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Reflex Sympathetic Dystrophy (RSD and CRPS) Reflex Sympathetic Dystrophy (Complex Regional Pain Syndromes Type I) and Causalgia (Complex Regional Pain Syndromes Type II)(RSD and CRPS)

i hate crps

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Unread 05-03-2012, 06:21 PM   #1
mommystime2
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Default i hate crps

its has changed my life way too much. i cry daily, i cant do a darn thing for myself and i falling apart!
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"Thanks for this!" says:
birchlake (05-03-2012)
Unread 05-03-2012, 06:28 PM   #2
birchlake
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This is a good place to come to for support. You are not alone. Sometimes it gets to a point where you just don't know what you are going to do.

What are your biggest fear and concerns? I assume by your name that you have kids. How is this affecting them and you with your ability to care for them?

Are you seeing a pain management doctor to help you control your pain? What therapies are you using? What are your worst symptoms?

If you let us know some details, we can let you know how we treat those symptoms. CRPS is certainly unique, but I can tell you that I've learned a LOT from this forum and am very thankful for it!
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Unread 05-03-2012, 06:38 PM   #3
mommystime2
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i asked my pcp in jan 4 another opinion with meds he sent me to a nurologist who just gave me more meds and a horrible bone scan...which was good thank god...saw pcp again earlier this week idk mon or tues he increased some meds shook my hand and walked...so unlike him but oh well...see nurologist again on may 16th. i amd now on 600mg gabapentin 3xday, 200mg tegretol 2xday, and lidocaine ointment or this horrible capsian cream nobody told me not to shower with...major burn from that, im waiting for my bio skin sleeve to be ready by hopefully end of month. its my right arm n hand affected, which is my do everything hand so when it hurts im donel, completely. family tries to help but then i feel useless and hurt inside. i hold it inmost days but somedays i just wanna scream yes im hungry yes clean that up yes i need help cant they look around and see?
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Unread 05-03-2012, 06:54 PM   #4
LIT LOVE
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I'd research the Capsacin cream, I don't think it is prescribed for RSD. I had it prescribed by a doc I saw for a short time many years ago. Sorry to hear you weren't warned about the problem with warm water, which opens your pores. (I thought it was listed on the sheet of info?) The problem with it IMO, is you're applying it to to an area that is already dysfunctional. I hated it and only tried it a few times.
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Unread 05-03-2012, 07:00 PM   #5
mommystime2
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im never using it again! lol lidocaine doesnt do much either tho
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Unread 05-03-2012, 08:02 PM   #6
LIT LOVE
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Quote:
Originally Posted by mommystime2 View Post
im never using it again! lol lidocaine doesnt do much either tho
Trying use the lidocaine just for flares, or if you experience an injury to another area. I feel the cream is stronger initially, but the patches work better. I find they lose effectiveness if worn more than once or twice a week. It's a good thing to have as an option, but is not helpful to rely on daily,IMO. Test how what works best for you!

http://www.rsdfoundation.org/clinica...elines_pf.html
This link state's Capsacin isn't proven to be effective for RSD, though some claim they experience a reduction of pain if it's used consistently (it's supposed to lower substance p).
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Unread 05-04-2012, 09:40 PM   #7
painman2009
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we know the pain del so here is where u should come to vent. in my house my kids and wife are no longer aloud to ask if I'm alright.(hello the answer is no) and I doubt the answer is something that would make them feel good about. I was the go to guy of the house. its broke i fix it it needs a deep clean I'm your man. organize and big job . thats me. outside inside money, the hard things such as going to work job1 working business job2 and making plays rehearsals. np. now Im missing out on their life and mine. I am only a fraction of the person I was and I live masking how much pain I really feel to make others more comfortable. but still have days where the fight of masking it is too much and I break down. ........This is our story here and others may be better while others are worse but here you have a different kind of family where you can express your pain and despair. advice is given freely here and is so helpful. with out sites like this is how I can live day by day and find a smile for friends and family. good luck to you.
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Unread 05-05-2012, 07:56 AM   #8
mommystime2
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thank god every day my husband is in good health..basically. we recently found out when he has to be out of work a week it sets us back months. they dont ask if im alright, they just saw let me do it or want help? grrrr if im struggling then yes i need help if u see me crying from then do it for me. i already feel like an invilid. they know i csnt zip my coat or wash my hair or tie my shoes or use a can opener...i cry i blow up because i have no other way, i tried just going to bed and they bug me so that dont work. i miss out on school things for fear of being bumped or its too cold out to go. i cant reel in a fish anymore so fishing is out too
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Unread 05-05-2012, 10:54 AM   #9
saraleeCRPS
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Default mommystime2

CRPS wow where do I start. June of last year my exhusband who talked me into going back to him 11/10 and 7 months later left me after I had foot surgery for the same thing removal of ganglianm cysts 3rd surgery, except this one left extensive scar tissue and severe never damage which in turn caused lack of blood flow. I was depressed, felt like a fool for trusting him. Its why I divorced him...I know. So foot is swelling, sting, burning, back of neck and down ARM same thing. Went to Dr steroids and predisone packs. Oh and I was working at home depot have for 6 years, or should I saw worked. Being on concrete for 8 to 9 hours a day lifting anything that needed lifting. Oh let's just say it didn't help. PAIN INCREASED AND SO DID DEPRESSION. THEN on February 20th I was at worked and my oldest brother and his wife came in to surprise me with a visit on their way to my moms in Gatesville and I mean not even 20 minutes my cell rang tut was 10:34 am it came up Jessie lee ICE.......my oldest daughter who had gone out of town so I answered as I stepped into ISLE 38, JESSIE SWEETHEART mommas on the floor and I remember this lady saying are you Jessies mother, I'm like yes who is this and why are you asking me this. NEXT, there's been an accident I need you to listen to me, at this point I'm losing it, she says were there any children with Jessica I'm like NO my granddaughter is with her other grand parents, what has happened?...she says there's been a terrible accident. All I can say is my baby alive. She says mam I don't know its really bad. Well I'm screaming no repeatedly they get me to the office where I hit the floor. I'm in waco this is close to Tyler. They have some one drive me to Tyler where she was care flighted ETMC where that was mmy home until 3/6/11 when I lost her to severe head trauma. The 5th I had to make the decision to turn the machines off. It only took 12 hours for her to go. So where I'm going with this the surgeries and deep chronic depression from the loss of my first beautiful baby fuel age 28 mother to my Katy bug. CRPS hit on me like nobodys business. Except I had no idea what was going on with my body the pain in my heart hurt so bad on top of pain elsewhere like I have never felt it. I was off work from 2/20 til 8/1 and by 8/7 a manager was driving me to DePaul where I admitted myself . Once I was out tried to worked chronic depression was always there still is but the pain **** how it was striking my body I just ssi gotta take off. I missed so many hrs. Then I decideded to moved to Austin as soon as I got here went to my specialists ortho and all he said when he looked ay my foot was I sending you to see some budduies of mines, he was cryin due to hearing about my loss but in the same breath he new what I had but he couldn't tell me. It's November now...my life after seeing these doctors pain specialists has consisted of major tests, pain meds, mri, xrays, nerve test and 9 injections. I hurt more now than I did. Nothing helps and I am emotionally, mentally and physically broke down. My life will never be thhe same after losing my child but now suffering this monster disease on top of that.....unbearable.
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