Hi,

I'm responding to the person who feels that RSD patients cannot be happy and positive. I'm exactly that: happy and positive. I strive to find the good in my grim situation. I have full body RSD since August 2003 from a summer camp accident (laceration on jagged top of a fence) and a TBI from the same accident (hit head on ground after falling over fence), along with some other ailments that are not related to the RSD (ie: asthma, gall bladder, etc.). I got hurt when I was 22 and fresh ou fo college, and I'm currently 28. As I said, I'm suffering symptoms from head to toe: all four limbs/hands/feet, head, face, teeth/gums/mouth, eyes, heart, lungs, uterus, etc. -- really grim situation going on here, as much as I hate to say it. My symptoms are excrutiating and severe, and there is nothing to do about it at this point other than waiting for my turn at ketamine (seel below). Yes, it's easy to say that there's nothing good coming from having RSD. Depression is a HUGE problem in our community where 4/5 out RSDers are depressed. Well, I'm the 1/5 who isn't, and I've met many others who have the same outlook as me (I'd be happy to connect you to some of them if you'd like to hear their opinions on the matter). In part, depression can't be controlled well, and there's often no way to prevent it from happening, though, it can be made a bit better depending upon one's personal philosophies on life.

Yes, RSD has many awful things associated with it: insurance problems, moneraty issues, the pain and symptoms themselves, family/friend constraints, etc. I'm not saying that I don't have a bad moment here or there (and boy, do I have PLENTY of them), but it's what I do with these moments that's key. Whenever something bad or hard happens to me, I try to see the good in it. I have been doing this since long before RSD came into my life. I have always felt that everything in life happens for a reason, and I'm constantly striving to seek out those reasons, learn from them, and use them to better my life. So much good has come from my having RSD: I've met tons of lovely people from all over the world, I've learned about myself and life, and I've become active in a desperately unknown cause that needs to be heard. Those are just a few examples. I run several RSD support groups on Facebook, I'm active with RSDSA and some other major RSD organizations, and I always try to uphold people who are precisely in your position to help them discover the good and meaning behind their own RSD.

Sure, I would have never chosen to have RSD. I haven't been able to finish my MA at NYU in Early Childhood Education, though I still hope that someday I'll be able to go on for a PhD/EdD in Education and become a researcher and professor in the Education field. I've been wishing to be able to go back to being with children in classrooms like I used to while I was working on my BA. I've always wanted to develop my own family, and my eggs are starting to rot because I'm not well enough to date. There are tons of hopes and aspirations I had prior to this sudden accident. I still cling to these dreams, as perhaps there will be hope of remission when I get the ketamine coma (I'm in line for the ketamine coma and infusions with Dr. Schwartzman). And should I never be able to carry out these ideas, I'm sure I will find other ways to fulfill my life. I still try to live life as normally as possible and to the best of my ability. I currently volunteer at NYU Medical Center (where I mostly get treated) at the gift shop and in Pediactric Therapuetic Recreation in the Rehab wing, I tutor/mentor college students at a local public college I attended before the accident, I teach a beading class with senior citizens at a lunch program once a week . . . all in between my various medical appointments. When I get home, I crash during evenings and weekends, but at least I am finding joy in doing manageable things I love and otherwise never would have done were it not for the accident. These experiences have helped to shape my desires in life, as well as expand my horizons. It also helps that anywhere I go, people help me get through my day, else, I wouldn't be able to accomplish all of this. Thanks heaven for good people.

That's my general perspective on the matter. There are good things in bad situations, but you'll only find them if you look for them. In fact, I challenge anyone suffering from RSD depression to take a good look inside themselves to find the meaning and positive value in having RSD. If you need help doing so, I'm always glad to oblige.

