Dear "You're not alone"

Because my RSD started in exactly the same place yours did, I wanted to share my two cents worth of valueless experience because I do understand in part what you're going through.

My original accident was crushing of nerves in 3 locations in the groin and left leg that made my RSD staring point in exactly the same location as yours. Now since I don't know what your original accident or cause was that got the RSD started I'm a bit in the dark in this area, but I do know and understand the frustration of your situation.

First, while it's not your fault that you've gone to quite a few doctors seeking relief for the endless pain that's driving you halfway out of your mind, please don't be mad at doctors for asking why you keep knocking on more and more doors. While I and others at this site understand the desperation you're experiencing, the fact that you haven't found a reasonable solution for easing your pain is causing you even more.

This world is filled with drug addicts and people seeking easy ways of making very good money through the sale of narcotics. My narcotics have a street value of over 10 grand a month so it only makes common sense that any respectable doctor is going to ask the question about your motives. Not because of what you've done, but because of what so many others are.

What you need now more than anything else is an ironclad diagnosis and documentation that clearly explains the nature of your original injury and the current reasons for why you're not getting better. Be this through nerve conduction tests, bone scans and the list goes on and on. RSD cannot found by the results from a single test, but instead it's usually figured out by a combination of results that all lead the same direction. Be it swelling, glossy or bumpy texture to the skin, extreme temperature changes in your limb (mine is often up to 5 degrees hotter or colder), discoloration, and in some situations a limb that's contorted in some weird position. Pain alone is never a sole means of diagnosis. If you have some primary (the original) injury that's also giving some form of symptomatology then that also helps considerably. Without these tests and physical manifestations of the affected area, pain alone is rarely enough for a doctor to feel comfortable with handing out the hard hitting pain killers.

While good common sense tells you that if a doctor isn't providing the answers to your health problems and better yet assisting you with the rather extensive list of problems that go along with RSD (we're not just talking about pain pills here, we're talking about additional treatment and care), then fire him and move on. Thing is, this also can backfire to the point where you're going to have an even harder time finding a doctor who'll listen and study your case carefully.

Find one or two doctors (I have one for the infections and blood clots, another for pain and another specialist who decides things like when we'll do our next amputation and who keeps all my documentation in order) that you totally trust and then stick with them. Then allow the doctor to learn slowly that he can trust you and that you're not just another junkie looking for a fix or who wants a better standard of living. This takes time and lots of it because like all deeply involved relationships, they're not built overnight.

As your small team of trustworthy doctors really gets to know you and as they document each step they and you are following along the way, your care will slowly improve in all aspects.

Regarding your inner desire that you don't necessarily wake up tomorrow morning, we're all been there and we understand why. You will eventually get to a point where you'll accept the changes that are taking place and those feelings will subside at least in part, but there's nothing wrong with feeling that way, it's normal. With the kind of pain you're right now being forced to deal with that is probably seriously deficit in adequate pain management, these emotions go hand in hand. Only after your pain levels are being a bit better managed will they probably subside.

Seek out people like the wonderful group here that can hopefully answer some of the hard questions about treatment, medications and ways of coping day to day, but also seek out professional help as well. As long as you maintain a highly respectful attitude when dealing with doctors who have 11 plus years of higher education under their belts hence they deserve the respect because they've earned it, and as long as you accept the sad fact that you'll never possibly be pain free or live like you use to, you'll do a whole lot better overall.

I'm always here to help if you need it. Best of luck, Bob.