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 07-24-2016, 08:17 AM #21
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I'm sorry this didn't work out for you...I was really hoping that it would...but better to know now than after it is implanted. I've had my share of disappointment following various treatments and I know how hard that can be. Hugs.
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Old 07-25-2016, 11:15 PM #22
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hi alaina. i'm sorry the scs didn't work out for you. i hope that your pm dr can help manage your pain another way so that you can deal with your rsd pain better. i am still relying mainly on meds from my pm dr to help manage my rsd pain. not ready for trial scs yet if ever. it scares me. but i am proud of you for your courage. don't give up hope that there is something that can still help you with your pain. soft hugs coming your way my friend.
i am also sorry i took so long to respond to your post. i have been having some problems of my own and have been off site for a while. hope you feel better soon.
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Old 07-26-2016, 09:47 PM #23
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I knew that there was a very high chance that this was only going to make things worse going into the trial but I felt I had to take that chance. It did cause a flare in both legs but that has calmed down some. I have been arguing with my PM for some time about CRPS spreading. He does not believe that it does, which makes me a little weary of his knowledge of CRPS. Maybe he will learn some from this experience. Although he may not be as knowledgeable about CRPS as he thinks he is, he has done more help for me than any other doctor that I have been to so far.

I have decided to let him try another procedure even though I question his knowledge. On September 12, I begin a 5 day outpatient Ketamine infusion. As the time nears, I will likely start another thread to share my experiences through that.

Thank you all for your support through this even though it did not help.
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Old 07-27-2016, 01:13 AM #24
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hi alaina. your dr sounds like he is trying different things that are used for rsd, but from what have lived and learned from rsd is that if definitely can spread. my neurologist didn't seem to thinks so but my pm dr did and after five years of living with this monster i know for a fact it does spread. your dr should read all the documentation of spread on this forum and online. the fact that he doesn't makes me think that he is just guessing and maybe if he were to try adjusting your meds, have you try light aqua therapy and pt then you may feel better and not have to go through all these extremely invasive and expensive procedures. i have never done ketamine either but know of others who have and it was not easy to tolerate and the effects didn't last. you may want to get a second opinion and also look for another pm dr who is more knowledgeable with rsd. otherwise he may just keep trying test after test which in my experience can cause more spread and infection of rsd. i am not a dr but it happened to me and my drs also warned me about invasive procedures. just be careful and whatever you decide to do i hope and pray that you feel better soon. soft hugs my friend.

p.s. i am not a dr and though i never tried ketamine i do know that everyone who had rsd responds differently to treatments so maybe it might help you. but that is something you and your drs have to decide. whatever you do decide i hope you find some pain relief soon. personally i try to do the least invasive things first and then if they don't work then i consider trying the next best treatment available with the help of my drs. hugs.
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Last edited by RSD ME; 07-27-2016 at 11:05 AM. Reason: added a p.s.
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Old 07-27-2016, 07:20 AM #25
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Letting you have ketamine infusions means he is knowledgeable; even knowledgeable doctors sometimes debate over the spreading issue.

It definitely spread in me. It started in both knees, now I have it all over 2 legs/feet and 2 arms/hands. So yeah, reality proves you wrong!
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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 07-27-2016, 02:22 PM #26
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The best part about this is that the doctor is still trying to help you. I know MANY people have gotten good relief from ketamine...so try to stay positive about it. We have to keep trying and searching for the method of treatment that works best for us...I will keep you in my thoughts and hope that you are one of those who gets great relief from the ketamine treatments!
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Old 07-27-2016, 08:38 PM #27
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Alaina

Thank you for sharing your experience with us. Together we are strong as we share our experience, strength and hope with each other. It takes a lot of strength to live with RSD. There is always hope even when we loose sight of it, it is still there. It helps me to remember my higher power is always closer than my breath. I am seeing now that each really bad day that I get through does give me strength to keep on keepin on down the road to recovery one baby step at a time, one day at a time. Experience is a great teacher. When one door is closed another one is opened.