While I can't comment on the reason why you may have been rejected, I do know that Dr. Schwartzman has been studying RSD longer than anyone. With the infusions, and especially the coma, he has come the closest to finding a cure than any other doctor in the history of RSD. That's a HUGE deal. While I'm sorry you got rejected, it's still not a reason to bash Dr. Schwartzman's reputation and skills. He's not only an excellent doctor, but a kind-hearted human being who has taken a great cause upon himself in the past 30-35 years of his career. Someone here said that they have to feel that you have a chance at remission and getting back to physical activity and a normal life, and this is entirely true. Most people are, in fact, denied from the infusions or coma for various reasons. While it's quite upsetting to those people, like yourself, you need to remember that there are qualifying factors to the research guidelines. Only the very worst cases are considered for the coma. If you are interested in getting ketamine infusions, there are other places in the US that do them where you can inquire -- you just need to find an experienced, reputable place. Dr. Sherry's program is also excellent, as you said, and I personally know teens who have benefitted. I understand your frustration, but there must have been a good reason if they decided to deny you. I'm sure you could get your hands on the report they wrote following your visit if you call the office to get a copy. You have a right to see your records and understand why you were denied. I hope by now that you have found other treatment modalities since you wrote this post early this year, and if you need help finding other places to get treatment, I'd be happy to help you figure it out.

I don't use these forums often. I was just caught by this conversation while searching the web. If you'd like to contact me, *edit* Please be patient for a response because I'm really not well and often can't get online. I will reply at some point. If it's been a while, remind me to get back to you because my TBI causes me to forget sometimes. And feel free to not only write to me, but send a friend request as well. I am happy to get to know anyone who struggles with this problem and do my best to help you conquer it.

Here's wishing you all a happy day! :-)

xoxoxoxox,
Marsha
*edit*

Hi there!

I just want to say that depression is a legitimate problem, and most people with any sort of disease suffer from it at some point. Please remember that it doesn't matter how long you have had a disease, it matters how it affects you and how you react to it. (Just because someone may not have had this for 2 years does not mean that their depression is unjustified.) For me, realizing that my levels of depression really affected my pain levels and interpretation of that pain was a huge turning point in treating my RSD.

You say that "my RSD needs to be taken out of the equation before my depression can go away." And while getting rid of this would be wonderful and ideal, I think that many of us know that it just isn't going to happen. So the question becomes, if the RSD cannot go away, can the depression go away? And I think that the answer can be yes. And even if the RSD went away tomorrow, would that automatically make you happy? A lot of cancer patients suffer from more depression after they go into remission because of the weight of what they just went through.

I want to see everyone living a full and happy life despite being sick. I'm not saying that it's easy, and trust me, I want to attack people when I am having a bad day and they tell me to "be happier" or "get happy". But one of the things that I have been doing for myself for the past 5 or so years is to focus just as much on my mental state as my physical state.

I too have been on tons of different antidepressants (9, before I found my current one that actually works- Cymbalta.) And I have had more spinal surgeries than I can count. (My SCS liked to move around a bit.) And it did take me a while to find a therapist that I liked and that helped. And it was one of the hardest things that I ever did, but I went to therapy for years every single week. Don't just "go through" therapists. Try to find one that is right for you, that will truly help you. I also firmly believe in meditation and mindfulness. The amount of stress that went out of my life because of these two things was, and is, truly amazing.

There is no shame in having a mental illness- and depression is a mental illness. It is no more real or imaginary than RSD. So dealing with it is just as important. To me it has made the difference between constantly suffering and being in pain. Your brain is a powerful tool, and it can be used for both good and bad. When I was younger, I used to build this wall between myself and the RSD. I always told myself that the RSD was not part of me, and that I was totally separate from it. But at some point I realized that we both shared the same body, and that if I was constantly attacking and trying to kill this part of me that was never going to go away, I was only injuring myself. Being kind to yourself and treating both your body and mind makes a world of difference. I went to a program at UCSD that was based on Jon Kabat-Zinn's work. It changed my life and was one of the best things that I have ever done for myself.

