Hi Jane-

You are in a good place here where care abounds and folks will openly share their thoughts and concerns from the perspective of lived experience. Lisa offers wisdom in regard to the matter of taking all of this carefully in front of your doctors for their recommendations. If there are questions I can refer on to my Sis, I will be happy to do so.

I imagine your husband is just happy to be back in the states with you, and I hope and pray he is alongside you with love, concern, and help to deal with your health needs. Thank you to both of you for the service your family has given through the Army. Our son is mid-East Army deployed right now, and we have a bit of an understanding about the family cost associated with long distance connectedness.

All the best to you!
Mark56

Hi. Just joined here...

Been seeing a number of consultants. Rheumatologist suggested, and the Neurologist agrees that I have RSD/CRPS.

I'm not completely convinced. The diagnostic criteria seem a bit too vague. Seems you could squeeze quite a lot in there. For example, I don't have any oedema, and the pain I have is not burning.

...can't we edit posts?

Anyway, whatever is wrong with me, it bloody hurts.

Anyone else think the diagnostic criteria are a bit too inclusive?

just a note:

you can edit posts, but there is a 24 hr window allowed. Past 24 hrs, the option closes.

Good morning to all. I'm a newbie. Been lurking for a time, but figured I might as well jump in.

I was in a serious car accident on 1/13/10. Only injury was to my left leg which took the brunt of the impact. ER Dr said go home put it up, go back to work on Monday, it is just a bad bruise. I've had bruises before, never anything like this pain.
Because I was (1) driving, there is car insurance, (2) working, worker's comp, (3) gov't worker, so I get to deal with the US Dept of Labor. And right up front, none of them give one whit about me. But my paperwork is out of control. Because worker's comp trumps car insurance, WC is in control and eventually will be reimbursed for all expense, which won't be much because they won't approve anything.
I knew from the beginning something was wrong because of the level of pain I was having. I went to the Dr every week. Always another solution. Wear the white support hose, I don't care if the pain of having them on is excrusiating, wear them anyway. You should be wrapping it. An ultrasound two weeks later showed my leg was full of blood. It will just absorb back in, no treatment necessary. You shouldn't be wrapping it, that will increase your pain. If you were hungry enough you could go back to work.(The fact that my leg was twice as big as the other was lost on them somehow.) The finally said 'let's try PT' and to my amazement, I think I got the world's most wonderful therapist. He actually said "wow, you have some issues here!" That in itself was therapeutic. After a month of deep massage, I was amazed at the remarkable advancement I had made. One day back to work and I couldn't even tell I had a knee.
Take ibuprofen and use heat pad. Don't take ibuprofen and use ice pack. Don't wear jeans(ha, I didn't want to wear clothes or shoes). Keep it elevated, which I'm pretty sure is impossible when you are working. I've never been on extended worker's comp, and the supers at work didn't know anything either, so I used all my sick leave, most of my annual, many unpaid days.
I asked for a referral to an ortho dr. Took 3 weeks for approval and finding one who would take US Dept of Labor patients. MRI 9 weeks after the accident shows no ligament or tendon damage, but he said if you've been off of it for 8 weeks it would have healed by now. Go to PT, strengthen that leg up. HA ha ha. One month of torture, but my therapist was very good at avoiding anything that was too painful.
Back to the doc, now 5 mos since accident. I'm sending you to a neurologist. I think you have CRPS. No one knows the procedure because I'm new at this and so are they so we call to get approval. The person(that's as kind as I can be) right up front said, "You ain't goin' to see no one, until I say you can." It was 8 weeks before I saw a neurologist and 4 bureaucrats before the last one said "You don't need anyone's approval for that."
Ok, fast fwd. It took 4 weeks to get the testing approved, amost an act of congress to get a nerve block, and now it has been 14 weeks and the Dr has received NO payments. Despite continuous calls on procedures, corrections, hoop jumping and our following instructions to the T, no money yet.
I've gone from one flare a week, to continuously swollen BOTH feet up my leg about 5 inches, lobster red/and or black, a flare a day, my bp is far from acceptable(yesterday, I was having to swallow to equalize the pressure). I had a cat scan on Mon, I have a nerve block scheduled on Thurs. The doctor said we are not fighting WC anymore. Just charging my insurance. But I really don't care, I've asked my husband twice this week to go downtown to the corner and see if he can find anyone who's selling morphine, if not just buy a chainsaw and get these things off of me.
I did appreciate the tips thread I followed yesterday. I'm pretty much no shoes, and one pair of hospital socks of my hubbies. I'm going out to church, but that is it. Well, I am going to Bible study, but no walking, but with my BP so high, I'm confined.
You all know all of the symptoms. I feel the impulses in my leg pretty much all the time, but now both feet, and oh, yeah, my thinking is going to pot, but I can't get any witnesses to the fact that it wasn't before this. My son, and Iraq war vet got married in July. His mother(me) didn't understand that stress was a big trigger and spent a large part of the day in a bathroom crying out to the Lord asking why was I feeling like I was panicking(I'm not a panicker). Now I know better and am avoiding most stress. I'm not working, I'm the bread winner. I'm hoping they get it figured out before I run out of resources. I'm beginning my 7th decade and I had a couple more years before I retire, but that was going to be when i found another job. I'm gettin a lawyer this week, and hopefully soon getting out of the WC, US Dept of Labor fiasco.
But God is good. I have a husband who smiles when I ask for the chain saw or the morphine from the corner. I have 10 grandchildren who create so many endorphins they drip out of my eyes many times. I'm happy to be breathing. OK, breathing and not walking. I've memorized every sudoku puzzle ever printed I think, I have my own DSI(makes me a cool gramE), I have lots of time to read and study, and I love 1000 pc puzzles.
Thanks for offering me a place to go where I don't have to try, over and over, to explain why or what I'm feeling. They say - Just put your shoes on, Just do this, Just do that. I smile and Just let it go over my head.

