Sorry for the really late reply, but yes, some of us experience all of those symptoms.

To every one
 

Hello my name is flippnout. I have been on these boards for several years I think.....well we know how that goes right.

I have RSD and TOS, man I feel like this is AA nope never had a drinking problem had a friend who did, so I went with him well drove him there. So I have these conditions and I refuse to get down I have been there and feel the negative thoughts and lost feelings make it worse sure I have the pain yet I just want half the pain thank you LOL. I do have my time but I have got to learne to beat it down, we being A types should know how to control this thing, that is why we are A types right.

So I have this WC thing going and SSDI going wich I'm sure others do to, my doc is on my side so thank you docs! I have got to come to terms of finding a new life what to do now! with my life I can no longer work but I can do something like to volunteer so I have to think, I anc start doing ART again paintings wich would be good therapy and I must start to walk more, darn lyrica is making me gain wieght...

I live in the center of the USA and I like it here I wish I knew others here with this,but not many I guess I am treated at a teaching hospital I'm sure one day I will meet some one for talking. Till then I will be here if you dont mind...

11 years and counting
 

I was in a serious car crash in Jan. 1996 with significant damage to my left arm +++.

I haven't had any implants, but everything else that has been tried hasn't worked.

It is hard to describe to others the stunning nature of this pain.

got rsd july 5, 1996 from my third hip replacement surgery.
i was 44 years old.
DX by a rehab specialist April 1997, 9 month later.
joan

when did you get your initial rsd/crps dx
 

This link goes to the thread -

"when did you get your initial rsd/crps dx" http://neurotalk.psychcentral.com/sh...ad.php?t=26282

It ties in with the introductions thread and will make it easy to find.

Brief History for my wife: She was involved in a farm accident in December of 1995. As a result of this accident, she shattered her entire left elbow joint. From this original injury, came the on slaught of viscious neuropathic and orthopedic pain. Marilyn's left upper quadrant was the primary RSD focus. Over the years, the RSD pain has migrated--the migration was not rapid, but after more injuries, a couple of back surgeries, and most recently a tendon repair operation, she is a mess.

So, it's 12 years down the road and her pain is getting worse and more intense as the months pass. She is wearing down like an old alarm clock spring. I can see the fight in her spirit is diminishing. Marilyn takes an anti-epileptic for pain control. That's it. She has tried various other approaches, non which provided satisfactory.

A surgical sympathectomy, directly recommended by Dr. Schwartzman at the time, was done with moderate success. She was relieved of much pain for about 18-24 months. The pain came back as we knew it would. Marilyn said the relief for that time frame was worth it. Yes, the nerves that were severed did grow back, but the pain didn't appear to be any worse than prior to the sympathectomy. BTW--we researched the heck out of the procedure before deciding it was viable for Marilyn.

Marilyn also gets a Bier Block about every 8 or 9 months. Sometimes she can last a year after having the Bier Block. But Marilyn always knew that somewhere down the line, unless a cure was found, and that isn't in the cards yet, she would have to strongly considered an scs or pump situation for herself.

She is not a candidate for any ketamine infusion therapies. None, not outpatient, not inpatient, not Schwartzman's Germany bound procedure, not Harbut's protocol. Her heart reacts very badly top ketamine in any form. So that avenue of hope for Marilyn is shut out--much to my chagrin and hers as well.

I don't want to go on and on. As part of our research we would very much appreciate input for all those who have experience with any type of scs unit. We would also ask those who respond to let us know which manufacturer's unit was installed.

Thank you all for your kind responses so far.

johnthepainter (I am a house painter by trade)

All the way from Brazil, seeking advice
 

Hi everyone,

My wife had a car crash and had to undergo minor surgery on her left hand, due to a broken bone.

That was 22 days ago.

After having heard from 4 different doctors that the swelling and the pain would go away, a fifth doctor diagnosed her with CRPS.

Being diagnosed is both scary and relieving. Relieving because we read a lot about it in the last 2 days and know what are the next steps. Scary because the outcome is unknown.

One first question would be: what is an early or late diagnosis? She will start OT 23 days after the accident.

What we are most afraid of are the crippling effects of CRPS. Her fingers are already stiff.

Please, if you have been through that, give us a light. Thank you.

By the way, what an year... last june we both were diagnosed with HADD... but we are even proud of being so hyperactive...

Life with rsd/cprs
 

Hi. My name is Julie and I am emailing from upstate NY. Having been dealing with a workman's comp inj to elbow & shoulder that never healed and I have recently been diagonsed with rsd. Looking forward to talking to people who understand what I am going thru.

Take care

Julie

My story.. Helpppp
 

Well im a high school student and i developed RSD last year. I had a a ski accident and i had gotten a fracture . I have went through numerous doctors and have gotten no results . About a month later i was diagnosed with RSD. Nothing helps it at all even vicodin etc . I honestly feel as if no one but myself has any clue how painful and hard this is to deal with. People in school always talk about it but they have no idea what they are talking about. This has effected my life in a major way i cant play the sports that i love anymore and its tough. Just as i feel like it might get better it dosent and i think im starting to have a problem with my knee HELP ME Any advice?

To Accidentwalking here-high school student.
My name is loretta,and I'm so sorry you have RSD. It's important that you understand the many symptons of RSD. The more you know and understand what is happening to you will lessen your fear and get control of your health.
Many Drs. really don't have a lot of knowledge about RSD and how to treat it.
People are different in their reaction to medications and treatment. You are in the best place to get procedures that can put you in remission. If you get treatment in the first 6 months you have a good change to get blocks that stop the cycle of pain signals going to your brain. I did not get an accurate diagnosis for maybe 3 years......then the pain signals become independent pain signals. Do a lot of research before accepting a form of treatment.
Ask you Dr. how many rsd patients he has treated. If you decide to get a block, it's done by an anethesiologist. Ask how many blocks he/she has done...I'm so sorry you have this monster of a disorder. Your right, it's difficult for anyone to really understand, even family. That's why this forum'is so wonderful. There are so many wonderful people, young ones in school and college. The people here have a tremendous amount of collective knowledge..Depression goes along with rsd, because the disorder affects the limbic part of your brain that controls emotions. It affects your blood pressure both high and low, your circulation, anti-depressant meds are effective for nerve pain. I am on two different ones. Also anti-seizure meds are effect on nerve pain. Neurotin has been used for years. I was on it for a long time, but I've switched to Lyrica and it is more effective. Besides Vicodin, I also take an anti-anxiety med. Also a sleeping pill occassionally. Two different blood pressure meds. I didn't have blood pressure issues before rsd. My daughter and I snow skied, water skied, played tennis (really we were fanatics) worked out together at a club. It is such a loss to loose being able to do all that. It is life changing. I went thru a serious grieving process. I have full body rsd now for 12 years. Mine started the day after surgery-I had frozen shoulder. I went thru about 100 physical treatments to get the range of motion back. A few months later it moved to the other shoulder- more therapy. Then my left hand was injured-a nerve pull while water skiing. more therapy so painful. use of my fingers is limited. it's like a frozen claw. then moved to other hand then moved down to both feel and lets. About 6% get full body. Where do you have rsd. what treatment plan do you have? Another site that answers many questions is rsdrx.com The puzzle part is very good. Having the right Dr. is so very important. Mine is just wonderful.He is a neurologist, phmacologist, and a phyciatrist. Please let
us know how you are doing. You can share your true feelings, it is such an adjustment in life and we can't do it by ourselves.Everyone here really cares.
Sincerely, loretta jewell from arizone.