recent RSD dx, post op.
 

i severely sprained my ankle in Dec. and went to a local clinic, ( i live in a very small town) was told i had a tendon about to seperate completely from the bone and was advised to visit a specialist. I have no medical insurance, but luckily i had made friends with other office managers when i lived in Houston. Saw DPM, immediately he told me i was developing RSD. Had a MRI, found bone fragments and a significant ligament tear. Cashed in money from my IRA and scheduled the surgery, was told the bone fragment may be impeding on my nerve and had to be removed regardless as well as the ligament repair. Had the surgery 3 weeks ago. My doctor " nerve blocked the hell out of me" -his words, i felt no pain at all for almost ten days. Woke up on the eleventh day or so to the most unimaginable burning, heat pain on top of my foot, the right side below my toes to above where my sutures were. My skin was like an elephant skin and very bright red. I was hoping, and still am that the surgery somehow affected my nerve roots and were traumatized by the surgery. Three weeks later, i have no pain from the surgery sight, healing great, regaining slight movement, but the burning pain is sometimes unbearable. My last follow up, the other day the doctor confirmed, " yes, sweetie you have RSD" And I'm like, o.k. what now? The doctor performed a $30,000 surgery for $5k and follow ups, injections, walking boot, etc. I try to adress the RSD with him, but his area is the surgery, which is actually too soon to tell if has helped. One thing for certain I have a lot more pain now than before, a burning hellish pain, not the dull, achy ligament, floating fracture piece pain. I have a TENS, which i cant even bear at this time. I cant drive for another month, because of the surgery. Should i even be trying to do ROM exercises, or is this exacerbating my RSD pain. The surgeries and follow ups were all i Houston, now I am back in my small town with crazy pain and a little depressed. Is it too soon for me to be scared because I am only 3 weeks post op from a pretty significant surgery or is there anything i can be doing to alleviate some of this pain. Not a big Vicodin taker, but it seems to be there answer for everything.

Welcome to the board! Sorry you've been diagnosed with rsd though.

It's extremely important you keep the joint moving! You can only make the pain worse by overdoing it thus putting yourself into a flare. Not trying to walk and gain rom can result in losing the use of the part, in this case your foot. Doing any exercises should be done consistently but slowly. Don't push yourself to the point where it puts you in even more pain. If you can do any exercise for only a couple of minutes then, stop there. You can do a couple more minutes later on. :-)

Keeping the pain under control is equally as important. I believe it contributed to my getting worse so fast. Don't have any proof but that's just my opinion.

It's great you've been diagnosed so quickly though. The first thing is to get to a pain management doctor as soon as you possibly can. The first three months are critical for getting treatment. You could possibly get into remission!

Nerve blocks should be done as soon as possible. The pm doc is who usually does them. Keeping moving and keeping the pain under control, also meds like Lyrica, Topomax, Cymbalta, Neurontin, etc. have helped others who have bad burning. It's calms it down so it doesn't just add to the rest of the pain.

Don't use ice! That will only further constrict the blood vessels resulting in more pain and a worsening in the already comprised circulation.

I guess those are the best "tips" I got! :-) Feel free to keep asking questions and learn all you can. We've all been there before. Welcome again.

Hugs,

Karen

Hello,

I'm sorry your are in so much pain. However, the good news is the sooner you are DX with RSD the better chance they have of treating it. Did your doctor tell you why he thinks it's RSD? Did he offer any treatment options like the proper PT? You need to contact a neurologist or PM doctor. Again, the sooner you start treatment the better chance you having of containing it to the affected area or stopping it all together. Visit the rsds.org website. There are a lot of wise people with good information on this forum.
Best of luck,
Sherrie

Hello and Welcome to Neurotalk Lindleykel!! You will meet many great people here who i'm sure will be more than happy to help you if they can!!!

I'm SO sorry to hear about everything that you have and are continuing to go through!!:hug: I really hope that things start getting better for you real soon and you are in my thoughts and prayers.

I also suffer from RSD. It currently affects my left leg and both arms. I developed it after I fell and sprained my ankle when I was 12 years old and am now 14. I have tried all sorts of medications but none have really worked - the only one that offers me some relief is Ketamine but my doctor doesn't like me taking it as he fears that it could affect my hormones because of my age etc. We are now considering other options as a last resort.

As Karen said, it is extremely important that you keep moving the affected limb as much as possible. I KNOW that it is really painful but it is probably the one thing that will help you and stop you from getting any worse. If I was you, I would talk to the doctor that performed the surgery and ask him what sort of exercises you should be doing. Maybe start off by doing something light and then gradually build up as and when you feel able to? Also, keep touching your foot as much as possible as this should hopefully keep any hypersenstivity at bay and stop it from getting any worse. Do you see a Physical Therapist? They can be really good at giving you some exercises to do as long as they know about RSD!!

Has your doctor mentioned anything about a Pain Management Doctor?? They are usually the best doctor to diagnose and treat RSD as they can prescribe meds, perform nerve blocks etc. It is extremely important that you get a doctor that knows all about RSD and takes the time to listen to your complaints - if you aren't happy with your doctor, then try and find another one. I know it's really stressful but it is worth it in the end!!! You have every right to say no to any treatment that you don't want so please keep that in mind if any doctor tries to force anything onto you - you know your body best!!!!

As Sherrie said, you are 'lucky' in the sense that your RSD was caught early. Some people have to wait months or even years without a diagnosis. Early and aggresive treatment is critical in trying to get the RSD into remission!!

Take care of yourself and if you need anything, please know that I am here for you because I DO understand some of what you are going through unfortunately!!:hug:

Sending many pain-free hugs your way!!

Alison

I think previous posters pretty much said it all.

Your one good thing is a quick diagnosis. What's most important for you now is that you are followed up properly for the RSD. That needs to happen. Ask enough questions about how this is going to take place.

Good luck with your ankle! Hope they can treat it fast enough so the RSD will stop progressing. I hope you will get most of your function back in that foot.

Keep us posted!