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 01-01-2012, 07:27 PM #11
TrudyGarnett TrudyGarnett is offline
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Originally Posted by catra121 View Post
I'm so sorry to hear what your mom and you are going through right now.

You've been given some good information about neurologists and PM docs. The key is to find a main doctor to work with who really understands RSD and who your mom feels she can trust. But you definitely want to make sure that this is treated aggressively from the start.

As far as medications...there are tons of them out there and everyone has different reactions to each. Neurontin did nothing for me...Lyrica had a much more noticeable impact on my pain vs any other medication I have been put on. It's also important to understand that often it's finding the right combination of meds that has the greatest effect. Obviously if she continues to have bad side effects from a med then she should probably try to find a different one. Then if that helps a little with minimal or no side effects you can work with the doctor to adjust dosage or add another med in there. Just don't let them put her on a whole bunch of meds at once because you will never know which (if any) are helping and if there are any side effects which is causing them. Good doctors should already know this...but it happens all the time where the doctors will put you on 3-4 meds all at once and it can cause quite a mess (talking from experience on this one).

And just a few things that your mom should be aware of while she is waiting to see a doctor or get treatment. First...NO ICE! Usually we think that when there is swelling then we should use ice...but this is not the case with RSD. Even in non RSD areas...no ice. And second...she has to keep moving. Immobilization will only make the RSD worse. Even if she can only do a very little bit, she has to try to do it. On bad days when my ankle hurts so bad that I can't walk I still at least try to move it back and forth or do some physical therapy exercises while seated. Also, know that physical therapy is a critical piece of the puzzle in treatment of RSD, so any treatment plan the treating doctor has for you mom should include physical therapy.

I am so sorry to hear that your mother is suffering and I hope she finds a good doctor soon who can get her some relief. Best of luck to both of you. This is a great place to ask questions and just for support from people who understand what life with RSD is like. Even when treating with a great doctor, we all need that emotional support that you can only get from people who really know what it is to live with RSD each and every day.
Thank you for the ice advice. We were icing her leg/foot for a long time as this was directed by the podiatrist, but we quickly realized that he had no idea what he was talking about after many visits to him where he told my mom to stay off of it in order for it to heal. I doubt this guy even knows of RSD. Just so I can prepare myself, does RSD ever get better? Is there any hope that she will have a normal life again? She is fighting through this, but getting an appointment with a doctor is so hard and she's seen so many doctors that are no help and we're losing time. I'm doing a ton of research to try and find her a good doctor online, but it is very difficult.
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Old 01-02-2012, 05:44 AM #12
birchlake birchlake is offline
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Originally Posted by TrudyGarnett View Post
Thank you for the ice advice. We were icing her leg/foot for a long time as this was directed by the podiatrist, but we quickly realized that he had no idea what he was talking about after many visits to him where he told my mom to stay off of it in order for it to heal. I doubt this guy even knows of RSD. Just so I can prepare myself, does RSD ever get better? Is there any hope that she will have a normal life again? She is fighting through this, but getting an appointment with a doctor is so hard and she's seen so many doctors that are no help and we're losing time. I'm doing a ton of research to try and find her a good doctor online, but it is very difficult.
Yes, stay away from ice. My podiatrist told me that ice was okay too. I had to find it out on forums and from Dr. Hooshmands site that it is not recommended. As mentioned, even many professionals do NOT understand this disorder.

Has your mother called the scheduling office to get on the cancellation list? She should consider that as if they have such a list, that could seriously shorten the wait time. It's worked many times for me. She has nothing to lose by asking them if that particular office operates with one.

In my research, you often see CRPS listed as incurable. However cases of remission are possible (more often with children), but as you already know, time is of the essence in trying to "reboot" the nervous system. I am extremely cautious in using the cure word as a true cure is not likely. But know this. It OFTEN can be managed well and you can make significant progress in the pain and suffering and many can have a reasonable quality of life.

