As I sit here at 2:55 am (Central Time) eating my low fat yougurt

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Scarred_for_life
Veteran Member


Date Joined Jul 2008
Total Posts : 1559
   Posted 8/17/2010 1:11 AM (GMT -7)   
and waiting for the pain that has decided to travel down my left leg and seer right into my pinky toe, I wonder when the pain will subside enough so that I can get a little sleep.  My psychologist says that I am still fighting a bit as to my pain, but that its a go with the SCS.  So I wait....wait for WC to get off their slow butts and get things done on their end.  It's funny now that I think about it that I even had to go through these stupid evals.  Anyone who knows me can see the pain and anguish on my face.  They can see by the limp in my steps that I have problems.
 
I have done so much research in the past ten years about different procedures that have been tried on pain patients and I think that maybe this will help or maybe that will.  I figure that I am about as well informed on the SCS as I can be.  I know what to expect and I know this is my last and final chance for any pain relief.  I'm not expecting a miracle here!  Just wanna see if the darn thing will work and if it does, how much relief from my daily pain will I get.
 
It's raining outside, which makes my back and legs hurt even more then normal.  Too bad us pain patients couldn't find an island where we would have the best care, top notch doctors to care for us, the perfect weather so that we wouldn't hurt anymore and of course cute cabana guys and massage guys that would bow to our every whim!  (Hey I may be married but I'm not dead yet!! LOL)  Anyway, gonna close for now with my thoughts, I think I'm getting carried away LOL!!
 
Hoping all my dear HW friends are sleeping well and in little pain.
 
Hugsss
 
Scarred
I live to "Tame My Pain!" 

flower123
Veteran Member


Date Joined Apr 2009
Total Posts : 856
   Posted 8/17/2010 2:57 AM (GMT -7)   
I hope that you're sleeping!

I'm happy that you're going to get the SCS. I met a CP patient a couple of weeks ago, and she had let her battery die, so she was in pain. She wouldn't stop talking about how wonderful the SCS is. She said that it is amazing, and helps her so much. It allows her to work.

Yes, we need an island! That would be wonderful. I'd like one with perfect weather, people who understand CP, top-notch doctors, and the cabana boys:) Ha ha. I'm married too.

Hugs,

FLower

Retired Mom
Veteran Member


Date Joined Feb 2010
Total Posts : 1753
   Posted 8/17/2010 3:35 AM (GMT -7)   
Hi Scared,
 
I'm sorry that you are struggling so much right now.  I was up a t 3:00 AM taking meds and then up at 6:00 taking meds (to stay up for the day). 
 
I wish I had the answer for the SCS, but I don't know anything about that.  I was doing pretty well with pain management (except for flares of course) and then we changed several meds at one time.  I'm definitely with you now in the pain flare (and it's been raining here too).  I very happy to see the rain because everything outside is so dry, but the weather so affects me (like it does most of us).
 
I did find something that helps me greatly with the weather related aches and pains.  I bought a 50 pint dehumidifier for my house.  I move it from room to room (on wheels) and it pulls the full 50 pints of fluid out of the air over each 12 hour period.  It puts out a little heat, but keeps the inside humidity down (I'm in GA relatively near the coast) and that means the temp for the air conditioner can be increased a few degrees without feeling warmer.  It may not help in a low humidity area, but it gives me great help here.....just an idea.....
 
I hope you are resting now and can rest for a few more hours at least.  It's time for me to go wake my daughter for the school day.  I hope my meds kick in before she leaves so I can send her off for a good day without worry.
 
 
Retired Mom

antbuggey
Veteran Member


Date Joined May 2010
Total Posts : 594
   Posted 8/17/2010 5:02 AM (GMT -7)   
Oh Scarred, I am so sorry you are suffering....we could have chatted...my pain woke me at 4:10 central time! It was raining here also, which seems to really add to it! I have a lot of humidity here in Nebraska, so thanks Retired Mom for the recommendation of the dehumidifier. I usually check the pressure when I am hurting bad and if the barometer is below 30 or falling it is a big problem! I found out it is because low pressure allows stuff to swell and cause pressure and pain! Just a little info I have discovered over the past 3 years, which you may have already known! Most of us CP patients are human barometers. Anyway, I just wanted you to know that I feel for you and am so sorry to hear that pain was preventing your sleep! Hope you are doing better and getting some rest!