And please, I think that a lot of people would appreciate it if we didn't attack certain medications as not even being medicines. If Tylenol works for one person, but not another, that's fine, but nobody needs to make fun of it. This isn't a contest about how many meds we're on. It's about being a bit happier at the end of the day.

Lynns

Lordwood said the reason he got turned down for the infusions was his depression. I believe him. When I first started with my depression, I had several Drs. that would not help me due to my depression and they said as much. I believe they feel that a person can be so depressed that their system won't hold up for what they are asking to have done. My depression was so bad that I had to sign a living will years ago because my PCP didn't know if I could make it.

Depression comes with illnesses and it can be made worse by illnesses if you already deal with depression as I did and many others do.

I couldn't have got through my depression without my Dr. councelling me and although I feel like I am at a better place, there are times I still call him up for help with my depression. Some people can't get through it alone. It depends on how deep you are in it. I use to describe it to my Dr. as being at the bottom of a well and I couldn't pull myself up with the rope and there were times I couldn't hold on to that rope any longer. He told me many a time that if I held on, he'd pull me out. I was very suicidal for years and still think that way at times.

Lordwood has delt with this for quite sometimes. He hasn't been here in a long time and I send him emails and hope he is doing ok. He has been through a lot and to find Drs. that will not help you is devastating. You get your hopes up and then it falls through.

As far as Dr. Swartzman, I have met several people that have went to see him and their visits weren't what they had hoped either. It goes both ways with Drs. Some like them, some don't.

You can't take RSD out of the equation either since there is no cure for it. People do go into remission but it can come back in places or completely.

Depression doesn't go away either because you have people telling you they love you all of the time either. I have that, and it didn't matter that they were saying it. To me, depression, is like being a shell of a person with no feelings inside of them. No good, bad, funny, sad, love, hate, you'e just there.

I have heard that line, everything happens for a reason. After what I have been through, I kept asking God what that reason was. I'm sure others do the same. I sure haven't learned it yet. I'm ok with where I am today but it took 22 years to get to that place. Actually 58 if you count I was born with depression.

We are all at a different place in this journey and a lot are just starting it so we have to let them set their own paces at getting better. We sure can't just be talked into it overnight and since there is no cure for the RSD and really no definate ways to help get it into remission or better then we are all pretty much walking not running through this journey.

Ada

Since I have been on this board I have NEVER seen a complete recovery from any of you that have had Ketamine infusions and maybe the coma. The percentage of success sucks and there is no long term effect data on. Maybe it could be from myself watching someone come off ketamine or the stigma of being a street drug and animal tranqulizer.... I would have to be dying before I would try it. I will always put my 2 cents in went it comes up so if I offend anyone the I am sorry. I have seen it first had and it just scares me.

Cindi

I thought I would share these links with you:

(These are some of the people who are now in remission - I think there are 9 examples.)

http://reachforrecovery.net/aftergermany/

http://brandyupdate.wordpress.com/ (notice comments on Brandy & Elizabeth)

http://blog.tracysrsdstory.com/2008/...ly-answer.aspx

http://www.rsdfoundation.org/en/Eliz...mineFLASH.html

http://www.rsdfoundation.org/en/Dr_Stocker_Video.htm

http://www.rsdfoundation.org/en/Heather.html

http://www.rsdfoundation.org/en/Kaci.html

http://www.rsdfoundation.org/en/Lindsay_Synopsis.htm

Here is another helped by ECT (that makes 10 examples):

http://www.ncbi.nlm.nih.gov/pubmed/17660856

http://abclocal.go.com/wpvi/story?se...lth&id=6623646
So about 76 people have been done- everybody comes back with great improvement- and 50-percent seemed to be cured," Dr. Schwartzman.

Never give up hope!

With God, all things are possible!

Here is another one:

http://www.rsds.org/electronic%20ale...62008_136.html

She's coming along great, about 95%, which is awesome," said a happy but exhausted Dawn Marie. "She is more herself again and has a big smile on her face."

