Originally Posted by Denise G

I've commented some before. I'll fill in some details. First though, I want to say I'm so glad to find this site. I've had "the beast" for over 5 yrs but have never met anyone else with it. I'm hoping to get a chance to ask some of you more questions.

I was just leaving work on a Fri evening when a large room divider fell on me, trapping me under it. I'd seen it coming & "blocked it" from hitting my face with my right hand. Thought I'd broken several bones at 1st. Finally someone heard me yelling & pulled it off. My hand/wrist felt sprained, & my neck felt a little sprained. But within a couple of weeks (I kept working) I felt like monsters were attacking my right arm, hand, shoulder & neck.

I was sent to an Orthopedic Hand Specialist, who just shrugged when I showed him my swollen, deep blue hand & asked what it was. Even though my employer was furious that I never go a diagnosis, I kept going to this doctor (maybe I got hit in the head, too! ).

I had a torn ulnar nerve he said, & he put me in a splint & sent me for PT, too. The physical therapist kept saying something was "really wrong" with my shoulder, but the "hand specialist doc" just put off the MRI.

Two yrs later I got an MRI on my own & they found multiple torn ligaments, etc, etc. Fortunately I'd been seeing a Chiro who was GREAT with elbows & shoulders who kept it loose.

After the MRI diagnoses WC switched me to an Orhtopedic who was a "Shoulder Surgery" specialist. I told him I wanted to try injections before surgery & he went along with me (thank God!), because after 2 injections I could barely function due to the pain. I cried at work in the bathroom. That's when they told me I had RSD. Thankfully we didn't go straight for the surgery!

It took about another 8 months before WC would approve me for SGB's. But they worked fantastically when I finally did get them (total of 6).

My injury was in Aug 2001, and in 2002 I started having burning on the bottom of my feet. It slowly moved up my legs. They both now burn to just above my knees. I don't know if this is RSD or not. And, since WC only authorizes my doctors to look at my arms/hands (they've acknowledged it's moved into my left arm too, but not nearly as severe as right), the doctos just sort of change the subject when I ask what the pain is in my feet and legs.

Maybe someone has had a similar experience.

After I went to an Agreed Med Exam last Feb, not knowing 18 months of my medical records were not sent to him, he P&S'd me, so I have had to live on $720 a month "advances" from any settlement. I'm in dire financial straights! I've had to "live" on my credit card, now I can't afford the minimum & was on the phone arranging stuff with them today. But something always works out! I just thought my settlement would come through at least 6 months ago!

I live in a guest house that's just perfect, even though my family are all far, far, away. My landlords are my friends, & let me go without rent a month or two, even though they've had problems. But they just got a notice that their house is in foreclosure!! I feel so bad for them. So I'm trying to arrange to move....somewhere. I have about $75 to pay toward rent these days. So, I shouldn't have any problem, right?

If I didn't hurt so much & feel so tired, I'd dress up & go see if I could find a "Knight in Shining Armor"!!

I love to laugh, that's why I love reading some of the stuff on this site. You funny guys, KEEP IT UP PLEASE!

The way I try to look at it is that my life is kind of an adventure right now! I'm praying & waiting to see what opens up!

Take care all you precious people!

Denise

Originally Posted by coldavis

Hello Every One!

I will try to keep this as short and sweet as possible, but I'm incredibly long winded so I doubt that will happen! Let me introduce myself and just tell you a little overview of my CRPS story. My name is Courtney and I am 33 years old. I first developed my symptoms about 2 years ago, at the end of July, 2012. I was an avid athlete. I ran or swam nearly every day, I was on many athletic teams with my friends (softball, kickball, volleyball, dodgeball), I was active in some way practically every day whether it be zumba, dancing, aerobics, or somethings else. I loved to move. Towards the end of July I started to have a lot of pain in my right foot and ankle, but I had been diagnosed with Lupus when I was 20, so I had had a lot of experience with "mystery pain" and I often just worked through it. I had learned to just not complain about my chronic pain because there wasn't much they could do for me and being active was the best medicine for me. By the time the first week of August had rolled around I couldn't put any weight on my foot at all so I knew it was time to see the doctor. At first the doctor thought it might be a stress fracture, which made sense given all the running I was doing. The x-rays and MRI's however showed nothing and the pain kept getting extensively worse.