Good luck!
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Old 01-02-2012, 02:04 PM #13
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Quote:
Originally Posted by TrudyGarnett View Post
Thank you for the ice advice. We were icing her leg/foot for a long time as this was directed by the podiatrist, but we quickly realized that he had no idea what he was talking about after many visits to him where he told my mom to stay off of it in order for it to heal. I doubt this guy even knows of RSD. Just so I can prepare myself, does RSD ever get better? Is there any hope that she will have a normal life again? She is fighting through this, but getting an appointment with a doctor is so hard and she's seen so many doctors that are no help and we're losing time. I'm doing a ton of research to try and find her a good doctor online, but it is very difficult.
So far...there is no "cure" for RSD. Remission is possible. But more important is that you need to know that even if your mom doesn't go into a full remission she can still possibly have a "normal" life if she can get proper treatment and her pain can be managed properly. Will it be the same as it was before? To be honest...unless she goes into full remission this is unlikely...but it can still be more "normal" than it is right now.

But there is not really a miracle treatment that works for everyone and even with any treatment that removes the pain (more likely that it will get to a manageable level vs. disappearing entirely) it is still a long road of physical therapy and retraining yourself to get back a lot of the function you lose when immobilized and restricted because of the pain. It is VERY hard...but when you have RSD you HAVE to make yourself MOVE the affected RSD areas. In the beginning it will probably only be very small movements and working your way up to doing more. It is a SLOW process...but it is absolutely key to getting back to a normal life.

The biggest help to me in addition to getting to the right doctor and a good physical therapist was having people around me who were supportive and love me. But in addition to just being "understanding" of what I was going through...these people also give me a great gift by treating me normal. We don't really discuss the things I can't do, or how I am "different" than before...it's more about them just supporting me through my rehab, pushing me to do the things I need to do, making me laugh and smile, and helping me to just enjoy my life. It's so easy to let yourself get down in the dumps because you are constantly in this never ending cycle of pain...but if you have people around you who can help you stay strong that's such a key part of getting back to a more normal life.

But it can be done, people do it, and if your mom can just keep it in her mind that things are not hopeless then she can get her life back then she will have something to fight for. Just be careful to not let her put all her hopes in the idea of any one treatment being this miracle cure for the pain. I did this when I got my first lumbar sympathetic block and I was SO discouraged when my pain didn't disappear after one treatment. Rather, she needs to look at all these things as stepping stones towards getting better. Each medication, each treatment, each day of physical therapy exercises...these are all things that contribute to her getting back to that normal life. It's not easy to see the daily progress...but every time she's able to do something she couldn't do last week or last month...those are things to be celebrated rather than constantly focusing on all the things that she still can't do.

So...it's not a hopeless future...but it will be a long road and (at least for me) it really helped to look at it this way so that I didn't get frustrated by the amount of time it took to get better. I'm not like I was before, but I am incredibly grateful for the things that I can do now that I couldn't do even a couple months ago. Just try to keep the focus as positive as possible.

Also...I'm not sure how mobile your mom is or what her ability to get to and from physical therapy is...but when my doctor wrote out an order for a physical therapist to come to my home...that was a godsend. This way I was given exercises and routines that I could do inside my house and that I could do on a daily basis even when the therapist wasn't there with me. For RSD, you really need to do these exercises every day. In the beginning she may not be able to do all of them every day, but at least some of them every day. It helps to have a therapist that you have a good relationship with, one who is interested in being educated about RSD, so that they can taylor the routines to your needs as the patient. Once she gets to a point where she's gotten as much as she can get out of the at home therapy, that would be a good time to discuss moving to an outpatient physical therapy program where they have equiptment (possibly a pool for water therapy) to keep progressing further.
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Old 01-02-2012, 02:11 PM #14
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As far as doctors go...does she have a primary care physician that she has a good relationship with? The doctor I am currently working with is not a specialist in RSD, but she is willing to do some research and read the things that I bring her, and try out different treatments for RSD. I'd seen a pain specialist who did some blocks (which made my RSD worse), I'd seen a neurologist who just kept referring me to other doctors, and been told by my current primary care doctor that unless I could hold an alignment (he referred me to a NUCCA chiropracter) then I would be stuck like this (in a wheel chair in unbearable pain) for the rest of my life. After being bounced around from one doc to the next I finally said this is enough, went to a new primary care doctor, and she has been just amazing. Got me the TENS unit I needed (helped with the pain), got me the at home physical therapy, worked with me (and continues to work with me) to get the RSD symptoms under control...she's just been wonderful and supportive. So if your mom has a good primary care doctor who would be willing to work with her while she is trying to find a good specialist, then that might at least get her headed in the right direction where a specialist could pick up from once you find one. Does that make sense? It's just I hate to hear of your mom's treatment getting delayed while she tries to find a doctor who can help her.
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