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Biomarker for Diffuse Scleroderma skin has been discovered!


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#1 Sam

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Posted 10 April 2008 - 11:11 PM

Well for a while now I haven't been sleeping that good at night. I'm so tired and all I do is toss and turn, my legs feels like they need to stretch or something. My body aches all over.. My knees even hurt while I am sleeping well trying too. I have tried taking warm baths and massage my body before I go to sleep. I even have taken some pain pills or muscle relaxer and it doesn't help.

I'm not really sure of what is going on.. I do need to call my family doctor and chat with him.. I haven't taken my naps during the day either just can't get comfortable and I still toss and turn, I was hoping if I didn't take nap I would be so exhausted and fall asleep and sleep all night. But nope no way..

So if anyone has any great suggestions let me hear them please!!!

Sam
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#2 CFMBabs

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Posted 11 April 2008 - 02:49 AM

Oh my! Read my blog and you will see that this problem is endemic I'm sure!
I really have no answers for you sweetheart, only that if you are able to relax and drink a hot milky drink before bedtime, it may help?

As for the leg problem, well! I tend to get more of a problem with my back and I'm sure it's something to do with sleeping in an elevated position due to reflux problems. Can I ask if you wear bed socks? I'm asking that because it may have something to do with your circulation. Perhaps if you wear flight or support stockings during the night It may also help. Also try bending your knees and straightening them as a sort of excercise before bedtime.

I'm sorry that I can't help you more and I sincerely hope that you manage to fix the problem!

By the way, has anyone got a cure for a hubby that snores? (Besides divorcing him)

Best wishes to you darling

Barbara xx

#3 Karenlee

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Posted 11 April 2008 - 04:13 AM

Sam,

I feel for you, there is nothing worse than being wide awake all night.
I tend to get very stiff and have trouble getting comfortable. A heating pad on my lower back usually feels nice but does not un-hinge my spine.
One Xanax and one 3 mg Lunesta later, I can usually fall asleep. I hope your doctor can give you something to help you. Good sleep is crucial for heath.

Barbara you crack me up! Lol :P Mine snores, so I poke him in the back relentlessly thru out the night. Poor guy. Also, he seems to snore less when he's on his side and using one pillow instead of two.

#4 Guest_SADIE_*

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Posted 11 April 2008 - 04:40 AM

Sam, I'm so sorry you haven't been sleeping well. I wish I knew what to tell you. Glad to hear you are going to see your Dr. Hang in there Girl!
Sadie

#5 TJ903

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Posted 11 April 2008 - 06:47 AM

Let me join in the fray - getting in a comfortable sleeping position is impossible! Is this like 'restless leg syndrom'? My legs bother me as well - sometimes I'll wrap a heating pad around them and that will 'calm' them. Doesn't always work tho' and then I try to stretch them. My legs, arms, and back are impossible to straighten out so I'm restricted to laying on my sides and just try touch to bottom of the bed.

Barbara - my hubby snores with the best of them and short of smackin' him (takes too long to turn so I can reach him) - I wear ear plugs! Sometimes that doesn't work but we do what we can. I've promised not to use the pillow so I get out of bed walk to the fridge, get a glass of milk, watch tv, play with the cats, talk to myself, read to myself, cry to myself and then by the time my hubby gets up for work - bingo! I'm ready for sleep. :blink:

Have you talked with your dr. yet? Ask for samples - mine gave me some of the popular sleep aids, but I find that they don't really work as well as a pain pill and a xanax type pill. Plus getting samples will save $$ especially if they don't work.

Good luck and let us know if you find a solution. We can always use another one here. That's one of the great things about this forum- we learn so much and get so much support and laugh when we don't expect to!

#6 truman

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Posted 11 April 2008 - 07:13 AM

Sam:

I find that sometimes sleeping in a different room or venue (sofa instead of bed) gets a little sleep in. I generally catch cat naps of 1-3 hours, up 4, sleep 1, up 2. I know how you feel.

