[livingwith]

hi i,m Anita 39 yrs and i,m having a lot of pain and my doctor is doing every thing he can to help me. I have Reflex Sympathetic Dystrophy and whats weird is i had a ultra sound on my leg the doctor said they are looking for blood clots and they found nothing. Then i had a ex ray they found nothing. OMG i,m i going crazy? So the the doctor said some times it does not all ways show can any one tell me will it ever show on a test? and how do i live with this? I,m waitting on this other doctor to c...Read the full article

[TRIPLEA929]

Hi My name is Andi and I am living with RSD right now since April 11th 2009. My left foot is serve RSD I hurt it at work a 80lb pellt fell on my upper foot crush some nerves. Then they sent me to therpy and I was in a lot of pain swo they stopped. Sent me to a pain doctor and been trying to do pool thearpy. It hurts so much and the rest of my body is taking the toll. I am in a wheel chair now because I have hurt my wrist and if I keep up on the crutches I might have to have surgury on them both. So I am 33 years old living with my mom again so she is taking care of me. I guess it could be a stanger taking care of me though. Gotta go hand hurting......

[thnknfinkn]

I can't tell you how many doppler studies I had had for blood clots because my leg was warm to the touch and either red or blueish in color. It was until I had abdominal pain (not related) I went to the ER and found a doctor who knew his stuff and said you have RSD. See this doctor and he will most liekly confirm it. Now I have gone almost 9 years in pain since I had a disc removed in my back. Not just plain ole everyday aches and pains, SEVERE pain. (You can see my response to HANGING IN THERE Aug 2009 for the story) Don't live in fear, but own it is my advice. Attitude is alot in this disease. Stress can definitely make you worse, and a good attitude definitely helps. I have heard PT helps but didn't help me. I have had the spinal cord stimulator and hope maybe to get it back one day as it's advanced so much since 2001. I have had a morphone pump for over 6 years, 3 different times but since it's been out I know it had to have worked because today I am worse now than ever.
I just want to know what the government is going to do to help us get a cure or find something that works for us. This disease is horrible, and can put anyone in a bad mindset thats dangerous, believe me I know, been there, and glad I came through it with the support of my awesome husband.
Most look at us like yeah right, because there are days we are perfectly normal or act normal, God forbid, but then there are days we can't move a muscle and when we do the pain is unexplainable.
Yesterday I woke up very upbeat and took my grandson to the aquarium and 2 hours later I wanted to cry. My legs hurt so bad it felt like someone was taking blades to them and setting my legs on fire. The bottom of my feet felt like someone was putting a poker thru it. I barely made it back to the car and couldn't wait to take my meds which I hate taking because I am a zombie. I forced myself to go to sleep on the way home, but if my husband wasn't there, I would hate to think of what I could've done not being able to drive. This is a scary disease of which there is no cure and from what I have learned or read we only get worse unless detected from day one which is darn near impossible. Most doctors want to state its all in yoru heads before they say it's RSD...Why? No idea, maybe to them it's an easy diagnosis like ADHD in our kids. If you had a proper doctor diagnosing you and not diagnosis happy, stating if most kids are ADHD why not join them attitude, we would be in a better place.
Lets take this RSD seriously for those who definitely have it and find a cure. BUT don't walk around in fear as you are feeding the disease, take it one day at a time and find the RIGHT doctor to help you through it. That is a NEURO PAIN MANAGEMENT doctor for sure and ask flat out if they specialize in RSD or CRPS. I hope this helps.
Wendy