Reflex Sympathetic Dystrophy (RSD and CRPS) Reflex Sympathetic Dystrophy (Complex Regional Pain Syndromes Type I) and Causalgia (Complex Regional Pain Syndromes Type II)(RSD and CRPS)


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Old 01-22-2007, 10:36 PM #11
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Default My daughters...

This has been a hard story for me to write but here it goes....

My daughter, Rebecca, was 8 when she was bitten by a spider and possibly hurt her foot in the snow. She developed a mild case of RSD (at the time, I thought it was horrible) but PT and time took care of it. She didn't miss school and life was great. She was LUCKY to be diagnosed within a few weeks of it starting by a fantastic doctor. The dr only took 5 minutes to diagnose but followed up with tons of tests to confirm. We were in PT that afternoon.

The monster slept for two years. To the point, I had almost forgotten it. Then, in PE, a mile run in the gym, set off the chain of events. While at an appointment for my other daughter, Annie, to diagnose RSD in her wrist, Rebecca was on crutches and the good Dr had her in PT that day. Six weeks into this flare, with a frozen foot and no help in sight, our dr referred her to a pediatric physiatrist. She is amazing! She prescribed Neurontin and continued PT and brought in a pain specialist. He performed a series of nerve blocks and provided many alternatives to them if they didn't work, but thankfully a set of five blocks worked and with PT, we got her walking again. She missed four months of 6th grade. But took tennis lessons in her wheelchair!

Seventh grade. Someone twisted her foot again in a collision. Back to the clinic, back to PT, back for 3 nerve blocks. I think we had fewer nerve blocks because as soon as the foot froze, our dr scheduled her immediately. She missed 3 1/2 months of school but had a homebound teacher. RSD moved to right hand for a total of one week. Our dr saw us the same day as it set in and gave us options, luckily we didn't have to use them. Weird.

Eigth grade (current). A great year. Wonderful teachers, fantastic support. Becca, living in my bubble, was walking down our outside steps and twisted her OTHER ankle. 'Just a sprain Mom! ' were the worst words I had heard in a while. The sprain came and stayed. It has turned into RSD and 6 weeks later, here we are. A huge fear for us, is that our pain dr has moved. He feels the new dr will be fine for us and she will do pediatrics.

She is not in school right now, but is trying hard to get back. We had a horrible week last week--but this week is better. The rollercoaster continues.

I know this is a place for RSD patients to ask each other for help, but I really feel like families suffer from it. I hope you don't mind if I chime in. I do think at times it is harder on me than it is on her as she is so supportive and optimistic. I wonder where she gets her strength. My girls are my heroes.
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Old 01-23-2007, 12:53 AM #12
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This is going to be long so you may want to either skim or read it in bits. :-D My story starts February 5, 2003 with an injury at work. I was a cook at Denny's, so was my hubby. I worked overnight and him during the day. It worked out very well because we didn't have to have any kind of daycare or after school thing for our daughter who was in 4th grade at the time and almost 10 years old.

I'd had to stay on at work that morning because my next cook didn't show up. So, I had to wait till the day manager came in. My luck it was the one manager who couldn't cook!!! Oh boy. Well, he no sooner walked off the line for the office when I side stepped to grab toast and BAM my left knee slammed into a broken handle on a reach in refrigerator. It had been broken for year and they wouldn't fix it despite many banged knees from every cook!! I hit it so hard that my vision went black and I'm lucky I didn't fall to the floor or crack my head on the counter back there. Bill came back right then and he immediately knew what had happened. I straightened up with tears streaming down my face, standing on one leg (I fondly refer to it as “pulling a flamingo”) and went right on cooking. I knocked down the checks then dragging my leg behind me, went home. I told them all to not put in any egg orders till hubby got there. Called hubby as soon as I left and filled him in on what happened on the way home. He was outside waiting for me to help me up the stairs. When I woke up that afternoon knee was hurting me but I could limp. I wrapped the knee up and went to work that night. Big mistake!!! Within an hour I was in so much pain and could only cry, dragging my leg around. The manager that night was an idiot and wouldn't let me go home or call anyone else in either. I somehow made it through the night. Told hubby let me get 4 hours of sleep, I needed to go to the hospital. He called work and talked to the boss and told her what had happened the morning before so she'd have the paperwork ready for me. Got up, did that and went to the ER. Got x-rays, doc poked the knee (lucky I didn't kick him!) and was told it was severely bruised. Put me in a child leg immobilizer (adult size was too big for me), got crutches and went home.

