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Could use support - new diagnosis
by
gutsygirl
on 26 Mar, 2013 22:27
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Hi all,
I've been absent a bit the last two weeks or so. Pain legs in legs have been so very high. I finally have a rock solid diagnosis but its a terrible disease that I have good reason to be afraid of - CRPS/RSD. That stands for complex regional pain syndrome or reflex sympathetic dystrophy. Words don't easily describe what this neuropathic pain feels like but its burning pain with shooting, stabbing, and my leg is sooo sensitive to any touch.
I know God will get me thru this somehow as He always has. Would appreciate prayers, positive vibes, and notes of encouragement. Having a hard time moving forward. No cure. Just difficult treatments, many of which are invasive and painful.
GutsyGirl
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#1
by
Tyler
on 26 Mar, 2013 23:40
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My prayers are with you GutsyGirl! I know He will guide you through this.
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#2
by
Lynchy
on 27 Mar, 2013 00:17
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Thinking of you Gutsy.
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#3
by
OzSly
on 27 Mar, 2013 00:38
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My Prayers are with you GutsyGirl.
Hoping they find a cure soon.
Thinking of you.
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#4
by
Beardman
on 27 Mar, 2013 00:48
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I guess... on the plus side you now know what the problem is
You've been fighting the good fight so far, I know you've got the capacity to keep on trucking along!
You know you've got the support of all of us here at SBG, hopefully they find a less painful and invasive way of treating this in the near future!
Many a positive vibe going in your direction!
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#5
by
Hingatao
on 27 Mar, 2013 00:57
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We're all praying for you.
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#6
by
sahil15
on 27 Mar, 2013 02:06
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I shall pray for you... cant even begin to imagine what you are going through.... your really brave and a source of inspiration for us all.
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#7
by
Adamski1972
on 27 Mar, 2013 06:30
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Sending all my best wishes and positive hopes.
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#8
by
Razor X
on 27 Mar, 2013 08:19
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Sorry to hear this. You are in my prayers.
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#9
by
gutsygirl
on 27 Mar, 2013 08:34
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Thanks so much for the encouragement - much needed and appreciated! I've been in and out of my wheelchair for over 10 years now. I was doing so well walking with minimal assistance in Sept Oct and Nov 2012 - I even had one of my dreams come true; to rollerskate again (I bought a $30 pair of rollerskates at wally world, pink of course, and learned to skate again in the parking lot outside my apartment using my rolling walker and of course helmet and tons of padding like the michelin man...even went to a roller skating rink!). The good news is I NEVER took that for granted; I always thoroughly enjoy any day/minute I can be standing and walking, even when it hurts like hell. :-) I fight to keep walking and have learned to walk at least 4 times over through therapy.
The latest flare up on december 2nd has been the scariest ever. The pain...wow...a whole new level to me. So its back to the wheelchair for now. I've had CRPS for the last 10 years which finally explains the burning pain in both legs after my reconstructive surgeries as well as the osteoporosis in both legs; it was just never properly diagnosed because docs kept saying it was "in my head". Grrr. Now its so bad that they can watch my leg turn blue, swell, get deathly cold, etc and they believe me. Problem is...the longer one goes without treatment (like...10 years!), the poorer the outcomes.
Some treatments my docs and I are considering: lumbar nerve blocks, neuropathic pain meds, baclofen and pain pump, nerve ablation (frying the nerves with radio frequencies and heat), ketamine infusion/internasal spray, physical therapy (already been there done that), desensitization programs (hell), stress loading programs (double hell), and spinal cord stimulator.
Though most of those treatments really suck in one way or another, I'm glad there are at least a bunch of options left for us to try at this point. I will let you know how it goes.
You guys and gals are awesome, by the way!! I'm here for ya too if ya need to vent. :-)
Gutsy
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#10
by
Bilko1
on 27 Mar, 2013 09:38
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Hi, GutsyGirl!
You really inspire me with your incredible (I do know that it is God giving you the empowerment) bravery & fortitude. It is my prayer that God comes through for you & helps you through this "valley" experience. I also pray that the Lord would touch you in a very special way, even heal you completely. Please keep us posted on your progress so that we can pray all the more & better, too.
God bless you,
From your bald brother in bonnie Scotland.
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#11
by
Laser Man
on 27 Mar, 2013 11:33
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I'll keep you in my thoughts and prayers. Stay strong.
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#12
by
Papa Don
on 27 Mar, 2013 11:54
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Gutsygirl, my prayers are with you. I'll put you on the prayer list at church so the entire congregation will be in on this with you and the Lord. Your bravery is awe inspiring.
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#13
by
baldjoeg
on 27 Mar, 2013 15:28
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Gutsygirl, You are in my thoughts and prayers. I hope they find a cure for you soon.
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#14
by
bella
on 27 Mar, 2013 18:05
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Hugs, gutsy-- you are in my thoughts. You truly are a gutsy gal, keep representin'!
I'm so sorry you're having a rough time.