1. Community
  2. Brain and nerves
  3. Chronic Fatigue Syndrome

CFS/Sleep disorder

Posted , 10 users are following.

lisa16001
lisa16001

I recently paid privately to go and see a CFS specialist. He then has made the decision to refer me to see a sleep disorder specialist as some of my symptoms don't add up for CFS such as falling asleep during activities such as in the car, at dinner during parties when I do make it out. He hasn't ruled out CFS but is looking along the lines of sleep apnea although my partner was interviewed at the appointment and I didn't have any of symptoms. He also suggested a cortisol issue such as Addisons/chushings although I've already had these checks done.

Has anybody else has experience with this?

Just slightly stressed I may have to go through all of this just to end up back at CFS and got my hopes up about another diagnosis that does have a cure.

1 like, 18 replies

18 Replies

Prev
  • georgeGG
    georgeGG lisa16001

    Posted

    Since I had ME I have seldom not had a wakeful period of 1 to 2 hours arround 2am.
    • andrew22534
      andrew22534 georgeGG

      Posted

      Yeah, mines 4 ish till 5ish or so... not fun then i get up really strugling then as Lisa, between 3 and 5 i need (and really do need) a bit of shut eye, if i dont accept it, half the time it happens anyway if i fight it then its a 50 / 50 chance of not being able to sleep that night.
  • ChrissyC
    ChrissyC lisa16001

    Posted

    I was diagnosed with ME around 8 years ago at a time when I just wanted to sleep ALL the time really including not being able to resist shutting my eyes 'just for a second' even when driving. My eyelids just felt so heavy all the time. So you're certainly not the only one with this. A sleep test was included in my bank of tests to eliminate everything else before diagnosis and showed nothing out the ordinary. In the early days I attended a group thing with fellow sufferers for several weeks, most of whom had been suffering much longer than me and they all nodded their heads knowingly and said 'ah, you're still at the over sleep stage'. Well I must admit I no longer sleep QUITE as many hours a day as I used to then but the super heavy eyelids are always an indication to me of overdoing things or just of a bad patch. Good luck!
Back to top
Prev

Report or request deletion

Thanks for your help!

We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.