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hello everyone, just wanted to say this is gonna be my last post (maybe one more if I recover). Ive been struggling for a long time and today I realized Ive been dealing with cfs for some time now and not mono. The reason behind this is that my symptoms tends to be influenced by only one thing, which is stimulation of my autonomic system. Also it seems that my autonomic system is not working properly (any activity creates disproportional stress response even without me being actually stressed/nervous, and rest and relax response doesnt occur automatically like it should.

. For example, yesterday I had a reaction to my immuno boosting meds, which basically make me tired, achy and a bit of fever as well, but I feel completely normal, just ill. I was like this the whole day not being able to move because of exhaustion (but felt like Im resting) . As soon as my friend came over and I got excited and going, the fatigue disappearred after crossing a treshold and I havent felt it even when I tried to to sleep that night. Consequently, I slept very badly, still stuck in the excited mode and even though I am usually not morning person, who likes to sleep in and lay in bed, I couldnt and had to get up because I was still wired from last night. There is a debate that this kind if prolonged activation of stress neural network is causing cfs. I will crash after this today or tommorow after the excitement high disappears. I can influence it a bit by active relaxation, but its happening automatically in my body, unrelated to how nervous I actually am.

I havent been evaluated for it yet cause I was just too tired to go to another doctor, but Im gonna try to go next week.

Take care everyone and I would like to thank you for all the support throughtout the years.

Very special thanks to craig and his caring heart, I have you in my prayers dont worry.

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12 Replies

  • Posted

    Hey Lob,

    I'm very sorry I haven't been in touch as have been going through a hellish time myself with my health lately. I totally empathise with those feelings of hopelessness and depression and anxiety over a long period. I am weary of it too my friend and I know that you are also.

    I haven't been on the forums lately as just been feeling terrible myself, but I want to encourage you that things won't always be the way they are now. I know it's hard to see as I am feeling it myself too. Thanks so much for keeping me in your prayers Lob, I will keep you in mine too and praying that God will come and help you and all of us on here going through a terrible time.

    Please keep in touch even by private message, just to let me know how you are doing. Praying for help for all of us at this time. I know you're weary Lob, I know there are no words. It's the worst feeling I truly empathise. Praying God will see us through.

    Craig

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    • Posted

      hey craig, I am sorry to hear you are struggling. I am too, but have made a lot of progress lately. I am active every day with stable activity output. Usually I go to school for some lectures and lunch , some days a longer labs as well. I do walk there and back on most days instead of taking bus like I did before, and I walk about 2 km every day now. I still need to rest a few hours after cominh back home, but it is sustainable. I am recording some stuff for my album and sometimes hangout with friends. I am far from recovered, but the fact that I can actually have some program every day is such an improvement. Ill let you know how Im doing after some time again. Hopefully its gonna be good news as well.

      you are a good man, Craig, with a big heart

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    • Posted

      Hey Lob,

      I'm so pleased to hear that there has been some progress for you, this is really great news. I still believe there is more breakthrough and recovery to come. It's getting to a stage that is manageable and you feel you can still function to a point and live some kind of life which is so important. I am struggling too doctors are saying fibromyalgia and I'm having all the same mental struggles as you with the CFS diagnosis too - I definitely think there's merit in what you say about sometimes just having to disregard what the doctor's say if they're not being helpful or giving much light. That's not to say doctors can't help, of course they can, but some of them can be such hard work and make you feel worse and in those situations we just need to turn to God. In all situations we need to turn to God.

      You're showing great courage Lob, there are better days ahead! Please keep me in your prayers as I'm struggling right now in the house most of the time finding it very hard. Message any time.

      Craig

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  • Posted

    Hey Lob- thank you for your honesty and openness. I’ll hit three years this year and I too have been diagnosed with Cfs. My doctors are trying to work out what is causing it and try to hit it from that angle but I feel there needs to be a major scientific breakthrough for them to know exactly what does this to us to be able to find treatment. I have joined a post viral fatigue forum and Cfs forum and they’ve been helpful. I have exactly the same thing as you. and yes excitement or high stress can relapse me. But my biggest trigger is physical exertion. If I keep myself extremely low-key and not doing a lot of stuff I can hit a baseline that is manageable. But a few weeks ago I got excited while streaming and dance around in my chair for a couple minutes and that was enough to knock me into a probably month-long relapse. It’s so frustrating. But I have a lot hope they’re going to make some breakthroughs and have some help for people like us! take care man – you are young and I believe you will at one point make a full recovery!

