when did you get your initial rsd/crps dx
 

in light of the studies that are showing increased support for a dx i have 3 questions
1) what year was everyone given a dx (age of patient)
2) what was the original injury or instance that started the cycle
3) how long after you went to the doctor to ask about the symptoms did you actual get a dx, and by whom (pcp, pain doc, ortho, other)

i was just curious about the approx year that physicians in both the u.s. and abroad applied the dx, the median time from symptom complaint to dx, and what kinds of injury (if one occured) resulted in the symptoms most often. it might be interesting for those of us who have identified the source of the nightmare that often encompasses our existence so that we have more compiled information. i know my doc is always trying to figure out what similarities exist. i know that doctors in the civil war first began to talk about the symptoms, i am more interested in the present path.
1) 1990 (13)
2) multiple attempts by a nurse anesthetist to get an epideral for a knee surgery (6 tries before the anesthesialogist took over)
3) 3 months (anesthesialogist...he also did some accupunture on me first)
thanks in advance
lauren

lauren...
 

1) 2007

2) rotator cuff tear

3) 3 yrs. 1mos 1wk.

jenny

A doctor suggested almost exactly two years after a hand injury that it could be RSD and this was the first I'd heard of it. It was another four years before a diagnosis.

1) what year was everyone given a dx (age of patient)

2003, age 33

2) what was the original injury or instance that started the cycle

Impact injury to left knee

3) how long after you went to the doctor to ask about the symptoms did you actual get a dx, and by whom (pcp, pain doc, ortho, other)

I didn't ask about the symptoms really. I was on WC and when the first doc couldn't figure it out he packed me off to an Ortho like it was a threat. Was in the Ortho exam room for 3 minutes with him when he told me I had RSD. At that point it was just over a month since symptoms started and I didn't get any kind of "critical care" I should have due to WC not approving anything. All they did was try and deny and bully the doc into denying there was anything wrong with me and so was shipped to another doc, and another, etc.

hmm i think i need to change a question
 

could the people who were self diagnosed (you, a friend, a loved one, any one who doesnt have dr after their names please add an answer, how long you struggled without the help of a doctor (please try to come up with a "close" amount of time that passes in between the doctors dx and how long it took for you to feel like a effective person who just wants to live life and get the meds to allow that freedom easily.) And put the day the doctor actually said i know what it is conclusively.


non doctor dx
number of years it took tou to find a doctor that you are comfortable with
md dx

does that make sense.
i guess because pain management specifics is basically assessed on patients who are either already seeing a doc they are comortable with or they have an appt within a few days or a week at most

there are alot of surveys that talk about the injury (if one did occur)the early diagnosis, and what the patient done to help their doctors in their quest find the answer in the form of a dx

Good Questions
 

1) what year was everyone given a dx (age of patient)? 2003, age 44

2) what was the original injury or instance that started the cycle? It all started with a botched angiogram that blocked the femoral artery for 7 days, and a surgery to remove the blockage, which also got botched.

3) how long after you went to the doctor to ask about the symptoms did you actual get a dx, and by whom (pcp, pain doc, ortho, other)? It was about 3 years. At first they told me it was all in my head, but I wouldnt go away lol. Then they sent me to a neuro doc that told me it was a bad back, and sent me for back surgery. The back surgeon said it could be RSD, and sent me to a vascular surgeon, that told me it was RSD, and also gave the complete history of RSD with the bad news.

1/ 1997
2/ Multiple fractures following car accident
3/ Orthopaedic surgeon asked for second opinion from another orthopod who referred me to anaesthetist. 18 months after accident I was diagnosed.

Tayla:hug:

1) what year was everyone given a dx (age of patient)

2007, age 21

2) what was the original injury or instance that started the cycle

TOS injury from volleyball 7 years ago, tos is another never condition... I have contraption of the nerves and blood vessel bettween the first rib and the colar bone.. Another very painful condtion

3) how long after you went to the doctor to ask about the symptoms did you actual get a dx, and by whom (pcp, pain doc, ortho, other)

Started asking 1 year ago and last week was giving the dx by my pm... Stella Gangllion Block was succesful which indicates i have RSD...

There's no such thing as self diagnosis unless you're a doctor.

I knew within a couple hours of the doctor suggesting it might be RSD that it was, indeed, RSD. I checked it out online and found the "alcohol on the affected area" test which was highly positive.

I believe docs don't like this diagnosis, they don't like the disease, and they don't like treating it. Not only are they able to provide relatively little help usually but it represents more than most conditions one of the things they don't like about their job; the loss of control of options in diagnosing and treating patients. Like all workers, doctors like to look back on their day and see the good they've done. This can be difficult with RSD patients and even the specialists can become jaded.

We end up going from doctor to doctor looking for relief and a little compassion (in the form of treatment).

