It appears you have not yet Signed Up with our community. To Sign Up for free, please click here....



Reflex Sympathetic Dystrophy (RSD) (CRPS) Message Board


Reflex Sympathetic Dystrophy (RSD) (CRPS) Board Index


Hi Snowman--I was diagnosed w/ RSD after my first carpul tunnel/trigger finger surgery in 1999. I was put on heavy doses of neurontin for the 1st
1 1/2yrs & finally went to a pain specialist who was my saving grace! RSD had me literally screaming when the ice pack melted or was taken off and the burning & pain, swelling, lack of sleep, guarding my hands constantly, & lack of being able to use my hand/fingers at all (hand therapy for months just to be able to write or hold anything or bend my fingers, which was excruciating!) I've had heavy pain all over my body w/ fibromyalgia, sciatic nerve, fractures from osteoporosis, neuropathy from diabetes, myofascial pain & pinched nerves, etc, etc, [U]BUT [/U]I have to say that [B]RSD was the all time most intense.[/B]
Ok, now that I've qualified how bad it is, I'll tell you what made the difference for me. Neurontin made me lose my memory & made me very depressed & made it very difficult to run a business in which I was very busy & usually very sharp, but I struggled to function. So after getting down to 300 mg/day & the doc doing a psych test on me, asking what day is it, the president, and other pertinent questions to reality, he took me off it. two weeks later he said I was like a different person.
The pain specialist started to see me with all the different things I had going on & said I was a complicated mess all over my body. He did stellate ganglion nerve blocks under propofol or verced (about 10-12 blocks for each side) b/c I ended up w/ RSD on the other side when the other carpul tunnel was done 2 yrs later. This made all the difference in the world! They say RSD usually goes away w/in the first 1 1/2 years, but mine didn't until I had the nerve blocks. I only get little bits of burning or breakthrough pain if I use my hands alot, like on the computer, watering the yard, doing a lot of cooking, etc) but it's been a miracle for me.
I know the pain docs usually give a sleeping pill when you can't sleep b/c you keep waking up from pain, but I couldn't take them otherwise I wouldn't wake up if my blood sugar got low. I was tried on every narcotic and every muscle relaxant in the first year and a half and can only tolerate codeine & flexeril & add 800mg of motrin for joint pain, headaches, stiffness...

My pain specialist started using "medical foods" 2 yrs ago that are helping to get a lot of patients almost completely off their narcotic pain meds, so that another suggestion to look into. I heard patients talking last week about 2 new creams that have lyrica (pregabalin) & neurontin(gabapentin) in them, instead of taking a pill, & they said they were working great after trying samples. The medical foods are broken down so much that even w/ the food allergies that I have, the amino acid formulation could be taken without allergy problems, but it was my other doc not wanting me take them due to my kidneys (from 45 yrs of type1 diabetes), so I didn't try them.. The company that makes these is Physicians Therapeutics in Los Angeles, CA & the doctors are able to fill the RX in their office & bill insurance for you, so they are not in the pharmacy. I was given these 2 yrs ago: theramine, trepadone and gabadone for sleep, pain & joint pain/arthritis. You can. look up their products online and show your doctor
Don't know if you'll want to do this for RSD, but for my other pain it's great. Here's another thing I do to relieve muscle, nerve, joint pain---take a tall sock and put white rice in it & tie a knot at the end. Microwave it for no more than 2 min. & it will give you moist heat for 1+hrs. Usually within about 5-10 min I can feel it kill burning on my leg or muscle spasms & pain in my back, on my butt (trigger points & sciatic nerve) or anywehre you have pain. that usually puts me to sleep. After an hour, I microwave it for only 1/2 the time. Change the rice & wash the sock every few months.

