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Veteran Member

Date Joined Jul 2008
Total Posts : 1560
   Posted 2/24/2010 4:24 AM (GMT -6)   
UGGGGG!!! I hate being awake so early in the morning!  Pain is intense and I am laying here crying cause it hurts so bad.  I just want to shrink into my "perfect world" that my pain psychologist help me create and forget everything that is around me for awhile.  In that world I have no pain....no messed up dentures that have to be fixed....no clock ticking the time away.....no fear of waking hubby, who is sleeping in the room next door, just me running through a field of wild flowers to a giant castle that is welcoming and homey.  I know that most of you feel the same way and I wish that there was some magic cure for our pain that would come along.  No one should have to suffer this much and try to go through life with such pain.
In another note, I now have to have my bottom dentures fixed UGGGG!  I've had them for 13 years now, since my original teeth decayed to the point where I was tired of living with such horrible mouth pain.  But they only did a temporary lining at the beginning and now after 13 years of my gums declining I am now forced to head for the dentist to get them fixed.  Way too expensive!  But hubby says I will go!  Gosh I hate spending his hard earned money on something that should have been done long ago, but that was also around the time I was having other health problems and I didn't know which to take care of first.  Took the other route and now I'm paying for it.  Botle of ambesol is almost half empty and I've had to wait 2 weeks for this appointment, so guess its time.
Anyway....just needed to vent.  Hugsssss to all my dear friends.
I live to "Tame My Pain!" 

Veteran Member

Date Joined Feb 2010
Total Posts : 914
   Posted 2/24/2010 6:03 AM (GMT -6)   
Hey Scarred for life Im so sorry your having such a hard time sleeping but I know just how you feel .I am always up when I should be sleeping and sleeping when I should be up .I don't know if you've tried a gentle sleep aid and meditation . Meditation . beleive it or not can really help settle you down a lot ; A lot of the time , at least for me its the noise in my mind that keeps me up . Since I've been calmer its made it easier to be restful and fall asleep . Juat a thought , I hope all goes well for you , best of luck and prayers .
HIV+ also Hep c , need hip replacement surgery on hold because of cellulitus  .most pain from hip condition and cellulitus .hands numb may have carpal tunnel syndrome now .             .Medecines - Oxycontin , percocet , Oxycondone , Celelbrex ,Avalox , lasix .

Retired Mom
Veteran Member

Date Joined Feb 2010
Total Posts : 1753
   Posted 2/24/2010 6:54 AM (GMT -6)   
I'm usually up right there with you, but tonight was only brief episodes of fitful sleep, so I did't want to get on the computer to wake myself up more. Thank God that today did not come with the severe dizziness that yesterday did, but the hand pain is horrible. I think there is another front coming through.

Anyway, I wanted to say that you are certainly not alone. We all understand.

Also, I don't fully understand the dental issues because I've not had them, but I do have a very good CP friend with similar problems. She went and had all of her teeth pulled the same day and dentures put in a one of those places that does the immediate fitting. Her new teeth were a little strange looking until the swelling went down, but look wonderful now and they were very inexpensive in comparison to most places. She has never had a problem and it's been about two years since she had it done.

The point I'm trying to make is that it may be a good idea to check out a place where they can fix your existing dentures or replace them "in one day" as most of the adds say instead of waiting for several weeks to get in. Teeth are important to us for so many reasons, not the least of which is our personal feelings of satisfaction and comfort. This may be a horrible suggestion to you (since I don't know your dental history), but I know it was a blessing to her to have her teeth fixed and new ones in immediately. She did suffer some with pain, but swears the benefits outweighed negatives.

I wish you all the best!

Veteran Member

Date Joined Mar 2008
Total Posts : 3089
   Posted 2/24/2010 3:46 PM (GMT -6)   
Hi Scarred,

Sorry to hear about your rough night. I have a lot of those too. The last few days especially have been really bad. I've gotten about an hour of sleep each of the last two nights & once I'd finally fall asleep I kept waking up crying because I was in so much pain. It's horrible when you can't even escape the pain via sleep! I hope tonight is a better night for you!


