Hi again Austin,

Your doctor's knowledge of hyperbarics (hbot) may be limited as it is something that many have not been taught in medical school. There is a neurologist in Florida (you can google rsdtherapy.com) who has had lots of success treating RSD with hbot. On this site is a link to a Discovery Health Channel Broadcast about a young girl who was bedridden with RSD for over 4 years, until her family came to realize that hbot was key to her recovery. The last I heard she was in medical school and doing well. We did not go to this doctor; but I am so very thankful that we found his site, as that is how we first learned of hyperbarics.

If you or your family would like additional information, I would be happy to try to help.

Jeanne

Actually yes i very much would, as my doctor told me today that they only use the Hyperbaric oxygen thing for severe wounds and he thinks they wont allow me to do it will RSD. So what do i do? Thanks

Hi Austin,

I've been researching for my own treatment after failing most other.

I found a treatment center in Tampa that does ketamine treatments run by Dr. Kirkpatrick. I know Dr. Schwartzman has a long waiting list.

Dr. Spiegel does hyperbaric oxygen treatments in Palm Harbour Florida.

Hope this helps. Best of luck.

I am actually realizing defeat is the out come anyway i go. Its to late even if the Hyperbaric or the Ketamine works my life is so screwed up the stress would upstart it within seconds. My friends are gone. My best friend that i depended on and was always there for me has abandon me and could careless now. My family is by law family but is so distant from me its not even funny. Basically i am just forced to sit here and await for it to attack my brain like it did on January 28th, 2008. Only this time i will not come back.
Well sorry anyone has to listen to me.

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

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