Take care of you,
Beckey
Spinal Stenosis L3/L4, L4/L5 & L5/S1 with Nerve Impingement, Fibromyalgia, TMJ, GERD, Severe Depression, VERY Large Cyst Right Ovary causing mild twisting, Small Cysts Left Ovary & 3 Large Cysts Uterus and Possible RA

Medications - MS-Contin, Cymbalta, Famotidine and currently Prednisone

caligirl2001
Regular Member


Date Joined Jan 2010
Total Posts : 197
   Posted 8/17/2010 5:30 AM (GMT -7)   
I am with you all on the no sleep train tonight...or this morning now....haven't been to sleep yet. 5:30am right now.
Fibromyalgia, High BP, Migraines, anxiety, Non Celiac Gluten Intolerant
Current medications: Topamax, Maxalt, Lotrel, Wellbutrin

tmjpain
Veteran Member


Date Joined Oct 2008
Total Posts : 2022
   Posted 8/17/2010 7:11 AM (GMT -7)   
Good morning ladies. I hope you each got to have a little sleep. It's just not fair is it!!!! We suffer enough with our pain and to top it off we can never get any good sleep. It's a viscious circle. Pain--- no sleep----depressed, around , and around it goes, stopping when nobody knows!!
I was heading for the same type of night. After rolling and rolling in bed, crying and holding my head, getting all worked up I decided the hell with it, I took two Ativan (doc don't want me using it, but they are not the one that can't sleep) and i finally drifted off.
Wake up this morning and bam, hello, I 'm back (meaning the headache). Wouldn't it like to go to someone else's house for a while!!!!
 
I hope you can each have a better day with lower pain levels!!
 
Hugs
One day at a time!!

SUZANE

damouthy1
Veteran Member


Date Joined Sep 2009
Total Posts : 663
   Posted 8/17/2010 7:18 AM (GMT -7)   
Suzane, I would take your headache for awhile for you if I could! I hope everyday when I read a post of yours that you will say you have finally gotten some relief. I hope that day comes soon for you! Scarred, I am so sorry you are having still having so much pain too. I hate when I can't sleep because of pain. When I hurt all i want to do is sleep so I don't have to deal with it. I hope you got some much needed Z's. Take care.
Gentle Hugs>

Shannon




Fibromyalgia, Chronic daily headaches, Migraine disorder (with and without aura), Possible Graves Disease, GERD, High blood pressure, Depression and Anxiety


Oxycontin, Lopressor, Lexapro, Omeprazole, Valium as needed, Promethazine as needed for nausea from migraines

Tirzah
Veteran Member


Date Joined Jul 2008
Total Posts : 2279
   Posted 8/17/2010 7:39 AM (GMT -7)   
Scarred,
Sign me up for the pain-free island. I've been under phenomenal stress lately with waiting for the official green light from HR (my God, how long do these people need to background search me? well, actually there's only one person & she's been on mandatory furlough. it just sucks waiting) & am being evicted from foreclosure anytime after today & my a/c's broke (which you know is FUN for people with CP) and I had to face that *****y nurse again. And I had a meltdown at my PM's office & told him I didn't ever want any more meds ever. Yeah. I said that. I told you it was a meltdown. So now I don't know what I'm going to do.

So when you're sitting there wishing more than anything that you had your approval for the SCS, just think to yourself "at least I'm not certifiably crazy like my HW-pal Frances". :)

Hope that brightens your day a bit & I hope you get a call very soon saying that you have all the approvals to go forward with the trial -- and then RUN, don't walk, to your PM's office & get that thing in your body as fast as possible. ;)

take care,
frances

tmjpain
Veteran Member


Date Joined Oct 2008
Total Posts : 2022
   Posted 8/17/2010 10:14 AM (GMT -7)   
Ah thanks Shannon, so thoughtful of you.
 
