Tired and sleep for hours and hours: Hi all I am... - Behçet's UK

Behçet's UK
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Tired and sleep for hours and hours

Hi all I am suffering really bad from tiredness atm yesterday I felt fine in myself apart from the aches and pains in my arms and legs. Then 2 oclock then my body give up and I feel asleep and I never woke untill 10:30 this morning this has happened before but not for that lenth of time does anyone suffer with anything like this and if so is there anything I can do to try and stop myself from doing it? I could even now go back to sleep how can I still be tired :-(



30 Replies

I'm like this all the time but nothing I can do about it. That's one of the symptons of BD, extreme fatigue. Just have to sleep when it happens, I think it's a way of saying your body needs rest x


Hi roxybaby thanks for your reply :-) It dont help that I dont feeel like eating when I'm like even to eat or drink is too much trouble finding it hard to cope with and relly wish there was something I could to do to stop it

thanks NIcky


Hi Nicky hun,

It happens to me pretty frequently I am afraid. :(

I have learnt that it is my body telling me to stop what I am doing and shut down for a while. I have had this even from being a child so well before I was actually diagnosed with BD. It always seemed to be my body's way of telling me there was something wrong and just switch off.

I have also learnt that there is nothing I can do about it and I just live around it and go with the flow these days.

Sorry if this wasn't what you really wanted to hear hun. Mwah!

tootles xx :)


Hi Nicky,

I can completely empathize with you about the fatigue. I am constantly feeling very drained and very tired; no amount of rest or sleep helps. It just will linger on for a while and then disappear for a few days or a week, but then suddenly reappears. Nothing seems to help make my chronic fatigue better, not even steroid helps to give me an energy boost. The worst thing I find is when I get extreme, uncontrollable sheer exhaustion that just takes over my entire body and my mind-- this usually comes about with a bad flare of my symptoms, especially full-body swelling and pain-- I often describe this exhaustion as being completely overwhelming and it feels like a cement wall is closing in on me and I have no strength to fight it. When I am this exhausted, I am usually bed-ridden because even just sitting up exhausts me even more. Simple everyday tasks become insurmountable for me to accomplish because I just don't have the strength or energy for them. I've had it last for only a couple of days, all the way to three months straight. It's horrible and can be very depressing, especially because I feel fine emotionally and I want to be able to do things, but my body says no. For me, I think this is the worst part of this disease because I can handle the pain and swelling to a degree and there are meds that can help alleviate it a bit, but there's absolutely nothing that can help for the fatigue and exhaustion. I think of it like this-- our bodies are attacking themselves all the time; so our bodies are working so much harder than it would be without autoimmunity, and also it constantly causes some degree of tissue damage-- so it makes sense as to why we feel like this. But that doesn't make it any more easier to deal with. I have it double whammy though because I also have chronic adrenal insufficiency from another rare autoimmune disease called "Addison's", which also causes chronic fatigue, especially when my cortisol level drops. My doctor has also found that during very bad attacks of swelling and pain, my "LDH" level in my blood is extremely elevated-- which may also be correlated with my overwhelming exhaustion.

My best advice for you would be to just listen to your body when it's trying to tell you enough is enough. I know and understand this is tough because we want to be able to continue living our life and enjoying things, but its just not worth it to try fighting it because that'll just wear you out even worse. I really wish I could offer you more advice than that; but If anyone else has some advice as to managing it, please let me know also-- I'm just so tired of being so tired all the time. Take care Nicky :)



Hi tootles thanks for your relpy I glad Im not the only one who is getting this but aslo i dont wish this on anyone at all I feel like c*** most of the time and each day rolls into one :-(

thanks nicky


Ha ha ha ...................... I think I quite like being called Tootles ! LOL. :)

Luv Xandii xx


Hi Jenna thanks so much for your big reply :-) As I said above I'm glad I'm not alone but I wish my body would give me a break anything seems to much trouble atm yesterday I was sleeping all day today Im I feel like I run a marthon and cant move. My poor children dont know if they coming or going I need to find a normal here if not for my self for them :-(

thanks Nicky


You're welcome Nicky :)

I just feel so bad when I hear of other's who are struggling and trying to fight through Behcet's fatigue because I know just how horrible it is-- it pretty much robs you of your entire life, and you wake up one day to find that things are not the way they used to be.

