Hi RN Mom of 4,
I'm so sorry you are going thru this very painful disorder. I got it right after surgery. Breast biopsy- withdrew green fluid a few times, frozen shoulder (really rsd) It litterly took 100 pt and 100 massage. I did the massage on my own and glad I did. remission over a year. then other shoulder frozen, more treatment, another remission frozen hand while water skiing. misdiagnosed as RA Didn't seem right, so went to well know sports injury ortho hand doc. He knew in 1 min. Ordered nuclear med test on hand, confirmed, ordered tens unit- it helped non invasive. and pt with desensitization. Igot half of use of hand back, which I'm so grateful for and I don't have sensitivity. I can cut my food, button clothers zip clother peel a potatoe etc Then it moved to other hand, but got full use of 2nd hand because got pt started right away. 15 years now-full body and internally.
I've read a lot about RSD and would encourage you to read a lot about the scs. I've heard of some good accounts, but have heard of horror stories too. Please reasearch as much as you can. Is your Doc, RSD experienced?
One of the best exercises is water therapy-needs to be 86 degrees. swimming squeezing toes, hands. Has keep me mobile. One time my toes were curling up off the floor. My Dr. had me in the pool every day squeezing my toes and in about 4 months, they were touching the floor again. Even in a warm water tub bath can help. I'm so grateful I have no trouble walking and had very good pt's
Diet is extremely important. anti-oxidant, important.inflammation is a problem for us. high and low blood pressure. You are welcome to PM me any time. RSDSA is the national org. for RSD and lots of good information-you can put your zip code in and it will give you closest support group. We get a lot of great guest speakers. Last month we had a nutritionist on superfoods, I took notes if you would like them.
Also rsdrx.com and under puzzles list is 146 questions and a Drs. answers. He is retired now-Dr. Hooshmand from Florida, but another RSD Dr. has taken many of his patients.
Hope you depend on your family and friends. Journaling is a wonderful way to get your 'feelings' out. Light massage therapy helped me a lot. Your friend, loretta with soft hugs

I saw a few replies about the SCS, I know everyone is different & in the end the decision is yours. I wanted to share my story with the SCS...I've had it for a few months and want it out.The trial went great..the perm scs is awful for me,I've had it reprogrammed many times with no relief and my rsd has spread to other areas as result of the SCS. Anytime a person with RSD has surgery we risk a spread.
I do not want to scare anyone but please think this through ask as many questions as you can think of. Contact the company who will be doing the trial, ask your doctor for other patient input, see if there are other forums or social sites that can give you the help you need.
I wish I researched this more before I went ahead it with the perm scs.

All the best to everyone

Mom0f4,
I am so sorry that you are going through this...I can't say what I want to say. I, too have had my crpsII spread very quickly. My original accident was Jan 09 diagnosed in my left foot/ankle in Sept 09 and now it is to the hip where there are days I can't sit at all. I am angry, scared...too many emotions to go through. I just pass you words of encouragement that some time soon the pain will not be there.

Chefsuzz

Thanks to everyone for reading/replying. I went to my pm Dr. He was quite upset-he said yes it is spreading and that when it spreads it may just be the burn, or sensitivity that it doesn't have to be exactly as original area. He changed my narcotic to Oxycontin which I am so against but he said you are chronic and not using it recreationally the most important thing is getting it to stop spreading. He recommends SCS implant(trial went well) but suggested 2nd opinion for other options. Have an appt. with Dr. S beginning of March. My husband thinks i should do the SCS and not wait. Did I mention it is also burning in my other hand-only down hand and ring finger. I feel like i am under the gun-do i take action now or do i wait and risk spread? I have seen psych for relaxation techniques and they are helping. Looking for pool therapy or maybe just YMCA as someone mentioned although i dont think i could get into a cool pool. I am very thankful i have you guys for support. momof4

Hello RN Mom!

You're going to see Dr Schwartzman, in Philly? That's great!
He dx'd me back in 89 or so, after 7 years of nobody knowing.
You sound completely taking the right approach, did you say you were looking for a warm pool? Most all Rehab hospitals have warm pools! Just call,
and find out!

I'm intrigued by what you say about it going down your other hand and ring finger.
I forget what your injury was? How did you acquire this? The reason I ask, is because of what you say about your other hand. I, personally haven't heard rsd to spread that way, you may have TOS (thoracic outlet syndrome), especially if you were in a MVAccident.

This is what I have, rsd/tos from my first accident, and Dr S had it pegged within minutes.

About your meds, it's often wiser to take something stronger, than taking too much of something that doesn't work as well. After meeting Dr. S, I was quickly switched to methadone, and have been with it ever since. I really hope that the Oxy works well for you!
Unfortunately there is no magic wand or cure for what we have.
Keep moving, and smiling.
Cry when you must and rest.
Eat what's good for you, stay away from too much sugar and especially artificial sweeteners.
And, don't feel weak, if you need a psychiatrist. Usually PM doctors that are psychs work well. You must keep your mental health well, with this.

This is a "Managed" disease, not a cured disease. I was taught to think of it as High blood pressure, or Diabetes. Not a broken bone.
It would be wonderful if you could get into remission, and that will/might happen if you do a good job at managing it.

Prayers,

pete

Hi RN
I would ask you Dr his opion,,,if you are receptive to the trial of the scs,,then i personally would procede,,if you are still in smp,,,take avantage,,but if you wait until youve gone into sip,,then the scs will not work,,,My Drs waited too long,the blocks only aggravated my condition[crps 2 causalgia],,,Pray on the matter for guidance,,,go with your inner feeling,,,,in one aspect,,march is a long time away when were talking about the window of reversal,,,early aggresvise treatment is imperative,,,,,,,,,,,I wish you well,,may the lord guide you,,,,,,,bobber

We are all different for me the cool pool helps with the burning. My RSD is full body. The Y also has a therapuetic pool that is great for getting the muscles to lossen up. I can't remember the temperature of the pool they can tell you at the front desk. The therapuetic pool is used for the arthritis classes.
I went to see Dr. S in Philly several times. His knowledge of RSD is so comforting. Even though I don't have any future planned appointments. He is a great source of information. When I have questions I call him and if he doesn't return the call one of his nurse will. Call his office for an opinion on your SCS being implanted.
I ask God for directions with my medical care. Prayer is a must in my routine for care.
Take care,
Sherrie

Also, with Dr. S.
If you let his office know you're early on, and are looking if possible for a cancellation, they'll usually try to work that out for you, if they can!
Are you near the Philly area? (I see Dr Knobler, in Ft. Washington, who used to be Dr. S's partner. They are good friends.)
I'm not suggesting one over the other, I"m sure you waited for Dr. S for a while. But, if you're close to the area, Dr Knobler is surely as excellent choice.
I've been with them both since 89 or so..(rsd memory)...

Wishin' and hopin' for the best!

pete

KETAMINE!!!!!!!! was the answer to my prayers. infusions... it was spreading from just a hand to my arms back ,etc... any quetions... feel free to ask.

Hi Hannah, I am looking into ketamine. Are you CRPS1 or 2? I had an initial nerve injury and I haven't read much about CRPS2 and infusions. Did you need 5 or 10 day? Where you able to get off meds? How often do you need boosters? Thanks so much for your help. momof4