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)

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Old 01-10-2014, 11:13 AM #1
Willow_Makk Willow_Makk is offline
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Willow_Makk Willow_Makk is offline
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I don't know that there is a way to cope if you just drop all meds and treatments. This disease just gets worse and worse the longer you have it. Every doctor I have seen tells me that the quicker it is diagnosed and treated the more the damage can be retarded.
I have had CRPS/RSD for 7 years and the best thing I have found is Ketamine infusions. They gave me back my normal pain free life. When I started them 2 yrs after DX, 40% of my body had CRPS and the pain had me bedridden and suicidal. I was on 100mg of MS Contin 2x a day, 40mg of Oxycontin up to 6x a day, a 75mcg Fentynol patch, Lyrica, Clonodine, Neurontin, and Topamax. After 6 months of infusions the pain was back down to the original site and I was able to come off all the meds (with the help of Suboxone). After another 2 infusions even the Suboxone was gone. I went back to work and life went on normally except for that 1 day a month.
Don't give up Hun. The place you end up is not pretty. I know feeling like a guinea pig is not fun but you can find what works for you so you can at least manage the pain.

Willow
May you walk in the eye of your Gods!
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AZ-Di (01-10-2014), Hana (04-03-2014), RSD ME (03-12-2016)
Old 01-10-2014, 03:02 PM #2
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Quote:
Originally Posted by Willow_Makk View Post
I don't know that there is a way to cope if you just drop all meds and treatments. This disease just gets worse and worse the longer you have it. Every doctor I have seen tells me that the quicker it is diagnosed and treated the more the damage can be retarded.
I have had CRPS/RSD for 7 years and the best thing I have found is Ketamine infusions. They gave me back my normal pain free life. When I started them 2 yrs after DX, 40% of my body had CRPS and the pain had me bedridden and suicidal. I was on 100mg of MS Contin 2x a day, 40mg of Oxycontin up to 6x a day, a 75mcg Fentynol patch, Lyrica, Clonodine, Neurontin, and Topamax. After 6 months of infusions the pain was back down to the original site and I was able to come off all the meds (with the help of Suboxone). After another 2 infusions even the Suboxone was gone. I went back to work and life went on normally except for that 1 day a month.
Don't give up Hun. The place you end up is not pretty. I know feeling like a guinea pig is not fun but you can find what works for you so you can at least manage the pain.

Willow
May you walk in the eye of your Gods!
OMG, what an ordeal you've been through and so many meds !!
Thank you for your input & story.
So, how many Ketamine infusions over the 6 mo. period? Were you inpatient for them and if so, for how long were you admitted? Did insurance cover any part?
So far I'm able to avoid the narcotics except for P.T. Maybe I should wait until it gets that bad?
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RSD/CRPS and contracture of left hand and arm after surgery for broken wrist.
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