Originally Posted by Hillbilly_Dave
I have finally arrived at a crossroad...the end of denial about my CRS. I was 'fortunate' enough to get the rare opportunity to legally take a Deer out of season, on a Motorcycle. Messed-up details aside; developed CRS in right leg/ankle below knee. Has been making my life miserable and devoid of fun. Chronically broken toes, extensive numbness, swelling, etc...continued loss of functionality.
Three Nerve-Docs told me that it will eventually take me off my feet without extensive treatment ("yeah...right"...so I thought). Was eventually electrified, irradiated, scanned by cats, poked with needles, prodded, massaged and podiatrically molested in every form. Perhaps like others of us, I grew weary of such further indignities, figured I could "take it", and separated myself from treatment (other than meds).
It has finally came to a point where I have to question my long-term future, to swallow my pride and accept what has happened. And I am horrified at the thought it may be too late and eventually require amputation. Although at this point I am willing to accept it at as well.
Has anyone else ever 'mis-underestimated' CRS?
To the point of self-denial and acceptance of un-needed suffering?
I think that many many people underestimate CRPS/RSD and what it can do to us in our lives. It really is absolutely horrific the pain we go through and I think that if you don't HAVE it you really can't truly understand the depths of that pain. Don't get me wrong...there are other absolutely awful things out there and I can sympathize with those people who have them...but just like I think they cannot really understand what it is like to live with RSD I think that I cannot fully appreciate what it is like for them.
At any rate...I have decided to not do anymore invasive treatments. I experienced spread after a lumbar sympathetic block and now instead of just having the pain in my left ankle I have it in my whole upper body. Then...all the meds the docs had me on caused me to get seratonin syndrome...which was just awful to have on top of the RSD pain I have. So...after bouncing around from one doc to the next I finally said enough was enough. I ended up with a wonderful primary care physician who is very compassionate and who is willing to work with me based on what I want...not what will make the doctors the most money.
So I stopped all meds and started physical therapy (at home because I couldn't even drive myself anywhere in the car at that point). It took many months but I ended up with a wonderful physical therapist and eventually I went from being in a wheelchair not able to walk or stand to now being able to walk/be on my feet for hours and hours at a time (not to mention being able to drive and do all sorts of other stuff onmy own too). I got a TENS unit and an ultrasound machine to help me with the pain and I take hot baths with epsom salts too (these are really wonderful for the pain). The only meds I currently use are lidoderm patches and clonidine patches.
Just this past month I have started treatments with tDCS and I am seeing even MORE improvement in the pain and function with this (for which I am very thankful because although I got the function back with the physical therapy the pain levels were still very very high). I highly recommend reading the thread on here about it because it is not invasive and you can do the treatments yourself in the privacy of your own home for very very little cost (about $300 for all the equipment).
Anyway...I am very sorry to hear what you are going through. CRPS is such an awful thing to deal with and everyone is different (responds to different treatments and such). It's hard sometimes to make decisions about our treatment and it is very easy to get discouraged. Basically...the only reason I think I made it so far prior to tDCS is just because I was THAT stubborn (at least that's what my boyfriend says). I really think that physical therapy is the best thing. But you need to find all those little things that help you so that you can DO the therapy (whether that's meds or other things).
Take care and good luck. I hope you are able to find some relief soon.