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 01-10-2012, 07:58 PM #1
89danboy 89danboy is offline
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Confused . My Drs liscense was suspended.and my rsd is out of control. Any referrals?

It took me years to find a dr to treAt my pain. Now he can't practice til further notice.that was back in june 2011.still closed. I went to a pain mgnt office in eht nj. Where I live and put me on low dose percs & a couple 10 mgs methadone.and took away one pill every o
Month.I stayed with the methadone10mgs 2aday.only because of its half life.wouldn't have any wd from such a low dose. I'm sure it would happen with only 2/ 10 mg percocet.anyway here is a quick story to show u guys my problem. I'm an iron worker in ac nj.I had a fall in 08. Shattered heel . Comp fracture in my back.& severely broken wrist.it took me 12 months of rehab 4 days a week for. 4hours aday. Cause of the.3 injuries. Anyway I couldn't under stand why I had so much pain still.I was on alot of opiates when I went back to work.after a year of that my pain was so bad and I didn't get off the couch for 3 months.rsd took over every organ of my body. Took 16 drs and 3years later to finally see dr scwartzmann. Kettamine treatments outpatient 10 days.I lost 23 pounds in the 2 weeks from that kett. Injs.that was in august of 2011.now I'm waiting for my workers comp to see if they can pay for more.I paid them up in two this point but now I cant afford anymore.paid 8000, so far.I was on 30mgs x4 oxycodone. Methadone70 mgs aday .and duragesic patch the year I was working.my new pm is a nurse practioner and doesn't really understand rsd and is a *****. I saw dr gettson two weeks ago and I love the guy,what a great attitude.he knew everything about my disease.he said he gives 120mgs or more if methadone. to his patients and to find someone else til my disability Or workers comp judgement .and I can see him. On thus dose now I have no life.atleast befor I could do a couple things I could do once in awhile and not have the pain.any suggestions.I'm sure all of u know how hard it is to find the rite dr.I wish all of you the best and healthiest life possible.I know and feel what all of u r go n thru.I stayed off of meds for 8 months befor I was diagnosed with rsd and it was hell. Then I had my gull bladder and stones removed cause of the severe abdominal pain.I didn't know it wasted at the time. But it is a fact . That living with rsd on the rite medicine makes life so much better then being without it and in pain and depression all the time. Anyway . I love all of you and hope you have proper medical treatment.

Last edited by 89danboy; 01-10-2012 at 10:18 PM. Reason: Spelling and mis leading area
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Old 01-11-2012, 05:43 AM #2
gabbycakes gabbycakes is offline
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Quote:
Originally Posted by 89danboy View Post
It took me years to find a dr to treAt my pain. Now he can't practice til further notice.that was back in june 2011.still closed. I went to a pain mgnt office in eht nj. Where I live and put me on low dose percs & a couple 10 mgs methadone.and took away one pill every o
Month.I stayed with the methadone10mgs 2aday.only because of its half life.wouldn't have any wd from such a low dose. I'm sure it would happen with only 2/ 10 mg percocet.anyway here is a quick story to show u guys my problem. I'm an iron worker in ac nj.I had a fall in 08. Shattered heel . Comp fracture in my back.& severely broken wrist.it took me 12 months of rehab 4 days a week for. 4hours aday. Cause of the.3 injuries. Anyway I couldn't under stand why I had so much pain still.I was on alot of opiates when I went back to work.after a year of that my pain was so bad and I didn't get off the couch for 3 months.rsd took over every organ of my body. Took 16 drs and 3years later to finally see dr scwartzmann. Kettamine treatments outpatient 10 days.I lost 23 pounds in the 2 weeks from that kett. Injs.that was in august of 2011.now I'm waiting for my workers comp to see if they can pay for more.I paid them up in two this point but now I cant afford anymore.paid 8000, so far.I was on 30mgs x4 oxycodone. Methadone70 mgs aday .and duragesic patch the year I was working.my new pm is a nurse practioner and doesn't really understand rsd and is a *****. I saw dr gettson two weeks ago and I love the guy,what a great attitude.he knew everything about my disease.he said he gives 120mgs or more if methadone. to his patients and to find someone else til my disability Or workers comp judgement .and I can see him. On thus dose now I have no life.atleast befor I could do a couple things I could do once in awhile and not have the pain.any suggestions.I'm sure all of u know how hard it is to find the rite dr.I wish all of you the best and healthiest life possible.I know and feel what all of u r go n thru.I stayed off of meds for 8 months befor I was diagnosed with rsd and it was hell. Then I had my gull bladder and stones removed cause of the severe abdominal pain.I didn't know it wasted at the time. But it is a fact . That living with rsd on the rite medicine makes life so much better then being without it and in pain and depression all the time. Anyway . I love all of you and hope you have proper medical treatment.
89danboy,

