I have been having the hot cold issues for a few months along with the colorful changes in my hands and feet. A bit of background (12/10 ACDF 2 levels, car accident 9/2011) In my opinion I have CRPS. My ortho is not sure as it is not has area of expertise. He sent me to a vascular dr. I went to the chief of Vascular Surgery at LIJ. He said I had CRPS based on my descriptions, what he saw first hand (my hands and feet were very cooperative)and prior EMG's and MRI's. Then tried to figure out what to do with the info. I was told to find a physiatrist that is knowledgeable with CRPS. Not so easy. Finally did and went to the appointment. He felt it wasn't CRPS due to similar symptoms in both hands and feet. He said that it generally affects either the right or left but not both at the same time. He felt is was Raynauds. Not so sure I agree as I have not read anywhere that Raynauds causes the burning heat. He did say he would perform an EMG to test for nerve damage not sure if he was referring to one or both hands or my feet. He also stated that he could perform a Stellate Ganglion nerve block. If that helps then he is wrong and it is CRPS if not it may be Raynauds. At this point I am ready to schedule the nerve block. I just want my life back and to be painfree again. It took my more than 5 years to bit the bullet and have my neck fused. I was feeling so good after 6-7 months post surgery. Now I feel I am back to everyday being filled with various amounts of pain. Sorry for ranting and carrying on. Generally I do have a positive outlook. I am thankful that the car accident was after I had been fused and the car that w

Ummm...I don't think your physiatrist knows much at all about CRPS. It can and does affect both sides of the body in many people, some have it full body, some even have it internally. Using a block to try to diagnose whether it is CRPS or not is foolish in my opinion. Many people do not respond to blocks and the longer you have it the less likely it is to help. After 6 months there is a significant drop off in the number of people who get relief from a block and it just goes down from there. Don't get me wrong...a block may be a good idea because it may help and is not as invasive as some other treatment options...but anyone who believes it is an effective way to rule CRPS in or out is not someone who I would trust my care to now that I know better. I think some of the information you have been given by this physiatrist is inaccurate and/or misleading. CRPS is not well understood by many but the few things you have said here are red flags for me when I talk to doctors that indicate to me that they are not very knowledgeable. Sounds like he is very confident in his information and that would make me, as a patient, very nervous because I would rather have someone who admits they don't know everything that one that THINKS they do and is mistaken.

As I said...I think the block is still probably a good idea but I would be cautious about letting this physiatrist lead you off the path of proper treatment for CRPS because he thinks it is something else based on his inaccurate (in my opinion) ideas about CRPS. Just be careful and don't believe everything he says just because he is a doctor...look into things for yourself and ask questions about the things that you are not sure about.

Stay positive and just keep moving forward in your struggle against this thing. I am sorry that you have to live with so much pain and I hope that you are able to find relief soon.

I do much research on my own and tend to ask alot of questions. I also keep a journal of physical symptoms, how long they last and how they affect me. I feel that more than 1 health issue is going on. I do feel I have RSD and Raynauds as but both can cause overlapping and similar symptoms. I am continuing to look for additional doctors that may have knowledge about RSD. I also have osteoarthritis and see a rheumatoid arthritis doctor. I have an appointment with him in a few weeks. Hoping he can let me know his feelings on a dual diagnosis and what course of treatment. Not sure what my options are as far as treatment are concerned. I read about calcium channel blockers, but not sure. I try not to do too much research online because sometimes it may or may not be accurate and can cause much anxiety and stress. I try to stay positive and keep all of my options open and continue to speak to doctors to find out the root of the physical problems.Thank you for your response.

I'm sorry you have so many different things going on...that's got to make things that much harder. I know that I try to make sure that when new things happen that I don't automatically assume they are the RSD because there are lots of things that RSD CAN cause but that doesn't mean that it IS causing them. We all need to be careful and make sure that we don't miss some other health issue or ignore other possible treatments just because we assume RSD is the culprit.

As far as treatment options...blocks are usually one of the most common starting points after diagnosis. There's also a variety of different meds that are used to help control different symptoms. Ketamine is another big one, though it is fairly expensive...but effective for many many people. Spinal Stimulators are another treatment option that many people have gone for (though I personally will not ever go this route based on my own research and feeling about it...but many people have found success with it to varying degrees). TDCS is a relatively newer option for treating chronic pain and RSD which is the least invasive option (I'll be starting this soon and hope it works). TENS units and heat therapies can also be really helpful tools in controlling the pain.