You are in my thoughts and prayers Alaina.
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Old 07-27-2016, 11:32 PM #28
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hi again alaina. i just wanted everyone to be clear on my last note on this thread regarding your dr and scs and ketamine. i did not say your dr wasn't knowledgeable on rsd. he does seem to know about various treatments out there for rsd. what i said was that their may be MORE knowledgeable drs out there who may be able to help you manage your pain better. the reasons i said this was because first of all your dr took so long to get back to you when you were in pain after implanting the trial scs. IMO a good rsd pm dr would either have called you back asap or had a 24 hour hotline available for their patients in case of emergency. the second reason i questioned his knowledge was because he said that rsd doesn't spread. though drs may disagree on the measure of rsd spread, rsd can in fact spread and he is incorrect in saying that it doesn't. there is an abundance of research done that proves it spreads which you can find on this forum and online. the third reason i questioned your dr was that usually with rsd a knowlegeable dr will try the least invasive procedures first in order to avoid any spread or infection of rsd. first meds are tried (sometimes including gabapentin, narcos (which may need to be adjusted at times) and short term prednisone.) and then usually nerveblocks are tried up to usually six times yearly depending on your insurance. then there are other non invasive procedures like pt, aqua therapy, heat, tens units, calmare, hbot. then there are the more invasive procedures like accupuncture (though that caused spread for me but everyone is different). then there are iv procedures like ketamine which i believe are offered at places like drexel with dr. schwatzman (i am not sure if this is the correct university or dr for ketamine, but i think it is). then their is the trial scs and then the permanent scs. then their are pain pumps used for the really bad cases of rsd (i believe that morphine is sometimes used in these). your dr did the scs before ketamine. though i am not a dr, i would have suggested the ketamine before the scs because it is less invasive.
and like i also said in my last post that though i read of people who had no help from ketamine. i have also read of people who have had short lived positive effects from ketamine and who said that that drug is not easy to tolerate. that doesn't mean it will be that way for everyone who tries it. what i've learned from myself through the five and a half year of living with rsd is that not everyone responds the same to treatments and what might help me might not help someone else. and what helps someone else might not help me. it takes alot of trial and error and a good pm dr to find what will bring you the most pain relief. i am sure your dr is trying everything he can to help you but with rsd being so tricky to manage you just need to be extra careful (IMO) of what you try and who you try it with. i am not a dr but have had spread due to some procedures and i just don't want that to happen to anyone else suffering with this disease. i also don't want to discourage anyone from trying something because i may not agree with it. i am only saying to do your research on rsd and the different treatment options available and discuss it with your dr. then weigh the pros and cons and make an informed decision. ultimately the decision has to be yours and your alone. you have to be comfortable with what you decide and in time you will learn to trust your gut and know what works best for your individual needs. i hope this clears up any misunderstandings. i think everyone here on NT is awesome and all of us living with rsd are true warriors who need to stick together to help manage our pain and hopefully find a cure someday. i wish you all a pain free as possible night tonight. soft hugs to all.
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Old 07-28-2016, 01:30 AM #29
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Quote:
Originally Posted by RSD ME View Post
hi again alaina. i just wanted everyone to be clear on my last note on this thread regarding your dr and scs and ketamine. i did not say your dr wasn't knowledgeable on rsd. he does seem to know about various treatments out there for rsd. what i said was that their may be MORE knowledgeable drs out there who may be able to help you manage your pain better. the reasons i said this was because first of all your dr took so long to get back to you when you were in pain after implanting the trial scs. IMO a good rsd pm dr would either have called you back asap or had a 24 hour hotline available for their patients in case of emergency. the second reason i questioned his knowledge was because he said that rsd doesn't spread. though drs may disagree on the measure of rsd spread, rsd can in fact spread and he is incorrect in saying that it doesn't. there is an abundance of research done that proves it spreads which you can find on this forum and online. the third reason i questioned your dr was that usually with rsd a knowlegeable dr will try the least invasive procedures first in order to avoid any spread or infection of rsd. first meds are tried (sometimes including gabapentin, narcos (which may need to be adjusted at times) and short term prednisone.) and then usually nerveblocks are tried up to usually six times yearly depending on your insurance. then there are other non invasive procedures like pt, aqua therapy, heat, tens units, calmare, hbot. then there are the more invasive procedures like accupuncture (though that caused spread for me but everyone is different). then there are iv procedures like ketamine which i believe are offered at places like drexel with dr. schwatzman (i am not sure if this is the correct university or dr for ketamine, but i think it is). then their is the trial scs and then the permanent scs. then their are pain pumps used for the really bad cases of rsd (i believe that morphine is sometimes used in these). your dr did the scs before ketamine. though i am not a dr, i would have suggested the ketamine before the scs because it is less invasive.
and like i also said in my last post that though i read of people who had no help from ketamine. i have also read of people who have had short lived positive effects from ketamine and who said that that drug is not easy to tolerate. that doesn't mean it will be that way for everyone who tries it. what i've learned from myself through the five and a half year of living with rsd is that not everyone responds the same to treatments and what might help me might not help someone else. and what helps someone else might not help me. it takes alot of trial and error and a good pm dr to find what will bring you the most pain relief. i am sure your dr is trying everything he can to help you but with rsd being so tricky to manage you just need to be extra careful (IMO) of what you try and who you try it with. i am not a dr but have had spread due to some procedures and i just don't want that to happen to anyone else suffering with this disease. i also don't want to discourage anyone from trying something because i may not agree with it. i am only saying to do your research on rsd and the different treatment options available and discuss it with your dr. then weigh the pros and cons and make an informed decision. ultimately the decision has to be yours and your alone. you have to be comfortable with what you decide and in time you will learn to trust your gut and know what works best for your individual needs. i hope this clears up any misunderstandings. i think everyone here on NT is awesome and all of us living with rsd are true warriors who need to stick together to help manage our pain and hopefully find a cure someday. i wish you all a pain free as possible night tonight. soft hugs to all.

RSD,
I really have to strongly agree about the lack of response with the SCS which is open to infection, etc. Being she was dealing with pain should have been of concern to him. That alone would be reason enough to question his ability to effectively treat his patients.

Gerry
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Old 07-28-2016, 04:34 PM #30
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Thank you for sharing with us RSD ME. I am glad you are here sharing with us.
:-)
peace
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