I saw 2 temporary docs in 2 weeks. The 2nd week I had ditched the immobilizer and started walking again. Didn't hurt too bad and had a limp. Was cleared for full duty again and went back to work. Managed to do 5 days. February 21st dawned and I was in excruciating pain!!! Leg was so swollen and I couldn't put any pressure on the foot or leg at all without pain shooting sky high. Had to wait till Monday to see if I could go back to the doc. Got in on Tuesday morning. The regular doc was back from vacation and he was a real a**hole!! He didn't actually say it but he implied I was lying and faking it. Tried making me walk without the crutches down the hall and I didn't even make it out of the exam room. He ordered an MRI, came back negative for anything. Went back on Thursday because leg was swelling even more and turning really funky colors and was ice cold to the touch. He brushed it off and said it was nothing. Got MRI done and was sent off to an Ortho though it showed nothing. It was the start of April now and within 5 minutes at the Ortho he diagnosed me with RSD. When I asked what it was he told me to go home and look it up online. Gave me klonopin pills and something else I can't remember but no pain meds. Wrote a scrip for PT. Came back in 2 weeks and he had a really bad attitude. Treated me nasty for no reason and told me I didn't need those crutches and I better be off them when I came in again in 2 weeks.

I had to get a lawyer in that 2 weeks because work comp wasn't paying me and was denying me PT. I don't understand that one at all!! Once I got a lawyer they approved PT right away!! Got in 2 or 3 sessions but still needed crutches to walk at all though I was able to put slight pressure on foot/leg. He wasn't happy with me the next time and treated me even worse than the last time. He yelled at me and stabbed me with a pin. I told him the thigh and hip were now hurting and he got even more angry. I begged for pain pills, couldn't take it anymore. He all but called me a junkie but gave me 20 tylenol 3's. What a joke! Didn't even begin to touch the pain. He was passing me off to another Ortho for a “second opinion”.
2nd Ortho diagnosed me with RSD again and gave me scrip for lortabs. I thought great, finally some good treatment. Seems I spoke too soon. He wanted me in PT because of noticable atrophy of left thigh. I told him it hurt me a lot the first time around but he insisted. So, did round #2 and made it for 10 sessions before PT dismissed me because it wasn't helping at all and I was getting worse, pain wise. First round of PT I was only approved for 6 sessions and did them all. Did a bit of pool therapy as well which helped me get off crutches completely after almost 3 months on them. The 2nd round did reverse the atrophy in my thigh and it hasn't returned. He was nice the first couple of appointments. By the 4th he was getting a bit surly and almost refusing me pain meds and had me on 2 a day. HA! What a joke. I happened to get a peek at my file and saw what was written there. He had written that I had residual rsd. I told my hubby what it said and we both had a really hard time not laughing our butts off right then and there. I said, what is that?? Is it better than what I got cause if it is I want it. Then my left leg started doing that uncontrollable jerking thing right in front of the doc and he had the nerve to look me in the eye and tell me I was getting better!!! Yeah, I was full body already. He had ordered a bone scan in July before I saw him in Aug and it showed nothing other than a healing fracture in my knee that no one knew was there.

He decided to pass me off to someone else so ended up at a Neurologist. He ordered another bone scan which came back negative for anything. He gave me vicodin 5mg, 3 a day and then wouldn't give me enough to even get through the month so I was always running short. He put me on the Duragesic patch for about 3 months then took me off. Within a few months I settled with WC.

In between the “regular” docs I saw over that year and a half, I was also sent to a Ortho for wc's second opinion. That one looked at my legs and feet. Now they were so purple they were almost black and he told me I had RSD but I was getting better. Oh geez. It upset me a lot but what could I do. They work for the insurance company not me. Then I was sent for 2 IME's during that time as well. The first one near my home wasn't bad. He was a good doc, asked good questions and was gentle. Told me I had RSD and what treatment he would like to see me get. The 2nd IME was in Orlando, 2 hours away and he was a quack!!! He spent 5 minutes with me, turned my legs into a pretzel and said I didn't have RSD because I didn't scream when he touched me, I had no atrophy, no stiff joints. Never mind all the other symptoms, including pain and burning and sensitivity to air, changes in skin, hair growth change and change in the way my nails grow. Upset again but at least I didn't cry, I was really ticked off!!

