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Chronic fatigue syndrome. How did yours start?what are your symtoms. Do you sleep?

Posted , 14 users are following.

ol05758
ol05758

Hi everyone. Im extremely tired. I do not sleep well. But the fatigue is getting worse. Wanted to hear about other people's experiences. Is it after taking a type of drug. Or stress related. Do you sleep well? Etc.

Thank you

1 like, 22 replies

22 Replies

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  • wknight
    wknight ol05758

    Posted

    If only it was that easy, don't know what started mine. Fatigue can be caused by lots of conditions so you need to see a Dr and it takes ages to get a diagnosis because they have to eliminate everything else and that takes time. People symptoms vary also.

    i can have a really good nights sleep and still feel exhausted, however it goes beyond that with for me, my brain that isn't wired properly so take a simple mental task like a game of solitaire, it would take me 15mins if I could last that long to complete it, at the moment I am doing very well, the same game 2 min

  • claire45280
    claire45280 ol05758

    Posted

    I take Amitriptyline 50mg for pain and for help sleeping. I can generally sleep through the night with this. I have to take it early, otherwise it will affect my fatigue levels the next day.  I believe stress has an impact on all illnesses, it can cause my brother to have flare ups with his Ankylosing Spondylitis.  Do you take medication?

    I have to pace to maintain a tolerated amount of fatigue. This is very difficult as the smallest amount of activity will increase fatigue the following day or up to a few days following this.  I am fortunate that I am able to get out of the house a couple of times a week with help from my husband or son. However, this always takes a few days to recover from, but I feel the benefits of getting out of the house outweigh the negatives, for me, for staying indoors.

    • ol05758
      ol05758 claire45280

      Posted

      Hi claire. Thanks for sharing.

      I don't take meds apart from sleeping pill. My fatigue feels like no energy. And occasionally I will take diazepam. I feel better in the evening. Not full of energy but cannot feel that fatigue as much and thus worry less and manage to relax. Because fatigue worries I find it hard to not rack my brain during the day about. How will I get better. I am certainly not bed bound. But everything seem to cost me.

      It's been 2 weeks now

      And got worse by trying mirtazapine one night. Made me sleep but no increase in energy though.

    • claire45280
      claire45280 ol05758

      Posted

      Getting the balance between activity and rest is a constant challenge.  I know there will be payback with whatever I do. Sometimes I get an upward cycle of improvement, which tends to lead to a downward spiral of decreasing energy (which can last months to years)  I find that by taking the amitriptyline and sleeping better I am better able to deal with my symptoms the following day.  I try as best I can to live each day to the next with regard to activity and planning. This can be frustrating, but decreases the pressure I put on myself to do as much as I can without crashing.
    • sharon66596
      sharon66596 claire45280

      Posted

      Hi Claire how old is your brother who has AS my son has this condition and cronic fatigue he is 17 but has had both conditions since he was 14 
  • Beverley_01
    Beverley_01 ol05758

    Posted

    Hi there,

    My cfs/me is from a near fatal car accident (I say this because the police and paramedics said they could not believe I survived it) it was like something changed that night. I was in masses of pain and it turned out I had a fractured spine. I had ptsd symptoms and found going outside near cars a struggle. I was shattered and in pain for a long time with doctors,physio's and psychotherapist telling me this was to be expected due to the physical and psychological impact of the crash. Light, sound, smell was much more intense. At first, like most people here, I tried to keep doing things. My mentality being I felt like a zombie anyway. But I felt lifting pans etc too much and still, 3 yrs on nearly, cannot carry shopping or even a handbag. It was when my friend got post viral fatigue and then had a referral to cfs/me clinic that I asked my own doctor could I have cfs? This was after 18 months of being a zombie : ) what is your own story?

    B

    • ol05758
      ol05758 Beverley_01

      Posted

      Hi beverley

      Thanks for sharing your story. I feel for you. I can understand how frutrated you must feel. Are you ok when you lie down? Or can you feel the drain? I feel the drain

      But luckily for me I have no pain. And manage to get out and about. But recently out and about is just on the motorbike. And rarely on foot. As distances stress me out. I stopped sleeping completely 4 years ago. And had more energy than today to be honest. So that's why I'm worried about it. I still don't sleep well. Maybe 4 5 hours broken. So should be okay ish. I did get better last year. Think maybe on the short period I was on sertraline. But mainly my issues were tension and anxiety but now it's mostly fatigue. Gets a bit better in evening. I am still working part time. And hope it's just a blip as don't wanna lose job. And need to stop worrying as it will only make it worse. But I get so frustrated about not being able to do what I wanna do. Even sitting down I find hard as I'm soo tired? Is it just worry that's eating me up? As I said. No pain. Just 5%energy enough to move around like a zombie.

      I took mirtazapine a couple of times and that's when it all got worse. sad

      No body around me gets the frustration I'm in. I guess I gotta tell myself I'm still able to get out a it within reason.

    • Beverley_01
      Beverley_01 ol05758

      Posted

      Hi again,

      I feel that I lay down alot and my sense of feeling drained fluctuates. I have a lot of shakey feeling and lifting say a pan or going for a walk will really set this off on certain days. I just had an emotionally busy weekend as my son went to university. I'm not driving presently but, even so the journey was draining and I'm impressed that I sat so long. We did have breaks. Its so frustrating not being as active and has taken a while to sink in. I'm still positive that recovering is possible but, am much more aware of my limitations and don't push my self like I did. Pain is an issue so I avoid lots of things that cause it.