Deussing is now on a six-month timetable to full health. Physical therapy including incremental exercise, periodic ketamine booster shots and a minor operation to relieve the remaining 5% of pain in the back are the only bumps left to a full recovery.

The therapy will help to re-strengthen her body slowly and methodically. It is the longest part of the six-month program. Deussing has been advised to take things easy to avoid any possible retriggering of the nerve disorder.

"Being stress free is so key for the recovery and the treatment," Deussing added. "My family was really supportive of me. I later found out I was the 13th patient to have the treatment in Mexico.

"I knew it was going to work. Having a positive outlook is also key. If you go in with a bad attitude like, 'Oh, this isn't going to work,' or, 'I'm going to be sick all my life,' then it just isn't going to work."

She felt so good after the surgery she made the mistake of resuming her normal schedule too quickly, subsequently experiencing nausea and vomiting. "My body was saying, 'Slow down.' I couldn't just jump back into my life," she said.

She has some advice for others who may be facing the disorder: Look on the bright side.

"You have to stay positive. Don't give up! I've kept in contact with three patients who will be going to Mexico and patients who are going to Germany. You need to stay positive. If you have a crappy outlook or a crappy attitude, you are going to do crappy, that's the bottom line. You can't leave everything up to the medicine."

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2584055/

Ketamine as an adjuvant in sympathetic blocks for management of central sensitization following peripheral nerve injury
Rani A Sunder,1 Gokul Toshniwal,2 and GP Dureja3
1Asst Professor, Dept of Anaesthesiology, All India Institute of Medical Sciences, New Delhi, India
2Former Resident, Dept of Anaesthesiology, All India Institute of Medical Sciences, New Delhi, India
3Ex-Professor Dept of Anaesthesiology, All India Institute of Medical Sciences, Currently, Director – Delhi Pain Management Centre, New Delhi, India
Corresponding author.
Rani A Sunder: rani_kannan2000@yahoo.com; Gokul Toshniwal: grtosh@gmail.com; GP Dureja: dr_gpd@hotmail.com
Received July 1, 2008; Accepted October 25, 2008.

Research is also being done in Australia, Japan, Korea, Netherlands, UK, US, tons of places.

They are having success with mirror therapy, physical therapy, ECT, various infused medications and even, in some cases, surgery.

With the use of functional MRIs they can see the brain reversing back to a normal brain pattern. It is not usually a quick fix but it is possible!

Dear Ada,

I have also had periodic bouts with depression throughout my entire life. Not sure why. I married a terrific man close to 25 years ago and we are still very close. My kids are really decent kids. I think I might be like you, perhaps we were just born with some chemicals that need tweaking.

I am fortunate in that I am extremely strong willed and determined, very disciplined, and remain high functioning in spite of my RSD - my legs and feet still work but I walk many miles a day and there was a period of time last year when walking those miles was excrutiatingly painful. After 4 Lidocaine infusions my right leg is much better, but it does have RSD.

Like you, the black hole of depression beckons at times. And since taking my leave of absence from my job early last summer I have spent countless hours with tears just dripping off my face. Go figure - how many people would have relaxed and enjoyed a summer off in the "Ocean State?" Instead, I cried and cried. And continue to do so on almost a daily basis. Reducing my Fentanyl did help a little, when I was one level up from the patch I am currently on I could not talk to anyone from my family on the phone (they all live far away) without completely breaking down. It was totally unnerving (for them too, I'm sure).

Thanks so much for your candidness on this subject. It helps to know that there are others like me.

I am working hard on learning the mindfulness based stress reduction program to reduce my pain. There is a good book called the Mindfulness Solution to Pain by Dr. Jackie Gardner-Nix. I bought it on Amazon for about $13 or so, it was worth it.

Thanks again, XOXOX Sandy

Hi Sandy!

