Hi Austin,

RSD is so incredibly stressful and a very lonely illness (I know, tell you something you don't already know); but often times the stress and lonliness stem from misunderstanding an fear. I am sure that it feels like all of your friends have forgotten you; but in truth it is very likely that they really just feel helpless and don't know how to be there for you. Is it possible that the stress with your family is resulting from fear about your RSD? They are probably scared, just like you ... and have no clue how to help. If your family has any questions about hyperbarics or our RSD experience, please put them in contact with us.

Please find someone you can talk to. I know that you asked in one of your posts for prayers, but always know that you can take it all to God in your own prayers. He is there for you even when everyone else seems to have let you down.

Jeanne

Sadly the family started along time ago and has nothing to do with my RSD. My friends are well just gone on with there life and do not care whatsoever that has been proven. My RSD started from an injury in 2003. I would like to hear your story if you would like to share.

Hi Austin,

You are right, difficulties in families are very sad and stressful; but you owe it to yourself not to let it rob you of your health and future. As I said before, PLEASE find someone to talk to.

As far as friends go, the fact that yours seem to have moved on is really hurtful. The same thing has been written time and time again by other RSD sufferers, and it might even be more true for teenagers as teens tend to get so caught up in the moment. I watched this happen to my daughter as well; but thankfully once she was able to return to school, she made a whole new group of friends.

I will share her story with you in a p.m. Believe me, there were times when we had no clue which direction to turn ... but we could never let ourselves give up hope. You have to do the same, buddy ... because it really can get better!!

Jeanne

Hi Austin

If you were here I'd give you a big hug. My husband has RSD and is going to be trying HBOT soon. Here is a good source for HBOT centers:

http://miraclemountain.homestead.com/Providers2.html

We contacted a center in Great Neck and they contacted our insurance to see if it woud be covered and it is.


You may also want to contact Dr. Ricardo Cruiciani at Beth Israel in NYC regarding the transcranial stimulation. It sounds a little scary but side effects are minimal and dr. cruciani has tried it on himself. Deb started a thread here: http://neurotalk.psychcentral.com/thread45197.html regarding the treatment.

Sending hugs and prayers your way.
teresa, nyc

Here is Dr. Cruciani's info:

Ricardo Alberto Cruciani, MD, PhD

Vice Chair, Department of Pain Medicine and Palliative Care

Director, Clinical Studies and Translational Research, Department of Pain Medicine and Palliative Care

Director, Integrative Pain and Symptom Management Program, Department of Pain Medicine and Palliative Care

Director, Research Division, Department of Pain Medicine and Palliative Care

Beth Israel Medical Center
First Avenue at 16th St.
New York, NY 10003
Tel: (212) 420-2432
Fax: (212) 844-1503
Medical Specialty: Neurology, Psychiatry

Hang in there. It's probably not nearly that bad.

For me one of my surest symptoms is pessimism. Initially when I got this thing the pessimism was just that and nothing more. It would come and go with the pain and other symptoms in a flash. I'd even experience the pessimism first and know the pain was hard on its heals. Now days the pain almost always comes first and the pessimism is mixed with depression and anxiety and often paranoia. But it's still the same thing; a mere symptom. I even worry about getting well when I hurt for fear I'll lose my income which is pretty tough for an older man in poor health. But then I remember that it's not my good health that's the problem and if it were then I wouldn't fear not being able to work. If the symptoms weren't there then neither would the anxiety, pain, and fatigue etc.

I am very lucky that my support mostly hasn't left me. Indeed, for a time I even pushed them away a little to save them the pain if I killed myself but this wasn't fair to them or me. They would be entitled to any pain they experienced. It has to be sufficient that they know.

The point is simply this; if you were better your perspective would probably change. Whatever is driving your family and friends away might change and if it doesn't you can make new friends and start your own family. I suspect your pessimism is a symptom rather than a result of your disease. Cure the disease and it will right itself in either case.

Best of luck.

A few years ago my RSD moved into the area around my heart and I thought I was having a heart attack. The ER said it wasn't but that didn't stop it from feeling like it for the next year. It still feels that way every once in a while.