If the procedures don't work then the best chance is to find the right combination of drugs that help. You will end up with a new life than what you had before.

got rsd july 5, 1996 from hip replacement surgery
i was 44 years old
DX by a rehab specialist April 1997, so 9 month later.
had been to ortho and neuro specialist before that and they did not DX it.

good thread, thanks, joan

Injured right wrist in a fall Jan 2002
Diagnosed Jan 2002 a week later by PCP (when I was 16)
Originally ER thought i'd broken my wrist. Went to see PCP a week later because of the pain and swelling and blackness and she already had a patient with RSD so recognised it straight away. Diagnosis confirmed by orthopaedics, rheumatologists, neurologists and the pain team.
Still not comfortable with my medical team as they are bloody useless.

Good idea for a thread

Frogga

1) 1996, age 35

2) Crush injury/brachial plexus stretch/tear

3) Discussed w/in 6 months

GOT A GOOD LAUGH ABOUT THE TEAM BEING BLOODY USELESS!!!! HA! THANKS ... JOAN

Had to have carpal tunnal surgery in Jan. (the 9th. of this year;2007)
Dx April 07- Ortho caught it.(Surgeon who did the carpal tunnal surgery)- went to 5 differnt dr.'s 2 specialists.. all confirmed it being RSD Blahhhhhhhhh..

???
 

What is the alcohol on the affected area test?? I have not heard of this.

thnx,
Cala

11/2 to be diagnosised
 

DX given 2004 I was 51
Accident occured 2003
DX'd by orthopedic after seeing 6-8 other varying types of Doctors.
physical therapist sent me to the doctor who diagnosised me as she felt i should not be in pt. the physical therapist had experience with RSD. I had never heard of it.

You can't really diagnose anything yourself but I found an old test that was sometimes used to check for RSD online. Obviously I don't know if this would be positive for other conditions and doubt it always works for RSD.

You just put a little isopropyl alcohol on the hand or whatever and see what happens. When I do it I get a rapid increase in pain. Even water evaporating from my hand will cause pain so I have to dry it immediately. I get a little pain just thinking of putting alcohol on it.

1. Diagnosed in 2004 at age 34
2. 1998 - Car accident head on (lady talking on cell phone driving on wrong side of highway??? go figure), hit left wrist on dash and smashed side of head into side of window, 2nd accident 8 months later - hit from behind - 4 herniated discs lumbar spine and 2 herniated cervical spine. Made condition worse, starting in left hand, arm and left side of face.
3. Suggested RSD by 6th doctor in 2001 by neurologist, final diagnosis 3 years later by 2 doctors at rehabilitation\pain management doctors, many doctors and many tests. Now condition is both arms, hands and starting left foot. Face condition has disappeared.

Like most people, unhappy with my doctors but have been to all in 60 mile radius and a couple in another state.

Good questions.

1. Diagnosed in August 1999 age 52.


2. Injury occured April 1999. Fx 2 bones in right foot while making a visit to a hospice patient.


3. Dianosed by Orthopedic surgeon.


Great thread,

Barb2406

When & why I developed CRPS/RSD.
 

I sustained a colles compound wrist fracture in 1998. Up to 37% of wrist fracture patients develop CRPS. In 200 Dr P Zollinger discovered that taking vitamin C immediately following trauma nad for 50 days or till pain ceases can prevent development of CRPS. I wish I had known. Now Professor Scott Reuben in the USA has developed protocols to help prevent CRPS post surgery. They also have protocols for dental work. These protocols also prevent further complication for CRPS sufferers who undergo surgery.

jeisea
http://www.crps-rsd-a-better-life.blogspot.com

1) what year was everyone given a dx (age of patient): November 2006, age 16

2) what was the original injury or instance that started the cycle: original injury in October 2005, slamming my thumb in van door

3) how long after you went to the doctor to ask about the symptoms did you actual get a dx, and by whom (pcp, pain doc, ortho, other): two months, dx by an orthopedic surgeon

My story is strange as in I didn't go see someone sooner... it was really really mild at first, then I got a chiropractic adjustment and it sent the pain through the roof, and I have had it really really bad since!

HTH! Welcome, btw, Lauren! :hug: :hug:

1) what year was everyone given a dx (age of patient): Winter, 1996, 13 years old.

2) what was the original injury or instance that started the cycle: Mild ankle injury (sprain or strain) in October, 1994 (12 years old)

3) how long after you went to the doctor to ask about the symptoms did you actual get a dx, and by whom (pcp, pain doc, ortho, other): Over a year, no treatment given for several more years...it was a nice big disaster.

1. July 2007 and September 2007

2. First injury Sprained Ankle. Second injury Fall and Knock getting out of bath

3. 4 months after injury for the first injury, and about 3 weeks after second injury.

4. Diagnosed both times by Pain Consultant / Specialist

1. 2002,33 yrs. old

2.severe twist to the hand

3.It took 3 yrs.for the doctors to diagnose it

1) what year was everyone given a dx (age of patient)... Hurt in 2000 at age 13.... Official DX in 2002 at age 15
2) what was the original injury or instance that started the cycle--- medial synovial plica in my knee that became swollen due to an injury running track then surgery caused the symptoms to worsen...

