There's nothin worse than going to bed and rolling around for hours!

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okie
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Date Joined Dec 2006
Total Posts : 2818
   Posted 9/14/2008 12:31 AM (GMT -7)   
smurf  I got my sleeping cap on and my eyes won't close. I hate these nights. Well actually I don't hate the nights so much as I hate the next day. Plus I got that stupid puffy look in my face again. I gotta try to lay off the soda's even if they are caffeine free and lay off the salts. Anyone know of a decent salt substitute that actually tastes good? I notice I have to go pee often but when I get in there I usually just piddle a little bit. Kidney's don't seem to be bothering me. no bladder infection that I'm aware of. I was a total witch today. I snapped at everyone. I'm not usually like that except on massive doses of stroids! skull I think the bloating is causing my pants to be tight more so than weight gain. But God knows I need to lose some weight. If I weight long enough I can just wear bulky sweaters though yeah . Just kidding than I'd really be in a world of hurt.
well I guess I'll go jump up and down on my bed. After all it's only 2:30 in the morning!
hugs
 
Possible scleroderma.  stage 4 COPD,  Osteoporosis,osteoarthritis
Prednisone,plaquanil400mg,azythromyacin,vicodin 4x5mg,Evista60mg, Effexor 150mg,Xanax 1.0 x3,Singular,nitro spray, spirivia,aciphex,lasix,inderal,pot.chlor.,B12 
 Did you ever know that your my hero?
 
 


AlwaysRosie
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Date Joined Jan 2005
Total Posts : 8616
   Posted 9/14/2008 2:17 AM (GMT -7)   
Hey Carol . . .

I'm right here with you! I won't lay in bed and get frustrated. I'm checking out my email and the board and then will knit a little and try to sleep again. I've been trying to 'make friends' with the l-o-n-g nights.

The need for salt and sugar decreases after you stop using them for a while. Some people (my daughter) does a drastic detox diet that eliminates that kind of stuff for a few days and then food tastes more naturally sweet and salty again.

Sending you some sleepy dust!!

Blessings!

In His Grip

AlwaysRosie           "We can't control the waves, but we can learn how to surf!!"

Psalms 139

Co-Moderator - Lupus Forum

UCTD, Inflammatory Arthritis, Diverticulosis, (recent dx - Sjogrens, Crohn’s 4/08)

Clickable Links:  Lupus Resources    Lupous.Org   Lupus Criteria (4 of 11)   Lupus Chapter Locator


puccini914
Regular Member


Date Joined Jun 2008
Total Posts : 363
   Posted 9/14/2008 7:47 AM (GMT -7)   
I have to say it again. Ambien is my best friend!!!!! I take and I fall asleep and I don't wake up feeling drugged or dopey. It has made a huge difference in my life, being able to actually sleep regardless of what's in my head or how my body feels has been great. I even feel as though I've gotten more restful sleep. Best of luck to you and God Bless.

Jennifer

Diagnostic Limbo: Seeing Rheumy since November 07, Taking plaquenil, Cymbalta, Flexeril,Claritin, Zantac,Ambien, vitamin D, Darvocet.

 

 


PattyLatty
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Date Joined Mar 2006
Total Posts : 2570
   Posted 9/14/2008 8:18 AM (GMT -7)   
shakehead shakehead shakehead Carol shakehead shakehead shakehead I'm so sorry you're having problems with insomnia. There's just nothing worse for your emotional or physical health. I remember well how awful I felt when I was up all night when my prednisone dose was real high. I felt so bad during the day, was tired and cranky and felt worse than I did when I was able to sleep. I agree with Jennifer about sleep aids. Once I started taking Lunesta (similar to Ambien) I started sleeping like a baby, woke up without a hangover, and felt so much better. I'd call my doctor tomorrow if I were you Carol, and ask for a script for a sleep aid.

You have so much on your mind, so many worries, so many unknowns related to your health, that it's no surprise that you're tossing and turning at night. I hope your doctor will help you.

Let's hope that by Monday night you'll be sleeping tight and having sweet dreams. smurf smurf smurf

Here's some more of that smurf smurf smurf sleepy dust smurf smurf smurf Rosie sent you.

Love ya,

Pat
Lupus, osteoarthritis, fibro, renauds, restless leg, hiatal hernia, double vision, migraines, costocondritis.
cellcept, neurontin, prednisone, plaquenil, synthroid, triamterene, tramadol, actonel, tri-est, imitrex, cymbalta, tricor, acifex, multivitamin, calcium w vit D, fish oil, aspirin


hippimom2
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Date Joined Jul 2005
Total Posts : 5403
   Posted 9/14/2008 9:37 AM (GMT -7)   
I agree with Pat about asking for a sleep aid, especially with all that you have going on right now. I also hate that feeling of insomnia and being up in the middle of the night knowing how exhausted you are going to be the next day. I was exhausted all day yesterday, but when I went up to bed, all of a sudden my mind was wide awake and wouldn't shut down.

