I am dieing in Pain with RSD of right ankle. Can anyone tell me if they are going through this extreme kind of Pain. I am on the Duragesic Pain Patch 100 MCG and Oxycodone 30 MG Pain Pills one 5 times a day. I am still in extreme pain and no Doctor seems to be able to help me. If you can help me, then please let me know. I have had MRI"s, Bone SCans, CT Scans, Electric Shock stimulater, and test after test. I found a Doctor in Charlotte, North Carolina that wants to remove my foot, ankle and part of my leg, due to RSD in my ankle. If you have any ideas on how you can help me then please do. Thank you for your time.

Kerry51

Sorry you are having so much trouble with RSD. I have PN or RSD in left ankle, however not as extreme as what you are describing.
I do not know if there are other answers, but I would seek Mayo clinic or some diagnostic center, before I would ever consider having my foot and ankle amputated. There has to be someone in the country that can help you. I hope that some other folks here can guide you to a better solution. Have you tried Katemine? Infusions, and or cream? I have heard of this being done before. Keep posting, you will get a response soon. Hang in there. ginnie

The problem with RSD, is that it is very complex and everyone is different. What works for one does not work for another. I have heard some really good things about the Ketamine infusions. I have a friend that suffered for almost 20 years with RSD that had it done and is now in remission. She still has to be careful and will never be 100%, but she is back to an almost normal life. It is something worth looking into.

As far as amputation goes, unfortunately for us RSD suffers, that will not solve the problem. Because of the fact that this disease affects our nervous system, yyou would still have pain even without the foot. The term RSD was actually coined during the Civil War when soldiers who had ampuations would complain of phantom pain in the ampuatated limb which spread to other parts of the body. I would recommend getting a 2nd opinion, or 3rd, or 4th, etc. Don't just settle for what one doctor says. It is frustrating, but hopefully you will find a doctor that understands.

Best of luck to you! I truly hope you get some relief.

Hi Kerry,
I know how bad the pain in foot area can be. I am taking oxycodone but not that dosage. I agree with Babygirl that surgery can (according to my doc) almost always make it worse. My doctor suggested a pain cream that had to come from a compounding pharmacy. The cream had ketamine, and five other ingredients. It really worked so that I could go out for a while (not driving but in car) and enjoy myself a bit more. The pharmacy jacked up the price so that my insurance co. wouldn't pay for it. As I say, I don't kow if it would work for you. I have had so much severe pain now for 15 days straight that i am nuts.........totally. But I am hoping that I will get somewhat better.

Hope you feel a bit better soon.
Fran

I bet I am using the same compound as you are. Has about 5 things in it including Katemine. I hope others get wind of this as it does help. If anyone wants me to post the ingrediants I will. I wish all of you the best with this disorder. ginnie

I notice you only mentioned two meds in you post. You would probably benefit greatly from adding more types of meds to control your pain and symptoms. Have you tried a continuous release pain me like Oxycotin or Opana ER? You take this along with Percocet to help even out the level of pain control in your system. What about a nerve pain med? Have you ever used Gabapentin or Lyrica? I take Lyrica daily and believe it's helped in several ways, lower the nerve pain, reduce stiffness and the amount of spread. Have you used a Ketamine cream? I works so well for me, for my hot spots, sensitivity, nerve pain. What about steroids? See if you can get a Medrol dose pack to reduce the swelling and give you a bit of energy to get through this tough time. Ketamine and or Lidocaine infusions are definitely worth trying before considering more surgery. I've read many stories of complete pain relief and even remission with Ketamine.
Hang in there and ask your doctor for alternate options to your current perscriptions or additions to what you currently take.
Best of luck! You are in my prayers!

How long have you had rsd? What stage are you in? Have u considered a nerve block or a spinal cord stimulator? Im about to try the nerve block and if that doesnt work Im going to get the spinal cord stimulator. Im getting this done at John Hopkins in Baltimore. I would go to the best doctor you can. It took me five years of doctors to find out what my doctor at JH told me in one visit. Hope this helps!

I also have RSD in my right ankle and after 5 years and 10 different doctors I found the right one who gave me the right diagnosis. I actually found him when my orthopedist wanted to do an ankle fusion and the idea just didn't sit right with me so I decided to go to a pain management specialist for a 2nd opinion. Unfortunately, RSD can spread as it gets worse and any stress or trauma to the body can cause it to become worse. That can be stress in your life, an ear infection, sinus infection, the flu. An amputation is absolutely a stress and trauma to the body, which could cause it to spread to other limbs and be even worse than it is currently. I too have the ketamine compound ointment, which is very expensive. Unfortunately it only helps me if I use a lot along with saran wrap to help it absorb (per doctor's recommendation when just normal use did not work). The saran wrap was just too painful for me to use. I also use the patch but 75mg along wiith Opana instant release 10mg or Morphine instant Release 30mg depending on the breakthrough pain each day. I have had many sympathetic blocks as well as trigger point injections. A TENS unit (electrical stimulation) can bring some relief as well as tools learned in Physical Therapy. In less than two weeks I will be having a spinal cord stimulator trial as my overall pain is getting worse as well as color and skin quality, my doctor is fearful of it spreading to other limbs. I am guessing since the doctor you mention is speaking of amputation than he or she is not a Pain Management doctor. If you have not already seen one that would be my recommendation because they will at least have experience with RSD whereas many PCP have not and as my doctor explained orthopedists often believe surgery is the answer and rarely diagnose RSD because there is a chance their work inadvertently triggered the RSD. I saw many doctors who were supposed to be ankle specialists but because nothing showed on the MRI, their response was "I don't know what is wrong, you are stuck with the pain - Have a nice day."
I wish you success in finding the answers and relief you so desperately need, but please do not go the route of amputation as it will make things so much worse if RSD is the main diagnosis.

I have to agree with everyone here that has posted. [B]DO NOT HAVE AN AMPUTATION. You are just trading pain for pain. I also agree that it seems to me that you are not on enough medications at this point. The same medications that work for me may or may not work for you. But you should be on a nerve pain medication, regular pain medication, extended pain medication, possibly a muscle relaxor and antidepressent.

I remember feeling that I just wanted my foot cut off and how bad the pain was. Now my pain is tolerable with the right medications. Please check into adding additional medications.

It may help you to check out the RSDSA.org website. There is a list of medications commonly used to treat RSD.