Fast forward to February of 2013 and my right foot is still in an orthopedic boot (had been that whole time) and the pain has increased to the point that I can't walk the few steps from the couch to the bathroom without being in screaming agony. My foot is swollen, constantly changing colors, very sensitive to touch and water, the skin and hair is changing. I have by this time seen several doctors and still do not have a diagnosis. The pain is incredibly intense and keeping me up at night. Finally I was diagnosed with CRPS. Looking back it seems like a no-brainer. Unfortunately, too much time had passed for many of the treatments to do much good, plus the therapists had been using ice on my foot from the beginning (even though it was excruciatingly painful). The doctors that diagnosed me did not have the best bedside manors... They basically told me I would be crippled for life, there was no hope for me, and that I may face amputation down the road. The doctors also weren't that knowledgeable about CRPS in general.

I also went through an extremely high stress period during this time. My then fiance heard my diagnosis, cheated on me, and then left me for the other woman because he couldn't handle "being with a cripple". (I guess he wasn't ready for the "in sickness and health" thing) That same week (while I was at my parents recuperating) my house was broken into and everything not nailed down was stolen. And then later that month I was forced to leave nursing school even though I had a 4.0 average, because it had just gotten to be overwhelming for me. We all know that stress can exacerbate CRPS and I really think that dealing with such an extreme amount of stress during my diagnosis and while I was trying to come to grips with everything just made my condition so much worse.

In the beginning I was not very knowledgeable about my condition. I thought I was, but I wasn't. I trusted my doctors when I shouldn't have. I believed them when I shouldn't have. In May of 2013, my doctors offered me a Spinal Cord Stimulator, telling me that it was my last treatment option for any relief. I should have done much more research. I thought I had done my homework, but I hadn't. I had the SCS implanted in September of 2013. At first I really thought it was helping, but then my CRPS started to spread. I think the surgery to implant the SCS is what caused my CRPS to spread. My CRPS is now in both lower extremities from the hips down and in both hands and forearms. It also sometimes is present in my throat and neck area as well as my lower back and abdomen. In just the last few weeks I have been having the burning pain and sensitivity to the water in my upper back. My stimulator doesn't even work anymore. I will never have it removed.

I am still looking for a better doctor to treat my CRPS, but every doctor I have tried to see has declined to treat me because of my "complicated case". They have all confirmed my CRPS, but nobody wants to take on my case bc it is too much work for them. I not only have all the typical CRPS symptoms, but I also have severe nausea and vomiting that is present on a near daily basis. I strongly suspect this is related to the CRPS and have even brought my doctors several peer-reviewed articles that suggest these symptoms could be the result of CRPS being systemic in nature. I have a strong suspicion these are being thrown in the trash as soon as I leave. They just send me to a GI doctor (who by the way has never heard of CRPS), who as soon as I tell him these concerns says "you should have told this to your neurologist"...hmmm

In positive news, exactly a week after my back surgery I met the man of my dreams. He has never seen me as a disability. He thinks I am the bravest, strongest woman he has ever met. We just moved in together this week and he takes such great care of me. I can finally rest!

I am looking forward to getting to know everybody on here and hopefully we can all help each other out! I am no longer working (I am in the process of applying for disability) so I find I spend most of my good days on the computer. And well, I find if I have a bad day I would rather vent to someone who truly understands than to the people who try so hard to understand but can't... those people need a break every once in a while! ;-)

Gentle Hugs!
Courtney

Originally Posted by dlkeil

Originally Posted by Sheri

Just diagnosed 6 months ago, not much support or experience for the medical community in the area where I live.

Originally Posted by Sheri

Just diagnosed 6 months ago, not much support or experience for the medical community in the area where I live.

Originally Posted by septmystic

Hi - One of the worst things I have found with RSD is the non-support of medical professionals. It took 6 years for me to be diagnosed, test after test, attitude after attitude and finally confirmation. It started in my left hand/arm and face then moved to my right arm/hand. Both hands are effected now so I don't type long. But still, I am on 3 waiting lists for Ketamine (Any-one know a doctor?), one doctor will see me for 15k but he is far away and my current doctors say there is nothing they can do for me. Pain meds that barely touch the surface, no support and still a lot of attitude. Talk with people, search for help and reach out that is all we can do! Unfortunately, I have found that we must find answers ourselves. Don't give up! I made up a saying long ago that I think all doctors should adhere to...."For a man/woman to truly see, they must look beyond their own ego":icon_wink:

Originally Posted by dlkeil

Originally Posted by RSDmom

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.

Originally Posted by GalenaFaolan

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.