My suggestion to you would be councelling. Imahoteop said it pretty good. What happens is we sometimes tend to push people away ourselves while dealing with RSD.

I have always dealt with depression but when RSD set in, I became so bad that I was suicidal. It has taken 10 years of councelling to get me to where I am now. I still deal with the suicidal issues due to the pain at times and the depression but I have a councellor to call up and talk to. They can be Godsend's to help us understand what we are going through and how to get through it and to go through it with us if you find the right one. It might take looking but you would not be sorry.

Our families do find it hard to understand RSD. I believe it's due to the lack of knowledge about it. If Drs. don't know about it then why would we think our families would unless they studied it right along with us? My daughter is my caregiver. She also takes care of a friend that is in a wheelchair from MS and she knows more about the MS then the RSD. I think because the MS is so much more well known and talked about.

I can only imagine how hard it is for you and being so young. My feeling with friends is that if they are real friends they are there for the long haul. They don't pick the good days to be there for you and not the bad.

Things will get better for you with the RSD in time also. I see so many people that comes a long way with the right care and you will find it.

You will find a lot of support here. Great people. What you also will find though is that you need someone to talk to in person or on the phone to help you get through the worst of it. We become hermits because of the RSD. I am today, I hardly leave my house but my phone rings everyday from friends calling me.

Don't give up. You will see much better days, with RSD it just takes time.

Ada

counseling to common are these words to me. But sadly this has been the furthest option from helping me. But in no way do i denounce its use for anyone.
Its just in my experience i have found that counseling is useless, this is because my mind and body are 2 separate items and yes i have done alot of mind and body sessions. And the family issue i am referring to a family must first be present to than think that its hard for them to understand rsd. But of my family basically i am my family. because the only other family member thats around is my mother, and that by far is the worst thing as we fight constantly. Pessimistic i am now but only after the complete destruction of my optimism, time and experience along with reality and whats factual have made it impossible to believe in the false hope of optimism. For a good long time i was very optimist even after alot of health and other bad problems but you can only walk blindly in false hope for so long.
Imahotep i understand what u mean with the heart thing although mine also mimics strokes, and even though your literally having a heart attack its not muscle related so it never will show up as a heart attack to a doctor. But the thing is its the nerves that regulate and do the pain not the muscle. My first RSD Heart attack was scary i had just had a friend over and went to walk back into the house and it hit and in a second flat was dropped to the floor and my left arm was numb and tingling. It stayed that way for awhile, but of course in ER terms "nothing medically wrong". Dreambeliever128 u are right about alot. I agree never give up. And i do hope the days turn better, I again thank you both for your posts.

I am very sorry to see what a hard time you are having with what you are going through and that your family doesn't support you with the help you need to deal with things.

With you being so young and not having anyone to help give you the emotional support you need, that is why I suggested coucelling. It doesn't have to be family councelling, you could go for yourself.

I do believe that good councellors can help us learn to find ways to help us deal with the pain and what we are going through. They also give us someone to talk to when no one else is listening.

I am sorry that nothing has helped you. I wish I had some ideals for you. I will say though again don't give up and don't quit looking for that right Dr. that can give you a lot more help then others have.

Years ago when I came on the forums there were so many of us it seemed like that was just starting out dealing with the RSD and a lot of us have gotten better and watched each other get better or at least get to a point to where we could tolerate what we are going through.

I had a Lady from the TOS forum reach out to me and she was a Godsend like my PCP. She talked me through a lot of the hardest nights for me. I wish that for you, that you will find someone that will reach out to you and help you get through this.

Ada

Hey. Im Nikki. Im currently 16 and ive had rsd for 2 years. I went through dr sherrys "2 week" program (more like 4 months) and did not have much success. i think you also said you went through his program...i forgot.

anyways, i know how you feel. teenage years kinda different, cant hang out with friends a lot, put in counseling when i really didnt need it, family not quite understanding..., etc.

one thing that may help is getting a pet, like a dog or something. make sure he/she is lazy so there isnt jumping. but they are great company and entertaining and loyal.

best of luck. i hope things settle down a bit

nikki