Only saving grace in all of this is while out of work, I don't have to worry about it the next day.

Between the sleep, pain, bowel problems, etc., going to work was definitely a crucial determent to any healing.

I find comedies late at night help greatly. I especially love when Will and Grace and Roseanne are on during my night excursions.

Sleep tight tonight.......
Tru

It is what it is...........

#7 KarenL

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Posted 11 April 2008 - 07:40 AM

I feel so bad for you, lack of sleep is the worst! My hubby has sleep apnea and restless leg syndrome. In August he started using a CPAP machine and it's helped somewhat, although that comes with it's own set of issues!

For the restless leg syndrome, try taking magnesium at bedtime. With all the various pains we have it's no wonder this is such an issue. Oh and RLS is also involved in Fibromyalgia. Good luck sweetie, try try try not to think too hard about it, because that only makes it worse. I know, easier said than done...

Peace,
Karen

#8 mando621

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Posted 11 April 2008 - 11:17 AM

This sounds soooo familiar! I have the same problem. Compounded now because my shoulder surgery pain is causing problems finding any comfortable position in bed. I end up in the recliner then the cat keeps me awake.

Snoring husband here too. I also wear ear plugs. It sure does help most nights. I hate it when one falls out, because I usually wake up and then have to go through the whole getting back to sleep again.

My sister-in-law and brother-in-law divorsed. Snoring was a big issue for them and they ended up sleeping in separate bedrooms.

I get the leg restlessness in the evenings before going to bed, but once I'm in bed it isn't bad. I've been supposedly diagnosed with FM.

#9 smac0719

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Posted 11 April 2008 - 01:19 PM

I often have problems sleeping due to achiness and the soreness of the fibromyalgia. Tylenol PM does the trick for me.
I may have Scleroderma, but Scleroderma doesn't have me!

#10 Sam

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Posted 11 April 2008 - 01:57 PM

Well the doctor called in trazodone for me, we will see if it works or not.. I am so tired and sore all over.. I did go see the chiro practor today it helped some but not like it usually does.

He asked me to come back on monday and wants to take more xrays of my spine. We do know I have OA and a pinched nerve or something like that. I told him I did not want to go back to the pain doctor I dont want anymore steroid anything.

Has anyone experience knee pain with pain in your legs but its a different kind of pain then what your having in your legs?

Barb I dont have that problem its usually me and the dogs that snores.. I also did try drinking warm milk the other night it didn't help. thanks for the advice.

Thank yu for all that responded. Sam
Sam

#11 summer

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Posted 11 April 2008 - 03:03 PM

Hi Sam,

What about an electric blanket on your bed?. I have mine on for a hour or so before I go to bed and then switch it off before I sleep.
This has helped with aches and pains and the warmth lulls me off to sleep.
I also take 50mg amitriptyine for antidepressants/fibromyalgia. Amitriptyline/Endep also promotes deep sleep. I was also having problems sleeping, I never got into that deep sleep that we need to wake up feeling refreshed. I have been on Amitriptyline now for 9 months, and am now waking up in the morning feeling better.

Take care
Celia

#12 smac0719

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Posted 11 April 2008 - 03:40 PM

I didn't have a good experience with trazadone. I hope it works better for you.
I may have Scleroderma, but Scleroderma doesn't have me!

#13 barefut

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Posted 11 April 2008 - 03:56 PM

Oh Sam.......I could have written your post! I fall asleep okay - exhausted! But I wake up in the night with restless legs and restless brain and aching hips and shoulders and can't get back to sleep for sometimes hours.

I feel your frustration. I have tried everything from warm milk to warm shower, to just getting up and doing some housework or visiting ISN. When I am desparate, I will take an acetaminaphen PM but I don't like to do that because I wake up groggy.

