Better and worse days with CFS/ME?

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Hi everyone, I was diagnosed with CFS/ME almost a year ago so I'm still learning how to live with this horrible illness! I was managing to work 25 hours a week before November but then I had surgery to remove an ovarian cyst and I've gone down hill since then, I haven't been able to go back to work as a nursery nurse and I spend 99% of my time laying on my sofa in pain and exhausted.

Has anyone else had CFS/ME and then had it made worse by surgery, trauma, stress or another illness?

Also do other people have good and bad days? Some days i can't get off my sofa and I feel dreadful, I suffer badly with pain in my legs, feet, back and arms. Some days I can manage to get up and go for a short walk or pop to the supermarket! It's so strange how it differs so much from time to time, however when I do have a good day and do something I really pay for it the day or two after ūüėě

Thanks smile

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  • Posted

    Your comment about surgery is very interesting. I was diagnosed about 7yrs ago and use to boom & bust. living on my own you either do things or die. In the 18mths I had my CFS under control and was even cycling long distances thanks to pacing.  I had a general 2 was ago and ever since I have been very tired sleeping like I never have done before.i am hoping to work through it.

    if you pay for activity afterwards, as I use to the when you are good you are doing too much. You need to learn the point at which your body accepts that level of activity without punishment. Once you know that point and it comes with trial and error I used that as a base to start to function again. Very slowly I increased my activity level like a marathon runner and that worked for me and I was back starting to lead a normal life.

    hang in there and try serious pacing and learn to say no I can't do that today, best of luck 

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  • Posted

    Yes Lau188, like I told you before my husband's ME/CFS was made much worse after his surgery to remove a cyst from his jawbone.  He became totally bedridden, and couldn't even get to the bathroom without me supporting him to keep him from falling down onto the floor.  He ended up on the floor many many times because I couldn't always be there 24/7 - until I stopped working to take care of him.  He remained 99-100% bedridden for many, many years, and even decades.  He couldn't take showers since he couldn't stand, and most of the time I had to give him sponge baths in bed.  All he could do is lay in bed and sleep.  I know this isn't encouraging, and I'm sorry, but unfortunately severe cases of this illness are like this.  It sounds like you're going to have to put your job on hold for a while, depending on how long it takes your body to start recovering.  It could be a month, many months, years, or (like my husband) decades.  Remember, just because you can manage some days to get up and go for a short walk or pop to the supermarket does NOT mean that you should, because just like you said, you really pay for it the day or two after.  My husband couldn't even go to his doctor's appointments many times because of being too weak to even get to the car to let me drive him there.  And like I said before, a lot of it was because he kept pushing himself in the early days of the illness, and wouldn't give up trying, because that's what we were told he should do.  But they were all WRONG.  Pushing yourself is BAD for people with a severe case of this illness.  They can't even pace themselves because they are just too sick, and have to constantly rest!  Like I said before, being unable to work temporarily is much better than damaging your system and not ever being able to work again!  So just continue to rest.  Probably the most exercise you should do at this point is just some simple light stretches while you are lying down.  Be careful and take it easy, and if you need more than an over the counter pain medication, talk to your doctor about it so you can at least experience some relief.  smile

     

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    • Posted

      Your husband sounds like me. When I was told I have this illness I was told I can't work. I told my doc that wasn't an option and went back to work. 5 months later I was carried out of work! For 3 yrs I was bedridden and couldn't get out of bed. I crawled to the bathroom and showers were not to often. When I started to feel better I pushed hard for about 6 months and crashed hard but I also broke out with blisters on my arms and legs. We did everything to make them go away...I was seeing a CFIDS specialist at the time too. We did everything she could think off and they wouldn't go away. It took 8 months to finally get rid of them, and then I was taking prednisone at very high doses. It was awful, they hurt, burned, itched and throbed. I learned then how to not push and crash..lol.
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  • Posted

    Yes I've had it get worse with surgery and it can take a long time to bounce back. Even healthy people take some time to bounce back. But of course, its worse for us. I find that when I'm in bed laying down that I feel better and then I think of all the things I want to do! Then I sit up or get up and wham, its like getting hit over the head. All I can do is lay down again. My illness changes day by day. I don't do anything my body tells me not to. I try not to push and crash although I have done it and I pay for it. But I don't do it to often. I take a nap everyday and work within my window of feeling good. If I plan on shopping and I don't feel good that day, I don't go. When I take care of myself I have good days and it can last for 5 days or 5 months, which it hasn't yet.

    BTW, I also feel it one or two days after I've done to much, I was told its one of our many symptoms..Bonnie

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  • Posted

    hi there! i just had brain surgery in november to remove a growing brain tumor (thankfully, noncancerous).  granted my neurosurgeon told me it would be 3 to 4 months recover; i'm at the end of 3 months, and it is clear that the surgery spriraled my CFS to be even worse.

    it's a lot for our bodies to take on the added trauma.

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  • Posted

    Welcome to the world of ME/CFS. What you're describing is typical for this illness. I certainly have better days and worse days. And it's very easy to overdo it and pay by feeling more ill. This is called the push/crash cycle. By pacing yourself and learning your limits, you can hopefully stay inside your energy envelope and avoid this cycle. And yes, all the things you mentioned--certainly stress--can worsen ME/CFS.
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  • Posted

    Yes, this was definitely true for me.  My understanding is that trauma can trigger CFS/ME.  I also had brain surgery 10 years ago, and I attributed my lack of recovery from the surgery to the surgery itself.  Now I know that I had CFS/ME for about fifteen years prior, but I was still able to function, just really tired.  Post op it became disabling, and I've been unable to do substantial work since the surgery.

    I also cycle, very predictable, every other day.  Unlike those who pace themselves, I grab at every ounce of energy, and then recover the next day.  But, I have this cycle regardless, even if I don't push hard on the in between days.  Unfortunately my mood correlates with the energy levels.  It's not as serious as bi-polar, but I get severely depressed on recovery days, or what I call conservation days.  That's my positive spin.

    hope this helps.

    nan 

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    • Posted

      My mood also correlates with my energy levels. I am quite often in a bad mood these days, which my husband does not understand and this is causing problems and arguments between us which I could well do without.
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    • Posted

      I can relate to you. I have every other day episodes too when I pace myself. It is predictable. And when I overdo I get bad two days later. That's my norm but then there's days I can't move for no reason. Or least I haven't found one yet.

      Bonnie

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  • Posted

    My M.E. was made 10 time worse after a fall due to no fault of my own on 28th Dec, 2014. after this I got a frozen shoulder which is 90% better. I just don't know how to get back to my normal state of M.E. I have to rest and pace myself big time and like you if  Ido a bit too much I pay for it afterwards. Some days, but rarely I might feel slighly better.

    Best of luck and I know what it is like-HORRIBLE

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  • Posted

    Yes, I have found it takes much longer to recover from anything.  Being upset also really contributes.
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