Hi...I was diagnosed with RSD back in 2007 after a head on collision I was in. I shattered my right arm. After the surgery I was diagnosed with the rsd in my right wrist.
Well to make a really long story short, I have tried everything possible from neurontin to lyrica and every possible pain narcotic there is.
I am now trying a ketamine cream which I cant seem to put on myself due to the pain. I have no abnormalities to my skin other than the occasional motteling and some swelling in the right hand. I also have undergone over 12 stellate ganglion nerve blocks and I also have an internal spinal stimulator.

The stimulator worked the first 4 months than ended up agitating the rsd. The incision in my neck from the surgery now has rsd as well.
The RSD is now in my neck, my entire right arm, my lower right hip (where the incision is for the battery for the scs) and its also in my right knee. The worst of the RSD though is in my entire right arm. I have to put my arm in silk pajamas just to rest it down. Goosebumps sends me in tears.

Everything seems to have not touched it or made it extremely worse.

I am now at my wits end. My husband feels helpless and my family feels helpless...what do I do?

There is no specialist here and all I hear about are the low dose ketamine infusuions have been known to put the rsd into remission.

Any ideas?

Jim Broatch from the RSDSA maintains a list of ketamine providers. If you ask him he will e-mail you the most current data.

Have you joined the RSDSA yet? There is great info available on their website at RSDSA.org. Browse through their medical articles. You can use their search option to research just ketamine infusions if you'd like.

In the meantime, heat can be awesome. I love my heating pad.

The best of luck to you, and welcome to NT.

XOXOX Sandy

Dear Still Trying, We welcome you to NT and hope we can be of support and comfort. There are so many kind and compassionate people here for you. I am so very sorry about your accident.
Mine came following surgery. That was 15 years ago and now full body and internal organs.
Like was mentioned, RSDSA is a wonderful support site. Their annual meeting last year was here in Scottsdale, AZ Patients attended Saturday and Sunday was for Drs. and therapists.
One of my favorite educational sites is rsdrx.com go to puzzles list It is a list of 146 questions and Dr. Hooshmands answers. He practiced RSD for 40 years in Florida and now retired, but has an associate. You'll find a lot of good information.
Please do lots of research before any procedure. I wasn't correctly diagnosed for 4 years, but did start physical therapy for frozen shoulder following benign breast surgery. I am completely mobile except one hand is about 50% due to wrong diagnosis and delayed treatment.
For me, physical therapy , massage therapy although very painful has kept me mobile and out of wheelchair. I also have done a lot of pool therapy. Water needs to be 86 degrees. Hot tubs aren't good for some of us. No ice.
My toes started curling up in about year 12 and my Dr. had me in our pool every day and in 3-4 months, they were touching the ground again. I am so grateful. For the last 6 years I've had a good RSD Dr. He is a neurologist, psychiatrist, and pharmacologist. Good combination for what we have. When I went full body or generalized, my neuro suggested psychiatrist, i didn't like his two recommendations or really even him, and found my great Dr. in the yellow pages. I'm smiling.
Do you have a good RSD Dr.? Getting the right combination of meds is important. Many meds work on nerve pain that are not opiods. I'm on 2 high blood pressure meds. 1 sleeping pill 4mg of anti-anxiety med, lorazepam
4 mg of vicodin for pain.and one 120 mg cymbalta for antidepressant.
I used to be on 3200 mg of neurotin for the electric jerks, jolts, but gradually went off and have been off for 2 years without them coming back.
I was able to reduce the anxiety and pain meds with a better sleep pill that gave me 10 hours of restorative sleep. He did a trial study for seroquel. They found it not only helped fibromyalgia, but helped with sleep. I take 150 mg.
The ambien quit working
Epsom Salt Baths help me. Also have a hand/feet waxing machine that feels good on the hands and feet. I meditate, visualize, use biofeedback, journal, use candles, organic essence oils, distraction helps, reading encouraging books, staying in touch with family and friends, the tendency is to withdraw, but that is not really healthy. If friends are negative, we may need to limit how much we are around them. Try to be around positive friends and family. You'll meet many wonderful friends here.
Reach out and we will be here for you. One of your new friends, loretta with big soft hugs
PS: One important thing is to desensitize your hands, limbs. At physical therapy they would put my hand in a glass thing and blow warm sand around. At home I took 5-6 plastic bowls and put cotton balls, rice, beans, sand, sugar, just different textures of fabric and run your hands and feet thru. It's so important-just a little at a time so you can tolerate clothes, being touched, etc.
Take care, loretta

