Fighting with Chronic fatigue syndrome (CFS)

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japalamu
japalamu Posts: 11
in Introduce Yourself
Hello :) I've been a few months in My fitness pal. At first I did a very healthy diet and exercise, so I lost a few pounds but I gained this weight again because I was ill, my mononucleosis was worst and it became Chronic fatigue syndrome (CFS). I didnt want to get up of my bed . But Im back again and I want to keep a healthy lifestyle to make my body healthier and happier. I would like some support and encouragement from MFP friends.
Fell free to add me. I would be very happy

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  • sarablueskies
    sarablueskies Posts: 56 Member
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    sorry you haven't gotten any replies on this, i never did either...there's either not a lot of us or people don't believe it. very very frustrating. i had a severe case of mono 6 years ago and i have never recovered. i get migraines after exertion and extreme fatigue where i have to sleep hard for at least 3 or 4 days to feel 'normal' again. lots of other good things like swollen spleen and sore throat. so no fun! i keep trying to focus on my diet and low stress workouts like walking and yoga. yoga has been the best actually, i can work up a sweat, but the pace is slow enough that i don't end up with a headache. still get pretty tired for a couple days after though. i'll be glad to add you...if you're even still around MFP!
  • japalamu
    japalamu Posts: 11
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    It's so nice to hear from you. This illness is making my life very different and It's very difficult to keep a good mood in this situation. As you told me, lots of people didnt believe in this illness and that's the most frustrating situation of this condition. I usually have sore throat too and that eternal flu that makes feel my bones like heavy stones. Im in a fight to recover my life and the way I used to see myself. Im very happy to know someone that understand this kind of disease and someone who is fighting bravely. :)

    Blessings
    Jana
  • Captain_Tightpants
    Captain_Tightpants Posts: 2,215 Member
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    I sympathise, my wife also has cfs and fibromylagia and there have been particularly low times where we've discussed how they are, in some odd ways, worse than cancer. Cancer is either curable or incurable, it doesn't just linger for a long lifetime; and other people can usually tell when you've got cancer, whereas with these invisible conditions most of the time people just think you're antisocial or lazy because you can't come out. My wife can't even hold a part time job down now because the fibro just saps her too much, one day she'll be fully capable, the next, totally bedridden.

    Gym (in particular strength training/lifting) definitely seem to offer great benefits to cfs and fibro sufferers. I've spoken to lots of people who have found some relief in lifting... you might want to give it a try. Feel free to add me if you like.
  • mixedfeelings
    mixedfeelings Posts: 904 Member
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    Thought I would drop a line to say hello and good luck. I was diagnosed with cfs many years ago after years of sticking to just 600 calories a day. Of course I feel like it was completely my fault. That on top of developing a tumour inside my right kidney which was fortunately benign if not rather large which has now been embolised. I'm finally finding a way through and truly believe I will one day be fully better. I spent months bedridden and gained a lot of weight then even though I was eating very little, around 1000 calories, it was just nearly double what I had been eating for years before. I try to stay positive although my moods can be up and down. I really feel like this can be a good year, I'm finally eating normally, able to exercise and shift the weight. I just hope that you find the strength too and wish you the best of luck.
  • mightyminerva
    mightyminerva Posts: 145 Member
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    I have CFS plus allergies, asthma, migraines, and knee issues. I've found ways to cope with the other health issues, but CFS is another matter. I do tend to feel better when I work out consistently (though the time needed in bed is still more than the normal person), and at the moment I'm doing half-hour Jillian Michaels DVDs or half-hour DDPYoga (power yoga) workouts. Perhaps something short would work for you? I'm also trying to incorporate swimming into my schedule, as I remember it being helpful when I was a child. I hope that you find something that works for you! Remember that they say weight loss is 80% in the kitchen and 20% in the gym. You can control that 80% relatively easily!

    I hope that things improve for you (and for all of us CFS sufferers). Feel free to add me. I'm on here more often than Facebook these days, and I'd love to cheer you along.
  • japalamu
    japalamu Posts: 11
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    thanks for your comment. I used to have a graphic design company where I had many clients. Now with my disease I just have one client and I usually work on freelances just 4 hours at a day.

    I have noted that exercise helps with my condition and I try to make bycicle or walk everyday. I try to take a rest at the afternoon and thats the way to keep my body less tired at every day. My meals are very important too. I have to make a low carb diet and eat fruit and vegetables, that helps too. I will try that you told me about stretching exercises.

    As you say. the sad situation of this condition is the unsupportive comments of some of friends and family they thinks that is just lazyness and that you are and antisocial person .

