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

HI NIKKI,

IT WAS GREAT ADVICE THAT YOU SHARED WITH AUSTIN. AS I HAVE SEEN IN OTHER YOUNG RSD SUFFERERS ... YOU APPEAR TO BE WISE BEYOND YOUR YEARS. YOU ARE SO RIGHT IN THAT SOMETIMES THERE IS NOTHING QUITE LIKE A LITTLE PUPPY LOVE. MY 17-YEAR-OLD DAUGHTER SARAH, WHO ALSO HAS RSD, WOULD ABSOLUTELY AGREE.

SARAH, TOO, PARTICIPATED IN DR. SHERRY'S PROGRAM WITH LITTLE IF ANY RELIEF; BUT I WANTED TO SHARE HER STORY IN THE CHANCE THAT IT MIGHT HELP YOU:

In January 2005, our then 13-year-old daughter, Sarah, sprained her ankle in a dance class and was diagnosed with Reflex Sympathetic Dystrophy (RSD). RSD is a chronic, life-changing, extremely painful illness for which adequate treatment is often impossible to find. Many afflicted with RSD become disabled, unable to work or go to school, with only minimal relief found with even the strongest medications.

How could something as common as a sprained ankle result in such devastating complications? It is suspected that a short circuit develops in the spinal cord that sends pain signals to the neurovascular nerves that control blood flow through the blood vessels. The blood vessels constrict, decreasing blood flow and resulting in a lack of oxygen to the skin, muscles, and bones. This lack of oxygen and subsequent acid waste buildup leads to the intense pain and other serious complications. Sadly there is no cure for RSD; and it is known to spread, even to the point of becoming full body.

Over an 18-month period Sarah was hospitalized twice for weeklong epidurals, received several nerve blocks, took way too many medications, traveled across country to participate in an intense physical therapy program, and received numerous other complimentary treatments. She was under the care of some of the best doctors in the country, and yet nothing had stopped her pain.

Desperate to find relief for Sarah, we spent hours online searching for information. One evening we ran across a Discovery Health Channel broadcast about a young girl from Europe who had been bedridden with RSD for over four years. In her family’s quest for answers, they discovered that hyperbaric oxygen treatments (hbot) were key to their daughter’s recovery. Having been on so many emotional roller coasters of hope followed by disappointment, we were apprehensive to become too excited.

After further research, we were encouraged and felt compelled to give hyperbarics a shot. Plans were quickly put in place for an extended stay away from home so that Sarah could receive treatments at a freestanding clinic. After the first treatment Sarah thought that she might have felt some relief; and after half a dozen, it was apparent that we were on the right track. Upon completing 22 treatments at 2.5 ATA, Sarah was totally pain free but continued on to complete the 40-treatment protocol.

Sarah was the clinic’s first RSD patient so we did not know what to expect when hyperberics were discontinued. What we found was that Sarah’s pain would resurface every 6 to 8 weeks. We would then pack up and again travel five hours from home so that Sarah could receive boost treatments. Each time it took just three to stop the pain.

After many months of this routine, we began to check into other options. This led us to look at “mild” hbot chambers; but we couldn’t find any information indicating that these could address the pain. In our search we talked with a wonderful couple, she a doctor and he a diver and hyperbarics tech. They graciously invited us to come stay with them to try out their mild chamber. Sarah was in constant pain by the time we arrived, but she again found relief with only 3 treatments. Sarah is now the very proud and thankful owner of her very own chamber. She continues to have a few lingering signs of her RSD, having two pain flares in the past eight months. Both were triggered by infections; but for the first time in 3 years, we now have the means to help her.

Despite the many bumps in the road and the months of unending pain, Sarah has emerged a remarkable, happy, bright young woman. She is back in school and carrying a full load, recently received her driver’s license, will soon be attending her first prom … really just out enjoying many everyday teen activities. We share Sarah’s hyperbarics success story because it was only through learning from the experience of another that we finally found the help that she so desperately needed. Sadly the logistics of obtaining hbot, along with the cost, often make it a prohibitive option. It is heartbreaking and a tragedy that endless suffering continues when this remarkable treatment is available and has the potential to do so much for so many.

THE ABOVE IS A TESTIMONIAL THAT RECENTLY APPEARED IN THE INTERNATIONAL HYPERBARICS ASSOCIATION NEWSLETTER. I FEEL AN OBLIGATION TO SHARE SARAH'S STORY BECAUSE IT BREAKS MY HEART TO REALIZE THAT MANY DO NOT KNOW OF THE POTENTIAL BENEFITS THAT HYPERBARICS CAN OFFER.

WISHING YOU ALL THE BEST,
JEANNE

Very nice to meet you Nikki. Thank you for posting, Yes i went through Dr. Sherry's program this last time i went was the third time i had went for his treatment. I do have pets i have 2 cats. May i or if you like you can PM me the answer but where is your RSD located? Again nice to meet you.