I keep thinking in this day and age that there has to be something out there to help us. Each of us. It is so inhumane for us to suffer like this. Don't you think? Why is it so difficult to get any help? Do you think that seeing another neurologist is going to make the difference for me?? I really don't know but I will be finding out soon.
 
Oh Scared, I was eating fudge with a glass of milk at 0400EST.
LOL
What we have to do to stay sane eh!!!!
 
 
Let's hang in there together.
One day at a time!!

SUZANE

Scarred_for_life
Veteran Member


Date Joined Jul 2008
Total Posts : 1559
   Posted 8/17/2010 10:57 AM (GMT -7)   
You know its funny, my hubby says he wouldn't let our dogs be in this much pain!! It's crazy! I listen to the horror stories of how impersonal these PCP's are and how they won't prescribe the right amounts of medications for us who are in that much pain and I have to wonder who the hell are they thinking about? I would say their own butts.

But I digress....that subject is a little too stressful to think on right now LOL. I got a tiny bit of sleep (2 hours) after I wrote my post this morning. So I'm not doing to bad this morning. However, there is the matter of increased pain that is really got me down today. The weather is still threatening to rain once more and I just wanna scream my head off. Doc's say I am on too much medication and that they won't change one thing, so I just have to plug on.

Anyway thanks for all the posts. I still think we ought to find the perfect island LOL!!!

Hugss

Scarred
I live to "Tame My Pain!" 

hydrangea
Regular Member


Date Joined Mar 2007
Total Posts : 190
   Posted 8/17/2010 10:59 AM (GMT -7)   
Let me know when you leave for the island!! I am coming with.

I hope your pain is manageable today!! and I hope you got some sleep
Diagnosed crohns Disease 07, Bladder tumor and inflammation, Herniated disc, spinal stenosis, facet arthritis, degenerative disc disease, siatica, Three laparoscopis, hysterectomy, physical therapy, trigger point injections, spinal epidurals, Meds lyrica, vicodine, amrix.
Spinal Fusion 3/2010

tmjpain
Veteran Member


Date Joined Oct 2008
Total Posts : 2022
   Posted 8/17/2010 12:31 PM (GMT -7)   
Well I am coming to the island too. I hope we can set up our meeting date soon. When does the plane leave.
So back from the neurologist and I didn't get much out of that, maybe a couple meds that I know my doc doesn't think are the right meds for me and so many side effects. So life goes on. I am tired of doc that don't have any sympathy or caring manners. Thank God my gp really cares about me and has done as much as she can. She calls me at home to see how i am making out.

Like I said I am ready to go to the island now. LOL

hugs all
hang in there
we'll do it together
One day at a time!!

SUZANE

antbuggey
Veteran Member


Date Joined May 2010
Total Posts : 594
   Posted 8/17/2010 12:50 PM (GMT -7)   
Scarred, I am glad you got a little rest...I can not seem to stay awake today! I think I am getting a cold on top of everything else! You would think that CP people should not be allowed to get colds.....we have enough to deal with! Anyway, I sure hope you get to feeling a little better hun! Let me know when we leave for the island too! Sooooo ready! Funny what you wrote about your husband saying that about your dogs....we have 3 VERY spoiled dogs and my husband said the other night that it was not fair that they were living a better life then I was living! Hang in there! Sending healing hugs your way!

Dear sweet Suzane, I never know what to say to you! You are such an incredible lady and I pray each day that I will log on and read that you have gotten some LONG overdue relieve! I agree with my sister Shannon, I would take your headache for a while, if I could....just to give you a break! My gp is great too and just keeps trying even though it seems all the specialists are worthless!! Please know that I think of you often and pray for relief for you and many others that I care deeply about in my HW family!! Take care hun!!