I hope you were able to get some sleep. (((((hugs))))
Diagnosis:  UCTD (lupus) 2006; Raynauds 2006; Sjogren's 2006; lupus symptoms began 2003; UC 2008; CFS 1991; Mono 1985
Meds:  Plaquenil 400mg; Prednisone 5-10mg; Tramadol 100mg 3-4x daily; Doxepin 25-50mg; Prevacid; Evoxac; Steriod Cream and Mouth Rinse for tongue and mouth ulcers; Hydrocodone 5/500 prn for severe pain; Artificial tears

 

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MJLD
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Date Joined Jul 2007
Total Posts : 1048
   Posted 9/14/2008 10:51 AM (GMT -7)   
Okie,
I'm so sorry you're not sleeping. Check with your doc before you choose a salt substitute especially if you have electrolyte imbalances, particularly potassium. In my (humble) opininon it's better to just cut back on salt than to add a substitute. I'm struggling with these very same issues (salt and caffeine!) I'm an addict. I hope you get some rest. Love ya, Judy

MJLD
Veteran Member


Date Joined Jul 2007
Total Posts : 1048
   Posted 9/14/2008 10:52 AM (GMT -7)   
Addendum,
Hey! If you want to have a "puffy face" contest, come one over! I know this is one contest I can win hands down!!! :) Judy

cured4real?
Veteran Member


Date Joined Dec 2005
Total Posts : 1944
   Posted 9/14/2008 4:28 PM (GMT -7)   
Carol,
I have tried everything short of anesthesia. There is one thing that works for me everytime. Listening to a monotonous voice read something, like a book on tape with a monotous or soothing reader or listening to a book on my pc in microsoft word having Microsoft Word reader read it back to me. Its part of Microsoft word or you can download Deskbot for free from Belcraft Technologies and just google Deskbot from Belcraft. You can even pick your own characters. It works like the microsoft agent. It reads very monotonously and it will send me into slumber every time. It reads any type of word or text file or whatever. And its totally free.

Microsoft word comes with a reader.

Now if you can find a free ezine on the web that you like the stories from, just cut and paste into word, go into the tools menu and open the Speech tools. The reader is part of the speech tools. Or with Deskbot, you just install him and start him and you'll figure it out. YOu can email me if you are interested in this. It saves a trip to the library and puts me to sleep every time.

I hope you are getting some relief. Sorry so long, my brain is messed up. Need to stop posting for a while because of my brain being mesed up.
Love, Marji
--Sometimes I think the surest sign that intelligent life exists elsewhere in the universe is that none of it has tried to contact us. Bill Watterson (1958-) cartoonist "Calvin and Hobbes"
Ills--Sjogrens-Lupus-like AI Disease, Hashis, Vitiligo, spinal stenosis/fusion with plate, salivary/lymphectomies, Diabetes, NAFLD, COPD, RLS, neuropathy, trigonitis, hystero, diffuse brain atrophy, GI nightmare
Meds--Plaquenil, Evoxac, Metformin, Synthroid, HCTZ, Estradiol patch, Prosed, Detrol, Klonopin, Ultram, Vicodin, Restasis, Albuterol, steroid injections and pred prn


Tá mé breá
Regular Member


Date Joined Aug 2008
Total Posts : 140
   Posted 9/14/2008 6:46 PM (GMT -7)   
I use lemon juice on things to add a tang kind of flavor in lieu of salt. also I was on Trazadone at one time and man did I sleep like a baby! it was the only med covered on my insurance that had a "side effect" of making me drowsy.
43 yr old mother of 6 grandmother of 1 going on 2!
dx 2006 - autoimmune issues, arthritis, 01/2008 - myelofibrosis. as of 08/08 testing continues signs point to Lupus. (family history - mother RA/Lupus).

symptoms - malar rash, mouth soars (in and out), joint pain, extreme fatigue, migraines, heart pounding on light activity.

rx-cymbalta, propranolol, clonazapam, prednisone, progesterone cream, supplements - b6, b12, flaxseed oil, c.

"All we have to decide, is what to do with the time we are given" ~ Gandalf


Ginny
Veteran Member


Date Joined Feb 2003
Total Posts : 5514
   Posted 9/14/2008 7:52 PM (GMT -7)   
Hi Carol.  How's the sleep lately???  When I have episodes of insomnia, I resort to crying. It's all I can do. LOL.  No, actually, I go up a bit on my Amitriptyline.  I was on 20mg 2 weeks ago and couldn't sleep for days.  So my rheumy upped it to 30mg (still a very low dose), and now I'm sleeping like a baby.
 
Have you ever tried Amitriptyline (Elavil)?  It works wonders for Fibro pain as well. For a lot of people anyway.
 
I hope tonight is better for you.
 