Regular Member

Date Joined Feb 2010
Total Posts : 66
   Posted 2/24/2010 4:09 PM (GMT -6)   
Hi Scarred,
I too can understand your frustration and anger with the lack of sleep CP patients suffer with. I honestly don't think anyone can understand until they have been in our shoes. I hope you get a better night's rest tonight and I look forward to knowing each of you better with time.
Cardiomyopathy, Celiac Disease, High Blood Pressure, 2 Fusions @ L4, L5, S1, 2 Fusions @ C7 & C8, Implantible bone growth stimulator cervically, and soon to have Neurostimulation Therapy to treat lumbar, Chronic Pain Sufferer for 8 years, take several meds daily to survive! Looking for a miracle I think ~

Regular Member

Date Joined Feb 2010
Total Posts : 63
   Posted 2/24/2010 5:02 PM (GMT -6)   
I have had countless nights/mornings as you describe...looking for a few moments relief...medications, hot shower, hoping to fatigue at the computer, then in a few hrs, to get dressed to go to work...silent screams so as to wake no one up...just wanting to do anything to take the pain away...I am with you in spirit and hope you have much better nights with wonderful dreams...big hugs, J
It is better to conquer yourself than to win a thousand battles. Then the victory is yours. It cannot be taken from you, not by angels or by demons, heaven or hell. (Buddha)

Veteran Member

Date Joined Jul 2008
Total Posts : 1560
   Posted 2/25/2010 8:55 AM (GMT -6)   
Hey all! Thanks for the wonderful responses. I really don't know what I am doing wrong this time. I had about three weeks where I was sleeping great. Only waking up to let the dogs out to potty or to do that myself LOL. But now it seems that I am at that point again that I am not sleeping well, waking up to my crying whimpers and waking up several times throughout the night. It bites when you just want to sleep ya know!?

Stray; I always look forward to your posts hun. :-) You always seem to know what to say to make me feel better. Yes I have an appointment with a dentist on the 4th. I'm tired of having mouth pain and knowing what is wrong and hubby is I think tired of me complaining. It's bad enough that I am a human barometer as most of us that deal with pain are. We can tell when that next storm is coming in days before it even hits. I have been at a 8 for the last week and a half and am sooooo tired of it. I think I am getting like Ace and tired of the pain.

Oh hey, on a brighter note.....I have an appointment tomorrow with both my pain doctor and my pain psychologist. I am done with my long term plans, they are written on paper and are ready for him to look over. So hopefully I will be done seeing him and on my way to starting a new life with the SCS!!!! Now I am searching for an attorney that can handle the rejection I am about to recieve from Wyo. Workers Comp. Then on to court and whatever happens after that....I'll deal.

Anyway I just wanted to thank each of you for your kind remarks.


I live to "Tame My Pain!" 

Regular Member

Date Joined Jul 2009
Total Posts : 278
   Posted 2/25/2010 10:20 AM (GMT -6)   
Hi Scarred....So sorry to hear your in the same boat as me. Maybe we can "row" together....
Sending you warm, loving huggs!!!
Tethered Spinal Cord~1.5x1.2 cm spinal cord cyst at L5/S1  (Lumbar Laminectemy completed 9/10/09)~Scolosis~Migrains~Leg Deformity~Foot Deformity~Knee, Hip, Back, Neck Pain~Severe Depression~Insomenia~DDD~Artheritis (Spine)~Spinal Bone Spurs~NEW: Herniated Disc T5/T6 
"I'm not going to vacuum 'till Sears makes one
you can ride on"
~Roseane Barr~

