Sharon T

Trouble Sleeping

18 posts in this topic

I'm having a lot of trouble sleeping these days. I'm sure its probably related to meds and/or the sclero, but I hate feeling so tired all the time. I've tried various over-the-counter remedies and the only one that seems to work consistently is benedryl, but that gives me really bad dry mouth, plus a groggy feeling in the morning (which takes a couple cups of coffee to dispel :closedeyes: ). Has anyone found a good cure for this (or even one that works relatively well)? I don't drink caffeine after 3 p.m., and only drink wine in moderation in the evening, and I try to exercise fairly regularly, but this lack of sleep is really starting to get to me! :emoticon-insomnia:


Sharon T.

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Sharon,

 

I too have problems sleeping, but I've narrowed "some" of the episodes down to the afternoon iced coffees (not really iced - room temperature. Can't handle cold stuff even in the heat.) Cutting caffeine off by 3 pm didn't work for me. I had to cut it off by noon, so you might try cutting your caffeine intake off earlier and see if that works. Also, exercising too late in the day can get me too hyper to sleep. I know how frustrating it is because it makes you so tired the next day, but I'm not willing to try sleep medication. I take enough meds as it is. A boring book works sometimes too. Hope you find something that works for you.


Janey Willis

ISN Support Specialist

(Retired) ISN Assistant Webmaster

(Retired) ISN News Director

(Retired) ISN Technical Writer for Training Manuals

International Scleroderma Network (ISN)

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Hi Sharon,

 

I feel for you! I know how hard it is to function with poor sleep, and I hope you find something soon to make your sleep more restorative.

 

I think the general recommendation is that if we have trouble sleeping for over two weeks straight, that we should see our doctor about it. There are so many possible causes, including simple things all the way to sleep disorders. Read up on how to get a good night's sleep first, and try some ideas.

 

Although alcohol seems to be relaxing, it can cause insomnia. You might want to first try containing caffeine and alcohol to before noon. Some of us can't tolerate caffeine at all, and admittedly it is bad for other symptoms too like reflux and Raynaud's. But giving up caffeine abruptly can also cause insomnia from withdrawal, so don't do anything really rash. I'm sure others will have tips regarding insomnia as well. I have about a thousand of them, so I'm going to either take back stage now or write a whole novel on the subject.


Warm Hugs,

 

Shelley Ensz

Founder and President

International Scleroderma Network (ISN)

Hotline and Donations: 1-800-564-7099

 

The most important thing in the world to know about scleroderma is sclero.org.

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Hi Sharon,

 

See the 'jammies' on my avatar? That's me being ready if, chance would be a good thing, I should get a good night's sleep~ Yawn, sorry, last night wasn't it. :blink:

 

Some other factors affecting sleep can be noise, light, irregular schedule, being hungry/having eaten too close to bedtime, um, let's see. Oh yes, room temperature, pillow, bedding, a bed buddy who snores/tosses/turns/steals the covers. The list seems endless.

 

I've had problems with this off and on. The worst and longest spell apparently was due to GERD. Once we got that controlled I slept great for the longest time. Then pain was doing it. That's better and I was sleeping better, but now I'm lucky to get two hours between waking episodes.

 

I've tried both over the counter and prescription medications (and had a nasty interaction between one of the sleep medications and another medication that left me absolutely befuddled for a couple of months) and either they don't work at all or the side effects have been more than a fitful night's sleep was worth. So tomorrow I go for a sleep study. Enough is enough. Yawnnnn~~~~ Sorry.

 

I think, no matter what the doctors say, that insomnia/poor sleep quality is a scleroderma 'thing.'

 

Here's hoping we all sleep well tonight.

 

Warm hugs,


Jeannie McClelland

(Retired) ISN Director of Support Services

(Retired) ISN Sclero Forums Manager

(Retired) ISN Blog Manager

(Retired) ISN Assistant News Guide

(Retired) ISN Artist

International Scleroderma Network

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Hi Sharon

I too have trouble sleeping. You should have gotten a PM about one I have tried that worked pretty well. The only other one that I have found to work is Benadryl. It's worth a try. Hope it helps - Cheers - Lisa


Life is NOT meant to be a struggle. Life is meant to be joyously abundant.