Hugs,
Ginny
I can do anything through Jesus Christ who strengthens me. I have learned in whatever state I am in,to be content. Phillipians 4:11-13

34 years old. Diagnosed with lupus in 2000. Fibromyalgia, anti-phospholipid syndrome(APS)(stroke),Sjogren's, Raynaud's, seizure disorder-(miraclulously disappeared!), Libman Sach's Endocarditis, vasculitis, sacroiliitis, arthritis (neck) . Prednisone, Imuran, Coumadin, Clobazam, Amitriptyline, didrocal, Cozaar, Tramacet, calcium, Cykolokapron, multi-vitamin, vitamin D, Magnesium, vitamin B6, Acidophilus


okie
Veteran Member


Date Joined Dec 2006
Total Posts : 2818
   Posted 9/15/2008 7:56 AM (GMT -7)   
Hi everyone, I want to thank you all for your ideas and thoughts and prayers. I want to respond to all of them and I promise I will. Right now I'm just having a hard time. I can only take a partial breath because it hurts my lungs so bad to take a regular breath. I didn't want you all to think I didn't appreciate you taking time for me. When I get feeling up to it I will let you know how I do with your ideas on sleeping and the salt and seeing the doctor.
love ya all carol
 
Possible scleroderma.  stage 4 COPD,  Osteoporosis,osteoarthritis
Prednisone,plaquanil400mg,azythromyacin,vicodin 4x5mg,Evista60mg, Effexor 150mg,Xanax 1.0 x3,Singular,nitro spray, spirivia,aciphex,lasix,inderal,pot.chlor.,B12 
 Did you ever know that your my hero?
 
 


AlwaysRosie
Veteran Member


Date Joined Jan 2005
Total Posts : 8616
   Posted 9/15/2008 8:22 AM (GMT -7)   
((((((((( Carol ))))))))

Hugs, prayers, and . . . .

Blessings!

In His Grip

AlwaysRosie           "We can't control the waves, but we can learn how to surf!!"

Psalms 139

Co-Moderator - Lupus Forum

UCTD, Inflammatory Arthritis, Diverticulosis, (recent dx - Sjogrens, Crohn’s 4/08)

Clickable Links:  Lupus Resources    Lupous.Org   Lupus Criteria (4 of 11)   Lupus Chapter Locator


Serina
Regular Member


Date Joined Aug 2008
Total Posts : 431
   Posted 9/16/2008 5:25 AM (GMT -7)   

I have the sleep problem too, but assumed it was in my head.  but after making my own subject about this in a different dialog, I found out I am not the only one.

I remember my doctor who diagnosed me with Lupus in 1996, gave me elavil.  I assumed it was for a psychotic break, and I knew I was not crazy, just unable to sleep.  My father was paranoid schizophrenic, and he was on Elavil at different times.  I was assuming that the doctor was thinking I was schizoid, a mental thing, instead of it being Lupus. 

I know your feeling however of sleepless nights, and exhausted and irritable the next day.  Luckily for me a young woman on another list was able to identify a cycle for me.  Said that about the fourth of the month, I went into these good mental states, and around the 14, or 15, I no longer had them, for another period during the month. 

The times that I can't sleep, my brain fog leaves me and I can think well, and remember things better.  i assumed it was mental.  so glad to know that it isn't.  It is easier to accept knowing that it isn't in my head.

Thank you all for being just as you are.

Hester


Lupus diagnosed 1996, Heart by-pass 1998, breast cancer 2000, stroke2002, vascular surgery 2005, heart attack in 2007, and had a stint put in, Sjogren's Syndrome 2008
 
******
aspirin daily, multivitamin daily, Arthrotec 50mg twice daily, Meclazine 25 mg, as needed 4x daily, Hydoxychloroquine (plaquinil) 200mg twice a day, Metoclopomide 10 mg, 4x daily, Doxepin 50 mg one cap 4x day, Metoprolol 100 mg daily, Levothyroxine (synthroid) 50 daily, Amlodipine 5mg daily, Crestor 10 mg one tab daily, Lisinopril 40 mg, one tab daily, Omeprazole (prilosec) 40 mg daily, Plavix 75mg daily, promethazine 25mg x4 daily, Restasis one drop in each eye every 12 hours
 


PattyLatty
Veteran Member


Date Joined Mar 2006
Total Posts : 2570
   Posted 9/16/2008 10:05 AM (GMT -7)   
sad Carol, I hope if you're still having so much trouble breathing that you'll call your doctor right away. You sound worse than I've ever heard you. There's no need to suffer alone, Carol.

((((((Love and Hugs))))))

Pat
Lupus, osteoarthritis, fibro, renauds, restless leg, hiatal hernia, double vision, migraines, costocondritis.
cellcept, neurontin, prednisone, plaquenil, synthroid, triamterene, tramadol, actonel, tri-est, imitrex, cymbalta, tricor, acifex, multivitamin, calcium w vit D, fish oil, aspirin

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