    Most of the time if someone ask for my health I told them: Im ok , its better than try to explain all of the symptoms and make the people believe in you.

    My husband try to keep the situation under control and he gave me his support. Thats very important too. I would like to be healthy to have the life as a couple that we used to have.

    Thanks for your comment again.
    Greetings to your wife
    Jana
  • japalamu
    japalamu Posts: 11
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    Hello :) I understand about being laid in a bed without the strength to wake up and make your life as always. I understand how that change your body and the way you look in the mirror.

    My self-esteem was very afected and I felt like someone in the body of another person.

    Im glad that you are better now and that you are fighting succesfully against this illness too. As you say this year will be a better year :)

    Blessings

    Jana
  • japalamu
    japalamu Posts: 11
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    Hey Thanks for your advices I will take note about that . As you say, manage other health conditions is easier than carry the CFS. I have suffered from herniated discs and osteoarthritis for years, was a nuisance but it seemed more bearable than CFS.

    The loss of vital energy that I think is a symptom that should not be taken lightly. Most of the time you feel like a battery with no load and thats a bad way to living life.

    As you say, each person finds his way to work with this condition and the low energy. My way of doing this is to keep meals healthy and a reserve my time for resting. Exercises are very important and keep an open mind. and a good mood although the last thing is hard to do sometimes :D

    I am glad to meet you. I wish that you get better soon.

    We keep in touch :D

    Jana
  • Ellevated
    Ellevated Posts: 192 Member
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    Hi Jana,

    I just joined myfitnesspal.com today! I was diagnosed with C.F.S. a couple of years ago after a 2 year deterioration of my health. I put on a lot of weight as a result of my illness too. Anyway, I am much, much better than I was and I believe that recovery is possible.

    We can do this!
  • vtpixie
    vtpixie Posts: 39
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    Hey guys,

    I too am a fellow CSF patient. I got at about 16 yrs old after going to Ireland for a month. We got lucky with getting diagnosed quickly since a family friend had been diagnosed only a year or two before me. I had to go through a ton of testing at a local CFS clinic in NJ and finally was told yes you do have CFS and POTS (Postoral Orthotachycardia Syndrome)...so I'm exhausted all the time, have trouble concentrating and remembering, as well as dizzy spells from the POTS. It sucks, but all my friend know I have it and respect me for still trying to be active as well as working a full time job. I even went back to school and got my Masters while working. It's hard pushing yourself, but eating healthy and exercising really do seem to give me more energy and make me feel 70-90% better although I still will get tired. So just keep perservering and we can conquer out CFS and get healthy together.

    LET'S DO THIS!!!!
  • MikaelaNina
    MikaelaNina Posts: 6
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    hello :) I also am fighting with CFS and have been for 9 years, would love to hear from some people in the same boat. Please feel free to add everyone!!
    Mikaela x
  • deviantcupcake
    deviantcupcake Posts: 136 Member
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    Another sufferer here.

    It's been eight years since my initial glandular fever (mono), which worsened and left me with this wonderful condition. Please excuse my sarcasm.

    I managed to get myself to a point where I was working part-time and exercising most days, seeing friends on weekends. I was and still am very proud of that. I had almost no support from my GP or the specialist I was referred to (and saw a grand total of once). Then work went full-time, exercise went out the window. Social life is becoming non-existent again.
    I lost my job a month ago (not related to my health, for once) and because I'd been holding it together for so long, had a massive relapse as soon as I relaxed. Now I'm trying to build myself back up so that I can get a part-time job again.
    The dream is to work from home - a friend and I are setting up our own proofreading & editing business.

    Anyhow. I'm trying to stay positive, build my strength back and still lose weight. I'm guessing I'm not alone in that.
    Feel free to add me, anyone and everyone. There don't seem to be a lot of us on here, so the more support we can give each other, the better!
  • Kezcos
    Kezcos Posts: 7
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    Hello..yet another sufferer !!!! lol................please feel free to add me too !!:tongue:

    I am 18 months into CFS after Influenza and secondary infections that left me on life support for five days...........I will not be beaten !! Back to managing part time work but alas no exercise- have gained two stone and i was already a big girl but used to be fit !!

    Used to gym three times a week and swim twice a week- now cannot maintain energy levels to exercise and work......getting through work is hard enough !!

    Social life is nearly none existent as need to rest, reserve energy, blah, blah, blah...this illness is flippin boring !! Have great friends and family tho who have not abandoned me :bigsmile:

    So am seeing a nutritionist and this site is fab for monitoring low carb, high protein diet i am following...meant to be high fat but thats where i put on a stone.not doing that again :-)

    So lets encourage one another, move forward in managing this bloody illness and support each other through xxx

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