Reflex Sympathetic Dystrophy Support Group

Hi tb1233,
Well you've ask a really tough question. A lot of adults, me included have difficulty handling RSD. I applaud you for even reaching out here to get help on how to help- its the right thing to do. Now, as to suggestions on how to help- that's harder as I do not know your sister and how she reacts to things while in pain. Does she push you away and want left alone? Perhaps, the best way to start is to play a game at home, board or game station which ever she can do, and during the bad times just try to be there and let her know she is not alone- I know it is hard during the flair-ups, can she stand a cold cloth on her forehead, or just light rubbing there? try different approaches to just being there, listening, and supporting her as best you can. There are other teens who post on the chronic pain group- have you tried there? perhaps a pen pal who understands will help? I think the main thing is to help her not give up on life, it's so easy to do when you are in pain 24/7- it's exhausting both physically and mentally. Does she see a health counselor or someone who she can just talk with about how she is feeling?

Bless you and your sister- gentle hugs to all!

Dear tb1233,
I am 14 year old girl, and have RSD. Last summer, I had a dancing accident which led to having it casted for a month. After having the cast removed, I was still experiencing pain, so i was put into a boot. After the pain only got worse my mom decided to take me to a different doctor. To make a long story short, after failed treatments, lots of testing, more doctors, and incorrect diagnoses, I was diagnosed with RSD. Ive had 2 sympathetic nerve blocks, which failed, medications, cremes, and therapies, but nothing ever helped with my pain. So last monday, i had a Spinal Cord Stimulator implanted. I am happy to say that when the stimulator is on, it 100% covers my pain.

I too have felt abandoned by my friends and sometimes even my family. Only someone with RSD can fully understand what another RSD victim is going through. RSD is a scary and complicated thing. It often causes many failed treatments which can be extremely frustrating and devastaing, which makes it very hard to handle. Not to mention the physical aspect of it all.

The only advice I can give to you, is be there for her and make sure she knows you are there for her. Be there if she wants to talk about it, though I often find myself avoiding the subject. Don't say you understand or feel her pain, but say you can't imagine what she is going through. She probably misses out on many things with her friends, due to her conditions. I'm sure she feels like no one understands. It's hard to give advice on this because RSD is obviously not soemthing common in as young as people as your sister and me. She probably feels alone and scared. To expierience RSD at all in your lifetime is tough, but at an age like 14? It can be very hard to handle. So I adrmire your sister for all she has been through. LEt her know that if she ever needs somone to talk to, I am here. Blondeboss915@aol.com Take care, and I wish your sister all the luck.
-Kara.

Hi tb 1233,
I am a 36 year old female that was diagnosised with rsd in Dec.2008. I had a paper roll fall on my left foot that resulted in two fractured toes and a crush injury that caused nerve damage. I understand the pain of rsd. There have been days for me that the burning pain of my body made me not want to even get out of bed. I have been on many different painkillers and I have had four lumbar nerve blocks. They have only offered temporary relief. The swelling had gone from my foot to all the way up to my knee. In Feb. I started doing Hyberbaric Oxygen Therapy and I am now walking without my crutches and I have had to take less pain medicine! Hyperbaric oxygen therapy involves putting you into a special chamber where you breathe 100% oxygen that is pressured to greater than one atmosphere(sea level). It is safe ,painless, and well tolerated by most rsd sufferers. It can heal injured tissues, regrow new blood vessels, reduce swelling etc...but the most amazing thing to me is that it can redirect the brain to perceive pain through the central nervous system. When someone has rsd his or her pain is perceived through the sympathetic system(fight or flight mode)and that is why a cool breeze or soft objects can cause extreme pain.(I know this too well.)
Unfortunately, Hbot is not fda approved for rsd so it is not covered by insurance- so you would need to seek out a clinic near your area.You can find more info., studies involving hbot on the net. I can't guarantee this will work for your sister, I just know it has worked for me. You can email me anytime if have any questions about hbot,etc..Good luck and God bless.I will keep your sister in my prayers.