Newly Diagnosed and miserable
 

Hi im newly diagnosed with RSD, any advice would be great, as it is a result of an on the job injury, and a workmans comp case,with my treatment and doc I feel are not the right fit nor do they listen to me. I have a great attorney but hes just not educated enough about RSD. Any advice please?

I am sorry that you are going through this. My RSD came from a work related injury too and I've been there done that with work comp. Just a word of warning (not meant to frighten you)...try to not post anything too detailed about your doctors, place of work, etc online because work comp can use stuff you post online to complicate your case. Just posting general information and keeping out specific names is just a good general rule to avoid any issues. Not that anything you post would necessarily be damaging...but let's just say work comp has a way of twisting your words and the context of them. Didn't happen to me...but someone else posted the warning for me way back when and I want to make sure I pass it along too.

Every state has different laws concerning work comp and different rules about whether you can choose your own doctors and any limit that there might be on how many doctors you are allowed to choose. Your attorney should be familiar with those laws.

What you want is to see a doctor who specializes in RSD. If you can find a doctor that you want to see (I would ask people in your area for suggestions on good doctors) then you want to have your attorney go through whatever process there is in your state for being able to see that doctor. He may have to request a hearing for approval of your seeing this new doctor or request approval from work comp...or your state may allow you to see a doctor of your choosing without needing to request approval from work comp first. Your attorney should know and I would start asking those questions now so that if/when you find a doctor that you want to see then you are prepared to take whatever steps are necessary.

Is there a reason you don't feel your doctor is not giving you the treatment you want? Finding the right doctor can be a real trial regardless of whether it is a work related injury. If this doctor diagnosed you with RSD then at least that's a step in the right direction...but their ability to diagnose doesn't mean they are the right person to treat YOU as we all respond to different treatments and have different needs.

You also want to become as educated as possible yourself about RSD and the different treatment options that are available. There is no cure...and some of us have minimal to no luck with many treatments...but there really are a lot of different treatments out there as well as things you can do on your own to help. You should read up on all of them, the benefits and risks of each, and try as hard as possible to make fully informed, rational decisions about treatment. I let a doctor bully me into a particular treatment and I paid for that with spread of my RSD to my upper body. It's also easy to pin all your hopes on ONE particular treatment and unfortunately there just isn't a miracle treatment out there guaranteed to make you pain go away. Do your research, know your stuff, and try to find a doctor who will work WITH you to obtain the goals you want from treatment.

Ask lots of questions here. between all of us we've seen and experienced just about everything. We understand what you are going through and I have learned so much from everyone here. What I have learned has made my life better...not to mention just having a supportive place to come and share what I am going through (good and bad).

Take care and if you have any more specific questions...please ask.

Hi Edward,

I'm so sorry that you've been diagnosed with RSD :( I hope it didn't take too long; usually RSD patients have to go from doctor to doctor to find one that knows about it and doesn't just say you're crazy. My daughter and I were lucky; our podiatrist knew what it was and diagnosed it immediately.

I don't have any advice about workers' comp issues, but I just wanted to welcome you and say that you're not alone! Boards like this are helpful, both for information and for venting to people that understand. Just start reading through the threads and asking questions.

Good luck finding a good doctor! That's really important. They are out there, so keep looking.

Glad you found this site, they're (we're) great at sharing personal experiences with this horrible condition. I'm really sorry you have to experience it.
I have no experience with work comp. but I agree you should be careful and probably do not use full real name on here.
Do keep looking for the right doctor, get new referrals whatever. Especially look at pain management offices. Be careful of the ones that exist only to dispense oxycodone etc.
The good ones will screen for drug shoppers. Try to ask when you call if there's a doc. with experience with RSD. Who gave you the diagnosis, maybe they can help.
There's no cure, but some drugs can help depending on the person. Definately AVOID ICE on the affected limb! Look at RSDHope.org as well b/c there are many articles and correct information there.

Had it for close to 30 yrs now, early on I got some good advice without a diagnosis. The advice that has helped me beat it into remission several times is fairly standard. Diet, Use It Or Lose It/ Rest when needed, Spiritual Meditation and force yourself to focus on being thankful for what you still CAN do. As most things in life attacking this problem is 90% mental. Good luck and welcome aboard.

:cool:

I'm a WC TOS that evolved into RSD.

If that's your real name, definitely change your screen name and be careful to not mention your employer, doc's name, or anything else that could be used to identify you.

Something as simple as posting that you had fun at your cousin's wedding last weekend could be used against you by WC if you've told them you can't get out of the house, etc.

This is a great forum. I hope that you will find the help that you need to navigate the system and some friends who understand to help you through those tough pain days.

Hi Edward. I'm a CRPS newbie too. Mine was not caused by an injury though. I developed mine following surgery on my right wrist in December.

I'm afraid I don't have much advice. I would say it is important to find the right doctor. You need someone who understands CRPS and in whom you have some confidence. I don't see how you can have much confidence in a doctor whom you do not feel listens to you.

It can be a confusing and frightening diagnosis. I struggle with not knowing what will happen. Since it is early days for me, I think there is still a chance it will get better.

I have found that no one I know has ever heard of CRPS or RSD and it is difficult to explain. I guess I also just don't always want to explain it. The great thing about this forum is you don't have to explain and you are welcome to vent. Everyone here understands what you are going through. :)