Sorry if this isn't how things are done on the forum but just wanted to introduce myself, say hi and say how helpful this forum is.
My name is Josh, i'm 25 and I became ill in February. I lost 2 stone after a bad break-up and was pushing myself way too far. I was drinking, not eating well and exercising far too much.
I suffered an exercise induced anaphylaxis after a 5 mile run and was diagnosed with cholinergic/chronic hives in early february. Around 3/4 weeks after that I started having to go to bed at 6 o clock in the evening which was very strange for me. Then one day I felt so tired when I woke up that I could barely breathe. For 3 months I was bed ridden, at times I couldn't even roll over in bed to get a glass of water. I was 100% convinced i would die and was admitted to the emergency room many times during this period. I have since had many many tests (MRI scan which did actually show scarring in my brain, lumbar puncture and countless blood tests.) The only result that showed any difference to the norm was that my prolactin was high, if anyone could let me know why this might be i'd be very grateful.
Having been in Canada on a Football (Soccer) scholarship for 2 years prior to this it has obviously been a major shift in the way I live my life and I sympathise with every single person on this forum.
I am very worried about relapses, as there have been times when that deep, heavy, tiredness have crept back in. That is why I joined this forum, so I can hopefully get some tips about not relapsing and trying to live with this horrendous condition.
Comecei a seguir a dieta low carb, high fat, ou dieta cetogênica. É altamente científica e há muitas pesquisas sobre ela. Estou fazendo um módulo da Universidade Aberta sobre esporte, exercício e nutrição, e estou aprendendo sobre isso nesse contexto.
Muitos atletas estão adotando esse modo de alimentação. Foi constatado que, após duas semanas com menos de 50g de carboidratos por dia e alto teor de gordura, o corpo se adapta a usar as reservas de gordura em vez das reservas de carboidratos. Temos muito mais reservas de gordura no corpo do que de carboidratos, então isso faz sentido.
Na dieta, as pessoas realmente perdem gordura e ganham massa muscular, e dizem que é muito benéfica para a saúde, razão pela qual estou tentando.
A parte difícil para mim é que eu como muitas frutas, mas elas são bastante ricas em carboidratos açucarados, então tenho mudado para frutas de baixo teor de carboidratos, comendo um pouco menos delas e mais vegetais de baixo teor de carboidratos. Estou adorando tudo: queijo, carne, peixe, creme de leite condensado, etc!
Olá, Josh. Sinto muito que você tenha essa doença terrível. Você realmente recebeu um diagnóstico de EM/CFS? Esse seria o primeiro passo. Você deve procurar um especialista que tenha conhecimento sobre isso, provavelmente um médico especialista em doenças infecciosas ou um reumatologista. Como você é jovem e adoeceu recentemente, tem boas chances de melhorar. Atualmente, não existe tratamento para a EM/CFS, mas você pode aprender a gerenciá-la. O principal é obter descanso adequado, controlar seu ritmo e não ultrapassar seu limite de energia. Não tente superar a fadiga. A ideia é evitar recaídas permanecendo dentro do seu limite de energia, em vez de ter que se recuperar depois de fazer muito. De acordo com a Dra. Lucinda Bateman, uma das principais especialistas nos EUA, exagerar pode diminuir as chances de recuperação. Eu sei que isso é muito difícil quando você é uma pessoa ativa, mas você colocará sua saúde a longo prazo em risco se fizer muito. A Dra. Bateman sugere até mesmo usar um monitor tipo Fitbit para verificar seu nível de atividade, assim você terá uma boa ideia de quanto pode suportar sem colapsar.
I am actually confused as to whether I have been diagnosed or not. I have seen a CFS/Pain Management specialist and have now been referred to another CFS specalist closer to me. No one has explicitly said I have it but I am being treated for it if that makes sense.
What exactly is a rheumatologist?
I am really trying not to do too much, it's so hard getting that balance right especially as I used to play football 7 times a week, study and hold down 2 jobs.
I was recently on fluoxetine for 3/4 months but it's hard to tell if that helped.
I keep a pedometer app on my phone and try to do 6,000-10,000 steps a day but have definitely over-done it recently .
Welcome and nice to meet you! I'm 28 and from the UK, I noticed you said you were in Canada at one point, is that where you are now? Where I am there are no specialist centres but I've been referred to CBT. I found CBT really useful for helping me learn to listen to my body and learn to pace myself according to my symptoms. This has by no means been a cure or a quick fix I found that it has really helped me find my baseline of activity which has really stabilised my symptoms and life is a lot more manageable than it was (It's a slow process though and it took upwards of 4 months before I noticed any improvement so it).
Hi Georgia, actually no, I had a lot of trouble accepting when I needed to rest. I felt really guilty and would literally only rest when my body couldn't go any longer. I found the CBT was really helpful for me in learning to accept that it was okay to rest. I also found it helpful to talk to someone about my experience - I was feeling really stupid and guilty and had trouble accepting that I couldn't do everything anymore. Yes I realise that to some people with CFS I might sound a bit stupid not knowing when to rest but I've only had it for 2 years and for me I had a lot of trouble learning how to live in such a different way that really, really felt wrong to me. I also struggled a lot with the psychological impact of being unwell and CBT was really good at addressing this for me.
Ohh yeah I haven't ever done self-help - I did it with a therapist over a 3 or 4 month period. I think its usefulness really depends what sort of thing you need help with really. For me, I think I enjoyed having the one-to-one sessions to talk about my experience and make sense of the way I was handling it in my day-to-day routine and psychologically and make changes based on that. I was in a really unhealthy boom and bust cycle and the lady I saw helped me rethink my routines and learn to say no to things which I had a really hard time with. If you're already managing your condition well then CBT definitely won't have much to add
Não estava insinuando que você é burra, Toni; só tentando entender como a TCC ajuda nesse sentido.
Eu sei o quão difícil é controlar o ritmo; às vezes minha mente acelera e eu faço muito no computador ou estudo, leio ou algo assim, ou fico acordada até tarde porque não sinto vontade de dormir, mesmo sabendo que deveria.
Não é um problema tão grande com as tarefas domésticas porque, na maioria das vezes, sou fraca demais para fazer coisas assim, então não me forço.
Estou feliz que a TCC tenha ajudado você! Não é para mim, mas somos todos diferentes, não somos? A homeopatia e certos suplementos estão me ajudando no momento, e ervas têm me ajudado há muito tempo.
Hi Georgia, I think I was having a bad day so I do apologise for coming across grumpy. I know that feeling of staying up late when you know you should be sleeping! I have found that a really difficult thing to address. We're definitely all different and I think that's the big problem with the health service where CFS is concerned - it'd be good if healthcare providers would take a more holistic approach to helping people manage their condition.
Não se preocupe, achei que tinha me esbarrado em algo errado.
É difícil me fazer dormir quando me sinto bem tarde da noite e estou gostando de jogar ou algo assim, porque não me sinto bem na maior parte do tempo, então quero aproveitar ao máximo. Mas vou me sentir pior amanhã, então não é uma boa ideia.
Yeah! I know what you mean about feeling better later in the day - I feel my best later in the day - I'm glad I'm not the only one who experiences that - it's a real weird one.
Lembro quando a ME/CFS era chamada por alguns de doença dos vampiros. Eu também me sinto melhor mais tarde no dia, especialmente mais tarde à noite. Às vezes, aproveito isso para sair com meu marido em uma cafeteria 24 horas — às 2 da manhã.