3) how long after you went to the doctor to ask about the symptoms did you actual get a dx, and by whom (pcp, pain doc, ortho, other)--- approx 2 years... DXed by a physiatrist (doctor of osteopathic medicine)

I had a hip replacement done on feb.15, 1999. Woke up with right foot drop I was told my siatic nerve had been damaged during the operation due to so much bone being eaten away by arthritis. I kept seeing the Dr. and nothing was helping the pain. After 3 mo. he sent me to the pain clinic and 2 weeks later I was told that I have RSD Type 2.

Sue K.

Our Story by Upsidedown Patty
 

My husband had ingrown toe nails removed in 2002. He knew right away something was very wrong. He has not had a pain free day since. It has traveled up both legs to right above his knees and last year showed up in his hands and is trying to continue into his arms. He was 47 years old. The doctor that did the toe nail removal did not recognize the symptoms at the follow up appointment one week after surgery. Nor did he suspect anything after 2 phone calls over the next 2 weeks complaining of the classic systoms of RSD. I diagnosed it myself from researching on line before going to a neurologist. He asked whom had diagnosed RSD and we said i did and he said "it isn't RSD it is PN". His ego wouldn't allow me to be correct. We did go to another neurologist at an University Hospital who concerred with my diagnosis. However no treatment received for 16 months after initial toe nail removal. This has been a very long nasty nightmare ever since.

hi..
 

1) when/ 2005 (42)

2) how/ a car tire actualy ran across the outside of my upper foot and over my ankle bone and stopped on the very back part of my heel, this was as I attempted to exit the low back seat of a car, the driver noticed and fumbled around (for like ever!) before she finaly found reverse then drove back over it again. :eek:

3)
* I started complaining to docs about odd sensations and pain pretty early after injury but my rt foot was black for along time, very agressive physio 2-3 months later on my calf edema made it escalate and spread.

* I suspected RSD after a WCB case worker read off symptoms etc over the phone to me @ 3 months after injury, an Orthotic surgeon had written "suspect RSD" on my WCB report.

* Diagnosis at 5 months post injury by a WCB doctor, they put me back physio insted of the blocks that were requested by myself and 2 doctors.

* WCB finaly sends me for blocks @ 9 months post accident, by then I had body wide (ignored by docs) symptoms, bilateral lumbar blocks for 3 month pain clinic stay.

* WCB sends me home @ 1 year when rt foot stops getting benifit they cared about no other area pain, or even that the left leg was still benifiting from the blocks, only the right compensable foot. :( matters to them. rt foots only worth 6.25% of my income and I cannot work.
System sucks.

:hug:

answer
 

1. 2001; 42
2. Breastcancer-surgery
3. DX after 1 year, Neuro

On April 1 2000 went to have an angiogram done because of family history of heart disease. April 8 2000 had surgery to remove clot in femoral artery at the angiogram entry site. Continued to complain about pain every month to doctors.

Sept 2003 was sent for back surgery because doctors refused the notion my pain was caused by the botched angiogram, and that is when the surgeon told me it was probably RSD. She said the pain was not caused by my back, but would not say it was from the botched angio. One month later was sent to a vascular surgeon that looked me over for about 15 minutes, and then told me that it is RSD, and caused by the lack of bloodflow from botched angio. Said the doctors that did this to me knew full well there would be nerve damage, and should have started treatment for it, but were probably hoping that nothing would happen and I would just go away.

I was 41 in 2000 when the angiogram was done, and 44 when finally told about RSD. Even to this day doctors still want to poopoo the botched angio theory, even with all the medical evidence.

Great thread
 

here goes
Fell in open well sprinkler covered with grass- top left off on:
July 06, 2003 at 9 pm

went to emergency room
Open wound not cleaned out - sent home with instructions to contact plastic surgeon if hole did not close??!!!
Fire in leg started with in two to three days.. started calling doctors- and plastic surgeons-- the PS thought I was nuts- could not imagine why they said to call them!
Went to primary he looked at it and said to put antibootic creme on it.
Pain keeps increaseing swelling red hot. I keep calling primary he keeps putting me in different casts- which I cant tolerate.
Finally I go to ortho pedic- he looks in open hole this is 4 weeks later and finds dirt and grass. Now soft tissue infection and also finds stress fracture. More casts. I see him for 6 weeks he puts me in pt I cant stand the pain keep going to more doctors every one of them says im a baby its in my head- yet at this time you can see the huge red hot leg.
Finally in my third round of painful pt a year and a half later a physical therapist tells me I dont think you have ankle and knkee problems, I think you should get another opinion but doesnt say what she thinks it is. I go to the doctor she says and he after, xray, triple bone scan, thermographs and Sympathetic lumbar block diagnosis me with RSD. it is now April 04. Too late and it is already in the other leg. Sorry I wrote so much I just get all worked up thinking about it. short answer below
Injured July 6 2003
DX April 04- after sophisticated testing, bone scan, thermograph, Sympathetic Lumbar block, Xrays
Between July 6, 2003 and April 2004 I saw 5-10 doctors, I thought I must have bone cancer the pain was so severe. No one would llisten. it still up sets me almost 5 years later. CZ