I have had rsd in my foot for over 3 years now. I have had no less than 13 surgerys and is still am un able to walk more than 5 min without it turning bright purple with burning,stabing pains. Did the PT work for you? Did you notice a good amount of reduction in pain now that you have had pt for some time now? I cannot for the life of me get this rsd under control. It has taken over my entire life with relentlesness.
I have just stated pt umoungst other things and it is absolutely unbearable when she turns my foot and pushes it and the on top of it all she starts to rub it intensly all over and then puts a hot towell on it for 10 mins. For days after she did that I am in hell with the uncontrolable pain that had come from it. It was my first pt appt so i hope the next ones will be better than the first.
I have absolutly zero life from it and I have tried almost every med out there. Most of the long term ones make me sick so im back on my dilaudid. I wish the oc worked but just too dizzy and headache .
Please let me know if you dont mind what meds work for you to try to tame this life living hell we live in, I would love to hear it.
Thanks for you post, I have been looking for some rsd or what its called now is crps patient to get some ideas from.
Thats great how quickly you were diagnosed with rsd. I know that the earlier you start to rehab the better chances you are to get rid of it and the better chances of it not progressing. I have had every kind of block and procedure including a spinal cord stimulator to get mine under control, but it just has a mind of it's own. I will keep doing the pt although I did have it done 2 years ago, but the therapist said it was'nt worth his or my time because I was'nt getting any progress out of it. That tells me now how ignorant some therapists can be.
Anyway I am going to a good pain clinic now and hope to get some kind of relief from them. Thanks for the info I really do appreciate it. Good luck with your recovery and thank goodness for your quick diagnosis, I would'nt wish anyone the road I have gone thru!
Hope everyone has a pain free day!
Hi, im sorry you are dealing with this
I had a major injury to the left foot from a lawnmower accident back in 1978 or so. I had several compound fractures, and complete reconstruction of the foot. I lost one toe to gangreen. I had pain over the years but noting that was to horrible. 8 or so yrs ago, i was dx w/ RSD after having severe pain and could not walk on the foot. I had to use a wheelchair for a few months as just putting my foot on the ground hurt beyond words. I then started seeing my pain management specialist. He started by putting me on pain meds and then added nurention (sp). After the nurenton did not work, i stopped it. We then started the lumbar sympathetic blocks (spinal blocks). In the beginning, they worked amazing. I got them in a set of 3. So, one block every other week till i did 3 blocks. I would get the set of 3 twice a yr. It is what got me up and walking. PT did not, pain meds did not.
After all the yrs of blocks, i am starting to get used to it, and am needing blocks more often. They have started to add Ketmine to the IV when i get my blocks now (supposedly, it is suppose to help rsd?) My PM tries to hold me off as long as possible but is good about letting me get them when i need them.
I can say that my foot is mostly purple all the time now. Sometimes it goes blue. We have added lyrica which is really suppose to be having very good results w/ rsd, but i have not taken it long enough to comment. Anyways, i just wanted to tell u about my experience w/ the blocks. Some doc won't do them and some want to do only procedures. I seem to have found a happy medium. Good luck
it seems the thing a while back was nuerontin,but as you said everyone stops taking that. The lyrica I have been taking for about 2 and a half years along with cymbalta that they claim has 75% nerve help and 25% depression help. I also take dilaudid for the pain,tizanadine for my muscle spasms and ambien cr to try to get some sleep ONCE in a while.
I have had about 14 to 15 simpethetic nerve blocks with no positive results and also straight ketamine infusions, probably 4 or so and then they just started to make me sick without any benefits. Then my pain med doctor tried a spinal cord stimulator that was a complete disaster. Got it adjusted several different times and all it did was shock my ass and my foot.He did use the one that has 12 leads up and down my back. I got that removed as soon as possible and can still feel the spce where they inplanted it.
After all these nightmares I was introduced to a nerve specialist and within 2 months I had 3 perrenial nerves cut out of the bottom of my leg to hope stop the agony shooting into my foot with no relief from it at all except increasing the pain. Not to mention all the needle procedures I have had trying to burn the nerves and the trying to freeze the nerves, with all the action my foot has gone thru my new pain clinic said HOLD OFF all these surgeries and start to rethink and go slower while considering if any other types of actions.
I tell them everyday I walk around my house and yard with my cane and they told me that was not the type of actions they wanted me to be doing. More like heavier types of PT and other things that I havent started yet. I also forgot to tell you that 2 years previous I had to have my big toe screwed into my foot because of crystalizing and decaying bone stucter in that area so it really hurts more when they start really rubbing my foot and hit the screw area.
Ya I did to get sick off of opana and oxcycntns too so they cant be an option. The ketemine is wierd, at first the infusion took five and a half hours and wasnt too bad, but I wanted to speed up the infusion to 4 hours and I did get some wierd head games and then the last one was 4 and a half hours and I decided that they werent doing nothing besideds makinf me loopy for a while so I stopped. Yes beaware of the quick doctor who wants to do the scs. Its definatly NOT for everyone. The pump also scares me alot.
Thanks for the post, I apreciate the chat and good luck with what you have going on.
Hope Everyone Has A Pain Free Day!!