I just joined this website given that my mom was just diagnosed with RSD and it has been a really hard few months for us. I am a only child and am extremely worried about my mom. She had a morton's neuroma removed September 1 and hasn't been the same since the surgery. She has chronic pain in her foot and leg and after going back to the podiatrist many times after the surgery, she finally decided to consult with our PCP given that the podiatrist just kept telling her that it would eventually get better. After a blood clot, many trips to a vascular doctor and a visit with a orthopedic surgeon, she was diagnosed with RSD. She had a test done to test the blood flow in her foot and leg, which went well, but she's still in severe pain and I am at a loss as to what to do to help. She is taking neurontin, but the side effects are horrible for her given that she is very sensitive to medications.

I have read many posts about RSD and it scares me to death. My mom lives in Virginia (I live in Denver) and she is seeing another anesthesiologist next week for a second opinion, but she is almost at the point of a mental breakdown. I have found that many people using this forum have gone through some very difficult times with RSD and I am looking for support and any recommendations on doctors and treatments. The first anesthesiologist she saw about a month ago recommended a nerve block, but she would like a second opinion because she didn't trust the first doctor. Does anyone know of a doctor in Virginia that can help her? I am willing to do whatever it takes to get her the help she needs. She is depressed and frustrated and I can't explain how hard it is to not be able to stop the pain she goes through on a daily basis. Thank you so much for any help or advice you can offer!

Sending hugs to you and your mom.

Trudy,

So sorry to hear about your mother. You are a good daughter in advocating for her with this. This website is a good place for information and support.

CRPS (or RSD if you will) is a unique and kind of rare condition. Because of that, it is VERY important that your mother get multiple opinions early in the process as CRPS is an extremely misunderstood, even by professionals. I just cannot emphasize this enough. So seeing that anesthesiologist is a very good idea; keep that appointment. I've seen doctors that have seen a fair amount of it, and I saw one doctor that had actually treated only 2 cases in 26 years. Those are the doctors that you do not use. Hopefully somebody that lives in Virginia can chime in with more specific recommendations on who your mother could see.

But when you see any professional, it is very important that you ask the following question directly to them: How many cases of CRPS have you treated?? Don't be shy. You need to know how well versed they are with CRPS. Your mother has to be her own advocate with her treatment here, as experience levels and treatment techniques can vary widely.

The first line of neurontin and nerve block is often suggested as treatment. In fact, that is exactly how I was handled. For me the neurontin is a godsend, it is the mainstay drug for my CRPS. I had the nerve blocks but they didn't help me, possibly because it took too long for my CRPS to be diagnosed. Time is of the essence here as the first 6 months are the most critical time for taming this condition.

What you'll find for certain is that everybody is different with CRPS. What works for one may or MAY NOT work for another. If neurontin isn't working well for your mother, that information has to be fed back to the doctors and there are other meds that can and should be tried. It is often a trial and error and to be honest, it may take a while to find what works best. Most often, a "multi-disciplinary approach" works best. Very rarely can this condition be successfully treated with just one modality like meds.

I'll give you a link to some websites that will provide far more information than what I can. The information provided within these links has been very helpful to me. I have chronic pain, but because of my treatment team (podiatrist, chiropractor, G.P, massage therapist, physical therapist and occasionally a pain mgmt. doc), I am quite a bit better than I was not long ago. Your mother will likely need a "team" of professionals as well.

Good luck to you and your mother. Check back and keep us posted......

http://www.podiatrytoday.com/article/2672

http://www.rsdfoundation.org/index.html

http://www.rsds.org/index2.html

http://rsdrx.com/

http://www.takingcharge.csh.umn.edu/

Thank you so much for your reply. You don't know how helpful it is to hear from someone that's been through this. I am taking all of your advice and will make sure to ask the doctor she sees next if he has worked with RSD patients. She had her surgery September 1 so I think we can make some great strides if we're very proactive but we are coming up on the 6 month mark soon. I have known about the RSD since Thanksgiving but it is so darn hard to get an appointment with these doctors! Have you also experienced this? Do you have any advice on what to say to get a appointment that isn't months away? I have begged and stated that it is an emergency and that doesn't seem to matter to the staff. This is one of the reasons why we're seeing another anesthesiologist. The first one was a nightmare to try and get the initial appointment. Also, do you think she should be seeing a neurologist as well? Do neurologists seem to be more knowledgable than anesthesiologists? I can't thank you more for you help. Happy holidays!