Learning to adjust and accept all these changes in our life is so overwhelming because we have absolutely no choice in how or why it happens.


Hi Nicky

I started having those 'episodes' about 15 years ago (pre BD) - overwhelming tiredness but nothing else hurt.

I would have to go to bed for 24 hours and that would solve it for a while. (Bit hard telling the boss you are sick when you can't say what is wrong).

Now I'm having this a lot more frequently and as Xandii said it is a sign that it is time to go to bed and let the body do as much healing as it can.

I'm in a position now where I can have a nap in the afternoon which does help a lot.


PS I used to work for doctors and one said to me a long time ago "listen to your body". If its saying it wants to sleep ...


PPS - I've just realised quite a few of the replies said to listen to your body and rest.


I think we are right in we must listen to our bodies and minds.

Sometimes life takes over and we stop listening to the signals that tell us to slow down and pace ourselves. This is particularly true when a flare is approaching and if we continue to fight the signs and push ourselves, Eventually the body will take over and force us to. This is when we have an almighty crash and this in itself can bring on a bad flare.

When I was diagnosed with Chronic Fatigue Syndrome many years ago there was no support or treatment and I had to learn to work within the fatigue which was completely overwhelming. It is like a bank account where if you continue to withdraw from and not put back in, the bank will run out. Replenishing the bank account is very important as our bodies are using so much energy dealing with our symptoms that there isn't anything left for anything else.

Pacing is probably the best way to deal with this and even pacing when we feel better is just as important as when we feel ill.

Hope this makes sense as I am also having bad fatigue and brain scramble at the moment ;(


So sorry, Nicky. I've been sleeping for 5 days straight. This happens to me about every month or so. Sometimes I can stay up all day and go to bed like "normal" people, but not very often. There's nothing I can do about it but sleep. I've tried to stay awake at times and work on my computer (I work from home), fell asleep and woke up to find myself slumped over the chair with my head on the floor! (I had to laugh at myself). Coffee doesn't help because caffeine works opposite for me - keeps me awake. Hopefully this will pass for you soon.


thanks for all the replys am very greatfull tat everyones is is understanding of how silly somethings sounds but its the worse thing to have to put up with. I still on sofa having covo obe minutes and snoring the next lol (its funny when you think about it like that) it happens so often now my oldest daughter has a blanket ready waiting for me lol and always takes off me glasses.

thanks gagain guys

Take care Nicky


Nicky hun,

I find myself using my laptop and suddenly I hear someone snoring ....... and then I realise it's me ! LOL.

Tootles till later xx :)



lol thigs we do huh xx

take care




I also suffer with fatigue and tiredness and can totally sympathise with you. Sometimes no matter how much sleep I get I still feel drained and exhausted.

Like others have written we have to listen to our bodies and rest when it tells us to. I know all too well that it isn't always that easy. As a single mum and working part-time I often get through the day on autopilot and then just crash in front of the T.V in the evening, well thats if I don't fall asleep when I get home from work at lunch time.

C x x


Im finding even getting out of bed and getting dressed is to much effort :-(


I have the exact same thing happen to me, right down to the not much else apparently flared up or wrong beforehand except for pain in my arms and legs. It is very frustrating. I am a single mom and trying to go back to school (and work a little) after 5 years of full disability. I feel functional some of the time, then suddenly I can't control it, I have to sleep. I can't keep my eyes open or awake no matter what I do. I too suffer from adrenal insufficiency (non Addison's - mine is Type 2, due to pituitary malfunction. I don't make ACTH or cortisol.) When this was recently diagnosed, I thought for sure I had found the answer to my fatigue problem. I am being treated for it with daily steroids, and I do feel somewhat better, but the problem with sudden profound exhaustion some days, or barely being able to get up others, is definitely not gone. I have to admit it is a little disheartening to realize how prevalent it is with Behcets. I was still hoping it was a problem I could solve to become more functional, not another limit I have to accept. Sigh.


