Sly Bald Guys Forum
Discussions About Being Bald => Sly Bald Gals - Women's Corner => Topic started by: gutsygirl on March 26, 2013, 10:27:01 PM
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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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My prayers are with you GutsyGirl! I know He will guide you through this.
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Thinking of you Gutsy.
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My Prayers are with you GutsyGirl.
Hoping they find a cure soon.
Thinking of you.
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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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We're all praying for you.
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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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Sending all my best wishes and positive hopes.
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Sorry to hear this. You are in my prayers.
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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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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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I'll keep you in my thoughts and prayers. Stay strong.
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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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Gutsygirl, You are in my thoughts and prayers. I hope they find a cure for you soon.
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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.
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You are truly an inspiration to us all GutsyGirl *Big Hug*
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So it has something to do with your spine or what? I heard about something called "spinal decompression" from a doctor that practices it here and apparently it is a not-so-widely-known treatment. I have no clue if it would apply to you, but just my two cents.
If you've lived with this for 10 years then you're clearly a strong person. I know you can overcome this!
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I hope that your docs can figure out a treatment plan and course of action for you. Lean on God through this. He's got your back!
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Supporting you in thoughts and prayers here- you seem to have a very strong spirit. We are here to support you.
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Hey Gutsy Girl,
I have a pretty recent diagnosis of aggressive Rheumatoid Arthritis and I know what it's like to have pain. Hang in there and keep that pretty smile shining.
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Thank you all. And thanks for passing my needs along so others can pray - the more the better IMO!
I'm no stranger to pain at this point, having had rather severe pain most of my life. No stranger to odd, rare new diagnoses too but this one seems to hit especially hard for some reason...maybe because there seems to be little I can do myself to keep the pain away.
No its not from my spine, but instead from my sympathetic and autonomic nervous system reacting as though I have a severe injury when there is none. Have never heard of spinal decompression but I do see a chiropractor regularly which I feel helps with my back pain, balance, etc.
I started a new blog last night: www.crpsablaze.wordpress.com. I also blog at www.naturallygutsy.com :-)
Leaving for the hospital at 6:30am and won't be back till afternoon following my biofeedback appointment so I better get to zzzz. Good night fellas. :-)
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Hi Gutsygirl: Just wanted to let you know that you will be in my prayers. I love your attitude. Kindly keep us posted.
WARHAWK O0
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Gutsygirl, as one of your biggest fans, (as well as one of Bella's biggest fans), you are in our prayers everyday. No matter what your SBG brothers and sisters are here for you. Stay strong and God Bless you!
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I'm ssssooooooo exhausted and oign to bed but just wanted to say HI, I'm alive, and thanks again for all the praeyers and support. My left leg especially really hurts but I'm hopeful for some treatment and possibly some relief in the next few months. Good night.
Gutsy
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Sorry I haven't been around much. Just trying to survive with lots going on.
Had my first series of nerve blocks in my lumbar spine today on both sides. Went fine but of course my back is sore. The results are just ok - no huge relief but there is some. I felt my legs get warm as blood circulation increased and that was a nice feeling - legs not as blue/gray/purple. I'm a little less sensitive to vibration like the vib from riding in the car with my foot on the floorboard. I can also release the velcro on my shoes without pain and I have less limp when I am weight bearing. When I got my shower I noticed my sense of temperature was greatly improved (warm water didn't feel scalding hot and the cool tile floor didn't feel like dry ice)! The feeling that my left leg is deeply bruised is still there as is the allodynia (painful hypersensitivity to touch that should not be painful). All in all, I figure I will take whatever relief I can get.
My legs are quite swollen and the left one is really red tonight but the burning isn't too bad. Doc said the nerve block will probably only last me 2 days.
Trying for more sleep. :-)
GG
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Hello Gutsy, my positive thoughts and prayers go out to you. I have peripheral neuropathy in my legs and hands and have to use a wheelchair quite a bit so I sort of know what you are going thru. Be strong baby.
Tom
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Hi GG: Thanks for the update. Prayers and good thoughts to you. I love your attitude.
WARHAWK O0
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Hi Gutsy, sorry it's taken me so long to comment, just want to say that my prayers are with you, your strength and resolve are inspirational and believe you will get better, just keep going and you're on your way.
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Gutsy, sorry to hear that your having these problems. I hope that the docs can relieve it. Prayers offered up.
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vibes your way
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Silverback, I'm sorry you understand, yet grateful for your support.
I'm hanging in there guys. This is one of the biggest challenges life has thrown me as of yet.
Here's something to make you smile! http://crpsablaze.wordpress.com/2013/04/27/observation-keeps-life-interesting/
http://crpsablaze.wordpress.com/2013/04/29/his-strength-and-his-constant-faithful-mercy-even-in-the-morning/
GG
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I'm still alive and still sly, but it's been a rough go. Possibly getting an SCS, spinal cord stimulator, as the last option doctors have to help control the pain. I'm scared but pushing through by the grace of God.
Thanks for caring!
Gutsy
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Gutsy! Welcome back! Thanks for checking back in; we were worried about you. Still praying for you and good luck with the SCS!
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G'Day GutsyGirl O0
Welcome back, good to hear from you.
You are still in our prays.
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GG keeping you in my prayers. I hope that the SCS helps!!
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God bless you Gutsy. One day at a time honey.