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I am a very good sleeper. I like to sleep and I can sleep long. But in certain periods of the year I wake up every night regularly at 3, 4 or 5 o clock in the morning and cannot sleep any more no matter how I try. This is a sign for me to take a prescription anti-anxiety medication before first sleep (not when I wake up but in the evening). I do so for few days and then stop. This guarantees me that I will not wake up and stops the unpleasant episodes.

 

Wishing you good sleep!

 

Erika

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Nowadays I wake up every couple of hours when I sleep and it's either because of breakthrough pain or needing to use the bathroom. Having interstitial cystitis and a small bladder I am used to waking throughout the night. Thankfully I am able to go back to sleep though! :emoticons-yes:

 

Take care.


Amanda Thorpe

ISN Sclero Forums Senior Support Specialist

ISN Video Presentations Manager

ISN Blogger

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist

International Scleroderma Network (ISN)

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I almost hate to say this because it makes me sound like a fruitcake- even more so than normal. But I went through a period where, if I sat down in the afternoon, I fell asleep. I would be so tired that I would go to bed, turn off the lights and immediately be wide awake. Turn on the lights and read, feel sleepy, turn off the light and bam- wide awake again.

Finally I found if I kept the lights on all night, I slept much better. (I know, I know, really really weird)

It all changed when I started taking large amounts of Vitamin D per my doctor. I found I did not want to sleep during the day and could sleep at night.

Well, unless there is a group of people who have had this problem and have feared to tell anyone, I felt I was unique (realllllly unique) and never really asked the doctor about it. So I only mention it now out of fellowship for those on this board- plus the guys in the white coats don't know where to get me.

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Well, it's 12:30 a.m. and I'm on the computer because I was just laying in bed. I know it's a combination of meds and iced coffee. I wake up exhausted in the a.m. because I am up so much with my kidney. But this is better than sleeping all the time like I did on dialysis. I took sleep medication for a while, and sometimes take anti-anxiety meeds before I go to bed but I still take a while to fall asleep. I have more energy now than I did before but wish I could sleep like my husband. He lays down and is out in seconds!

 

miocean


ISN Artist

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I had the sleep study last night. They had me take a sleeping pill at 9pm. At 11:30 I was still wide awake, so they had me take another. Dozed off and on, drank a litre of water, and got kicked out at 5am! Sheesh~ Came home and spent the morning asleep on the couch with the contractors who are remodeling the bathroom working away and carrying rubble out and boards in. Yeah, slept like a proverbial baby. Perverse, is all I can say!


Jeannie McClelland

(Retired) ISN Director of Support Services

(Retired) ISN Sclero Forums Manager

(Retired) ISN Blog Manager

(Retired) ISN Assistant News Guide

(Retired) ISN Artist

International Scleroderma Network

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At least it sounds like you had a decent sleep at last, Jeannie; even if it was throughout the morning and not actually at night!! :D

 

I also find alcohol and coffee upset my sleep patterns; even before Sclero I've always been disgustingly bright and breezy in the mornings but not much of a one for late nights (I'm talking 9pm here!! ;))

 

I find it particularly infuriating that I tend to fall asleep in front of my favourite television programmes (like 'Midsomer Murders'; I've lost count of the number of times I've missed the end!! :rolleyes: ) and yet I can go up to bed and be tossing and turning, unable to sleep!! :angry:


Jo Frowde

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

International Scleroderma Network (ISN)

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Hi all,

 

I once fell asleep on a couch at a friends 40th birthday party while it was in full swing, much to my embarrassment, so how does that work! I guess we sclerodermians are a very odd and unique bunch, we go blue in summer and fall asleep at the most............snore lol!!!!

 

Take care

 

Sandy B

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I used to be exhausted and yawning all the time. Turned out that I was waking up fully probably about every half hour all night long because of reflux. And I had constant nightmares that I was suffocating, probably when I was aspirating in my sleep. I had the head of my bed flat and wasn't on any reflux meds at all. When those things got fixed, I started sleeping a whole lot better.

 

Hugs,

 

warmheart

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My sleep has improved greatly since starting amytriptylene 10 mg. at night. It sort of makes me numb and I don't have the aching that used to keep me up.I also get into REM sleep and dream more. Some nights it's not enough and I take a NSAID also and this seems to help, for now. For me it was pain that was preventing me from sleeping well.

A friend of mine with scleroderma also told me how to place my pillows and wedge properly so night time reflux is not as bad as it used to be. :thank-you:

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