Hi StillTrying,
I am glad that you have found the messageboards..I've learned much from the experience of others, and have been given much sopport and understanding.

have you considered lidocain infusions..they have been very helpful to many...
I have an appointment on Friday where I will be inquiring about them, as well.
I'm sorry you are stil having much pain after all the meds and blocks...
Keep searching..the solution and/or relief could come soon..
hope4thebest

StillTrying, My wife has RSD and I always keep my eyes and ears open to something that will help her. One ray of hope is to check out "LostMary" posts. The post I provided is her latest post. If you do a search on her through this site you'll see her progression before and after the pump. My wife has tried several treatments with no luck but the pump is very interesting indeed.

http://neurotalk.psychcentral.com/thread117031.html

My heart truly goes out to you
This forum has been a lifesaver for me. I felt completely alone in my battle.
Please stay with us.....we build on one another's strengths here. We cry, we pray, we vent, and we celebrate as we go thru the gammet of this terrible battle.

I am so sorry to hear about the SCS going wrong. Are you going to have it removed?
As you get to know more and more folks here, you will find that there is some new hope around every corner.

Truly Caring
Rae

StillTrying, I'd like to add Lostmary once used a SCS.

I am so glad to know that there are others like me. I know this disease is relatively new. I am now seeing a psychiatrist to treat the depression and panic attacks I have. It somewhat works. for now at least. The pain is still there and if my clothes arent silk.... well I cry the first 30 minute I am in them. My doctor here seems to be getting frustrated because he swears my scs was supposed to help. It made it worse. And now I am having a hard time with him giving me other pain medication that might work. I know there is stronger pain meds out there. I dont want the narcotic pump because that means another surgery and more than likely the rsd spreading to the incision site like it did with my scs.
I have researched and researched everything I possibly can that will help me. Right now I feel like noone will help me and we wont be able to find a doctor that will be able to put me into remission. I want my life back. I cant even huug my husband.

I feel silly saying this because I know there are people with it worse on here, such as they are restricted to a wheel chair or mobility is gone. And my heart truly goes out to them.

I am only 24 years old and I want a family more than anytihng but until I get this rsd into remision I cant do anything. I cant start my career I cant start a family, I cant even seem to get dressed to take my dog for a walk. I dont know what to do anymore.

My husbands supervisors at work (military) are trying everything they can to get me referred to walter reed in maryland to see some sort of specialist because the military is treating rsd and pain disorders with the ketamine.

I am currently taking 12 pills a day....3 times a day. Im afraid thats going to effect me in the long run. If I can just find a doctor that will do the low dose ketamine infusion (not the coma) I honestly in my heart believe that is what will put this into remission. I really believe that. Its just a matter of finding him,

I also wanted to reply that I have been in contact via email and phone with Jim Broatch and he did give me that list. I contacted the colorado springs hosp with dr brewer and called everyday for 2 weeks and have yet to get a call back. Now we dont ccare where we go as long as they help us.

Why don't you google the hospital in Colorado and look up another phone number for the hospital? Sounds like you need to approach the doc from another angle, since the number you are calling isn't generating any replies. Maybe if you call the Pain Mgmt Dept (or something similar) your call will be returned.

And as far as the military approvals go - do you need to get your referrals in a certain manner? Find out EXACTLY how you need to get referred to Walter Reed. Who can tell you that? Can you call someone at Walter Reed and ask them? Check to make sure that they have ketamine, also. The military might be doing that only in Germany.

It's really hard when you are in pain to focus your energies in the most effective manner - I've learned that the hard way. A lot of times I've just found myself banging my head against a wall, totally frustrated, because I've lost sight of the big picture.

Can your spouse's commanding officer help you out in any way? Maybe somebody else can get you the referrals that you so obviously need, since you are in so much pain and have been through so much. It certainly wouldn't hurt to ask.

Please don't hesitate to PM if you have any questions....we are all here to help you. XOXOX Sandy