Trudy--I am sorry about your mom. I also realize how difficult it is for you as it has been extremely hard for my four kids to try
and understand this and have no idea what to do to help. Any time I see anesthesiologist mentioned, I try to point out that PM--Pain Mgt docs come either from the route (many more) or from neurologists who normally have a much better idea why certain procedures are done and why they work and when they do not, why not; versus the anesthesiologist who is trained to
knock people out, then learns various procedures as blocks etc., to me no more than a PA or NP doing the procedure. The top Docs dealing with RSD/CRPS that I know of are all neurologists with the exception of one having been a podiatrist and surgeon. I researched it once before but forget the figures but there are a great higher number of PM docs coming from anesth. (provides anesths w/ another discipline) than neurologists, some who specialize completely in epilepsy and know little if anything about RSD/CRPS. So while it is not always possible or feasible, I would always opt for the neurology trained doc who has entered pain management.
I have had both and had no problems with the PMs trained in anesth but will say I have asked questions re procedures which they had no answer while again, the neurologist knew why it was being done and what did nervous system etc. which only makes sense as it is their training. I wish you and mom all the best. You are doing all you can by learning at a forum such as this. Do not neglect your own needs or health, this is a lifelong battle. God Bless--marty hansen austin, tx.

Trudy,

Scheduling specialty appointments out a while is definitely a sign of our "challenged" health care system. One suggestion that I ALWAYS implement is this. Ask them if they would call your mother in the event of a cancellation. Many clinics will do this, but most won't tell you about this service UNLESS you ask. If your mother has some flexibility and can accommodate making it to the clinic on somewhat short notice, this can really be helpful in keeping the process moving along.

As for neurologists, I have mixed feelings for the following reason. If you see one, be sure it is one that specializes in conditions like CRPS. Seeing a neurologist that knows little or nothing about CRPS (yup, they are OUT THERE!) can just keep you from getting to the bottom of this. But see the right one and you may make quicker progress and have a better understanding of what truly is going on. Know this. Neurology is a specialty, but within that specialty are "subspecialists" who have more experience within the broad definition of neurology. The first neurologist I saw knew literally nothing about CRPS. Seriously. So you really have to do your homework before making an appointment. And again, ASK about their experience with CRPS.

As they say in the financial industry.....your results may vary. It goes for doctors and therapists as well.

Good luck!

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.

I to am so sorry for you and your Mom. Lots great info has already been given to, only thing I would add is the names of a few meds that you gals can research and ask informed questions about to a Dr. Cymbalta is good for pain and depression, Lyrica for the burning pain, Nortritylene for pain and depression ( can be taken with Cymbalta) and Tranadol for pain. Keeping warm is one thing that helps with my arms. Good Luck to you both.

Trudy,
Welcome to the club. You have been given some great information. I would like to add that I finally gave up in this fall and requested to be put on an antidepressent. It was truly a life savor. I was ready to cut my leg off from the pain, the financial stress doesn't help either.
It was brought up that your mom should be on 3 or more meds. BUT don't start them all at once. Maybe 1 a week. I bottomed out and became very ill when they switched all my meds. Horrible and scary.
Well feel free to rant, rave and share. :welcome _sign:

If your mother is near Washington DC, she can give Dr. Chin a try at the George Washington Hospital Center in NW Washington. She is head of the Pain Management department. She treated my wife who has RSD. Very sorry, and good luck.