Betamethasone used with electrical stimulation at hand therapy was helpful in lessening pain, & the hot wax dips were helpful in getting my fingers to move (these are available for home use now). Specialized hand therapists are the best to treat RSD w/ the hands, not a general physical therapist in my opinion. Just my 10 cents for now. Hope that helped and it was probably more than you bargained for! Best wishes!
[QUOTE=verycomplicated;5181098]Hi Snowman--I was diagnosed w/ RSD after my first carpul tunnel/trigger finger surgery in 1999. I was put on heavy doses of neurontin for the 1st
1 1/2yrs & finally went to a pain specialist who was my saving grace! RSD had me literally screaming when the ice pack melted or was taken off and the burning & pain, swelling, lack of sleep, guarding my hands constantly, & lack of being able to use my hand/fingers at all (hand therapy for months just to be able to write or hold anything or bend my fingers, which was excruciating!) I've had heavy pain all over my body w/ fibromyalgia, sciatic nerve, fractures from osteoporosis, neuropathy from diabetes, myofascial pain & pinched nerves, etc, etc, [U]BUT [/U]I have to say that [B]RSD was the all time most intense.[/B]
Ok, now that I've qualified how bad it is, I'll tell you what made the difference for me. Neurontin made me lose my memory & made me very depressed & made it very difficult to run a business in which I was very busy & usually very sharp, but I struggled to function. So after getting down to 300 mg/day & the doc doing a psych test on me, asking what day is it, the president, and other pertinent questions to reality, he took me off it. two weeks later he said I was like a different person.
The pain specialist started to see me with all the different things I had going on & said I was a complicated mess all over my body. He did stellate ganglion nerve blocks under propofol or verced (about 10-12 blocks for each side) b/c I ended up w/ RSD on the other side when the other carpul tunnel was done 2 yrs later. This made all the difference in the world! They say RSD usually goes away w/in the first 1 1/2 years, but mine didn't until I had the nerve blocks. I only get little bits of burning or breakthrough pain if I use my hands alot, like on the computer, watering the yard, doing a lot of cooking, etc) but it's been a miracle for me.
I know the pain docs usually give a sleeping pill when you can't sleep b/c you keep waking up from pain, but I couldn't take them otherwise I wouldn't wake up if my blood sugar got low. I was tried on every narcotic and every muscle relaxant in the first year and a half and can only tolerate codeine & flexeril & add 800mg of motrin for joint pain, headaches, stiffness...

My pain specialist started using "medical foods" 2 yrs ago that are helping to get a lot of patients almost completely off their narcotic pain meds, so that another suggestion to look into. I heard patients talking last week about 2 new creams that have lyrica (pregabalin) & neurontin(gabapentin) in them, instead of taking a pill, & they said they were working great after trying samples. The medical foods are broken down so much that even w/ the food allergies that I have, the amino acid formulation could be taken without allergy problems, but it was my other doc not wanting me take them due to my kidneys (from 45 yrs of type1 diabetes), so I didn't try them.. The company that makes these is Physicians Therapeutics in Los Angeles, CA & the doctors are able to fill the RX in their office & bill insurance for you, so they are not in the pharmacy. I was given these 2 yrs ago: theramine, trepadone and gabadone for sleep, pain & joint pain/arthritis. You can. look up their products online and show your doctor
Don't know if you'll want to do this for RSD, but for my other pain it's great. Here's another thing I do to relieve muscle, nerve, joint pain---take a tall sock and put white rice in it & tie a knot at the end. Microwave it for no more than 2 min. & it will give you moist heat for 1+hrs. Usually within about 5-10 min I can feel it kill burning on my leg or muscle spasms & pain in my back, on my butt (trigger points & sciatic nerve) or anywehre you have pain. that usually puts me to sleep. After an hour, I microwave it for only 1/2 the time. Change the rice & wash the sock every few months.

Betamethasone used with electrical stimulation at hand therapy was helpful in lessening pain, & the hot wax dips were helpful in getting my fingers to move (these are available for home use now). Specialized hand therapists are the best to treat RSD w/ the hands, not a general physical therapist in my opinion. Just my 10 cents for now. Hope that helped and it was probably more than you bargained for! Best wishes![/QUOTE]
Thank you it sounds like you've been through the ringer ( wow) thanks for sharing your story I've been doing SGNBs every 10 days for 1 and a half years it's getting old the versed works less and less the last time they injected me 3 times but when they hit the bone I want to jump off the table . I want to do the spinal cord stimulater next the RSD pain is there in both feet constantly but I keep fighting this really helps to have others to talk to snowman 2





All times are GMT -7. The time now is 06:19 AM.





© 2020 MH Sub I, LLC dba Internet Brands. All rights reserved.
Do not copy or redistribute in any form!