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.

Good morning,

The odds regarding RSD is that 90% never go any further then the stage you're at right now, and those who only have RSD in phase I will find they experience what most doctors call the 2 year burn out. Only 10% ever see RSD go into phase II. Then of those who go into phase II only 10% of those unlucky people will ever see phase III so if I was a betting man, I'd say you've still got a very good life ahead of you and the odds are in your favor.

Regarding your hesitation about medications. These are prejudices we all have in the early stages, but please listen and do what you're told because if you don't, then why go in the first place? While we're all guilty of playing doctor a little since "we" always know what's right, but the truth is we haven't gone through the years of draining education these people of medicine have so we really have no other choice than to do what we're told.

The care and the steps you take right now are the most important steps you'll ever take no matter what it is. Do the patches. They'll ease up the pain at this stage which in all likelihood which will make you more comfortable ad will keep you moving which is darn important. While the doctor might lack in bedside manner, so long as he's worthy of your trust, then follow his orders be it therapy, medication or standing on your head pointed toward the north during all solar eclipse, do it. Trust me, while you might not see the turnaround results you're wanting today or tomorrow, down the road you will. RSD is all about time so just stay patient - patient, and let the RSD run its course under the care of someone who knows what he's talking about.

You might have a year or two ahead that won't include the lifestyle you use to enjoy, but trust me - the odds are that before you know it, you'll be looking back on this whole ride as being just another glitch in life that you handled well so you could make a better tomorrow for yourself and those you love. Best of luck, Bob.

Dear Bob...

Interested..where did you get your information and stats from? Are you a physician or have close ties to one..I like the stats..unfortunately...I along with many others on the board did not fare so well in the %'s catagory of the non-spread..

Good day, Kathy

BaseballMama,

I am so sorry for your pain! I feel like you on many days. Right now I am sure you just want someone to say, it's going to be ok, you will make it and give you a hug even though you probably won't believe them. Usually when someone in my family says "I understand" I want to scream, there is no way you do or can and want to rant about what I am going through. I can't tell you that it will get better, for me it hasn't YET. I can only hope that you will wake up tomorrow having your "good day" and cherish every minute of it and remember that you can come here and someone will listen

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

Good morning Kathy,

I've been with a specialists who did his residency (and was offered a permanent position but turned it down to my amazement) at Mayo's for 11 years now and yes we've grown rather close over the years. Since this wonderful guy has never once turned me down the wrong path, I've just learned to trust his counsel and his brilliant mind. With a career that makes almost any doctor envious, this most humble of man never overreacts, but instead just works the problem.

One other point that's commonly discussed during my 30 - 45 minute appointments is that usually there's another contributing factor(s) that go hand in hand and can't be either fixed or fully repaired when a patient finds themselves further along the RSD phases. We also talk about the importance of maintaining as decent of mental outlook as possible even when you do think you're going half nuts. The recuperative effects of keeping a positive attitude are well documented but still not fully understood.

The hardest part during phase I and II is when to proceed with this treatment or when to back away because no two patients or situations are alike hence the very reason why some patients do so much better than others even though they both had for example sympathetic nerve blocks.

Another way of determining which stage you're at is by looking at the additional complications other than just pain such as severely decreased circulation, infections, blood clots and morphed appendage. It's these additional complications that eventually become just as severe and in some situations even life threatening that sort of push a person into the final aspects of phase II or into full blown phase III where you're just along for the ride, but there's just not a whole lot more you can do about it other than damage control while the doctors try to save your bacon.

One other thing. I guess you might say I've been exposed just enough to what RSD is that I've picked up a couple things along the way, but trust me, I am always the first person to embrace my own inadequacies about everything because the more I learn the less I really know after all. Gee, it does keep it interesting doesn't it? Do take care, Bob.

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

Hi Bob, Interesting stats- After 15 years of this, I would be thrilled for them to be true. Can you share where you got this information from. I started out with one frozen shoulder following surgery to now full body plus internal involvment. Thank you ahead of time, loretta