Hi Mel. I was out today and didn't see your post until now (and I'm leaving and going out of town in a few hours).

The people on here are really nice and full of wonderful information and tips. I don't know that I would have been able to make it through everything I went through without their help and support.

The thing about RSD is that it really does affect us all differently. Some people never experience spread, some do over time, some do really fast...we're all different like that, The great thing about this forum is that no matter what you are experiencing, someone has been there and at the very least can share their experience with you.

I experienced spread after getting a lumbar sympathetic block for treatment. This caused my RSD to spread from my ankle to my upper body. When you think you are going crazy from all the stuff your doctors tell you...people here can let you know that you are NOT in fact crazy and that what you are experiencing is "normal" by RSD standards.

I agree with Kev that there can be many reasons for spread including improper treatment. I personally believe that my condition became worse and did not respond to some treatments because of the fact that the doctors had me immobilizing and using ice for MONTHS before I finally got to a doctor who knew about RSD and diagnosed me with it (I had some very classic symptoms that all the other doctors ignored no matter how many times I brought them up). Frustrating...but what can you do? You EXPECT doctors to know what they are talking about and you expect their advice to help you...not hurt you.

Other causes for spread can be trauma...no matter how small. This can include things like bumping into stuff, getting blood drawn, using crutches, having an IV put in...anything at all really no matter how minor. I know that sucks but the fact is that ANY kind of trauma can cause RSD and once you have it ANY trauma CAN cause spread. That doesn't mean they will...but they can.

And then there's the good old truth that RSD simply can spread because it does. I know it makes us feel better sometimes to know the cause and effect...puts our mind at ease that there is a REASON for why things are the way they are. But the fact of the matter is that you may never know.

The best thing really is to try and stop worrying about the WHY and try to start focusing on the solutions. No...there is no cure (yet...I always remind myself to add the YET)...but there are treatments and things we can do to make our lives better. No quick fix...but after many months and months of treatment I went from being stuck in a wheelchair not able to stand or walk at all (this was after my spread) I was able to not only get back on my feet but get back to working full time and take my life back. It's not the same and the pain is always there...but I have learned to cope with it and have learned to adjust my life and work around my limitations. There is hope.

With proper treatment there are also people who have achieved remission. I know things seem hopeless right now. We've all been there....but things can and will get better. Use the resources available to you to learn as much as you can about various treatments, to find the right doctors, how to make adjustments to many common day tasks so they are easier for you, etc.

For me...after the spread of my RSD resulting from the block...I decided to avoid ALL invasive procedures...including ketamine. It just wasn't worth the risk for me. I definitely didn't want an SCS...FAR too much risk of making things worse with very little evidence of having long term good results. After getting serotonin syndrome from the meds my docs had me on...I dropped those too and am living without them except for Lidoderm Patches and Clonidine Patches. I was able to achieve everything I did primarily through extensive physical therapy and use of tDCS. Not to mention ALL of the many little things I learned from people on here to help relieve the pain and adjust to my limitations. Things like changing my diet, hot baths with Epsom salts, using gloves to get things out of the fridge, and a host of other little things that help me live my life day to day.

All that said...I know my path is not the common one and my choices about treatments that are right for me are my own. EVERYONE needs to make their own choices about treatment and what is right for them. Get as much information as you can about any treatment you are considering so you can make a fully informed decision about whether it is right for you or not. Doctors won't always give you the full picture, but people on here can share personal experiences and also what they may have found in their own research about various procedures so you can become fully informed about the risks and benefits of various treatments. Ketamine and SCS are not for me...but there are people on here who have gotten significant relief from these treatments and would not go back and change a thing even if they could. There are others with bad experiences. Gather all the information and make the decision that you are most happy with regarding your treatment options. Hopefully you are able to find a doctor who you can work with who will be able to help you with the things you need.

Take care and ask lots of questions. Don't be surprised if it take a few hours or even a couple of days to get a response on here. Unfortunately for many of us, typing on a computer can be very difficult even on good days. We may not be on 24/7 and quite frankly many of us keep very odd hours because of difficulty sleeping with RSD and the pain. We will help when we can and the information is priceless. Even just a chance to vent your frustrations and get out the feelings amongst people who totally understand can be great therapy. I had some really awful times over the past few years and as I said before...I don't know what I would have done without the people on this site to help me through, support me, and offer helpful advice. I may not agree with everyone on here or share the same opinions...but I appreciate everything they have to offer and their advice, opinions, and stories have helped guide me to what are the right decisions for me.

Good luck...I hope you are able to find relief soon.