I find it so hard not knowing whats coming next. Every morning I wake up and move each part of my body before getting out of bed to see which is hurting on that day :-( there is not a day that is pain free altho the pain is horrible I would much rather be in pain then have the complete exhaushtion its horrible at least when Its the pain only I'm suffering when I have exhauahtion my poor kids suffer to as they have to be house to so I know where they as there would be no way I could even think of moving to find them :-(

take care peeps

Love NIcky


hi every one

as like all of you i to have all the same things pain exhaustion fatigue i have nights i just can not sleep and others i can't wake up and for a very long time i had a very big problem i would just fall asleep no matter what i was doing my kids us to make jokes about it i could be sitting at the table having dinner and just go to sleep and they us to wake me then they just let me be as i would wake up and what ever i was doing i would go back to it like nothing had happen even if i was talking i would wake and say the next word and keep going they loved having there friends over so they could watch me lol little buggers . ( i could be out for 1 to 5 mints )

then i was diagnosed with narcolepsy and put on modafinil to keep me awake it dose help but some days i can still just nod off lol and i think it helps with my sleep as it makes me stay awake all day and i am so tied and exhausted with my bd i sleep a bit longer at night if my pain is not to high . and you were saying about eating that is one thing i find very hard to do i never fell hunger and when my mouth and tummy ( from bd ) is realy bad and that is most of the time there is a lot i can not eat but i have diabetes and have to eat 6 small meals a day so most of the time i live on diet shacks and milk & water . but we all take so many drugs i wonder some times if our body's realy know what is going on .

be safe every one



Hi Nicky, I've read some people have tried drugs like Ritalin to help with fatigue.Has anyone tried these types of drugs,if so any success?


The thinking on this is sound - I've checked it out.

I've tried to get some before - the formulation I was told to get by a behcets contact stateside was called "Concerta" - slow release ritalin apparently.

Even private GPs here in London cannot prescribe it - it's controlled. You need a hospital consultant to authorise.


Ive never heard of them will do a internet search and see what I come up with


Aren't they the drugs they give kids when they have ADHD ?


from the search I done yes but I did also read it can be taking for chronic fatigue I can seem to find the page again now when I do ill add it here

take care Nicky


its not the one i found yesterdaybut ill will keep looking answers.yahoo.com/question/...



Methylphenidate HCl (Ritalin) 10 mgx30 Tablet Red Rete drugs needed. Subject to control drugs used in children with ADHD. How to Behçet's disease while reducing the overall benefit?


Hi Nicky,

My daughter Jaida has BD & suffers badly with joint pain & fatigue. I find it so hard to explain to the doctors & here you all are describing her body perfectly.

Jaida is on Celebrex to help with body inflammation. But I'm sorry to tell you like all the others before me, sleep is the best. Listen to your body and get a wonderful sleep where possible.

All the best, Michelle


I just wanted to add to all this positive comment: when this happens to me, I forget to drink and get dehydrated, which affects my digestion. This means I feel like a slug even when I am awake, no thanks. My family have taken to leaving a jug of fluid on my night stand so that when I wake up for a bit, I am reminded to drink and it's easy to have as much as I like.

Go with it and make yourself the priority. You'll soon work out how much you can do before you need a sleep, then take it from there.


I am going to see my primary doctor tomorrow to finalize our several weeks' investigation and consideration of the possibility of adding either Provigil or Concerta to my regimen to try to help with the extreme fatigue. I read (on Daily Strength reviews, lots of them) that many M.S. and Fibromyalgia patients (to name a couple groups) are getting good results on Provigil. The efficacy seems to be somewhat variable, but I am encouraged that some are using it with success for the whole autoimmune pain-fatigue symptoms discussed in this post. There is less reviewed on Concerta for these conditions, but I suspect that is primarily because it may not be prescribed as much for them as it is not approved for treatment of autoimmune disease related fatigue in the U.S., just for things like Narcolepsy and ADD.

I have ADD, so it will be covered if we choose Concerta, however, I have been on Adderall in the past with no effect on the crushing fatigue I have struggled with for about 8 years now, so I'm more inclined to try something new and see how the Provigil works. Of course, ultimately, it will be my doctor's call, though she is very good about listening to input from me, as she knows I know my body, my history, and my disease best generally. We also got input from my psychiatrist who prescribed my ADD medications.

I had hoped the fatigue would improve when they diagnosed me and began treating me for adrenal insufficiency, and likely an autoimmune polyendocrine disorder (I take 2 separate thyroid meds, as well) but many days it is not much different. I take 30 mg hydrocortisone per day. I do have better motivation overall, but still really struggle to get up, stay awake, etc.

Anyway, wish me luck (& prayers for good choice tomorrow). Let me know if anyone has had success with either of these meds for the fatigue.


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