Wow, that's not the first time I have heard of a doctor in NJ losing is license to practice PM. That's really terrible for you I hope you are doing okay, I also live in NJ way up north, near Mountain Creek, the ski area. I don't know of any doctors in your area but I'm sure someone will hop on with some names. You stated that you are going to have additional ketamine with Dr. Schwatzman or Dr. Getson once your insurance comes through, maybe you can asked there offices for a referral. I know some doctors don't like to do that. It was very hard to me to change from my doctors in NYC. I only switched because it was a hard commute it's an hour and a half without any traffic and I really did not need to go all the way into NYC at this point. I tried on my own and it was impossible, I shouldn't say impossible but hard to find someone who knew anything about RSD. I finally asked my PM doctor in NY to help me and he did and my new PM doctor is great and does work closing with my doctors in NY so it worked out. But it was a little scary.
I wish you the best with the ketamine treatments. I have done ketamine 3 - 5 day in-patient in NYC and boosters with Dr. Schwartzman. It did a great job haulting the spread, lessened the migraines, helped with the pain and allowed me to get off 99% of all the meds. I was on. I did the protocol boosters and then a few more after that but haven't had a booster since Jan 08 and have been doing okay. Had to have a few epidurals for my back which just worked great and haven't even had an epidural it will be 2 years in April. So all in all I would say it was a success. You will read on here that many do boosters continuously. For me even though the ketamine definitly saved me we don't get along lets say. I get severe nausea during the treatments which ofcourse they treat but I still get horribly sick. I remember during one of my inpatients especially the first and second day when the drug is introduced to your body I really get sick. My husband asked for a bucket so I could p...... and she brought in one of those little pink things that look like a kidney bean and he said to her " she's going to need way more then this", it was just horrible. I really never had hallucinations maybe the first one but positive not the nightmares some have. Sorry for the rambling I haven't had any time to read or post in a while you are the first. My husband's mom is very, very sick with cancer and it's just been a nightmare. Today is the first day in months that I can stay home and catch up. I wish you the best keep the faith. This site has some really wonderful people who I'm sure will give you some great names of doctors.

Nice to meet you,

Gabbycakes
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cindi1965 (01-12-2012)
Old 01-11-2012, 11:06 AM #3
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you can check rsd.org they have a list of drs or american rsd.
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GOD help me be faithful in the midst of my suffering. Alt1268
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Old 01-11-2012, 03:59 PM #4
89danboy 89danboy is offline
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Default Thanks gabby

]89danboy,yes the treatments are a bit scary at times with all of the hallucinations. The 10 day out patient made me Lise all of my inflamattion weight I put on . But didn't help me with all of my ailments til about a 2 weeks after treatment and then I was sold on how it really does work. Hope your mother inlaw is beating her cancer, I'm going thru that now with my mother now also. Breast cancer. Great to know how much u recovered from rsd. Thanks for the message gabblycakes

Wow, that's not the first time I have heard of a doctor in NJ losing is license to practice PM. That's really terrible for you I hope you are doing okay, I also live in NJ way up north, near Mountain Creek, the ski area. I don't know of any doctors in your area but I'm sure someone will hop on with some names. You stated that you are going to have additional ketamine with Dr. Schwatzman or Dr. Getson once your insurance comes through, maybe you can asked there offices for a referral. I know some doctors don't like to do that. It was very hard to me to change from my doctors in NYC. I only switched because it was a hard commute it's an hour and a half without any traffic and I really did not need to go all the way into NYC at this point. I tried on my own and it was impossible, I shouldn't say impossible but hard to find someone who knew anything about RSD. I finally asked my PM doctor in NY to help me and he did and my new PM doctor is great and does work closing with my doctors in NY so it worked out. But it was a little scary.
I wish you the best with the ketamine treatments. I have done ketamine 3 - 5 day in-patient in NYC and boosters with Dr. Schwartzman. It did a great job haulting the spread, lessened the migraines, helped with the pain and allowed me to get off 99% of all the meds. I was on. I did the protocol boosters and then a few more after that but haven't had a booster since Jan 08 and have been doing okay. Had to have a few epidurals for my back which just worked great and haven't even had an epidural it will be 2 years in April. So all in all I would say it was a success. You will read on here that many do boosters continuously. For me even though the ketamine definitly saved me we don't get along lets say. I get severe nausea during the treatments which ofcourse they treat but I still get horribly sick. I remember during one of my inpatients especially the first and second day when the drug is introduced to your body I really get sick. My husband asked for a bucket so I could p...... and she brought in one of those little pink things that look like a kidney bean and he said to her " she's going to need way more then this", it was just horrible. I really never had hallucinations maybe the first one but positive not the nightmares some have. Sorry for the rambling I haven't had any time to read or post in a while you are the first. My husband's mom is very, very sick with cancer and it's just been a nightmare. Today is the first day in months that I can stay home and catch up. I wish you the best keep the faith. This site has some really wonderful people who I'm sure will give you some great names of doctors.

