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 08-31-2016, 09:18 PM #1
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Default surgery total shoulder replacement

i had total shoulder replacement and the pain is like holy cow right on top i had it on August 24 an they want me to cut down on pain meds but RSD is fire right up they only gave me 4mg of Dilaudid every 4 hrs an only pills for 7 days so i called for refill an they hit the **** fan about so i said find do or don't refill if i don't get i don't care i tried of being just a number an i will have my wife drive to the hospital or have the hospital move me then but the pain is at a 10 and my whole arm is burning. talk to my PM Doctor about what was going on she said she sent a letter an to help them treat me. she said that she would get a call in to the doc who did the surgery to help. i'm so tried of fighting to get help
and have beg because i do not fit the norm. every time i keep tell them that i RSD they look at as its no big deal. i wish i could take torch with me an fire it up say them you hold your hands on the flame an hold it there for 5mins so i can say suck it no big deal so too vent but i'm going out of mind.
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Old 09-01-2016, 06:34 AM #2
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Quote:
Originally Posted by RSD31 View Post
i had total shoulder replacement and the pain is like holy cow right on top i had it on August 24 an they want me to cut down on pain meds but RSD is fire right up they only gave me 4mg of Dilaudid every 4 hrs an only pills for 7 days so i called for refill an they hit the **** fan about so i said find do or don't refill if i don't get i don't care i tried of being just a number an i will have my wife drive to the hospital or have the hospital move me then but the pain is at a 10 and my whole arm is burning. talk to my PM Doctor about what was going on she said she sent a letter an to help them treat me. she said that she would get a call in to the doc who did the surgery to help. i'm so tried of fighting to get help
and have beg because i do not fit the norm. every time i keep tell them that i RSD they look at as its no big deal. i wish i could take torch with me an fire it up say them you hold your hands on the flame an hold it there for 5mins so i can say suck it no big deal so too vent but i'm going out of mind.

Don't they have you on any anti-seizure meds (those are the best for nerve pain). Just asking. Heavy duty meds, like "narcotics" aren't the primary med for RSD as they can only take away a certain percentage of the pain. I'm surprised at this.
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Work related (car) accident September 21, 1995, consequences:
- chondromalacia patellae both knees
- RSD both legs (late diagnosis, almost 3 years into RSD) & spread to arms/hands as of 2008
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Old 09-01-2016, 09:28 AM #3
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Hello,

I am sorry you are going through such a very rough time. Shoulder replacement can't be easy on people who don't have CRPS. Having your pain so high is exhausting on so many different levels.

I agree that anti-convulsant meds like neurontin could be helpful right now if you aren't already taking them. In fact 900mg pre-op is even recommended by Stanford to help prevent chronic pain. Getting something on board now could help calm your nervous system.

Things your care team might consider are oral steroids, nerve blocks of some kind or a ketamine infusion.

Are you taking anti-oxidants like Vti. C post-op to help decrease inflammation? 500mg daily for 4-6 weeks is the post op orthopedic recommendation to help CRPS.

It sounds like your PM is being helpful and I'm glad of that. Know that many thoughts of healing are coming your way. I hope your body settles and recovers soon.
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Old 09-01-2016, 09:51 AM #4
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They have to understand that the pain isn't like normal post op pain!!! And Dilaudid wears off before 4 hours.
I agree you need Neurontin/Gabapentin in high doses to handle the nerve stuff. My doc also added Tylenol to the Dilaudid which did help (seriously, it did) around the clock. And they gave me 6 mg of Dilaudid as well. And while we don't want to rely on the narcotics (I got the lecture too) we also don't want to keep building and reinforcing those pain pathways. I feel for you having also recently been in the hospital trying to explain this pain.
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Old 09-01-2016, 11:47 PM #5
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i take topmax 50mg 2 times a day i started the vit c today it seems that it is claiming down some.
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Old 09-02-2016, 04:40 AM #6
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i take topmax 50mg 2 times a day i started the vit c today it seems that it is claiming down some.
How long have you been taking the Topamax for, because it takes a while to get into your system to start being effective. These medications aren't "regular" pain medications in the sense that they work "immediately"... Hmm...
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All the best, Marleen
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Work related (car) accident September 21, 1995, consequences:
- chondromalacia patellae both knees
- RSD both legs (late diagnosis, almost 3 years into RSD) & spread to arms/hands as of 2008
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Old 09-02-2016, 03:29 PM #7
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been on it for 1 year
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