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.
hi Lisa. sorry ur hopes have been dashed once more. ur sleep pattern does sound like narcolepsy. did the consultant consider this one at all? do u sleep at night? ME/CFS sufferers tend to have circadian rhythm disruption (CRD), hypersomnia or insomnia. i take it that ur thyroxine (TSH) T3 & T 4 have been checked as well as ur vitamin b12/Folate & vitamin D levels?
i have CRD & insomnia - about 2 hrs of random dream sleep out of the 24 hrs if i'm lucky. i frequently don't sleep at all, so feel zombiac most of the time?? btw, what kind of specialist training does ur ME/CFS consultant have?
Caitlin
On the plus side, at least your doctor is being diligent about ruling out other diseases. I, too, was checked for everything under the sun, including sleep apnea. I actually went to a sleep clinic to spend the night so they could check this out. Everything negative. It's understandable that you're stressed out over this.
I have no trouble sleeping at any point. If I go out for an hour I need to sleep for 3 to recover. I fall asleep instantly once in bed.
I have underactive thyroid and have the levels now correct. I also have b12 deficiency and get injections every three months.
Not sure what the consultant has, just know he deals with people suffering from fatigue. He was super expensive but was very particular. I had a sleep scale done and scored 20/23 indicating a sleep problem. He just said we need to start ruling things out before an official diagnosis. I haven't really heard of narcolepsy but I will look it up.
Thanks, Lisa
My next step is this overnight sleep clinic and so on. Just stressful not being sure what's going on. I'm also deciding to go back to work tomorrow and try get on with things as I am no further forward with answers.
hi again Lisa. yes, have a look at narcolepsy. i'd also have the b12 & folate levels rechecked. ur b12 reserves may not have been properly replinished. did u have the loading doses of 6 injections over a the initial 2 week period, followed by the 3 monthly injections?
3 monthly injections are rarely frequently enough. according to another ME/CFS expert, b12 levels need to be kept very high in ppl with ME/CFS @ above 2000 pg/mL. this would require one monthlu injecyions at the least. GP's just don't know much about b12 & tend to use a 'blanket' approach to treatment which just dosen't work. also b12 won't be taken up and used properly if ur Folate levels are not high enough. folate & b12 are interdependent. one won't work without the other. perhaps the ME/CFS consultant maybe well informed about b12 & Folate in ME treatment. he may have it re-checked for u and order/suggest more frequent injections. yes, unfortunately all private medicine is expensive, but when we are desperate, needs must become a necessity........????
Caitlin
Perhaps I should start a new discussion... but since we're on the topic of sleep. I'm wondering, if for you, or any ladies reading this, if your sleep issues surface more during certain times of your cycle. I deal with severe fatigue prior to starting, then once I do start, I have insomnia issues for nearly a week , which also leads to severe fatigue. Clearly the insomonia is related to my hormone levels, but my endocronologist keeps insisting my hormone levels are fine and I don't need to be treated for imbalance. Anyone have insight or advice?
Hi Lisa!
I understand completely what you are saying. I too have this sleep problem, so much so I have had to give up driving any distance other than around the immediate area which I live. If I go any further than this I need to pull over on the side of the road and have a sleep.
I was diagnosed with CFS 14 years ago while having a job which involved driving up to 1000 miles a week so as you can imagine the frustration I feel of not being able to drive any distance now.
I also have the issue of just falling asleep when at no notice at all I just need to sleep it's like a light switch has been turned of in my head yes it's as instant as that. So I'm sorry to say it IS a symptom of CFS or shall I say it is for me.
I know it's very difficult (and I've been one of the worst culprits in the past) not to clutch at straws because doing this is oh so stressful. If I can give you any advice it would be to "Breath" breath from the bottom of your tummy not just "Shallow" breathing. Concentrate on your breathing for just a few seconds when you are able.
I wish you all the very best Celia
I have been wondering the same thing. I use a fitbit one to monitor my sleep and findit very useful and can certainly see a pattern with it with regard to how much sleep I am taking and how restless i am
Yep. I have ME/CFS and my symptoms are very bad. That said, I did get a sleep study on the recommendation of my doctor. I didn't have any symptoms of sleep apnea, but since I also have Fibromyalgia there was a good possibilty that my Stage 4 sleep was being affected. I took the sleep test, and yes, I was not getting any Stage 4 sleep. They put me on a CPAP and it helped a bit. I think it gives me a little more energy than I had before. And truthfully, I'll take any energy I can get. I would recommend the sleep study if you can afford it. There might be a sneaky sleep disorder in there that can be helped. Good luck.
Don't stress the sleep study. It is easy and you will have answers in a day or two after. In the sleep study you go in, they hook you up to sensors that can roll around with you while you sleep, and then, well, you go to sleep. They watch your sleep patterns on a monitor to see what your brain is doing. Truthfully it is kind of cool.
Since I had ME I have seldom not had a wakeful period of 1 to 2 hours arround 2am.
That makes me feel better. Was super scared about it.
Yeah I had my loading doses done and as far as all checks done all levels are where they need to be in both b12 and underactive thyroid.
The sleep clinic will be done through the NHS as it would cost a few thousand privately and I simply can't afford that.
Lisa
I'm not much help, I just sleep constantly. There's no cycles to mine. I wish there was though. Only cycle I can see if that I need to nap for between 3-5.
I spent £900 on lessons but I couldnt concentrate and I had to give up after nearly killing myself haha!
I'm just glad i've seen that someone else has had these symptoms. I was worried as I hadn't seen much people talk about it.
I know that I feel like they dangled the carrot but there is now a thought in my head that there could be a cure if it not CFS but i'm just trying to not get my hopes up and keep calm.
Thank you for your advice.
I've not heard of fibromyalgia or know much about the sleep cycle but I will have a look. I'm going to do the sleep study through NHS as I couldn't afford the few thousand.
Thanks!
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.
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!