I am glad you have asked this question for "us" Thank you. Hope "we" can find some miracle very soon - feeling like a zombie sometimes! :blink:

Hang in there - I'll be thinking about ya,

#14 Sam

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Posted 12 April 2008 - 05:10 AM

Well I had slept all night and had a really weird dream.. actually it was a bad dream.. But I'm happy I got some sleep finally. I took it at 7:00 and went to bed at 9:00 turned on some music and went to bed... I can't tel you when I fell asleep I'm just happy that it worked. I had slept 12 hours. Much needed now I'm having problems with a stuffy nose and headache.. took my meds and hope I will feel better soon, my granddaughter Alexia will be here and she is non stop playing and getting into things. My daughter called and said she will be stopping by too. Well I'm gonna go take care and thanks for the advice.. Sam
Sam

#15 Sweet

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Posted 12 April 2008 - 07:06 AM

Hey Sam,

I'm so happy you were finally able to get some sleep. I know how hard it is to live on only a couple hours each night. It affects everything!

It isn't uncommon to have strange/nightmares etc when on sleeping pills.

*hugs*
Warm and gentle hugs,

Pamela
ISN Support Specialist
International Scleroderma Network (ISN)

#16 Sam

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Posted 13 April 2008 - 11:03 AM

Yes when taking trazadone you can have night mares.. Believe me it was a night mare I had but like I said I got some sleep. I slept good last night too no night mare though YAY!!!
Sam

#17 Guest_SADIE_*

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Posted 13 April 2008 - 11:57 AM

Sam, I'm so glad you got a good night of sleep! That always helps alot! I hope the nightmares soon stop.
Sadie

#18 smac0719

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Posted 13 April 2008 - 03:22 PM

I didn't want to mention the nightmares earlier as I wasn't sure if it was just me or a common side affect. I also had bad hallucinations too. Became too much for me to handle. I hope that yours don't get that bad.
I may have Scleroderma, but Scleroderma doesn't have me!

#19 Kaycee

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Posted 14 April 2008 - 07:13 AM

Sam,

I am so sorry you are having trouble sleeping and now the nightmares. Here's hoping everything calms down and you are able to get some rest. I'm getting ready to get into a hot tub to try to ease some of this achiness I've had for the past few days. Then into a terry cloth warm-up suit and just vegging the rest of the day. Have already done my housework for the day and am having rigatoni with marinara sauce for dinner so I'm set. Will chat later.
Much love,

Kim


Be yourself...everyone else is taken.

#20 Sheryl

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Posted 14 April 2008 - 09:48 AM

Kaycee, Rigatoni and marinara sauce yum! You must not have any problems with heartburn or indigestion of any kind. You know how to hurt a gal or guy. Sounds fabulous. Oh! She even got her housework done. I feel bad. I haven’t done a thing in a couple days. I take that back. I am making the rice pudding recipe that Tru has in our sclero kitchen. It is looking yummy, and tasting a spoonful of it I think it is going to be great! I didn’t put as much milk as the recipe calls for, since I need milk for tomorrow, and I added extra rice since I love thick pudding and lots of rice. It was done simmering in less than 30 minutes. I am waiting for it to cool to add the cool whip. This is the first time I ever bought cool whip. I usually make whipping cream out of heavy cream and some sugar. Now, am I making everyone as hungry as Kaycee has made me. Who else is having anything great for dinner? We are having MustGo tonight. Something everyone enjoys. I get the green beans, hubby gets the corn on the cob, we split the roast beef for sandwiches and then I just throw together whatever salad fixings that are in the refrigerator. Everything must go. I want to go grocery shopping for new choices tomorrow. Desert Rice Pudding. I’ll be thinking of you Tru, while I am enjoying your slightly altered recipe tonight.

Sam, sleep great tonight. Think of delicious food. Well that could give us nightmares. Think relaxed. Think pain free. Think about Warmth and Love. Write us if you are awake into the wee hours. Someone is on here just about all the time.
Strength and Warmth,
Sheryl

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