I NEED YOUR HELP!!! RSD/CRPS NEEDS TO BE CURED!! DOCTORS PLEASE HELP US!!! PLEASE TALK ABOUT IT!!! WE NEED INFO OUT THERE!!!
In 2006 I was diagnosed with RSD (Reflex Systematic Dystrophy), a very rare neurological disease affecting the sympathetic nervous system. In constant pain 24/7 at a level off-the-charts...365 days a year, there is no time-off. And no said cure. Now in my entire lower left limb - I cannot bend my left leg at all. I am either totally horizontal or totally vertical. RSD, both literally and figuratively took away everything I had, in an instant. Now completely homebound for almost now 3 yrs – I am unable to ride in the front seat of a car, do stairs, sit in a chair - and its all very hard to handle. Due to RSD and its resulting pain; I cannot have more than 3 people over at once, I do not leave here unless I have to go to the hospital, emergencies, MD, etc., and have not been able to attend any family/friend functions or holidays since 2006. Every vibration and sound sends me to the moon, and any trips out of the house are tortuous for both myself and the driver. Any additional stimuli added to my life or around me escalates the pain. No medical modalities', narcotics', opiates’ or ridiculous guinea pig treatments have been successful at diminishing my pain. Unfor its a disease you don’t know about till you get it. Worse yet, like most sufferers, we’ve lost many friends & family, etc. Refusing to give up - my husband, family & I continue to fight for whatever treatment('s) might help or work.
In April 2009, we were delighted that I was invited to join Beth Israel's Ketamine Infusion Program. On 4/16/09, I had my first Ketamine infusion and it changed my life in every way for the better!! Now monthly, I go in for outpatient infusions and it helps me with the pain tremendously!!! Its not a cure, as RSD will never go away, and I still have to deal daily, with RSDs "other side effects" but it IS a treatment we found that works for ME & my pain in my particular case. I can only thank God and all the prayers for getting me here today, as without him or them, I would not have made it this far.
Able to now drive again, get out (of my house & bed!), travel, even tinkering at the gym when ever possible - I am now a work in progress =) and learning to love living life again!!
God is Good ♥
PLEASE HELP US RSD SUFFERERS WITH YOUR KNOWLEDGE! THE WORLD NEEDS TO KNOW ABOUT US!! PLEASE HELP US!!!
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Hey,
I too have RSD. Have you tried Neurontin? I imagine you have but if you haven't you may want too! I had lost use of my right arm because of undiagnosed RSD. I was diagnosed and put on Neurontin 300 mg 3x a day plus put into aggressive occupational therapy for desensitisation. This has helped to give me back use of my arm. I can now use my hand and arm. I do have to do exercises everyday to help keep it desensitized but it has helped. I would see if you can do some OT if you haven't this may help. I would also try the Neurontin if you haven't they can go all the way up to 900 mg 3x a day. I hope this helps because I know what your going through and its not fun!
Brianna
I was diagnosed with this earlier this year and it has been a horrible. It was in my left arm and has spread to both of my legs. The pain is unimaginable and I always feel like I am on fire. I have tried numerous medications and blocks to help the pain. The blocks were only temporary and lasted a few hours. All other medication that I have tried has not helped. The skin discoloration is embarassing. My Drs are now in the process of trying to get me a spinal cord stimulator as they feel I have nothing really left to try. I am a young mother and this has ruined my life! I feel for you and anyone else who has to go through this.
I'm 45 yrs old & went almost 3 yrs before getting a diag..A mass developed on my left hand, ring finger several yrs prior when I was a deaf interpreter, It became large & painful.After many dr's had no ideal what the mass in my blood vein was one suggested me to allow him to biopsy it & find out. I did Dec 17, 2007.The surrounding tissue & fluid was lost so he had no ideal what it was.A few months later I began to have electrical shocking sensation in that arm. I had no ideal what this was from, assuming it was from my neck problem. Then the left arm & hand began to feel as though it was about to pop, my hand would turn blue, swell & feel as though it was in a fire. I went to several different dr's & they told me they didn't know.. When I was at a neuro to get ready to have a nerve block for to try & get relief from the neck pain & migraines my left hand began to swell & turn blue & I was again in agony. He seen it & said it was RSD. That was in 2010. I had 5 blocks for the RSD along with trying the neurontin &many other nerve pain meds & pain meds with no relief. My BP has always ran 120's/60's unless I was in pain. Three months ago each time I went to the dr I was iin so much pain that my bp was up. They put me on BP meds. I had no ideal until reading about RSD myself that the spiking in BP & heart rate is due to the RSD. Last night after I got ready to go to church I felt dizzy & lght headed. I sat down & checked my BP. It was 89/64. And I had forgotten to take my BP meds yesterday. Tthey are wanting to do the nerve stimulation pump. I pray the DR's Show would do a show bringing awareness about this very painful problem.. I have vey little quality of life.. I've always been the one to try & help others & now I'm asking for help. PLS DO A SHOW ABOUT RSD/CRPS.. I'm trying to stay hopeful even though I feel hopeless.
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