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    • Posted

      hey lisa sorry to hear that. Im gonna to for diagnosis just so I have it on paper, I am pretty good at managing it now and I dont think doctors can help me with this anymore. I have improved a lot and I think I have much milder case than you, maybe even different "type" than you. On a good day, I can easily dance for even half an hour and if Im gonna rest after its okay. Even when I dont and relapse, I can still function I just feel bad with symptoms from before. I said I have cfs , because I dont think its the direct response to the virus yet, maybe a residual havoc it did on my body, or maybe something completely else. Thats what I meant by cfs-a long lasting dysfunction after the infection is gone. Anyway, I think I am currently recovering faster than ever before, and eventually with more or less recover. If I do you gonna hear from me on here. Take care

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    • Posted

      This is so incredibly great to hear! I remember how much you were struggling even just a year ago. Sounds like time is a big part of it. And learning how to manage your body. I’m at 2.5 years right now and hoping at some point it’ll just start to fade away. I will look forward to the day you come back to the forum and say that you are completely healed!

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    • Posted

      It's great to see a post from you Lisa, I totally empathise with your frustrations, going through a similarly awful time myself just now things have just really got so much worse this last 6 months for me and finding it hard to cope with pain and not being able to do the things I want to.

      I know words can't describe the pain of what you've been through Lisa, I understand and it's overwhelming at times and there are times I've just been feeling hopeless and struggling to see a future.

      I hope and pray for better times ahead, I still believe you are going to get well again Lisa, praying to Jesus for that.

      Craig

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    • Posted

      hey Craig. I’m so so sorry your own situation hasn't improved. I really hope that you’re able to find a good care team that can get your pain under control. Living in chronic pain and sickness is just the worst. It's so isolating and hard for people to understand unless they go through it themselves. Sending all my prayers and good juju to you today. I'm still managing to stream on twitch so if you ever want to check it out and hang out, let me know and I can pm you my channel name. Hang in there friend.

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    • Posted

      Thanks so much for your kindness Lisa, yes of course feel free to send on details of your channel it will always be nice to check in. Also sending prayers and good wishes to you, still hoping and praying that there can be healing and better days ahead. Just need to keep trusting God, He knows what He's doing even when we don't understand or can't see the light. It's not easy I know.

      Hang in there too and keep taking it one day at a time, that's all we can all do!

      Craig

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    • Posted

      I've been suffering for three years as well, and the symptoms that are worrying me the most are neurological ones. For example, I've noticed that I've developed speech problems, like people don't understand what I'm saying half of the time, I'm stuttering, I have trouble pronouncing 'r', etc... I'm mostly functioning normally right now, but my lymph nodes still hurt like hell, and I have cold all the time. I don't know if it will ever get better at this point.

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  • Posted

    thats so interesting and i must look into CFS . ive been more stable however went to get a juice before heading to the market.

    the owner of the juice store was there.... he was very hyper talking talking talking . .... i couldnt leave !

    anyway its relapsed me somewhat ... ok but really tired and like you that night couldnt sleep was not tired at all . its weird as i knew just that little thing would set me back . i could feel it happening .

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    • Posted

      It is really nice to see a message from you Lori, I'm sorry I've not been in touch as been struggling myself a lot lately. Have been having terrible nerve pain in my hands and feet and whole body, as well as problems with hips, it's been overwhelming and have just hit a wall with depression and pain and it's been too much lately. Doctors are saying fibromyalgia which I'm finding difficult to know really how to take, as Lob says these things like CFS and fibromyalgia the doctors often just label you with if they can't figure out anything else wrong. I just hope and pray with God's help all of us on here who have suffered deeply can make a full recovery, Jesus is our only hope and grateful He is there for us.

      Hope you are okay Lori, thinking about you.

      Craig

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