All of the above should be done in conjunction with physical therapy. The items mentioned above are all things that can help manage symptoms and pain but without the physical therapy RSD can continue to get worse. Immobilization and protecting of the RSD areas are some of the worst things you can do...RSD is a use it or lose it sort of thing...but you need to get the pain and other symptoms under control so that you CAN do the therapy.

I understand your concerns about doing reseach online but RSD is so widely misunderstood by even those in the medical field that you really should use the internet (again...my opinion only...not trying to tell you what to do because that is for each person to decide on their own) as a tool to educate yourself about it. I have had doctors tell me that RSD doesn't spread, that it can ONLY be in a hand or foot, and who are completely unfamiliar with the other symptoms beyond just the pain that can be caused by RSD. If I didn't know better then I would have taken these doctors at their word and would probably be in a mental institution thinking I had totally lost my mind, stuck in a wheel chair and unable to stand or walk at all instead of walking around and finally getting to the point where I can return to work. I learned in my experience that I cannot rely on doctors to fix me and make me better...I have to take responsibility for my own health and figure out what is in my best interest to get me where I need to be. My doctors are there to HELP me get there but it really is my responsibility to do what I have to so that I can get better.

About 10 months ago my doctor (who was literally the one who delivered me and had been my doctor my entire life) told me that I would likely be stuck in a wheelchair and just have to suffer in pain for the rest of my life. Now...I could have listened to that and given up...but instead I decided to change doctors and take control. My mom was not happy, my lawyer was not happy, but I felt that I needed to do this because my life was hanging in the balance. Not that I would die from RSD...but it would have essentially been the same as dying because I would have given up on the possibility of me having a normal life...RSD would have beaten me and I don't think I could have recovered from that. I decided to put my health above any concerns that I might offend a doctor and by taking control like I did I was able to get my life back. Don't mistake what I'm saying though...I don't tell the doctors what to do. Instead I come in with the idea that this is a partnership. Their JOB is to help me achieve my goals with regards to my health and I want a doctor who will listen to my concerns, consider the different ideas that I bring to them, and work WITH me to get through this RSD thing and any other health issues that may come up along the way. Luckily...I found a wonderful and compassionate doctor who doesn't pressure me to go through expensive procedures that I don't want or try to make me take the medications that she "prefers" to use (I've had doctors in the past who have done both)...instead she has my best interest as the focus.

Sorry to go on...and I apologize if anything I said comes off the wrong way as I mean no disrespect to anyone who has a different opinion than mine. I just feel very passionate about all of this because I don't want anyone to suffer through the same bad experiences I had being bounce around from one doctor to another all the while getting worse and worse. I feel like if I had stood up for myself in the beginning that I would have avoided much pain and frustration...how much time did I waste with doctors who didn't really care whether I got better or not? But...the past is in the past and my experiences have only made me stronger. This journey has really taught me a lot about life and what's important. If any of my experiences can help anyone else then I feel it's important to share them...I hope that they can.

But regardless...I really do pray that you get some relief from this pain and suffering and that you do not have to go through the things that I have or that other members here have had to go through. I pray that the block helps take away your pain. Good luck.

Sorry it has taken me so long to respond. You are correct and I do not assume that RSD is causing all of my physical symptoms. I keep a journal of how I feel and what is going on. I haven't been too good with that lately and I am sure that is a BIG mistake. My journal rally puts all of th physical symptoms in perspective. I wish I was better these past 2 weeks. I'm sure there are many health issues that are causing my physical issues. Just trying to figure them out. Wish it was easier.

I have had 3 SGNB and going for a 4th this Friday. I will never get a SNS. I do not want anything implanted in my body. I have heard of Ketamine, but haven't done any research on it. I have a TENS unit and use it often along with some medications.

Yes, TDCS is a newer option for treating chronic pain and RSD. Let me know how it works. This is the area that I am currently researching. Would love to get the pain into remission.

I do go to PT 2x a week with heat, stim and massage. Now sure they have alot of knowledge of RSD but I still feel it has helped. I also try and complete my exercises on the days that I don't go. I do work full time and walk a bit. I go with friends on the weekends for an hour at a time. Better than nothing. There are times that my feet hurt too much so it is much shorter.

I try to ask as many questions as I can to more than one professional along with doing research. My issues are all so intertwined that it is hard to figure out which problem is causing which symptom and what to do about them. Sorry for my rambling on and on.

Have a healthy and a happy holiday season. Happy Passover and or Happy Easter.