Hi everyone,
i"ve been gone for a long time, sorry. I was having alot of issues with depression. Complete loss of intrest in anything, and pain typing and sitting at the computer. I wish i could afford a laptop, that would solve the sitting problem. Yesterday i was watching the news and i thought they said rsd. I couldn't belive it. I yelled so loud, my husband came running. He thought i fell or got hurt somehow. It was a story about a woman with rsd and some meds she was taking that worked for her. It wasn't a long story, and not enough information about rsd, but it was something. I don't know if anyone else saw it, it was on nbc. Once again hi to everyone and its nice to be back.

Sue k

I'm sorry you have been down and also limited. I understand and I hope things look up soon. Are you in treatment with pain doc and a psych? You know for me obviously it did not take away my physical pain but going back to the psych for my depression and anxiety has helped though today is a royal crapper. Not every day can be good though just a suggestion. If I can help I am a PM away too. I did not see this NBC. The only rsd thing I saw was on Discovery with the doc I saw but it was not a huge wow factor in what we go through. Many thoughts

so i guess through the oprah letters somebody on a group i'm in on facebook got contacted by somebody that works for the show, and has been told to gather stories, and pitch an idea for a show!!!! the dead line is the end of the month.

I heard about that too, Andrea.

Gosh, that would be something, wouldn't it? RSD on Oprah!

I actually might be tempted to send in my story with pictures of my limbs and video material of my tremors... I'll have to think about that.

That would be something to have this on Oprah so that people are aware of it and its effects. I hope that you keep us posted on when; if it really happens.

Hi, That would be so great if Oprah did a show on RSD. What scares me most is when I go to a Dr. and the look like I am making up some kind of illness. They have no idea what RSD is and seem like they don't even care to find out. Daniella, I have been to see a therapist and it didn't really help. once again trying to find someone who knows about this monster. They really don't understand the major losses in our lives. Its the little things that bother me most. LiKe not being able to wear sandles, or go barefoot without tripping over myself. Sounds crazy to these people unlike us but to me its a huge loss in my life. I do go to a good pain management center. For 10 yrs now, its like my second home. I wish I had a printer to print out information for the hospitals around here. Mabey they would take the time to learn about it.

Sue K

Hi Sue,
Welcome back. We all get down like you talked about. I would not be able to have the encouragement and change of conversation with others, if I did not have a laptop.
Thank goodness the price has gone down. I just got a laptop for less than $400 It is wireless. Sitting at a desk doesn't always feel good. My husbands office is upstairs. My office is downstairs. It has my desk and a daybed, tv, music.
Have you heard of places on the internet that you can buy used 'anything' It might be a little iffy trying to buy a laptop, It's called craig's list.
The annual RSDSA meeting was held just about 5 miles from where I live. I35 attended Friday and the Drs. attended Saturday. I really enjoyed it. They said 50,000 people are being diagnosed every year. They are going to make available the video tape of the meeting.
It really takes going thru a few Drs. to find a good one, compassionate one. After having this 8 years, I found one in the yellow pages. He is a neurologist, psychiatrist, and pharmacologist. I have been going once a month for 5 years. He doesn't take insurance, so it's a cash thing. I had a good therapist in Oregon for 2 years, helping me with the death of my parents. Your right, there are so many losses, one could never imagine until they have this, or another life altering illness.
If you get on the net-RSDSA and put in your zip code, they can give you the closest support group, give you a name and phone number. Sometimes that's a good way to find a good RSD doctor. counselor Sometimes the meds we are on, affect us emotionally. Just the disorder affects our emotions, depression. It affects the Limbic part of your brain that controls, emotions, decision making process. That's why sometimes when we are talking, we loose a thought, can't find a work, a little slow in our speech.
Something that helps me emotionally is journaling. Writing our feeling out on paper, helps us process our emotions, cry, express our pain about our losses. We don't have to show it to anyone. but it does help us. Meditation, Prayer, Bio-Feedback, visualization, music, dvd's scented candles, essential oils, massaage, swimming, water needs to be 86 degrees. Keeping in touch with friends, family, stretching, exercises to keep us mobile. Physical Therapy saved me from being crippled and in a wheelchair. I do have one hand that is crippled. I was 4 years delayed in getting diagnosed.
The site rsdrx.com is wonderful. Dr. Hooshmand is retired, but his site is still up. He was in Florida and very knowledgable. The part called 'puzzles' is excellend. It is about 140 questions from his patients and his answers.
I think a lot of us can relate to you and feeling very depressed, realizing how our live will never be what it was. But thru therapy, and other means, we can come to grasp with our life and start being grateful for what we can do. That took me a long while and seeing this Dr. to come to that point. There is a book out by Michael J Fox called Always looking Up that discusses his coming to term with his disease of Parkinson's.
Do you live in a town where you have support groups. If they don't have RSD, they might have a Chronic Pain Support Group. I'm glad you found our site again. It's so encouraging. We all are in the same boat, maybe just different circumstances, but we all know what each other are dealing with. Please stay with us. Take care, loretta