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.

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!

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

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

May God bless you MiePie.
You are so right. Without Gods love we are lost ! May you find peace from your pain and loving support and friends to lighten the way~~~ Im here if you ever need to talk

Hello Everyone,

I'm new here but not new to RSD. I took a minor fall inside my home three years ago that resulted in RSD in my left knee. Unfortunately nobody recognized it at the time and rather than treating the RSD they replaced the knee with an artificial joint. That was BRUTAL!

Have spent the last 2 1/2 years searching for and trying various treatments and went thru 6/7 doctors in that same timespan. I have a spinal cord stimulator that gives me some baseline relief but nowhere near enough to have a decent quality of life. A normal day to me is a 7-8 with pain ranging into the 9/10 levels whenever the barometric pressure drops.

Am still looking for a treatment that will get me down to a 5 - which is where I figure I'd be able to have a reasonable quality of life.

Hi,
A little about me!
I got RSD when I was 15. It started in my right foot/ankle and is now in my right wrist and hand, and I get flare ups in my left leg as well.
I really have nothing else to add to that. I don't know anyone else that has it so it is hard because no one gets it. I have two slamm children (3 and 1) So I have a verry hard time because I can't run after them and really be a great mom.

I am sorry to hear this! I too have it all over and now I too have Asthma! I have noticed my heart acting "funny" lately and do have seizures now too! I have read all of the symptoms and areas that are affecting people here and found out things I didn't even realize were RSD/CRPS were! So we all are here together to learn and support each other! I DO understand EVERYTHING you are going through!

ToGalena Faolan, I'm so sorry for all the discouragement you've had with Drs. I also had a very long time. We moved from Oregon to Ariziona. I had
Drs. in Az. not giving good treatment and diagnosis so I flew back to Oregon to good Sport Injury group in Eugene. Dr. walked in room and diagnosed me in 2 minutes. followed by tests at the hospital. I have lifetime full body now.
I'm going to post longer after this on this thread. Sincerely, Loretta

I went to those DR.S at the beginning that kept saying it's all in your head. I finally found the neurologist I have been with for 15yrs. The only way my RSD was identified was through a nerve conduction test. I have had about 5 in my 18yrs of having this disease. (by the way that test hurts like a B...H)LOL LISAR624