wierd sypmtoms

Posted , 5 users are following.

Does anyone have symptoms that come and go throughout the day? I can feel fine then all of the sudden iIget that achy heavy feeling and i feel exhausted. I actually get dark circles under my eyes. People can see when i don't feel good. I was on adderall but quit taking it. It was HORRIBLE! I switched to nuvigil. Could it possibly be from that? Before I was diagnosed and on medication Iwould do the same thing daily except i the brain fog with it. On meds the brain fog is gone but it still comes and goes. From hour to hour. Well maybe not that often but every few hours. its enough to drive a person crazy. Just like to see if anyone has the same experience. All I'veread is people having it one day and not the next. Thanks for reading

0 likes, 11 replies

11 Replies

  • Posted

    Hi, believe me you are not the only one it happens to various times a day.

    i can be well enough to go and visit family and grandchildren and have a lovely time for a little while, then, just as happens to you, I fade out just as if someone has pulled a plug on me and the fatigue and aches kick in. 

    By now my daughters recognises the signs, takes one look at me and orders me up to a bedroom to sleep. 

    I feel so silly going to crash out for a while but I just can't help it. I sleep, sometimes an hour, sometimes more, it helps so much.

    i can't say I'm "better" when I wake because I feel disconnected somehow. It takes me a while to stop remembering dreams and then I slowly get back to a functioning state.

    until the next bout that can come and go in an hour or can last two days where I'm only able to sleep and I hurt all over. A deep ache in my bones and muscles. 

    I don't know what the meds you are taking do exactly however I was previously taking GP prescribed co-codamol for pain, and Amitriptyline at night to help with sleep (apart from the CFS and Fibromyalgia I have chronic sleep apnoea, and restless les) and now the GP has moved me to Lyrica ( Pregabalin 150mg ) twice daily. It seems to work better as I sleep slightly better but I still can change feeling "well" or not from hour to hour). 

    Everyone is different but just as you describe I can recognise the same traits in myself. 

    Let's just be thankful for the good bits of the day and sleep away the bad, eh? 

    Best wishes to you. 

    • Posted

      Thanks so much for your reply. Its nice knowing there's someone who can relate to how I feel. I wish you well.

  • Posted

    Hi Stephanie,

    Yep, I also get these fluctuating days where I feel almost OK ? I once had about 5 minutes of total "back to normal " and felt fantastic! I started to plan what I could do later that day. I was excited. When my 5 minutes were over, I was like "ah, mmm, back to CFS/me!"

    Hard as it is, the best way to get more good time in the day is to rest when you don't feel bad which is very difficult. I did too much over a week ago and am still floored by it. I think I'm OK so do too much and end up worse for it.

    Be good to yourself and rest as much as you can


    • Posted

      Yes its really hard. Maybe one day we will all be free from this. Thanks for your reply and take care.
    • Posted

      Hi stephanie,

      My friend said there was a radio programme on on Sunday about CFS drug trials in Norway that seem to be working? I wasn't well symptoms wise for the last 3 days so didn't get a chance to hear it myself.

      Also, I know a few people who have recovered. Some not fully but, well enough to be able to do more.

      Hope is the key, that and rest and a good look at what things aren't so important that we feel we have to do in our lives.

      Be good to you


    • Posted

      Resting and pacing two people I know of one of which can now work part time.

      my friends partner was bed bound and had this for ten years before gradually getting better. He still has a rest on an afternoon

      One person I know of had it for two years and felt they got better by drinking aloe Vera juice..

      There's no certain cure. Some people just spontaneously recover (met someone this happened too though they felt their symptoms were milder). There are a couple of people on here who have recovered too.

  • Posted

    I have told my family and my doctors that it feels as though I had been plugged into an electric wall outlet and someone suddenly pulled it out.  Then, for no reason at all at a later date, someone puts the plug back in the outlet.  Sometimes it is out for days on end.  Sometimes it can be a matter of hours and it is back bringing me the juice my brain and body need to operate.
    • Posted

      Yes!! That is a great way to describe it. Its so hard to try and tell people how you are feeling. Its nice to know there's others who understand : )

    • Posted

      Absolutely!  I understand completely!  Have been dealing with this stuff for over 20 years and am very tired of it.  However, the trick is learning to focus on what I can still do and not on what is gone.

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