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.

Dear baseball mama,
I am sorry for you pain and the terribly emotional impact that it causes..the mentally exhausting, and fearful state it causes..
I don't know if this will be helpful to you or not, but when I have the daunting, frightening thought that this can get even worse, and last for the rest of my life, i try to break it down a day at a time..the concept is simple and might sound trite, but I have found it really is so helpful to get in a mindset that is moment by moment..otherwise all of this is overwhelming..
I have found some books and C.D.'s that help with this..I know it seems so insignificant to even think of this while you are in horrendous pain, but it can help..I hope the appointment you have made with the psychologist goes well for you..and that s/he is knowledgable about pain psychology and approaches like Mindfully Based Stress Reduction..(Jon-kabat Zinn)
Sending you hugs,
Hope4thebest

WOW! Thank you all so much for your words of encouragement and support and for all the information. I'm happy to see that I'm in the right place . Lisa in Ohio the way you described being "addicted" to insulin and inhalers was like a lightbulb going off for me. I had never thought of it in that terms. As a registered critical care nurse who has worked in the ER and a public health clinic I have seen more than my fair share of drug seekers and people who are addicted to rx medication and have to admit that I have certain stigmas I attach to narcotic use. That is one of the things I am struggling with, as well as not adjusting well to going from being the nurse to being the patient and I'm finding myself very angry at times. Angry that I can't work and can't just get up go when I want to and that I can't run and play with my kids like I used to but I think mostly angry that I told my vascular surgeon, wound care doctor and primary care doc about my symptoms for sooooo long and begged for help and they just kept turfing me back to each other. I'm angry that had I been diagnosed in a timely manner I might have had much better results from my nerve blocks and might have a much better quality of life right now!! BobinJeffmo to answer your question, unfortunately I have had several integumetary changes to my leg/foot including thinning skin, hyperpigmentation, altered blood flow, decreased hair and nail growth and the ankle joint has also started to show signs of osteoporosis. And this has been progressive over the last 28 months so I think unfortunately I am one of the the unlucky ones whose illness will indeed progress. And with being a medical professional (in my "past life" anyway. I haven't been able to work since April of last year) I'm well aware of the complications that can arise, particularly for someone with my coexisting illnesses. But I know that those will be things that I have to come to terms with and I am happy to say that I did have my first appt with a psychiatrist who specializes in chronic pain patients on Tuesday. Just hearing someone validate my feelings and tell me I'm not actually going insane was very comforting. I did agree to a short term course of treatment with Xanax for the extreme anxiety days and Buspar on a daily basis and that seems to be making a tremendous difference. He also pointed out that (unbeknownst to me) I was actually on a very small amount of medication for someone with this condition, so at my neuro appt I agreed to a stronger dose of the Norco and that seems to be making a big difference as well. At the very least I don't have to take as many pills as often. But as comforting as all that is you guys have given me so much hope so thank you thank you thank you!!! Gatorsmama you hit the nail on the head. As much as my family is supportive and wonderful to me, they just don't understand. If I'm quiet and tense or short with someone, it's not that I'm mad at them or angry about anything, it just hurts to be me at the particular time and I need space. My poor husband especially feels like I'm shutting him out at times but I don't mean to. I just hurt! To know that there are others who struggle with the same feelings and obsticles is immeasurably comforting. So thank you and God bless each one of you! I look forward to reading more of the message boards and leting my newly found light at the end of the tunnel guide me through this dark time! Thank you friends!!

Dear baseballmomma and Bob...

I just want to thank you for for your posts...Very nice, informative and kind...It is so nice to be in the same corner with you and all of our family here... Bless you all and take good care...Hugz, Kathy

Hi Mama, I am so glad to hear that you have gotten angry!!- it is certainly better than despair, and when we get angry, we get active, which helps in the long run. ( Wow, what a disjointed sentence!) I am also so glad to hear that you are seeking and finding some good, qualified help. Never, never let anyone tell you that you are not entitled to your feelings mental and physical, they are yours and for that moment they are right. So glad that you are doing better and have found this group of special angels to walk through this journey with you. Peace my new friend, Lisa