After I settled with WC, got a new place to live after 2 more months (thanks hurricane Jeanne) I went back to the Neuro thinking he'd be better cause I'm paying now and besides he already knew all about my case and had dx'd me with rsd for the umpteenth time. I was sooooooo wrong!!! He refused to give me anything other than vicoden 5mg. He says you have a choice, vicoden or the patch. I told him I don't have a choice because I hate the patch, it made me feel sick all the time and tore my skin up and the biggest reason of all, I can't afford it!!!!! I'm paying for myself now and don't have that kind of money. Soon got sick of it all and after the third visit never went back. Went through a very rough few months until I found a new doc. He's wonderful and the whole office staff is awesome! They really care and let you know it. If I have questions about anything I can ask and the time is taken to answer me thoroughly. I decide what I take or don't and I'll decide when I need a new med or meds and then we'll discuss it, settle on the what and go from there. I hope to never leave this town so I can keep this doc for as long as possible, hopefully forever.

Karen

PS RSDMom, I can see where they get their strength from, you. I wish I had a mom like you!! *hugs* Oh I'm 37 and still mom-less. LOL I hope things improve for you all. You're 100% right, families suffer RSD not just the one with it.
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Old 02-08-2007, 04:33 PM #13
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Hi Everyone!
I was diagnosed with RSD 8 years ago, in my first week of high school. I'm one of those fun cases where there was no precipitating injury, just a sudden onset of symptoms - horrible pain, loss of circulation, etc. That first attack lasted three days - my lower leg looked like a cadaver and I couldn't walk. Luckily, my case is not one in which that is always the case, but it made diagnosis difficult. Sometimes, I would go to a doctor and they would see the decreased/nonexistent circulation, the stiffness, the cold, etc. Sometimes, I'd have pain but no other symptoms.

To make an overly long story short, in the last 8 years I've seen dozens of doctors and tried everything from PT and hydrotherapy to sympathectomy. Most were simply ineffective. The sympathectomy was a nightmare - the poor, scared resident doing the procedure had no idea what he was supposed to be doing, and then afterwards, I had post-sympathetic pain for a year. My best success has been with Neurontin for pain control - it works about 50% of the time. I use narcotics only when absolutely necessary - I don't want to become dependent on any of my medications, and all of this started when I was still a teenager. I have this terror that I'll become too accustomed to my meds and they'll no longer be effective when I get older.

I've had a consistent progression of circulatory symptoms, with accompanying muscle and bone loss, permanent damage to the veins of my leg, etc. that I'm sure you've all heard of/seen/experienced before. I've been really lucky - although my pain and other symptoms have progressed and radiated from the original site (right knee), I've only very recently begun to experience any symptoms elsewhere, which is probably partly my fault. I refuse to use crutches or a wheelchair (I'm often stubborn to the point of idiocy), which means that I limp a lot. This has meant that my left knee has had to bear a great deal more strain, and now the deterioration is progressing rapidly, with the onset of RSD-like symptoms.

Anyway, without too much whining (I hope), that's my story. I am so glad to finally be talking to people who actually know what I'm talking about!
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Old 02-11-2007, 11:44 AM #14
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Hi,

I am Mieke. I can't type much so I will keep it short.
After 20 years of struggling with doctors (one ruined my knee), I was diagnosed with RSD. My foot has been saved from amputation 5 times, but the doc could not prevent my RSD spreading through my whole body. The consequences of this all are that I am completely bedridden, I wear braces on my whole arms and my leg and have an electric wheelchair. I hardly come outside (maybe twice a week) and when I do it's usual for the hospital. I don't go on holidays either.
I live in an appartment of Assisted Living and my American husband takes care of me the rest of the time. I am on a load of medicines from Tramadol to a plaster with fentanyl, but it seems no one is reaaly able to control my pains anymore. It's also entering my organs now (liver and bladder and I got asthma).
I hope to find some friends here that understand what I'm going through.