Hugs and healing thoughts to all of my family here!
Beckey
Spinal Stenosis L3/L4, L4/L5 & L5/S1 with Nerve Impingement, Fibromyalgia, TMJ, GERD, Severe Depression, VERY Large Cyst Right Ovary causing mild twisting, Small Cysts Left Ovary & 3 Large Cysts Uterus and Possible RA

Medications - MS-Contin, Cymbalta, Famotidine and currently Prednisone

PAlady
Veteran Member


Date Joined Nov 2007
Total Posts : 6795
   Posted 8/17/2010 3:42 PM (GMT -7)   
Scarred,
Save me a seat on that plane! And since I'm single, I request an extra cabana boy! :-)

Seriously, I'm glad it's looking like the SCS trial is coming.....sometime....although who knows when. Maybe we need to land our plane at the main W.C. office first, before heading on to the island, and have a protest in front of the building. And not leave until you get your trial!

Take care, lady....and I hope you get some sleep tonight!

PaLady

Scarred_for_life
Veteran Member


Date Joined Jul 2008
Total Posts : 1559
   Posted 8/18/2010 9:46 AM (GMT -7)   
Good idea PA!!!!!!!! I'll make up the signs! I just do not understand why we all have to go through so many hoops just to get the right treatment. It's insane!! Anyway I slept pretty good last night (finally)!!!!! Back still in a lot of pain but hey, I'll take whatever I can right?

I think we shall leave on Friday and it'll be a one way ticket for all of us!
Hugsss

Scarred
I live to "Tame My Pain!" 

Hello~Kitty
Veteran Member


Date Joined Jun 2005
Total Posts : 610
   Posted 8/18/2010 6:41 PM (GMT -7)   
The word 'sleep' doesnt exist in my world either. And when I do fall asleep, I always have really wierd dreams where they feel so real, and I always wake up more tierd. My doctor thinks I'm not reaching the REM part of sleep, where you actually get the sleep where you rest, so she's sending me to a lung doctor to do a sleep study on me. I an take anything to help me sleep, Ambien and lunesta make me see things arnt there (which is very scary) and seroquel and the other anti-Ds that are use for sleep either make me way too sleepy that it hurts or give me severe anxiety, and I can't take benzodiazapenes cause it's deadly to mix them with the pain medication I take. And benadryl and visterial works for a few nights, then it wears off, so it seems like their isnt anything else to help. Sometiems after taking my Subutex, I'll get really sleepy for a few hours, and i'll get a few hours in, but for some odd reason, I always fight it. Hopefully this lung/sleep doctor can figure out something....Also alot of times my pain keeps me awake, even with the medication, and my knees are the worse. I've been using asian cobra venom the rub on them the past few nights, and that seems to help somewhat, but i'm usually always awake all night, it's very frustrating. And my ids get so fed up with me cause I'm always in a foul mood from not sleeping, but I can't help it. I keep hopeing that some day thngs will be normal, where I will actually sleep at night and have energy during the day, like normal people.....

Anyways, if anyone has another other suggestions on what can be used for sleeping, please let me know!! I want to try that new sleeping medication, the one that use to have those commercials with the beaver and abe lincoln, but I dont know if my insurance will cover it......

-hellokitty

Carmen~*~*~Chronic Pain Moderator

DX-Chronic Pain due to two freak car accidents, Pancreatic Divisum, Fibromyalgia, Asthma, Depression w/anxiety, Migraines, and Kids!!!

Meds- buprenorphene (Subutex) for chronic pain, Cymbalta, prilosec, Zyrtec, ProAir inhaler, and the best medication is my puppy, kitty, and 5 guinea pigs!!!

 


skeye
Veteran Member


Date Joined Mar 2008
Total Posts : 2976
   Posted 8/18/2010 7:55 PM (GMT -7)   
(((((((((((Scarred))))))))))))). Your day is coming! One of these days, we are going to see a post from you saying yippee, my trial's been approved & I've got a date! When that day comes, I'm going to be jumping up & down for you!! Until then just keep plugging through. I know it's hard to see it now, but you're going to make it. You've made it this far, just keep holding on!

Oh, and save a seat for me on that plane of yours!

Skeye
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