CFS/ME IS RUINING MY LIFE

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I'm 20 years old. I have had CFS/ME for 2 years which is now becoming a progressive nightmare. Is it possible for your symptoms to worsen and worsen and worsen? I feel trapped in my own body. Unable to get out. I feel like I can't do anything I used to enjoy, I can't even hold down a full time job anymore. I feel sick. I feel like a failiure. No matter how much I try to fight it...It swipes my feet from under me. The most annoying thing? I look completely normal, can go and do things like eat dinner on a good day or walk the dog. But currently I've been in bed for coming up to 18 hours, feeling numb, drained and everything hurts. Please can someone tell me if this sort of drastic part is normal? Do I go to the hospital? Or is this just part of the new life I have unfortunately been given? I'm devesatated. I also suffer  with OCD where I'm a complete perfectionist but I have no energy to do anything, the most frustrating part! I just want my body to work, I feel like I'm begging to live a normal life. Anyone else feel like this??

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  • Posted

    I'm so sorry you're having to deal with this horrible illness. I know it's hard to imagine things improving when you've been in bed for 18 hours. But I want to assure you: things can get better. Not only that, but you're in a huge window (under 5 years or so) when the illness can completely go away, even without your doing anything. I've met people where this has happened. So please don't lose hope. To maximize chances for a full recovery, get plenty of rest, pace yourself, and do your best to avoid a crash. There are researchers who think that the fewer times you crash, the greater the chances are for a good recovery. Unfortunately, the drastic part you're now feeling is not uncommon. I had periods of time where I was so ill I couldn't get out of bed. And yet, today, I'm contemplating going out to see a movie! I, too, have OCD, which can be caused or exacerbated by ME/CFS. Did you know there is a special kind of therapy for OCD, without drugs, that can almost totally obliterate the symptoms? I had this therapy a few years ago, here in Los Angeles. In about 4 months, my OCD symptoms were gone. By the way, your chances of recovery are even greater because you're so young.

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    • Posted

      Thank you Jackie! What type of therapy was this? CBT isn't really working for me! I gotta stop doing too much. This illness has been real hard for my to accept! Less crash, more getting better. Thank you for the advice x

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    • Posted

      The therapy for OCD is called Exposure and Response Prevention, and is a very specific type of therapy. It does not involve restructuring your thoughts, like CBT. I worked with Dr. Gerald Tarlow, in Los Angeles. He was wonderful. 
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  • Posted

    Yes, absolutely, I've been there. If your CFS is getting worse, that might mean that you're crashing and that will keep your body from recovering. I was there quite a bit before I was diagnosed. Fortunately I was able to recover numerous times but still didn't know that I had CFS. Now that I'm 61 I've finally been diagnosed but I haven't yet recovered from my latest set back because I didn't know what I was dealing with until recently. You are in a different situation because you have some knowledge of what you're dealing with. My advice would be, do a lot of research and see what feels right for you but be aware that there are no magic pills and most people have recovered by learning how to maintain a different way of living. You have a really good chance of 85 - 100% recovery because of your age but it take a lot of time and patience. IT IS POSSIBLE. And most people who have recovered have said they are a better version of themselves because they are so much more in tune with their bodies and minds and how they work. You can learn how exactly to pace yourself and how to  honor your body's signals.  Your body isn't betraying you. Your body is just trying to communicate what it needs. Meditation (for me) is crucial. Some kind of bodywork (massage, chiropractic, acupuncture, naprapathic, refexology, etc) can be very helpful too as well as giving up gluten, dairy, sugar and anything "stimulating." Unwinding about 2-3 hours before bedtime will help with sleeping, Being very affirming that you will recover can help your brain and general outlook. Stressing about having CFS makes the symptoms worse because stress hormones are pumping through your body even more which creates more symptoms. Love yourself and be gentle with yourself. Your full time job is to honor you.

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  • Posted

    Yes! I completely get where you are at right now. Some of the feelings you feel, I've felt too. I'm 26. Being young with this is tough. You will still be grieving your youth. I feel the same I feel like a all my hopes and dreams have been shattered but through our understanding of this condition we can support each other through this. I've had this for a year and a half and I'm still working out what my limits are. I'm trying to focus on managing this condition best way I can but it's not easy. On my bad days I feel so useless and guilty. I do try stop those thoughts because beating ourselves up over something we can't control is torture. It must be really tough going through this with OCD. Just remember that your illness doesn't define you. You are perfect with this illness or not. Your kind, youthful soul is still in there, you just have limitations now. You are doing your best and that is all you can do. Like others have suggested you may be having a crash. It's awful because when you're so poorly you feel like you'll be stuck like that forever but it does pass. I had a really bad month in march but then things got a little better then I caught as virus and I've been bad again for the last few days. Stay strong. Here to chat anytime you need to vent!

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    • Posted

      I'm always here for you too. Thank you for this. It's such a struggle as I feel I haven't been able to live the same life as everyone else my age, although knowing there's many other people out there who are young and struggle means that we can all pull together!!

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  • Posted

    Hi CFSMEOCDIBS

    I'm sorry to hear you have this illness, particularly being young, it must make it more difficult to deal with. 

    I have recovered from CFS for 5 years now. I had fatigue issues for about 8 years and it took me 2 years to fully recover. However, it's important to know that you CAN recover. 

    You might find some of the information on my blog/website useful 'quit chronic fatigue' I share my journey with CFS and useful tips/info on how I recovered.

    Hang in there, you can get well again.

    All the best

    Moderator comment: I have removed the link(s) directing to site(s) unsuitable for inclusion in the forums. If users want this information please use the Private Message service to request the details.

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  • Posted

    Yeap ...its exactly what it is .......now the new reality is to adjust and go with a flow...

    u have to keep in mind everything U eat ,do and remember how U ve felt later ...and in a future U avoid  eating/doing certain things .....

    yes.... some people go to the hospitals and  get thorough check ups there  for MS ,Lyme, thyroid/hashimoto/  etc and other things.........

    but overall its like  U ve described and most "normal" others will think there is nothing really wrong with U , must be depression or laziness ...../:

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  • Posted

    crazy thing is that many CFS sufferers  have undiagnosed illness like Lyme with co infections for example ,food allergies , heavy metal poisoning and other things which could be fixed somehow yet many struggles decades!!!!!!!!!!!! undiagnosed ......

    immune system enhancing therapies could be very helpful and whole foods ,sugar ,gluten ,caffeine ,alcohol reduction type of a diet like clean paleo or vegan are good

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