Mieke
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Old 02-16-2007, 06:33 PM #15
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My rsd started from a blood test in my right arm 6 years ago. The nurse put the needle in too far, damaging the median nerve. I did the rounds of medications etc over the years, have had lots of highs and lows, and thankfully I had a lull long enough to be able to have another baby (my third, a son called Dayne).

I've had three ketamine infusions. (7 day awake treatments) The first giving me pain relief lasting 30 days, the second lasting 10 months. During this ten months I was able to fall pregnant and have baby #4- Hannah, now 8 months old. But while I was pregnant (about 5 months) I was bitten by a spider on my leg, and before I knew it my rsd had spread to there as well. Being pregnant, I couldn't take any meds and struggled thru the rest of the pregnancy. The first infusion also did away with 70% of my allodynia, which was fantastic. It doesn't hurt me so much now when my kids touch my arm or hand.

I had another ketamine infusion when Hannah was 12 weeks old, but unfortunately it didn't help the pain in my arm or leg, and it was stopped early due to raised LFT levels in my liver. Since then I've had to just go back on my previous medications while I'm waiting to see my pain specialist. The symptoms have spread quickly through my foot (of course breaking my toe in December 06 didn't help ) and up my leg and life is tricky right now. I can't take my breakthru meds anymore (endone) because I chuck them up everytime. Hopefully I can see my dr soon and get something working for me.

I'm now 29 and have four kids under 9 who I adore. We live just north of Sydney, Australia and my husband is carer for me and the kids, so we're all together nearly all of the time- which is one of the good things to come out of this!

x Kate
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Old 02-18-2007, 03:04 PM #16
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Hello, I know exactly what you are talking about. It is my husband that suffers from rsd but we went through approximatly 15 doctors before getting any real help. He was accused of everything from laziness to wanting drugs. Many doctors would have him in hospital give him drugs to heavily sedate and try to ask him questions when he was in a fog. We have found help and I see you are in PA. There is a Dr. Mary Torchi associated with Pain med pc and has office in Greensburg and Pittsburgh. She also sent us to a therapist who now is in Greensbug named Jerry Felton. We think very highly of both of these people. Not that it has been easy but they are compassionate and realize not everyone with this responds the same to treatment.
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Old 02-27-2007, 02:47 PM #17
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I've had RSD for 3 1/2 years. I had to have 2 nerve releases in my left arm. But after the surgery, I wasn't healing . The pain was worse. So, the surgeon thought right away that it could of been RSD. But was not sure but sent me to a pain specialist that specialized in RSD. He said that I had it. I had a nerve block that day, followed by a month and half of nerve blocks. HE told me he could keep doing this but it would be expense for me. So, my next thing was SCS. I had the trail which worked and little. So, we went ahead with the SCS. I worked for the first month a little then I fell and it didn't work so well. But, it was still in the right place by what x-rays showed. I'm on meds, too. I go in every two week too get reprogrammed because that the pain is extremely bad. But, it does not work. My left arm is contacting. So, we try phyical therapy, which cause more trouble for me. My right arm went numb and I was have the burning pain and the same problems as the left. Then I could not move my left hand, arm at all. So, we stop that. I try my on exercise with my left arm/hand but it still contracts. I am in the process on changing doctors because this one will come to my town once a week. But, even my family doctor sees that my doctor now is not doing anything. So, we are changing. I do have a wonderful husband that helps me everyday. He is so wonderful. I know it is not only me going though this but also him too.
His life changed too. But we make the most of it. Annick03
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Old 02-28-2007, 03:30 PM #18
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Wink Our Stories & Introductions