Mrs. Dani
Veteran Member

Date Joined Jun 2009
Total Posts : 2787
   Posted 2/26/2010 11:26 AM (GMT -6)   
   Dear Scarred,
     Good morning. *hugg* It is so good to hear from you. I am terribly sorry for the late response to your thread. Its been rather hecktic around here.
      I am so sorry you have to see the dentist. I hope you havnt lost bones mass in your jaw and more so that the "fix" doesnt cost an arm and a legg. I know my "dental adventure" nearly broke my spirit.... I hope with all my heart that the dentist can help you quickly.
     The endless sleeplessness gets so tiring shakehead  You know I have to try hard to not laff when a non-CPer says they are "tired". My evil side wants them to come jump in one of our bodies, then tell me how tired they really are! Oh, enough negative talk! Hopefully by now you have had your appointments and have a "plann" for teeth and the sleeplessness. Please let us know how it goes! *warm huggs*



Two roads diverged in a yellow wood,
And sorry I could not travel both
And be one traveler, long I stood



Regular Member

Date Joined Mar 2010
Total Posts : 39
   Posted 3/3/2010 5:32 PM (GMT -6)   
And who my friend with chronic pain isn't?  It's been 12 years since I last slept in a bed, but instead just a chair and a throw is all I call bed these days, but just a couple weeks ago I switched the way I slept - and who knows maybe it might help you.
For over 4 years I would kick back in my recliner in the living room and the TV so whenever I'd wake up, I could take more medications and eventaully go back to sleep.  Then a couple weeks ago it dawned on me that we had a guest room that was sitting empty.  Well now I've got a recliner moved in there complete with TV, Ethernet and a small fridge.  While I can't say I got to bed anymore, I can say I go to bedroom and that's almost as good.
People like us get use to sleeping in 1 - 3 hour batches, and that's all we'll ever probably ever get again, but except for every 6 or 7 days when we're just dog tired, we get use to sleeping in short nap style instead.  Look how much luckier we are than most when we're awake at 2 in the morning.  Thanks to a digital TV recorder we watch something we recorded earlier, while we get our medication and something cold to drink out of the icebox.  For the vast majority who live on this planet earth, they're not near as lucky, so I try to never forget it.  Just the fact that we can share ideas with each other with a little computer upon our laps is an idea that's as science fiction to many on this earth as Star Trek is to us.  You know, we're darn lucky.  So when I'm bouncing off the walls alone in the middle of the night, I remind myself I've got a loving wife asleep in a room next door, while I'm still comfy in my room even though pain has once again invaded my little world.  While I know how bad it can get, trust me, for those who don't enjoy our typcal stadard of living, worse really can get a whole lot worse.  It's only a zip code that defines the difference, and for some odd reason I got lucky this time - and probably so did you.  Take care, and enjoy the night skies with me.  Bob.
After an accident in  1997 crushed the nerves in my pelvis, halfway down the calf and at the fibular head (knee), my left leg slowly started to turn color from the foot up, along with swelling and temp change.  Within 2 weeks I was diagnosed with RSD.  Within 6 months, I had purple, red and some black area's almost to the knee area.  By 1999 I landed in a wheelchair and started a life taking narcotics all the time.
In 2004 I got an Intrathecal morphine pump, and I just got it replaced around a year ago, so now I'm on my 2nd model.
5 years ago the RSD spread to my right leg and has done around 80% of the damage it did to my left leg in half the time.
1 1/2 years ago I went septic, and the infection did go body-wide.  After 2 days in the hospital I then had a clot in my lungs.  Both should have killed me, but this time I got lucky.  Meanwhile I've been battling blood clots for the last 4 years.
Last fall the doctor's decided I needed to have both legs amputated above the knee's, but I decided I could only handle one at a time, so I went with the left leg since that one is a little worse off.  The right leg is now black all the way to the knee.
I haven't slept in a bed for over 12 years and have instead accepting the fact that I can only sleep in a chair upright.  Since I'm in RSD Phase III, it's still progressing, but I refuse to go on a pity party because those who do, party alone.  Thanks to a wife of 27 years and great family and friend support, I'm only half nuts half the time.
Guess that about say's it all.  Bob.

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