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Does anyone else suffer from severe insomnia? Is this is a symptom of Scleroderma?

 

Thanks for listening!!!

 

Lori Ann

 

Dx: Diffuse Systemic Scleroderma


Lori Ann

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I do suffer from insomnia. I don't know if you could say it is a specific symptom of scleroderma, but it certainly seems to be prevalent among members of the forum. Here is a page on the site discussing Sleep and AutoImmunity. Changes in sleep patterns may be related to sleep apnea, GERD and side effects from some of the drugs we are taking.


Warm wishes,

Jefa

 

Carrie Maddoux

(Retired)ISN Sclero Forums Support Specialist

(Retired)ISN Sclero Forums UK Chat Host

International Scleroderma Network (ISN)

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Nan, I just started Amitriptyline and slept about 18 hours the first day. What a difference. Thanks for the information. My doctor didn't think it had anything to do with the sclero, but I never had this problem before the sclero.


Lori Ann

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Yeah my sleep is all wacked out. I use to be able to sleep anytime anywhere. Now, I take Melatonin to sleep. It makes me pass out but I'm not sure if it makes me more sleepy.

 

peanut


You can deprive the body but the soul needs chocolate

my HMO makes me wear a helmet...

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Hi there LoriAnne~

My hand is raised too...unfortunatly I have it too. My doctor wants to do a sleep apnea test to see if that is the cause for the extreem "hit by a truck" feeling in the morning, but I keep fighting it and telling him that I just can't sleep. Over the years it gets easier....but not the getting up in the morning!

 

Maybe some of these medications that others have listed might be worth talking to the doctor about.

 

Sweet dreams...


*WestCoast*

 

********

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I too have horrible insomnia; have had it for years. I have always believed it to be related to whatever wacky autoimmune thing I have going on, but it's been very hard to convince doctors of it until the one I got in February (who finally ran all the ANA tests). I used to take Ambien, until one morning my husband asked how long it took me to get our daughter back to sleep after I gave her the ibuprofen, and I had no memory of this event at all. Scared me to death. But the ambien, while putting me to sleep, didn't help me feel any better--it's like the quality of my sleep was still very poor. My new doctor prescribed Lunesta, but it barely touches the insomnia. I've tried everything, and sometimes I feel like the sleeplessness is the absolute worst thing about autoimmune problems. I wake up multiple times per night and I also have absolutely horrendous night sweats. I know my spinal arthritis is much, much worse during those times when my sleep is at its worst, and like WestCoast said, I wake up feeling as if a truck hit me. My husband, who sleeps like a log wherever and whenever and wakes up feeling refreshed, just has no concept. He gets mad at me because I'm not raring to go in the morning.

 

ErinF

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Yep, not being able to sleep is a pain. I currently take .5mg of clonazepam and 10 mg cyclobenzaprine. I usually go to sleep pretty fast, but it is the staying asleep that is my problem. If I get 6 hours at a wack, I feel really lucky. Usually after 2-4 hrs, and then I am up for a couple of hours, then back to sleep for a bit before it is time to get up. OR, I might not sleep for a couple of nights, then finally pass out from sheer exhaustion. :blink:

I have taken ambien but don't like the side-effects, it makes me have nightmares. I also took Lunesta, which helped some, but then my insurance changed and I don't want to have to pay the high co-pay for something that sorta works.

This has been going on for over 25 years now. When my kids were little, they all got their names cross-stitched with very detailed care bears. Now, I can't see that good. B) Usually I am surfing the web or playing endless computer games. I know the 'hit by a truck feeling' in the am and my hubby sounds like the truck in the pm. lol

Sweet dreams, everyone!

~whirlway

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I too have had trouble sleeping due to all my aches and pains - can't sleep on sides because of hips, can't sleep on stomach because of back....now just sleep in recliner because of reflux.

 

Tired Ami years and years ago but could not function at all - TOO sleepy.

 

I started taking warm baths and stretching before I went to sleep - helped a little - also take a Tylenol PM or two now and then.

 

I wait until I'm SO tired I fall asleep easily but my problem is waking up at 2 - 3 am and not getting back to sleep!

 

I can sympathize....

 

Hope you find something to help soon.

 

I never considered apnea as a possible cause withme. Hmmm.

 

 

Good Luck,

Barefut


Take care,

Barefut

 

Serena Justis

ISN Blogger

International Scleroderma Network (ISN)

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Thank you everyone for all the information. I thought maybe I was crazy, because I to use to be able to fall asleep anytime anywhere. I can fall asleep when I am tired but I can't stay asleep. Use to take tylenol Pm but it doesn't seem to help anymore. The Amitriptyline I am taking now seems to be working, I feel so much more rested.

 

Hope you can all find something that works for you.

 

Thanks for listening.

 

Lori Ann


Lori Ann

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Lori Ann

 

 

Count me in - just thought it was because I worry so much. Now after reading all of these posts I'm beginning to think that it is just part of the sclero. I just toss and turn all night trying to get to a position that doesn't hurt or go numb.

 

I'm going to ask my doctor about this amytriptoline (sp?) maybe it will help me.

Good luck gettin' some z's!

 

You are in my thoughts!

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ME TOO!!!

 

I have had it for years and it is awful. I was on Amitriptyline too but was causing me heart problems so I had to come off of it. Now I am on Ambien and it is great. I sleep so well..... most of the time. :)

 

Hugs,

Lisa


Lisa Bulman

(Retired) ISN/SCTC List Coordinator

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Assistant News Guide

(Retired) ISN Fundraiser

International Scleroderma Network (ISN)

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I tried AmbienCR. I slept well but I was so ferocious in the morning. Grr... I had to quit taking.

 

 

Hope you find something that works,

 

peanut


You can deprive the body but the soul needs chocolate

my HMO makes me wear a helmet...

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I have tried several medications: Ambien, Lunesta, Rizorem, Sonata, and Temazepam. Only one I found to be working for me is 30mg of Temazepam, but it causes such a heavy drowsiness in the morning. If I take 15 mg, I won't get sleep at all. I have gone through up to 3 nights without any sleep many times, and finally I gave in and take 30 mg of Temazepam.

 

Kamlesh


Kind regards,

 

Kamlesh

 

 

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Oh Goodness, ME ME ME!!!

 

I had it long before I had sclero, but it definitely is worse now due to pain and tachycardia for me.

 

The following are what I take off and on - or have tried.

Benadryl 50 mg.

Ambien

Ambien CR

Lunesta

Sonata

Rozerem

 

Sometimes one will work, sometimes not. Frankly the over the counter benadryl works the best. Trying to get enough sleep is my number one worry and priority.

 

I've done and do Yoga, meditation, deep breathing exercisers, warm baths, herbs, teas, you name it. It's a nightly struggle for me.

 

Really sorry you are having this problem, it absolutely exacerbates everything else I know.


Warm and gentle hugs,

 

Pamela

ISN Support Specialist

International Scleroderma Network (ISN)

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