I just wanted to give you a link to check out. It's the UCSD MBSR program website, and it has some really great resources. It has guided meditations and relaxation exercises that you can download. I commend you for being proactive on this- I know that it's hard, and self examination can be brutal sometimes. But I know that for me, this program was one of the best things that I have ever done for my pain or myself.

Have you ever thought about seeing a therapist/counselor? Sometimes it really helps to talk to someone who is outside of your life and has no attachments to you. It does for me at least. I don't like talking to my family and friends about RSD because I feel guilty for burdening them. But with my therapist it's really different. Just a thought. Hope that this site helps out a bit. And I know that there are similar programs all over the country. Google and check it out!

http://mindfulness.ucsd.edu/mbsr.htm

Lynns

Thanks for talking about your depression. I think being on the forums also helped a lot. I met one lady on the BT forum years ago that was just like my Dr. She would call me anytime of the night to check on me or I'd call her. The first time she called me it was around 2 in the morning. She told me to send my phone no and she'd call me. I credit her, a good friend here and my beloved Dr. I actually called him at 11:30 at night begging for help. He'd talk me through it. Bill was sick at the time too, but he was great about helping take care of me. Bill and I were married almost 35 years when he passed away. I have a lot of family and friends now that help me out a lot.

As far as a chemical imbalance. My Dr. told me years ago that I was missing a chemical that fights off cancer and diseases. I've always said there wasn't anything normal about me. When I saw him Wed. he was laughing about it because now I am having to switch stomach meds due to having an allergic reaction to the Prevacid. I sure don't do meds too well. I'd rather deal with the ailment then the meds at times.

I can spot a depressed person a mile away but I have only met one in person that was as bad off as I was. We signed ourselves into a mental facility around the same time and they threw us both out just about. I couldn't take depression meds, so they didn't want to bother councelling me. I think they thought we were too hard of cases to deal with. After seeing a couple of other Councellors that were useless my PCP just said forget it, he'd councel me. It's took him over 10 years to get me this far but he's been my Dr. for 19.
I do believe that councelling is important for some people to help them get through what they are going through and trying to deal with the pain but unfortunetly, a lot won't admit they need help to get it.

Now I might be able to enjoy that vacation you were talking about. I did go back home last year for a visit and got sick the second week so it would most likely have to be a short one.

I always thought I was a weakling but I know now I am not. Like you, I walk a lot. For 8 years I walked and cried at the same time. I'd walk 3 miles a day and cry the whole time in pain and depression.

Meditation and prayer is very important for people with depression. My Dr. taught me Meditation and gave me tapes on it. He prayed with me many a time and encouraged me to keep walking.

Answering the phone was not one of my big things when I was at my worst. I hated answering it to talk to anyone. I had a select few I knew I had to talk to so I'd know they were all ok if they called me. I still don't answer the phone a lot of times only because I don't feel like talking.

Books and hobbies help also. My PT's receptionist gave me the best book on depression years ago. I wish I could remember the name of it. It was a ladies story and that book seemed like it was written about me. I gave it to my Dr. so I would say he has it in his Library along with the RSD book I gave him. I wanted him to read it to see what I was living with.

The meds do add to the depression, that's why we worked so hard for me to get off of them. Even the Prozac and Zoloft made me more suicidal.

That's why I worry about certain people when I know they are going through major depression. I know what it's like to want to end it all. I have know 9 people in my life that committed suicide. So I know it's all real.

I love that lidocaine too. I swear it's what has helped me. It was a slow way of getting it, through 1000's of shots but it worked. Luckily, my PCP is also a Sports Medicine Dr. so he knew how to deal with pain and what he didn't know he learned. He also gives painless shots. LOL I'm not completely pain free but I do feel like I am pretty much in remission with it.

Sandy, I hope you are at a better place today then you were. Stay here on the board and talk to everyone and enjoy what you can of life in the real world.

Ada