      It is one of the hardest parts of this condition that people don't understand it and the sense that you're somehow making it all up can be a real drain.

      Do you find riding the motorbike is made harder? My worry was that now I wouldn't have the strength to pick a bike up if it went down. The thing is, when I've been out I've felt safer on a bike sometimes and I'm hoping to eventually get back on the road.

      B

  • orange12933
    orange12933 ol05758

    Posted

    I have not been diagnosed with chronic fatigue but I pretty much sleep for most of the day everyday. 
  • orange12933
    orange12933 ol05758

    Posted

    I constantly get major headaches and have occasionally had some dizzy spells when I have been standing and have had to lye down.
  • seidman
    seidman ol05758

    Posted

    Hi

    Mine started after a severe virus dumped me in the acute ward of a hospital for a month - I had no medicines at all, as there are none for that particular virus.

    There are different types of 'stressor' from illnesses, to severe shock, severe emotional trauma, to over work or over training.

    Look up SEID and IOM, also Centre for Disease Control, plus the links on the right.

    I slept but it wasn't refreshing!  I tried Amytryptaline, but preferred the pain to the. chemical straight jacket!

  • Ravenwood
    Ravenwood ol05758

    Posted

    I got sick after a bout of mono (gladular fever).  I was sick with a temperature of 102 degrees for 6 weeks.  I was so tired, I would wake up for an hour or two just so I could drink some water and pee.  After 6 weeks, I started feeling better, but I was still tired, and that feeling never went away.  Over the years, I have gotten sicker.  At about the 3 year mark, I started getting severe muscle and joint pains (fibromyalgia),  I cannot eat most foods because they make me ill.  I cannot exercise, because to do so makes me very sick for the next few days.  

    I take a number of meds.  I have meds to treat my anxiety, allergies, fibromyalgia, high blood pressure, etc.  

    My sleep schedule is erratic.  Some days I sleep well and some days I don't.  Just this last week, I had a night where I only got 2 hours of sleep because I had insomnia, but the rest of the week, I slept for 13-15 hours a night.  It is what it is.  I try not to fight it anymore.  If my body wants to sleep, I let it.  If not, I get up and fiddle around until I get sleepy.  It reduces my anxiety to worry so much about things I cannot seem to control anyway.  

    Take care.

    • mat93052
      mat93052 Ravenwood

      Posted

      Hi Ravenwood, I have similar symptoms, and eating a clean diet, with foods to support toxins eliminations really helped.It's taking a long time though, I've been doing it for 2 years, but with steady improvements. Hope this helps.
  • scryfox
    scryfox ol05758

    Posted

    I can't remember how it began but I can pinpoint the day it began because I went away the following weekend and came back and crashed for the first time. Stress doesn't help and neither does anxiety, they both exasperate symptoms. Sleep varies for me, but I very rarely sleep all night without waking up at least once.
  • shirley74154
    shirley74154 ol05758

    Posted

    How can so many suffer from this and get so little help from the studies?!  My FMS/CFS started immediately when I got pregnant 45 years ago and the fatigue is as bad as it's ever been.  I often sleep round the clock for days at a time...half my life is spent in this very deep sleep and nothing I do including taking Ritalin will keep me awake.  I am fortunate that my pain is much less in the last five years with the help of several medications and deep tissue massage has been helpful when the pain gets bad.  Has anyone done anything that helps the sleepiness?  Does anyone else sleep for days at a time?  Calling this illness fatigue doesn't quite describe what we actually suffer.  I used to have insomnia for nights at a time like so many of you but my problem with that resolved with medication.  The insomnia I now suffer is usually due to muscle spasms which diazepam usually controls.  Good luck to all who suffer from something that normal people can't possibly understand because we look fine....a lot of people suffering what they consider real diseases also look fine!
    • mat93052
      mat93052 shirley74154

      Posted

      Maybe the lack of research is due to :

      Private research : complex disease that is not well understood, difficult to evaluate how long and how big the investment in research must be before a treatment can be found and profits be made.

      Public research : The less people are aware of it, the less politician are likely to award grants to research proposals or to take action like setting up tasks force/comities, research initiatives.

      I think public research would be a great start but there's a lot of work to do before the general public becomes aware of it.

    • Beverley_01
      Beverley_01 mat93052

      Posted

      Hi Mat,

      I live in Yorkshire and i'm currently attending a cfs/me clinic here. I am part of the research in cfs/me being carried out within the service. I filled in a questionnaire at the beginning of my work with them and have just filled In a second a year later. I'm still part of their program. Thought you maybe interested in the study.

      B

    • shirley74154
      shirley74154 mat93052

      Posted

      Thanks for your views on the research and funds available for research.  I'm going to check in Washington, D.C. To see what is being done and try to get a support group behind me here in Pa....the squeaky wheel gets noticed.
    • mat93052
      mat93052 Beverley_01

      Posted

      Thanks for sharing, it's great to hear research is being done !
    • Beverley_01
      Beverley_01 mat93052

      Posted

      No worries, will keep you all posted on any results I get through.

      B

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