Hi. I'm a new member and about to tell my life story. Hang on for the ride.
In Spring 2000 I fell at work knocked unconscious and when I awoke both shoes were off my feet due to the impact. I was rushed to the hospital and thankfully nothing was broken. Only a HUGE bruise on my entire thigh. Off work for a week. Within 2 weeks I felt electric like shocks in my ankle/thigh areas. Assumed it was just a result of the fall so I ignored it. 6 weeks later went to an ortho who promptly casted the leg due to soft tissue damage that was left undetected at the hospital.
6 weeks later cast was removed, still complaints of electric shock feeling and the leg was reddish. The doc then mumbled something about hoping I didn't have RSD. Returned to work.
4 months later still having the electric shocks, swelling etc so WC authorized an MRI showing the peroneal nerve by the knee was crushed. Off to a nerve guy in the city who recommended nerve surgery on the peroneal nerve and the femoral cutaneous nerve (which was also crushed). At this point the pain was almost unbearable. WC refused to authorize the surgery until a year had passed from the onset of the injury. The surgeon told my husband he did not feel the surgery was going to work after he got in there and saw the damage. He also said because the insurance company procrastinated the chances of nerve regrowth diminishes greatly after 1 yr from the injury.

FF to 27 doctors and IMEs. It's been a freaking nightmare. The RSD/CRPS has spread to include my back and the right side of my body. The redness has not gotten worse but I tore the meniscus in my knee requiring surgery in March 2010 and that has now worsened. I need a total knee replacment but they won't do it because of the CRPS. I'm left with drop foot and the sciatica is now damaged due to the crushed/severed peroneal nerve.
Sent to ankle specialist who couldn't believe I was still standing because as he put it, "there's nothing left in the ankle to perform surgery less much else".

They tried lumbar injections however I was the 1% that was left with temporary paralysis in my right leg so they put a halt to those. SCS is out of the question. I am anaphylatic to narcotic pain meds so that leaves me with Toradol (glorifed Excedrin as I call it).
I long for my old life and I'm now in pain counseling trying to deal with this mess. Add in Worker's Compensation and their games and it only makes it worse. I am thankful to have a drop foot brace and a back brace on the days I can stand them. I have a cane and a wheelchair but at this point I fight them every step of the way.
The pain can be unbearable but I'm working on it. Sometimes when it's so bad and someone touches me it feels as if they're bruising me and most days the right side feels like it's on fire. Does anyone else have that kind of pain with RSD?