Anyone else haqve trouble sleeping?

[mikebonella]

I sure as hell do. Wondering if its common and why you think you cant sleep if you do have this problem.

[Jack]

I have no trouble at all in falling asleep, I can do it anywhere, anytime. The trouble is that I sleep for a maximum of 2 hours at a time due to the problem I have with coughing. I also tend to get up at around 5 in the morning for the same reason or some other problem.
My solution is that I grab a few minutes in a chair after everyone has left the house in the morning and then also have an hour laying on my bed after lunch.

[Sangye]

Are you on any pred, Mike? Even the smallest doses gave me insomnia.

After a life of never having a moment's difficulty sleeping (falling or staying asleep), insomnia was one of the first signs I had that something was wrong. Once the Wegs was diagnosed, the pred continued the insomnia, of course. In the past few months, the insomnia was creeping back, which was a sign to me that the Wegs was flaring. It's not a universal sign of active Wegs, though.

[mikebonella]

I have trouble falling asleep and once I do, I rarely get more than 5 hours unless I take a sleep aid (ambien). Im not sure how much of it is wg and how much of it is due to other stress in my life. Just curious if others had the same problem. I know that when I was on steroids, the sleeping was worse.

[Doug]

The older you get, the less sleep you get, primarily due to increased aches and pains. I don't know what aches and pains you have associated with WG (joint pain, cramps, breathing issues, etc.) but they alone can affect sleep quality and duration. Myself, knee aches (WG or non-WG ~ I don't know!) often thwart sleep. I recently read that people regarded to be in remission often have symptoms of an active flare. I believe it. I've often referred such pain to my doctor, but test results indicated I was still in remission. Go figure!

[mikebonella]

Yes, when the pain is bad, it definately affects sleep. For me, I just am not that tired at night though. Not in THAT much pain right now. My new doc said that just because the anca count is really low right now, that it doesnt necisarily mean that the disease isnt flaring.

[Luce]

I have trouble sleeping, I'm 25 and not in any pain from the Wegs.
I also don't stay asleep for more than 2-3 hours if I'm lucky and I put this down to an incredibly weakened bladder from the cyclophosphamide. I can go to the bathroom up to half a dozen times overnight and suffer a lot from cystitis-type feelings which can get really bad at times.

I also sleep really lightly which would normally frustrate me but it did mean that I actually heard the half-dressed, very drunk man that crawled through my front room window the other week! It was very warm overnight and we have a ground floor flat so left the window open - this guy saw it as an invitation to come in and take a nap on the couch!
My fiance was useless, he thought I was talking and fidgeting in my sleep as is quite normal for me and I thought we were being robbed. Not quite sure what came over me but I stormed into the front room and flicked the light on. A man in a t-shirt and underpants stared bleary eyed back at me and asked me what I was doing in his house!

That was a night to remember...

[Jack]

You should perhaps increase your fluid intake Luce. The weak bladder feeling is probably due to irritation from the cyclophosphamide and can be damaging. I used to have to go a couple of times a night when I was taking it and got so that I could almost sleep walk through it without waking.

[Sangye]

Okay Luce, I guess I shouldn't be laughing, but seeing as you're okay and he was a pretty benign character, I'm laughing myself silly.

On a not so funny subject, what do you mean by cystitis-type symptoms? You can email me about it if you like.

[Luce]

The intruder incident turned out to be hilarious as he wouldn't leave until we'd searched for his trousers, shoes, wallet and cellphone - none of which he'd come through the window with (at 2.30am I might add!). Luckily he was docile and had obviously got the wrong house, not sure how we'd have handled it if he'd been aggressive.

Thanks Jack, I was making myself drink about 2.5 litres of water a day when I was on the cyclo but as I've been on CellCept for about 6 weeks now I've relaxed that quite a bit.

The cysitis symptoms have been with me for months and it's pretty much frequent urination, pain after urination and a constant low-level uncomfortable feeling needing to urinate. I went to my GP after a horrendous incident overnight that left me running for the bathroom every 10 mins only to pass a miniscule amount, I drank 3.5 litres of water overnight to try and flush it through. GP tested a sample but it didn't show any blood and my renal doctors didn't seem too concerned.

Thanks for the offer of emailing you Sangye but I'm not shy, just hoping the lads don't mind too much!