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You are an inspiration to me (and i believe to all others) Gutsygirl :)
My prayers and my positive thoughts to you... Stay strong
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You are in my prayers, too, GutsyGirl.
Really hoping this work for you.
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Just three minutes, Cave Dweller? I'm so sorry. :*)) (Eh, hope I didn't cross the line joking around on that one. >:D )
Thanks everyone, Cave Dweller certainly included. I really appreciate your prayers more than you know. I pray for God to heal me and know that if He doesn't in this life, I've got one huge Rain Check to cash when I see Him upstairs!!! :D You better believe it!!
I keep going back and forth in my brain about whether or not I should proceed with the SCS. I see this being advertised by the company that makes it, and there are only OLD people on the promo materials! What about those of us who are in our 20's and 30's who are falling the mess apart and who've only got three minutes (couldn't resist)? I mean, are we supposed to feel like old far*s? I think this is eventually gonna hit me hard emotionally, but I'm trying to delay the inevitable. :-X
Love ya'll!
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All good to you gutsygirl
Sounds like you may need to do more research? and talking to people who have had treatment? Although sounds like you already have been doing a lot!
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Hi GutsyGirl,
I have seen your posts and you strike me as strong and having a positive outlook. That you are facing so much pain fills my heart with sadness. Bad things should not happen to good people.
I wish you all the strength, support and encouragement you need to make it through this most difficult time. I am sending you thought, prayers, best wishes and hopes that you are finding hope and a reason to smile every day !!!
Best wishes and godspeed you to a complete and full recovery! :)
-gary-
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Hi GutsyGirl,
Your chosen name certainly fits you. I can't imagine living with chronic pain, but your incredible strength, positive outlook, and faith in God is so inspiring. I pray that you will find relief. You have inspired so many of us here. Keep flashing that beautiful smile!
God Bless,
Peter
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GutsyGirl I just found this thread and I want you to know I add you to my prayers now daily.
From a theological perspective it's important to remember that healing can occur even if there is not a cure. I think you are well on your way to being healed because you are thankful for what you have, take nothing for granted, and are trying to live your life to the fullest despite these issues you have. (I'm also pleased no one said, "God never gives us more than we can handle" to you because that's just crap--trust me.)
Now putting on my neuropsychiatric hat...I know of two patients who have the same regional pain condition you have that benefitted greatly from using pregabalin (Lyrica). It's the drug you see on television for fibromyalgia and diabetic neuropathy treatments. It is being shown to have significant effects on people with neurogenic pain disorders of all sorts. I have no idea if it will help the autonomic symptoms you're having like blood vessel constriction/dilation, but I think it could help the neuralgia that you have with temperature, pressure, and other stimuli. (Notice I say could.) I have no guarantee that it will work for you personally, nor do I know if it is possible for you personally to use this drug as I do not know your whole medical history. Maybe you've already tried it and it didn't work for you. But if you haven't tried it, it wouldn't hurt to ask your doctors about it. If it doesn't work, you're where you are now but if it does, you could be feeling so much better.
Blessings and perfect Peace,
Marshal
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Hello gents and ladies. I am doing well now. I had my spinal cord stimulator implant surgery on December 14th. So I'm not yet 1 month out from the surgery. I am doing much better than we expected. The simulator is helping with about 40 to 60 percent of my pain, or at least certain types of pain. I'm very happy about that. I have 4 months of movement restrictions, & I am NOT allowed to bend, twist, turn, or lift more than 5 pounds. So I'm not able to fully care for myself. However, I have a CNA coming in the mornings to my home and usually a friend will stop by at night to help me get to bed. I am happy, and sly as usual.
I'm trying to get caught up on some blogging. So now, I am resting as I recover, and that should give me some good time to write. I want you guys to know how much it means to me that you have been praying and supporting me. I feel very blessed indeed. Here's to a wonderful 2014.
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Strong, positive, healing thoughts are beaming in your direction. You've taught us all so much about appreciating every day and dealing with the unexpected challenges which may emerge.
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Thank you for letting us know how you are. I am very happy to hear of the improvement. May it continue!
You remain in my prayers and thoughts.
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And to a wonderful 2014 it will be to you and all those who's in need for just a little LOVE.... GOD BLESS YOU!! Gutsygirl,live life to the fullest and you will see forever.
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Welcome back and Happy New Year, Gutsy Girl! Thanks for the update, and glad to heart that things are improving. Keep us posted!
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Happy new year! Prayers and best wishes for a speedy recovery from your surgery.
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Thanks for the update and glad to hear things are heading in a good direction! Best wishes, as always!
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gutsygirl, it was great to hear from you! I am happy that you are in the direction of more relief from pain. We are in your corner with continued prayer and thoughts of great things in the New Year.
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GutsyGirl,
I am overwhelmed by your courage to not only share your struggle in a public way, but also your refusal to give-up. Your resilience is an inspiration, and I hope you continue to experience relief from your pain. You are in my thoughts and prayers.
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I am glad our thoughts and prayers are working and you are on the mend gutsygirl!!
Pain is a terrible thing to live with but I am certainly smiling knowing that our community of sly has given you hope and support and a caring online family that you know you can rely on. I will keep you in my thoughts that your recovery is speedy and full and you can return to living the life of your dreams! Hang in there, keep smiling, keep writing and keep it sly! :)