Reflex Sympathetic Dystrophy (RSD)

[livingwith]

Two years ago this November I fell in a parking lot and caught myself with my left wrist. No big deal just sprain and a scraped up knee. Two weeks after my fall I was still in pain so I went to my doctor. We did x-rays and nothing turned up so he suggested I see an Orthopaedic specialist. After two months dealing with this doctor he told me that I needed a phsychiatrist. Basically all of this was in my head. Meanwhile the pain in my arm is increasing and these red splotches are spreading and get...Read the full article

[JLOH 001]

Elizabeth, I was reading your post and feeling your torment and pain with you...it's truly exasperating to have to contend with medical professionals who "turn you down!" - when referred for pain management, my doctor actually looked at my foot and knew what this was without poking her finger in the spot on top of my foot! She was the first of 12 doctors I had already been evaluated by and sent me on my way who knew what this was...I feel you on the blocks! the blocks themselves are extremely painful when that needle is placed - it's one of those "Oh My!" moments!!! But I get about 2 - 3 1/2 weeks of reduced angony from an injection so I'll take that relief.....You are fortunate to have a physician who identified the condition you experience so talk and work with that professional and explore possibilities and options...this can truly be a monster that will suck the life out of you if you let it...I've been told after almost 4 1/2 years that I need to focus on ability and not the disability...so I'm learning to work with that...please know that you are not alone and are in the hearts and prayers of all who endure with you.

[lauren3084]

This is the first time I've ever had a chance to speak to someone who knows exactly where I'm coming from, so thank you for sharing your story. I was just diagnosed in August and since then my life has been a living nightmare. I also fell and as a result of it I fractured one of the carpal bones in my left wrist, but the fracture wasn't diagnosed until ten days after the fall when my hand and entire arm turned purple and I was in excrutiating pain. I did go to the ER the day of the fall and had some xrays done, but they told me it was just a bad contusion and put it in a cheap splint and I feel that if the ER didn't screw up then this wouldn't have happened to me. My orthopedic diagnosed me with RSD in the left hand & wrist and sent me on to a new doctor because they didn't deal with that type of diagnosis, and it turned out that neither did the doctor they sent me to. I have seen several doctors all over the place since I was diagnosed and they have all been extremely rude and arrogant and also had no idea what to do for me. One of the pain doctors I went to just last week told me that there is nothing he can do for me besides give me a script for topamax, and that a nerve block wouldn't help me at all even though I read that it could. This whole experience has just been the worst couple months of my life and I have been extremely depressed, sad, and lonely. I have tons of support yet I still feel so lonely because no one around me can understand what I'm going through. I found an expert in the disease at Mass General Hospital but of course she isn't accepting new patients so I am waiting to get in with her colleague with an appt. on January 29. I've read that treatment is crucial within the first 12mos of diagnosis so I am beginning to panic because there is no one that can help me it seems. I am only 23 years old and just started a new job after graduating from college so I should be at a great point in my life, but I'm not. I am constantly in pain and I feel hopeless that no one will ever be able to help me. For the last 5 years I have planned on applying to law school right now for next fall and I refuse to let this disease get in my way, although that has been extremely hard. Is there any kind of treatment anyone has tried that has been effective even somewhat, or does anyone know any GOOD doctors in the Boston/ New England area? It is so hard being this young and learning that I have a disease that may never go away. I am desperate to find some answers.

[JLOH 001]

Lauren
I wish I knew your area better and could direct you for relief - I'm in PA so I'm not familiar with the services in the New England area...are you locked into that area with insurance or medical payments? my pain management specialist physician is an anethestist who has a practice for interventional pain management. She is the best and has been so helpful and knowledgeable over the past (almost) three years that I've worked with her...she treated rsd patients in Philadelphia before setting up her practice for IPM.....and she knows a great deal about this condition. I was seen by 12 physicians - including my employer's occupational injury practice - before anyone would whisper the suggestion that this injury was rsd/crps. Seems no one wants the responsibility of naming the condition...These are mere mortal doctors and not magicians...most medical professionals have probably never seen an actual case of rsd/crps....so not being able to find someone to help you isn't unusual or uncommon....I've been hospitalized twice for stress related cardiac issues and no one on the hospital staff knew what they should do with this foot either...if they would just stop poking fingers in the spot on the top of my foot, I would be happy! The pain is terrible...and it doesn't go away even with the blocks and the medications for me but I do get temporary relief and a reduced pain score for a few weeks so I keep working with this solution for now....I've read about people who have found help that way so keep looking for a solution that will work for you....I know how you feel....After 35 years of working full time, this is what I do now...finally got to a point where I could look to the future and boom! here it is! I do dread the colder weather coming in now...I don't do well with cold damp weather....
There are a lot of options out there so read up and web search and google everywhere you can and get all the info that is out there now...there is more everyday...so keep up with the info...and know that you are not alone in your search!