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Reflex Sympathetic Dystrophy (RSD) (CRPS) Message Board


Reflex Sympathetic Dystrophy (RSD) (CRPS) Board Index


My daughter who is 10 years old has RSD in her left foot - 3rd Stage. I searched and searched for a Doctor for answers. After 1 year of looking for help we finally went to the Mayo Clinic in Minn. The only thing they did was confirm what we already knew. We have done physical therapy day in and day out. When she hurts, we walk. We do aqua therapy, heat therapy, TENS Unit and parfane wax dips. She is on no meds at this point except Motrine every 6 hours. All of this works together and seems to control the pain at least for her to be as normal as she can be. I don't know how old you are but there is a lot more that they can do for an adult than with pediatrics. The best Doctor you will find lies within yourself - research on the internet is the key, then take the information to your General Physician let him know what you need and what can help you. Believe it or not, it will eventually open up many doors for you. Look for a RSD support group in your area - it will help you, I know that you can feel very lonely and left out because nobody can possibly understand what this does to a person. My daughter is a remarkable little girl and unfortunatley she must keep me straight when I feel down. RSD is a terrible thing and I am so sorry that one more person in this world has been diagnosed with this. I will say a prayer for you tonight.

A Mother Who Feels the Pain,

Kim
Hi,
I have left hand and wrist RSD as a result of two surgeries. You definitely need to find a pain management doctor/anesthesiologist who specializes in RSD right away. Like Kim said, you are going to have to research and know what your options are as you will need to be in charge of your medical care. I went to my first appt. knowing that I would not leave his office without receiving a stellate ganglion block. Time is of the essence in getting RSD under control. Pain meds and physical therapy are very good first steps, but your case sounds like you really need some blocks to snap your sympathetic nervous system out of its pain cycle.

I've heard of people getting up to 50 blocks to get theirs under control, but I'm only at 3 with a lot of success. Some people do not have success with the blocks, but you don't know unless you try.

There is a thread I started with a link to a CRPS article by the Mayo Clinic. It outlines the different treatment options for RSD and it might help clarify things for you.

Also, I think a PMD could get you on some different drugs that might help a little more. It can be trial and error in finding the right drugs, but it doesn't sound like you have quite enough neuro-pathic pain blocking meds helping you right now. The meds are definitely a really crummy part about RSD, but they can help you get through the worst of it.

One last question: Does your surgeon believe that there could be anything left pressing on a nerve or some mechanical problem triggering your RSD? If there is then you will want to thoroughly investigate that as getting RSD under control is very difficult if the underlying problem is still in place. I hope this makes sense.

Please come here for support and let us know how you are doing. You will be in my prayers.

Best wishes,
Julie
So sorry you are going through so much and have so many limitations to treatment!! It sounds like you have done a lot of research and you are absolutely right - you must find an expert to help you. I wish I could help you with this! Hopefully somebody else will be able to.

Kim, I'm really surprised at the lack of medical support you got at the Mayo Clinic. We have been to the one in Scottsdale a couple of times for my daughter's MS care and they have a team of doctors putting their heads together to help her. Srhlswk, I wouldn't rule out the Mayo Clinic as a possibility if it is feasible. Perhaps their hands were tied with treating a 10 year old girl (??) but maybe they could help you. I guess it all comes down to the individual doctors.

Were the neurontin not working for you? There are other drugs to try as well. I really hope you find relief!

Julie
Where is Mayo clinic, I need to stay in Mass. Thank you for all your imput any little thing can make the difference between bareable and agony. Thanks





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