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Originally Posted by RichS
Hey all, new member and found this site after being diagnosed. A little about me. I just turned 50 a couple of weeks ago, and very physically active still. I was into Bodybuilding when I was younger for many years, and up until recently still worked out 4-5 times a week. I'm into Road Biking, and occasionally Mountain Biking. I had a degenerated disc at L5/S1 for a long time, and decided to have it fused in September since it was starting to hurt more and more after anything physical. Surgery went great as far as the back is concerned. About a week after surgery, my Sciatic nerve hurt down through my hamstring,calf, shin and foot. At first the surgeon said it was normal and would settle down with time. For about two weeks the pain was so bad it was almost unbearable. Real life torture was about what I would compare it to. Eventually it all went away except for my foot. My surgeon was concerned and had me checked for Gout, and a blood clot, which both came back negative. He seemed to be baffled, but said try walking more and it should clear up. After 12 weeks I had a follow up, and he was stumped. He said by then it should be back to normal. My foot felt like Neuropathy, but stays swollen, with nonstop extreme tingling, and shocking. I can barely wear socks, much less shoes. Even socks are too tight. He told me that he thinks it's RSD and wants me to see a specialist, and released me since the back issues are fine. I have no idea how to proceed from here. First I'm scared out of my mind. I've read alot, seen pictures here, and terrified at how far this can possibly progress. I keep thinking it can get so bad that I will loose my job and can't support my family. I've been very depressed since finding out what I have. As far as what to do next, do I start with a Pain Doctor, or a Neurologist? I've read that taking action early can possibly result in remission, so I don't want to wast time. My first thoughts were to see a pain doctor, but then I started thinking that would just be masking the pain, and not really getting to the issue. I'm totally lost here. Can you all point me in the right direction where to proceed? I want to get on this as soon as possible.
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Hi Rich, so sorry you are going thru this. No doubt, your surgeon referred you to a Dr. familiar with RSD. ASK before the appointment, if the Dr. is experienced with RSD. RSDSA is a national organization- you can go online and type in your zip code and find closest RSD support group. Call the group leader and find out who the experienced local Drs are. My RSD followed a surgery, but wasn't diagnosed. Following the surgery, got frozen shoulder. Went into physical therapy to regain use of shoulder. extremely painful, but after nearly 100 treatments got use of shoulder. Then the RSD went into other shoulder after I moved to another state. Started therapy again to regain use of that shoulder. (really was RSD, but wasn't diagnosed) Then it went into the hand of original shoulder. RSD used to be called hand -shoulder syndrome) A rheumatologist said I had RA. but I knew that wasn't right, so I eventually flew across country to a sports injury group of orthopedic drs. that I trusted and had been to before. (noted for treating olympic athletes) He thought it was RSD within seeing me in 2 minutes. Same day had me at nuclear bone scan for my hand at the hospital. started me on physical therapy next day and ordered a Tens Unit. Flew back to my state the following week and saw another orthopedic Dr. who comfirmed RSD and continued PT. Also saw a neurologist who did further studies and confirmed RSD. PT is very painful, but necessary to gain full range of motion if a limb is frozen up. Also necessary to desensitize the limb or body part. The PT people had me desensitizing my hand at home. Had me get several plastic containers and put different textures or objects in each one and run hand (or in your case foot) thru the textures. Like cotton balls, sand, coffee grounds, pop corn kernals, beans, etc. just get used to different things touching the limb. Does that make sense?
My hand was frozen like a piece of wood-no use at all in bending fingers. Eventually was able to partially bend fingers-it's like a claw. But sooooo grateful I can cut my own food again and type. Thats been over 10 years ago. It did go full body into the feet, legs etc.
My understanding is the sooner you get diagnosed the better your chances are for remission. Check into nerve blocks-some have gotten remission when they receive them early on. I was helped with the electrical shocks etc with neurotin and later lyrica. I no longer take those meds,, but I believe they helped me.
There is another website that I learned a lot from RSDRX.com especially under puzzles -which are 140 some questions about rsd from a dr. that is now retired.
Getting as much information as possible is important although scary. From reputatable sites like mayoclinic.com etc.
RSD or CRPS is a disregulaton of the sympathetic nervous system. Which is why the disorder often follows surgery or a traumatic injury or even such a small thing as a needle injection. Look up sympathetic nervous sytsem, parasympathetic nervous system, vegas nerve and learn how these systems work in our body. These systems regulate our body temperature, heart rate, blood pressure, etc. That is why we can be burning up, or ice cold, or fast heart rate, then slow heart rate, high blood pressure, or low enough to pass out. Our anxiety level is connected to these systems.
It's a lot to take in, but the more informed we are - the better we can make decisions about our health care.
This has been long, but hopefully in some way helpful to you. Let us know how you are doing- loretta