Laura (CRPSpatient)

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Blessedx8
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Date Joined Aug 2008
Total Posts : 3193
   Posted 6/1/2011 8:10 PM (GMT -6)   
Laura...
 
I've been thinking of you.... and wondering how you are recovering and feeling.  I didn't see an update anywhere else - so just thought I'd ask :-)
 
I hope and pray you are feeling better.  I know how terrible you were feeling....
 
--Tina

momtofourangels
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Date Joined Apr 2010
Total Posts : 2265
   Posted 6/1/2011 8:44 PM (GMT -6)   
I am wondering how you're doing too. Let us know when you can, ok? I hope you're feeling better.

love and hugs
Loretta
Dx: osteoarthritis, bursitis in left hip, Osteoarthrits in right hip, compression fracture in thoracic spine due to falling on frozen ground March 2001 , ddd, spinal stenosis, bone spurs, osteoarthritis in spine, osteoarthritis in both knees
Meds: Fentanyl patch, oxycodone, otc: BenGay, Tylenol Arthritis on occasion

Chartreux
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Date Joined Aug 2006
Total Posts : 9664
   Posted 6/1/2011 9:21 PM (GMT -6)   
Hope things are getting a lil better for you.
Prayers and well wishes...
**********************************************
* So many dx's I could write a book* "It would be nice if we could use the edit button in real life"...
********>^..^<********>^..^<*******

CRPSpatient
Veteran Member


Date Joined Mar 2011
Total Posts : 1276
   Posted 6/1/2011 10:23 PM (GMT -6)   
Tina, Loretta and Chart...thank you *hugs*

I'm struggling to be honest :( The cellulitis in my legs has cleared and the sores are healing, but CRPS-wise I'm not good. My doctor put me on a few days of high dose cortisone to see if that would help to stop/reverse the flare and progression. It's done nothing except bomb me out and my hand and arm are worse than they've been in probably 12-18 months - to the point that I'm struggling to use my hand at all, my arm is so swollen I can't use my crutches properly. My legs are painful, my back is painful...really, I just want a new body. The best my pain has been in the last few days is a 7/10. I'm seeing my doctor again on Wednesday, but I don't know if he's going to have any new ideas :(
CRPS since 1999, diagnosed in 2005 and since spread to full body, spasms, dystonia & contractures, gastroparesis, orthostatic hypotension,bradycardia/tachycardia, bone spurs, bursitis, carpal tunnel syndrome.

On Oxycontin/Endone, Topamax, Mobic, Magnesium, Florinef, Somac, Cipramil. Have a spinal cord stimulator, intrathecal pump with baclofen & bupivacaine and doing physio.

momtofourangels
Veteran Member


Date Joined Apr 2010
Total Posts : 2265
   Posted 6/1/2011 11:06 PM (GMT -6)   
Hi Laura

I'm so sorry that you're in so much pain and struggling. I am glad to hear that the infection is gone and that your leg is healing up. It seems that crps is so unrelenting. I sure wish that you nor anyone else would have such a disease. Bless your heart. I wish you well wishes.

love and soft hugs
Loretta
Dx: osteoarthritis, bursitis in left hip, Osteoarthrits in right hip, compression fracture in thoracic spine due to falling on frozen ground March 2001 , ddd, spinal stenosis, bone spurs, osteoarthritis in spine, osteoarthritis in both knees
Meds: Fentanyl patch, oxycodone, otc: BenGay, Tylenol Arthritis on occasion

Blessedx8
Veteran Member


Date Joined Aug 2008
Total Posts : 3193
   Posted 6/2/2011 12:07 AM (GMT -6)   
Laura...
 
I'm sorry to hear you are still struggling so much sad   I'm glad, though, that your infection is better - but the swelling sounds awful.  I want a new body, too....
 
I'm sorry if you've already mentioned this.... but I see that you already have an intrathecal pump implanted.  Have you ever talked w/ your doctor about doing your pain meds through that, to see if it helps give you better pain control? 
 
I've gone through the pump trial (so had the cathetar implanted, temporarily).... we used Dilaudid in my pump as the pain med and it was going to be mixed as a cocktail w/ a couple of other meds (baclofen being one).... Trial went well - but I ended up getting meningitis from the cathetar being in.  I've been too afraid to try again, because there is a 50/50 chance it could happen again (and, believe me - w/ me, if it can happen, it will happen to me!)...
 
Anyway, though... I'm rambling!  But I thought I'd ask you about using your pump for your pain meds, too.... Anything to get your some more relief. 
 
Take care of yourself, Laura.  You are in my thoughts!
--Tina

CRPSpatient
Veteran Member


Date Joined Mar 2011
Total Posts : 1276
   Posted 6/2/2011 2:30 AM (GMT -6)   
Tina - yeah, we have. I do have bupivacaine in there, which helps a little. The problem is that my baclofen dose is so high (it's one of my doctor's specialties, and I think he's only got one patient on a higher dose than me) that to get any narcotic meds in there we'd have to drop the amount of baclofen off. We've only just hit the bottom line of a dose that makes it possible for me to spend a little time weight-bearing, so dropping back again would compromise that and also leave me wracked with acute muscle spasms. It's a rock and a hard place for sure :(

I'm so sorry about your results with the catheter. Mine almost didn't go ahead - the day before it was scheduled the first time, I got cellulitis, the second time I got really bad food poisoning. The third time, the surgeon made me come into hospital nearly 2 days before so that nothing could go wrong...'cos I'm one of those too - if it can happen, it will!
CRPS since 1999, diagnosed in 2005 and since spread to full body, spasms, dystonia & contractures, gastroparesis, orthostatic hypotension,bradycardia/tachycardia, bone spurs, bursitis, carpal tunnel syndrome.

On Oxycontin/Endone, Topamax, Mobic, Magnesium, Florinef, Somac, Cipramil. Have a spinal cord stimulator, intrathecal pump with baclofen & bupivacaine and doing physio.
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