CFS becoming intolerable

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I was diagnosed with CFS about 10 years ago. People seem to think it means im a bit tired! Its getting worse and im aeriously struggling to function. There are no longer good days. Ive had a cold for about three years. I dont eat properly and run my own business which is being affected as i have no energy for it but have no choice but to turn up and open up, its a tearoom and bar. I dont know what to do anymore.

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  • Posted

    Hi Melody! Sorry to hear you're getting worse, this illness is a horrible thing isn't it sad I was diagnosed with CFS in October 2015. I was working full time and was also a full time student with two children. The only thing I found that helped at all was giving it all up. I had no choice really as I could just about lift my arms. I find that not having the worry of knowing I have to be up for work or college helps. I can have rest days whenever I like and on the really bad days when I can't get out of bed I don't have to worry about assignments or that I won't be able to pay the rent. It must be very hard for you having you're own business, the responsibility is enough stress to make the CFS worsen. Have you thought about taking some time off to recoup or at least cutting down your hours??

    Emily x

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  • Posted

    It's no joke having a cold for 3 years! I'm wondering if it might be worth being tested for allergies/intolerances. Well done for keeping your business running. You have my admiration.
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  • Posted

    I was diagnosed about 8 years ago, and it's also getting progressively worse, to the point that I am scared I will not be able to support myself. I work full time but was bedridden from February through March. When I do work, it takes all of my will and physical power to make it through the day. Sometimes I must lie down in the office, I collapse on the train. Brain fog and memory are getting worse. Can't remember simple words most of the time when I need to use them. Not sure why such regress. Regarding your cold, do blood test for high Chlamydia Pneumonia antibodies. There is a link between this infection (which is not a STI) and Chronic Fatigue. I have the levels elevated periodically and take antibiotics for two months. But then I read that there is a regime when people take high doses of antibiotics for 2 or 3 years, and they do improve.
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  • Posted

    Hi melody, you seriously need to do what I did to grab my life back... I struggled greatly for 5 years, until 2 months ago I went to a holistic therapist as I have gave up my fight with doctors.... They just piled copious amounts of meds into me, making me more I'll.... I now take 7 different supplements and have never felt this good in years... I also have osteoarthritis though, which I am hoping a new supplement msm is going to help me improve with this.... All my crazy fybro and me, cfs symptoms have now GONE!!! I urge everyone to find out wether you have allergies and that's what's making u sick....
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    • Posted

      Hi Amanda, we were in a discussion about 7 months ago regarding brain lesions.  I'm not sure if you remember that discussion.  You were talking about the pain you were experiencing and that you had a few brain lesions found on MRI. 

      It sounds like you have made a nice recovery.  Did the doctors rule out MS?  If so, what did the diagnose you with?

      How did you overcome your issues?

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  • Posted

    Wow, I'm impressed at how much you do! I don't think my family realize how extremely tired I am, Just getting out of bed can be. exhausting!
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  • Posted

    Hi Melody, so sorry you're going through this.  My husband was diagnosed with CFS along with Fibro. in 1989 (nearly 30 years ago).  But back then, no one believed it was a real illness, except of course for those of us who were living with a severe case of it like my husband.  Unfortunately he was convinced by others and himself to just continue to push himself and push himself and give it everything he had, until he was involuntarily collapsing down onto the floor because of severe and incapacitating weakness.  He became totally bedridden and remained that way for over a full decade!  He couldn't get from bed to the bathroom without falling down onto the floor.  I had to help him every step of the way because he was unable to even walk to the bathroom.  And even after all those years of being totally bedriden, he still had falls when he would try to get out of bed.  Anyway, I'm telling you this so you won't make the same mistake he did, with pushing and pushing until you are completely bedridden.  It's better to take time off now than it is to continue pushing yourself until you drop and can no longer get out of bed without falling (like he did).  The price he paid is that he is still very weak and sick today (nearly 30 years later).  He's not totally bediridden anymore, but he is housebound most of the time, cannot work at all, and is doing good just to let me take him to his doctor's appointments.  He's been on disability for nearly 30 years, but before it was finally approved, we were forced into bankruptcy, lost our only home etc...  Our two daughters couldn't understand why their daddy was always so sick that he couldn't even play with them.  It's been horrible and absolutely awful.  So please stop pushing yourself so you can recover and not become totally disabled for the rest of your life.  If you think CFS is intolerable now, and don't stop pushing yourself, it will only get unimaginably worse and you will regret it for decades.  Sorry to send such a negative message, but I thought it was important to warn you in order to help you prevent it from getting much worse.  Feel free to write to me and ask questions if you need to.
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    • Posted

      Hi Sandy, I'm very sorry for your experience with CFS. If one member of a couple is disabled it means you both are because you both have limitations and restrictions to your lifestyle. I think you are right to pass on the information.I did the same as regards pushing myself and just hoping it would go away. Consequently I eventually had to finish work in 1999. I    never got back to work and I am now retired. I manage my condition using various methods, not least of all The Perrin technique. I live alone and I am independent, as far as it goes. 
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    • Posted

      Really good advice.  I was at college, trying to get a university place, at the time I got sick,  I felt I didn't have time to stop and just pushed through.

      I got the place I wanted in a really good uni for what I wanted to do but, of course, I couldn't go! I deffered for a year but still wasn't anywhere near functioning... And had to just give up my place, that was 16 years ago now and I still have the condition, although I can manage it very well now...  I do wonder what would of happened if I had just given in to it in the beginging...

      Also, I cannot recommend enough, looking into allergies or intolerences as a way forward, it worked for me.  But I don't recommend the expensive blood tests, I recommend a "non invasive" allergy testing, something with electrodes or something which measures your bodies reactions with imperceptably mild electricity when you are exposed to various things.

      In any case, be good to yourself and don't feel ashamed at not being able to function in the way that you expect yourself to.

      I know there are probably big finacial implications for you, but if you can see your way through changing something to release you from this stress, it's got to be a good thing.

      Best of luck, we all have a very personal journey with this illness, which, of course, makes it difficult for others to perceive, but that's another story!!!

      Anyway, what I'm trying to say is, I wish you the best of luck with this difficult illness and I hope you can get things going the right way really soon.

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  • Posted

    You must stop pushing yourself.  This disease is a wake up call that you cannot do that anymore.  Seek treatment from holistic practitioners familiar with the disease.
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  • Posted

    Hi Melody - I'm so sorry to hear you're having such a difficult time of it - especially having a cold for so long - have you been to the Dr to have it checked out?

    I would just like to echo what a lot of others are saying: stop pushing. Don't stop altogether - find a balance that works for you. Take regular rests throughout the day - try not to sleep, just lie in a quiet room with your eyes closed (I do this around 3 times a day for 10 minutes)  

     

    Also, eat - not eating will do nothing for you - I make smoothies (made from banana, frozen berries, oats, peanut butter and coconut water) you need to get nutrients into your body and I find this the easiest way on a bad day. 

    I would also recommend going to the DR and looking into CBT - I found it massively helpful for getting into a routine and finding my baseline. 

    Best wishes!

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    • Posted

      Thanks for tip about resting for 10 minutes 3 times a day. I think this would be better for me. Rather than getting to tea time and falling asleep, exhausted, for an hour; which hinders getting to sleep at an appropriate time later. Also, smoothie sounds good!
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