Been stuck in bed for 3 weeks..again..Any advice?

Posted , 7 users are following.

Hi all,

I have recently been hit by a mixture of symptoms again which has left me not leaving my bed in nearly 3 weeks. I do manage to do little bits around the house during the late afternoon but back in to bed within a maximum of 5 hours.

During the hours I am out of bed I am pretty much like a zombie and trying to remember what I planned on doing when I go in to the kitchen etc.

 Plus every task takes me so long as nothing is working correctly from my head to toe. I have severe brain fog and my body just aches all over (This has eased compared to week 1 as I could barely move for the first week or so)

As the aches and pains over my body are starting to ease could this be a sign that my body is finally starting to recover? I ask as I am off work again and I am trying to let them know how I am but I don't want to let them think this is easing off if this isnt the case. 

The last time I felt like this I was only off for 1 week but this time is is reminding me of the first time this happened to me earlier this year and that time I was off work for 4 months.

I am currently waiting for my appointment for my local cfs/me clinic so I have not started to get any support yet or even a clear understaning of this illness.

 I am also waiting for an appointment with occupational health so they will hopefully be able to explain to work more about my symptoms as I don't think they are understanding this illness at all as my manager seems to think things will ease with excercise and being "out and about" (He believes I would feel better for attending work for a few hours a day)

I try to explain that no matter how much rest I get I still feel like I need more and thinking about commiting to work is something I am beating myself up over as I feel I might be able to go in to do light duties sometimes but I don't feel like my body will allow this; especially when it comes to moving and getting ready and then getting to work (which is a 10 minute walk from home) plus the brain fog will make me feel useless being there.

My gp is happy to sign me off for as long as it takes but I really feel bad for my collegues and am really stressing about getting back for them (I am a customer service manager and the team rely on me alot and usually quite a character so am missed when not in)

Do I try to return when I may not be 100% which may cause me going off sick again or do I rest until I know i'm better?

I want to just curl up and cry!

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  • Posted

    Hi Shane, I know how you feel, it's an awful feeling! It's hard when you feel like you're letting people down that depend on your help but you need to take care of you right now. Pushing yourself back into doing things you're not ready for will only set you back longer. It's hard too because people look at you and think you look fine, you can't possibly be that sick! I had the hardest time with my family...getting annoyed at me when I wasn't able to do things at the last minute, would fall asleep during family get together six, etc...My mother actually told me I needed to push myself harder, which only makes things worse! I was recently diagnosed with Dysautonomia, a disorder of the autonomic nervous system. Have you ever discussed Provigil or Nuvigil with your doctor to help with your fatigue? Unfortunately, my insurance will only pay for it if you have a diagnosis of Narcolepsy. It is very expensive to pay for it out of pocket, about $600, I believe. I'm taking Adderral now which I have to pay for out of pocket as well but at least it's $400 less! Anyway, it has really helped me a lot, I don't know how I would have been able to get out of bed at times without it. I don't take the extended release, so it only lasts for about six hours and if I need to I can take another dose at that time but usually I don't. I just take enough to help me do the things I have to, part time! If I'm unable to get things done at home, oh well, lol. Luckily my husband helps out a lot! I wish there was more Ideas I could offer to help you! I know there are things that are supposed to be helpful, such as light exercise, diet, etc...I'm in a study for Dysautonomia, it is a supplement with the vitamins that are supposed to be helpful for dizziness, brain fog, fatigue, etc...and I feel it is really helping with my energy level! It's not on the market yet. I tried to send someone else the vitamins that are in it but my post was deleted, I guess that's a no no!

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  • Posted

    Here's my two cents worth of advice, Shane.  If you  are having trouble staying on your feet and taking care of the basics around your own  home, you are not ready to go back to work and the stress it involves.  Listen to your body.  If it is telling you it isn't ready for work, it isn't ready for work.  If it is telling you light duties could be okay part-time, then try to arrange that.  I have lived with CFS since the late 1990's,  and I know, from experience, that each time I decided to just push through and ignore what my body was telling me, I was flattened for days.  Listen to what your body is telling you. At least, that has been my experience.  It's the only way I have been able to live with CFS.


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  • Posted

    Hi, Shane. So sorry you're dealing with this lousy illness. The good news is that you say the aches and pains are starting to ease. I would think this means your body is now recovering. My advice to you is to give yourself every chance to get better and not go back to work prematurely. I understand that you want to get back to work. But you have to think of yourself first. If you're unwell, you're not doing anyone at work any favors, and least of all yourself. It's very important to pace yourself, get plenty of rest, and not go outside of your energy envelope. The more times you do this, and crash, the less chance you possibly have of a fully recovery, according to Dr. Lucinda Bateman, a foremost specialist here in the U.S. Go to the "solve me/cfs initiative" website. Within that site, go to "humans of me/cfs," where you'll see personal stories about dealing with this illness. You might want to print out a story, or any other information from the site, to show to your manager.

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  • Posted

    I have been in a severe relapse for over a year & as it turns out it is most likely from mold exposure.

    Often there is mold where you live or work.

    There isn't a huge amount out there about mold & ME/CFS, but I am sure if you do a search, you will find something. Otherwise I agree with the previous advice, don't overdo or push yourself, it may backfire & make you sicker. Learning to pace yourself is the trick to surviving ME/CFS.

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