Hi there,
I am new to the site and have been trying to find people with similar experiences. I am a Pediatric RN and hurt myself at work. My condition progressed into RSD and I have been out of work for 9 months. I was wondering if others have had issues finding good doctors. I have a case manager who hasn't been too helpful. I have had 3 doctors suggest a sympothectomy has anyone else had this done? Did you have a hard time finding doctors and resources in your community? Any suggestions from others would be helpful! I have done PT/OT/message and they all wanted me to come back after surgery, the problem is that my case manager said it was denied. Any ideas?
Thanks,
Jennelle

One big, warm, tight, hug, handshake and howdy, moose-size welcome to the site. This place is amazing!

I'm not that familiar with RSD, (I have MS) but I know we have members here who do. So remember;

You are not alone.
You are one of us.
And we are here to help.

I am the MonSter that MS fears.

Hi Jennelle, and welcome to NeuroTalk! This is a great place to hang out with lots of nice and helpful people.

Here is the link to the RSD forum.

http://neurotalk.psychcentral.com/forum21.html

Hi Jennelle and welcome to NeuroTalk. I'm sorry for the reasons that brought you here. There are some truly wonderful people here who are very caring and supportive. I hope you'll find the help you're looking for. Have a look around and join in wherever you feel comfortable. Glad you've joined us!

Hi and welcome to NT

Glad you found this forum.

Yes, good medical help is hard to find. Keep looking till you find it.

There's lots of RSD suffers on this forum. I'm sure you'll get experienced advice from memebers.

Ask away, my friend.

Hello Jennelle and Welcome to Neurotalk - you will meet many great people here who I am sure will be more than happy to help you if they can!!

I'm SO sorry to hear that you have RSD and I really hope that things get better for you real soon!! I suffer from RSD in both arms and my left leg - I developed it when I was 12 years old after an ankle sprain and am now 14.

Many years ago, Sympatheticatmies were supposed to "cure" RSD however from what I understand it is now NOT reccommended as it has been found to not work that well and in more cases than not, it will just aggrivate it and make the pain worse. I have spoken to a few people on the RSD forum who have had the Sympathectamy so it might be worthwhile speaking to them before you go ahead with any harsh decisions!!

If you need anything, please dont hesitate to ask - I am more than happy to help you in anyway that I possibly can as I KNOW how hard it is to be diagnosed with such an awful condition!!

Take care of yourself and I hope to see you around the forum more soon!!

Alison

Geez, Ali,

You're so mature at 14. So sorry you're dealing with RSD and hope and pray you and Jennelle will find much needed relief in the near future. Your whole life is ahead of you. I would never have guessed you were a "MINOR."

Jenelle,

Welcome to NeuroTalk. Great to see you have come to be with us. Just let us know if we can be of any help. We are all here to assist each other as possible.

Again welcome, looking forward to seeing you around.

Darlene

Jenelle,
Welcome.
I was first injured in 83. I took me 7 long years to get a diagnoses of RSD/TOS.
Your case manager; what can I say, be kind to him/her always. Make him/her see your humanity.
Finding a good doctor is something you might need to take a hand in yourself. Look for a University Hospital, and find the Chief of Neurology. Get on the phone, and call neurologists and ask about RSD.
Back when I was diagnosed, Dr Schwartzmann and Knobler were the only doctors who even believed it existed! Now, I'm astounded at how many people I see who have it. What suffering.
Are you near a large city?

What kind of meds are you on? I take methadone 50-60mg/day, diazepam, cymbalta, (Imetrex, migraines)
(Aricept, TBI), Topomax, and some others prn.
The lidocaine patches are great for "local pain".

Sympathectomies are brutal. In every case it was spoken about to me, they tried it with an anesthesiologist first! To see if it "might" help. Never jump into an invasive operation! That only "might" help! That's Barbaric!

Nerve blocks may be helpful, but, an insurance company looks for something to be "final". Done. Over.
RSD, is never.
And, the sad thing is, you cannot tell them that. They'll shudder their ears fast than you can say rsd, if you try to "tell them".
You need a doctor with a CV at least thirty pages long, to write a report on you.
Find yourself a good one.
Ask doctors you know. "Who would you send your "family member" to, if they had RSD?"

Get active on this, the sooner, the better.

I wish you all the best, Jenelle.
PM me if you wish.

Pete
ASB

PS
I often quote this,, the triangle of care for RSD.

Your Meds / Your Doctor
Your Mood / Your pain management psych doctor
Your body / excercise, warm pools, walking. Use it, or Lose it.

This is where you will need to be, when it's all said and done. You won't need the psych doctor always, but, one you can stay in touch with occasionally, once you work through the beginnings.
(A Doctor wants to beware of "drug seeking behavior".
Don't mention drugs, just tell them of your pain.)
How's your sleep?
And, so on.

Hello Jennelle,

Welcome, to this site. I just found it a couple of weeks ago and it is amazing the information that you can gather. The advice from Aintsobad is so true.
I have full body RSD (8Years). No two people are the same and the condtion effects each of us differently as do the treatment. What works for me may not work for you. Injections did not work for me and I had them over and over.
Finding the doctors who understand RSD and want to help is difficult. You must take control on your health care be an active participant. Don't be afraid to ask questions and be direct with your questions do they know enough about the condition? Some doctors know enough to know they can't help and you can respect that. Find a good pain management psychologist. Mine is wonderful he knows RSD and he helps me sort through treatment options and legal matters. Excercise I water walk at the Y 2 to 3 times a week. The excercise helps you to keep moving and helps your mental balance.
Visit the RSDS.org website for informaiton and then contact their office for a doctor referal in your area. Sometimes they put an e-mail out asking members for recommendations. Aintsobad's advice about a neurologist is something you should look into.
I won't lie and tell you the road ahead is easy. RSD is an awful condition that effects everyone differently. Don't allow yourself to be defined by your condition.
My personal relationship with God and his peace that passes all understanding have been my life saver!!!!!!!!!!
Good luck and may God Bless You!!!!
Sherrie