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Old 03-16-2012, 08:17 AM
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catra121 catra121 is offline
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Join Date: Jan 2010
Location: Illinois
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15 yr Member
catra121 catra121 is offline
Senior Member
catra121's Avatar
 
Join Date: Jan 2010
Location: Illinois
Posts: 1,785
15 yr Member
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First of all...I am SO sorry to hear what you are going through. I got RSD in my left ankle after a work accident 2.5 years ago and yes...it spread to my back. So I can relate to what you are going through. I know how bad the pain is with RSD (most of us do on here)...and how it can scare the heck out of you and affect your thinking.

Now...take a deep breath and try to calm down. It sounds like your brain is running a million miles a minute (and I don't blame you) and you are desperate for this pain to stop. I am not a doctor...but given what you have said here are my OPINIONS about what you have said.

First...GET A NEW DOCTOR! Both of those doctors are treating you very poorly and do not know what to do for someone with RSD. Blocks (lumbar sympathetic blocks I assume) are a pretty standard first treatment for RSD in the foot. They do not work for everyone but if done early on they have a better chance of success. BUT...that first doctor does not seem competent enough to be the one treating you because he did not tell you anything about your condition (not even the diagnosis) nor what you should be doing in the mean time to treat it. There are a lot of big no-nos that I would guess you don't know about. Why would he send you to someone who would immobilize your foot? That's one of the absolute WORST things you can do for RSD. It's right up there with icing...do not use ice on your foot at all. Heat is what you want to use for RSD. And the second one...recommending a spinal chord stimulator at your early stage?! Run away...far far away. Some people have found limited success with the SCS but most RSD patients are made worse by them or the units fail within several years and you are stuck with this major implanted device in you. Many, many experience spread and a worsening of the condition. For a doctor to recommend one to you so early on without you having even TRIED other treatments...that is someone who is just in it for the money and doesn't give a fig about you. And for him to tell you blocks never work...how manipulative and untrue. I personally have not had success with them...the last one actually CAUSED the spread of RSD to my back and upper body...but many people do get relief from them especially early on. Grrr...just thinking about these two "doctors" makes me so angry. And you are so desperate for relief I am sure you would do anything. Shame shame on them.

I'm not sure what sorts of meds you are on but typically...they should have you on a combination of meds to reduce the pain and swelling and other symptoms. When I was first diagnosed I had great success with Lyrica (for pain), Tramadol (for pain), Meloxicam (NSAID), and Doxepin (antidepressent...helped me sleep). This combo helped me...but there are many others. Neurontin is a big one that helps a lot of people with RSD, cymbalta, celebrex...the list goes on. I would not recommend going in and telling any doctor what you should be on (and you should always start meds one at a time...adding in the others only after you know how the first one affects you, whether it helps, if there are any side effects, etc). But these are just some things that you would expect with an RSD diagnosis. Narcotic pain meds had zero effect on my pain and I don't take any. Lidoderm patches also give me a little relief.

Definitely, definitely work closely with your physical therapist. Make sure they know about no ice and I recommend asking them to do ultrasound and stim with heat while you are there. The stim worked very well to reduce my pain levels...so much so that I now have a portable TENS unit that I can wear throughout the day and it has been a godsend. Definitely worth a shot and if it helps then you can ask the doctor to order one for you to use all the time. And PT for RSD is not really like PT that you do for other things...and hopefully your physical therapist knows this. You need to focus on constant movement to keep/get back the function...but you should not ever do so much that you cannot function the next day. You want to have lots of exercises you can do at home every single day. Moving is the best thing for RSD even though I know it hurts. If you immobilize or severely limit your mobility because of the pain, it will only make the pain worse.

Other things that can help...heat is a big one for many people. Taking a warm bath with epsom salts is a big one for me. I also have several different kinds of heating pads that I can put directly on my ankle and a space heater that I use especially during cool weather. There are also anti-inflammatory diets that can help reduce pain without meds...the 4 F's diet is a big one for RSD. Since going on that I have felt a little better.

The important thing that you need to realize is that RSD affects everyone differently. We all have different reactions to different meds and treatments. You just need to try to keep a clear head and make decisions that are the best for YOU. Physical therapy is the most important thing to getting your function back...but you need to have enough pain relief so that you can do it. It's important to attack this thing from all sides.

And one last thought...definitely consider tDCS treatment. It is inexpensive (only $300 to get all the stuff for it) and there are some amazing success stories with it. It is not invasive and has no side effects so unlike blocks or the spinal chord stimulator you are not putting yourself at risk for it spreading. ANY trauma can cause spread and neither of those two treatments have shown any consistent long term success. there is a thread on here about the tDCS treatment and I STRONGLY recommend reading it. It's long...lots of pages...but in the first few you will hear about ballerina's success and on the last page (so far) there is a wonderful post by CRPSjames that he wrote about his disasterous experience with the spinal chord stimulator and how tDCS has given him his life back.

So there is hope out there for you...don't let these doctors scare you and bully you into treatments. You should never go into a treatment scared. Be aware of any possible risks and make a decision that you are comfortable with (risks and all). There are great people on here who can give you wonderful advice. All of our experiences are different and I have learned so much from so many different people. You are not alone.

Oh...and as for the back thing. I had RSD spread to my back after a block. I cannot really say if your back pain is RSD or not...but if it feels the same as the RSD pain in your ankle then it might be. If it is different...them maybe the pain is caused from how you have been walking with cane/RSD. It is not uncommon for us to compensate and walk funny...which can throw the whole body out of whack.
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