligation to go to school, no home schooling possibilities like in other countries). But it should be easier in the "Oberstufe". Are you still able to do the full program?

    Take care! :)
     
    Last edited: Feb 1, 2017
  12. TiredSam

    TiredSam The wise nematode hibernates

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    I was about to say the same thing :jaw-drop:
     
  13. TiredSam

    TiredSam The wise nematode hibernates

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    @sleepingbeautyxxx did I just read on another thread that you still do P.E.? That sounds really dangerous to me, I'd suggest if you're still doing it then your top priority is to get excused from that class.
     
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  14. sleepingbeautyxxx

    sleepingbeautyxxx

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    @TiredSam I try to find a way getting around P.E. but it's not that easy...
    If I don't do it, I have to take another class which would be geography. For that I really have to study and it would add even more stress. I hope I can get around it by only doing the things we get marks on and only participating when I feel like I can do it that day.
    German school system...
     
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  15. purrsian

    purrsian Senior Member

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    Perhaps have a good chat with your PE teacher about your condition, limitations and the fact that you'll try your best but need avoid overdoing it. It is good to try to maintain your physical activity as much as you can, but avoid making yourself worse with PEM. People with CFS tend to react poorly to exercise - while others feel good afterwards, we just feel drained and then even worse the next day or two. It's important that you aren't pressured into doing more than you should by your teacher. They think they are doing the 'right' thing, but it's just not. Also drink plenty of water before, during and after your PE class, as it helps a lot with blood circulation.

    Try highlighting to your teacher that you are already pressuring yourself to do your best and that you will try your hardest, even though it may not look like it. We all look like healthy but lazy people, because people can't see that we feel like we have a hangover and the flu all the time!
     
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  16. purrsian

    purrsian Senior Member

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    lol thanks :D A decade of learning to cope sure does provide lots of fodder for tips!
     
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  17. arewenearlythereyet

    arewenearlythereyet Biscuit Antagonist

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    I can't really add much more to what's already been said. My biggest energy save is definitely to avoid standing whenever I can and be acutely aware of how long you are standing for any one moment (I now have a little count down clock in my head) I limit standing for 10 minutes at a time. I also do the wall lean thing @TiredSam mentioned if I get caught in a corridor or something...I've perfected making this look quite casual. I've also noticed that people actually like it when you sit down next to them rather than hover (they think you are more approachable). I also have an old luggage trolley for carting stuff around. I find it easier to have one big bag for laptop and folders etc rather than 2 and I always pack light for what I'm carrying and use the trolley for heavy stuff. I never run anywhere or rush upstairs. Slow and steady. I avoid large groups of people and negative people that wear you down. I treat energy saving as a bit of a challenge that appeals to my sense of efficiency. I also alternate cognitive and physical tasks throughout the day which helps with some of the brain fog. If I have to do anything new or uncomfortable then I make sure I get lots of sleep the night before and aim to do less overall that day in anticipation of being drained quicker.

    I hope you get to know what works for you soon. It sounds like you are starting the right way.
     
  18. purrsian

    purrsian Senior Member

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    Good tips here! I also do the alternating cognitive and physical tasks. It's taken me so long to accept 'slow and steady' because when I'm out and about, I just wanna get stuff over and done with and get back home. But now, I've accepted my need to walk slow, have a sit down when needed, not rushing thoughts and activities. If you're having problems in particular with standing, it can pay to have a read of lifestyle tips for postural orthostatic tachycardia syndrome (POTS) which often happens with CFS. Even if you don't have POTS, some of the tips like counter-manouvres and things to increase blood circulation can help.
     
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