Looking for advice on walking with RSD

Dear Sox,
Welcome to the HW forum. I am not a doctor, nor are we here to offer medical advice. So what I would say to you is to make sure you are working with someone who specializes in RSD (now called Chronic Regional Pain Syndrome - CRPS) and follow their advice closely. I didn't realize RSD could be diagnosed so quickly after an injury, BUT I do know that an injury that does not heal properly can lead to RSD. If you've already been diagnosed by a specialist, then I would ask them about the walking, and also tell them about the heat and color change to your foot. I think those are symptoms of RSD, and it CAN worsen. So I'd suggest talking with your RSD doc ASAP.

Good luck!
PaLady

Hi Mike,

I'm so sorry to hear that you have had this for 3 years. I was extremely lucky to have seen an orthopedic doctor who recognized the symptoms and diagnosed me early. It was pretty obvious something was really wrong when they were taking off my cast, the vibration of the cast cutter was just about the most painful thing I have ever experienced.

The good news is that physical therapy really does work. I would look around your area and find a place that does physical therapy that specializes in treating RSD, it is very important that you work with someone who understands it and has helped treat it before!! The physical therapist I work with has helped many patients with RSD and understands what I'm going through. They also have special equipment which is important. They have a machine that I would put my foot into and it blows around this dust (I think it's corn husk dust) and they can adjust the temperature. At first this was so uncomfortable that I could only do a few minutes, but after a few weeks I was actually becoming desensitized and I could keep my foot in for up to 8 minutes and at a warmer temperature.

I spoke with an RSD specialist a few weeks ago who suggested other methods of treatment that he has seen work in his patients. One of the things he suggested was hypnosis or a pain block, some way of completely stopping the pain to give your nerves a jolt back into reality. He also said if you can find a massage therapist who works on RSD patients, they can help work on pressure points.

As for pain, I can actually say mine has gotten a LOT better. I was taking Ibuprofen to reduce swelling, Ultram (tramadol) during the day, and Darvocet at night. The Ultram gave me migraines at first, so I alternated with Darvocet and they went away. I also took Percocet once in awhile when I just couldn't take any more. Now I am down to Ibuprofen and one Ultram at night. One note about the Ultram, it affects your mood (in a good way) but when I reduced the dose, I really noticed the change and felt pretty depressed for about a week.

So now I'm just still trying to get my life back, †rying to get some muscle back in my leg, trying to put some weight on my foot, but it's so hard because I don't wan't it to get any worse...

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

Hi Shannon1,

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.

Anyway the only thing I do to help me walk or even do anything for more than 5-10 min is use my pain meds to my advantage by timing them when my pain will be the worst. otherwise I have no other help besides my lying flat on the bed with my foot elevated and my heat blanket set on low and just suck up the pain until (god help me) it settles down alittle bit so I can breath again.

Sorry its so negetive, but until something comes along, this is the way it is. Thank goodness football season is here!

If I hear or do anything helpful I will certinly let everyone know asap. Until then Its nice to talk to someone that has somthing in common, even if it sucks!!!!

Hope Everyone Has A Pain Free Day!

                  kind regards,

                           mike

Hi Shannon,

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!!

                                       kind regards,

                                                  mike