Hello everyone, this is my first time to post on this forum. I am truly sorry we all have this disorder in common. I, like most of you, have been to many Drs
and misdiagnosis, missing the 6 month window of opportunity to have any procedures to stop the circle of pain from injured site to brain. My family live is Scottsdale, Az for 8 years. About two years prior to moving I had a botched left breast surgery and lymph glands under the arm They removed the benign tumors, but the following day complications reared up its ugly head. I had fluid removed from arm two or three times. My entire arm became frozed -useless, and painful to touch. I was told I had frozen shoulder and sent to a nice Rehab Dr. who said it was the worst frozen should she had ever seen. After 100 physical treatments and 100 massage treatments(which I paid for) I felt they would help the p.t. to get my arm back. Very Very painful I had refused surgery from the orothpedic surgeon the break my arm-still woud have had to have p.t. treatments. After moving to Scottsdale, our daughter 18 attented a college to be a court reporter. This was the closest to Oregon. There are only 5 with a BA in the country.
She has been in cases regarding RSD patients sueing Drs. for failing to inform patient of risk of getting RSD from the surgery. There are sooooooo many.
Anyway, after moving here the RSD moved to the right shoulder. Then, it moved to my left hand. After more than a year in left hand and hand completly frozen, then p.t. to get the fingers moving again partially- it's like a claw. This is when I decided to fly back to Oregon to a sports injury group. The hand Dr. came in the room and said in 30 seconds- I'm afraid to tell you RSD- hope it isn't. Tests at the hospital said RSD. not arthritis the Scottsdale Dr. said I had- Sometimes I wish I hadn't let the two year of opportunity to sue. (That's two years from learning of the disorder-not two years from the injury. Law in most states. Then the RSD moved to the right hand, both feet, neck- Dr. calls it full body. Also have Trigeminal Nerve Pain on the left side of face. I would like to talk to Denise G in Palm Springs. My e-mail is patch2 @ cox.net. I'm so sorry again aand would like to share a couple of things after 10 years of experience and learning. I don't mind using the forum too, if it can help others. I've learned to much on the forum. I just joined this forum a couple days ago. It was another forum I learned a lot, plus a support group in Phoenix. We had a wonderful conference at Barrows Neurological InstituteThere was also a national conference downtown Phoenix at the Hyatt to educate Drs. and nurses nationwide to look for signs. Probably half in the country have never even heard the words RSD. Thank you for your patience in allowing me to share my sorry. It's unbelieveable the helpful education we receive here. LOL loretta
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Old 03-02-2007, 08:07 AM #19
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Default RSD dx ed in 1968 Hi

Hi I guess I havent been here for a year or 2 I think I was Comenyaro before . I had RSD dxed when I was 14 there are names like Sudecks Atrophy etc etc but later I foubd they were all RSD my Neurosurgeon (who I respect so much ) still calls my RSD "Causalgia" which it is burning (much like a Third Degree burn when the nerves come back) I havent had trouble getting my meds from Doctors since 1983 though Pharmacies have wanted to be Drug Policemen ,if you want to know what I take I would tell the amounts privately (E Me) I tke Morphine Contin sand Morphine Ir Klonopin etc etc ,I have Major Depression but I figure most with RSD do ,hurting this bad is depressing ,I have tried blocks SGB and Epidural ,Sea Snail Venom and Puffer Fish and SCS and "Morphine Pump" but gor me just taking my meds helps most ,I am dependent but not an addict ,if I can ever answer any question or be of help E me ,my RSD has been diagnosed since 1968 but I'm sure many of you have had to wait years to get the right dx like me still I had RSD since 13 so thats like 39 years dx ,I keep good thoughts for you all Gentle Hug rsdno
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Old 03-09-2007, 04:39 PM #20
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This is to Septmystic, My name is loretta, and I have had RSD 10 years-full body now. I live is in Scottsdale, AZ There is a Mayo Clinic here, close to where I live. A friend of mine worked there and with 5 Drs. studing ketamine and RSD. Dr. Swartzman was one of the Drs. I for get the other names. One went back to Germany where they allow patients to under go a 5 day coma under ketamine. FDA allows ketamine doses less than that I believe for three days. Australia has been doing this procedure for some time. Swartzman I believe came from Australia. Any Dr. Swartzman and a 2nd Dr. from the Mayo ketamine trials are now at the Hershey hospital in Penn. I called but got no return call. I've heard there is a long wait list. The results vary , but are not permanent. Hope you can find help soon. I know this pain gets real old. I use music therapy, my cat, long soft fur and she loves to snuggle with me in bed. I love reading. This forum is wonderful to not only be able to express our thoughts but listen to others share their pain and disipair and their knowledge and encouragement and just enduring. I try to exercise daily, in the summer swim every day. I belong to a health club with indoor pool, I just haven't been able to get the energy to get there. It's only 1/2 mile away. Hope you find a Dr. soon. Loretta
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