Nice to meet you,

Gabbycakes[/QUOTE]
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Old 01-12-2012, 06:28 AM #5
gabbycakes gabbycakes is offline
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Quote:
Originally Posted by 89danboy View Post
]89danboy,yes the treatments are a bit scary at times with all of the hallucinations. The 10 day out patient made me Lise all of my inflamattion weight I put on . But didn't help me with all of my ailments til about a 2 weeks after treatment and then I was sold on how it really does work. Hope your mother inlaw is beating her cancer, I'm going thru that now with my mother now also. Breast cancer. Great to know how much u recovered from rsd. Thanks for the message gabblycakes

Wow, that's not the first time I have heard of a doctor in NJ losing is license to practice PM. That's really terrible for you I hope you are doing okay, I also live in NJ way up north, near Mountain Creek, the ski area. I don't know of any doctors in your area but I'm sure someone will hop on with some names. You stated that you are going to have additional ketamine with Dr. Schwatzman or Dr. Getson once your insurance comes through, maybe you can asked there offices for a referral. I know some doctors don't like to do that. It was very hard to me to change from my doctors in NYC. I only switched because it was a hard commute it's an hour and a half without any traffic and I really did not need to go all the way into NYC at this point. I tried on my own and it was impossible, I shouldn't say impossible but hard to find someone who knew anything about RSD. I finally asked my PM doctor in NY to help me and he did and my new PM doctor is great and does work closing with my doctors in NY so it worked out. But it was a little scary.
I wish you the best with the ketamine treatments. I have done ketamine 3 - 5 day in-patient in NYC and boosters with Dr. Schwartzman. It did a great job haulting the spread, lessened the migraines, helped with the pain and allowed me to get off 99% of all the meds. I was on. I did the protocol boosters and then a few more after that but haven't had a booster since Jan 08 and have been doing okay. Had to have a few epidurals for my back which just worked great and haven't even had an epidural it will be 2 years in April. So all in all I would say it was a success. You will read on here that many do boosters continuously. For me even though the ketamine definitly saved me we don't get along lets say. I get severe nausea during the treatments which ofcourse they treat but I still get horribly sick. I remember during one of my inpatients especially the first and second day when the drug is introduced to your body I really get sick. My husband asked for a bucket so I could p...... and she brought in one of those little pink things that look like a kidney bean and he said to her " she's going to need way more then this", it was just horrible. I really never had hallucinations maybe the first one but positive not the nightmares some have. Sorry for the rambling I haven't had any time to read or post in a while you are the first. My husband's mom is very, very sick with cancer and it's just been a nightmare. Today is the first day in months that I can stay home and catch up. I wish you the best keep the faith. This site has some really wonderful people who I'm sure will give you some great names of doctors.

Nice to meet you,

Gabbycakes
[/QUOTE]

Nice to meet you also. I also hope your mom is recovering from her breast cancer unfortunitly for my MIL that is not going to happen she is on hospice care and suffering at this point it's just so heart breaking.

I was very lucky to get the treatment I did. It took time to find the right doctors.

gabbycakes
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Old 02-16-2012, 10:17 PM #6
89danboy 89danboy is offline
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Default Thanks gabby :)

So sorry to hear about your mil, hope she gets well and docent suffer . My mom is doing well , thankyou for asking,she is done her chemo, now she starts her rad next week. I was granted my ss bennys a few weeks ago, that is such a relief.also my workmans comp case looks pretty promising also, I saw the wc doctor and she wrote a report stating that my fall from work us without a doubt the cause of my rsd and also said I nerd kettamine treatment mimediately,I saw dr gettison in cherry hill.and he has me feeling soo much better.I didn't even have my kett injs yet.not since sept either.about 3 weeks ago I guess they call it a flare up,I had the most painful burning itching for a couple weeks.I was scratch n so hard I would drawl blood ,10 days of medrol cleared it up . Thank god.hope you are feeling healthy and pain free gabby
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Old 02-19-2012, 06:03 AM #7
gabbycakes gabbycakes is offline
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So sorry to hear about your mil, hope she gets well and docent suffer . My mom is doing well , thankyou for asking,she is done her chemo, now she starts her rad next week. I was granted my ss bennys a few weeks ago, that is such a relief.also my workmans comp case looks pretty promising also, I saw the wc doctor and she wrote a report stating that my fall from work us without a doubt the cause of my rsd and also said I nerd kettamine treatment mimediately,I saw dr gettison in cherry hill.and he has me feeling soo much better.I didn't even have my kett injs yet.not since sept either.about 3 weeks ago I guess they call it a flare up,I had the most painful burning itching for a couple weeks.I was scratch n so hard I would drawl blood ,10 days of medrol cleared it up . Thank god.hope you are feeling healthy and pain free gabby
Dan,

Congrats. on the SS benefits, it truly is a lifesaver.

So glad for your Mom, unfortunately for my MIL she is, I don't even know the words, just terrible. We are trying are best to keep her home but it is getting difficult. My husband is an only child and only has his cousin and wife, who are actually doing the duties today for us so we can recoup. We do have a nurse and a nurses aid through hospice and then we pay the aid to stay and make sure she at least eats something, showers her, change the bed blah, blah, blah and my husband and I take care of the rest. We live an hour plus away from her and ofcourse my husband works so it's a lot of running. And on top of the busy lifes we lead already, please I could just go on and on. I hope this suffering just ends for her soon. It's so unfair.

Gabbycakes
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