Make sure you keep on top of any flare-ups! Sounds like you are doing a great job!!
LISAR624

I am 19 years old, and I was diagnosed with RSD on May 22, 2014. The day before Easter April 18, 2014. I was at work, I sat down at break time, and when it was time to get up and go back to work. I collapsed, so I got back up (pretty embarrassed) so I tried again, and fell again. It felt as if there was no heel bone in my foot. Thankfully it was closing time, so shortly after that I headed to my car and went home. When I got home I tried to get out of my car thinking, "it was probably just a one time thing, i'll be fine now." Boy was I wrong, I couldn't make it any further than the door of my car. So, I called my mom to come help me get inside, I told her I would sleep it off then we would go to the hospital after all the Easter festivities were over. By this time I had my walking boot (which I had used from 3 previous surgeries on the same foot) and my crutches, my foot was swollen like a sausage and looked bruised, and all sorts of weird colors. And the pain was so bad I couldn't sleep, for weeks, I couldn't sleep.

When we got to the ER Easter morning, they ran X-rays and took blood.. the normal work up. They told me I had a sprained ankle. LOL I've had plenty of sprained ankles, this wasn't a sprained ankle.

I then went to my foot doctor, whom I have had quite a few surgeries with... When I was younger I had grown too fast, so my muscles and bones didn't have time to catch up with each other. So I had to have reconstructive surgery on both feet. To fix my bunion, draw an arch, and fix my soulous muscle.) He ordered me to get a bone scan, MRI on my foot, leg, knee, and lumbar.

After all the tests came back negative, I was sent to a local neurologist in Lima, Dr. Kuhlman. Dr. Kuhlman was concerned by the amount of pain I was in.. You know how they ask you, " Rate your pain on a level from 1-10" in my mind I'm thinking uhhhh 15!!! He ran an EMG from my toes to below my knee, and I'm sure all of you other RSD patients know those are just AWFUL.. after a little talking he then looked at my mom and I and told us he thinks it's best if we go somewhere bigger, like OSU Medical or Cleveland Clinic. So when we walked out of the office we made an appointment for the 22 of May at the Cleveland Clinic. He also prescribed some pain medicine to help this God awful pain syndrome.

May 22, 2014 we arrived at the Cleveland Clinic to get this all straightened out. We got there around 7am. My appointment was at 7:!5. After our first initial consultation with the doctor, she wanted to run another EMG. They had their very own wing of rooms designated for these EMG's. I will never forget this day.. Because the man who did my EMG started at my foot, and went all the way up to my lower back. When I say it was the most awful hour or so of my life. The doctor struggled to keep my foot at the right temperature for the first part of the test, so we kept putting my leg into warm water to keep it at normal temperature.

After the EMG was done we went to another wing of the hospital for a Sweat
Test. Which was pretty cool actually, if any of you have had one you will know what i'm talking about. But for those of you who don't.. They put these sensors, the first part was to make my feet sweat. And the second was to draw the sweat off. It was actually really cool.

The tests results couldn't be given back that day because I guess the sweat test takes some time to read. By time we left the hospital, it was around 5 or so. She gave me a prescription of amitripilyne (or however you spell it) ... I took the medicine for about four weeks, and yet had no relief. She then told me to go to a pain management doctor. Either locally or there at the Cleveland Clinic. But since we live near Lima, we decided to try to go locally.

I started desensitation therapy for the INSANE sensitivity, and physical therapy because I had lost all movement of my foot during the month from hell. The therapies helped tremendously with my sensitivity and range of motion.

The next step was to find a pain management doctor. So, I am currently seeing Dr. Hogan in Lima. We had a consultation with him and he decided we would try to do some nerve blocks to try to make the RSD lay dormant. I was scared, but also all for it because I wanted nothing more than to be healthy again and get back to playing volleyball. Of which I had a spot on my college volleyball team.

The first block, a lumbar sympathetic nerve block, went well. I unfortunately had no relief but I wasn't expecting it to come that fast.

The second one, MAN WAS I FEELING GREAT!! I went and played volleyball TWICE and wasn't feeling too bad! So at my follow up appointment from the block, I told my doctor I was feeling a lot better but was still having quite a bit of pain sometimes, but not as often as usual. He decided we would try one more to see if we could shut it off completely..

.. This is where my problem comes back..

The day after the nerve block, October 10, 2014. I was feeling ROUGH and I mean ROUGH. my foot was killing me, (was hurting worse than before the block) my knee hurt so bad I could just cry. I was so confused, and frustrated. So I waited a few days for the pain to go away, like I figured it would.

A week had gone by and my pain was not how it was from the 10th. It was worse. WAY WORSE. I noticed each day it got worse. And I had a deep pain in my knee, front and back? And I noticed I was starting to lose a little bit of range of motion in my knee, and some weird feelings I had never felt before were coming back in my foot. So I called the doctor back..

He pushed my follow up appointment up and Saw me on Tuesday, October 21. When the doctor came in, he heard my story of what was going on, he felt around on my leg, especially where I told him the most pain was.. Then he stopped and just looked at my mother and I. He told us it would be in our best interest to go right to the hospital because he felt something behind my knee and thought it may be a blood clot, and since it had been quite a few days since my pain first started, he was worried the clot may have traveled already.

When we got to the ER they ran test after test, even a chest X-ray and an EKG because of how high my blood pressure and heart rate were.. It was like deja vue.. the doctors came back in and said I had an infection somewhere because my white blood cell count was high. Gave me an antibiotic and Tramadol, and sent me home, he said to follow up with a family doctor in 2-3 days. Instead, my mom and I made an appointment at the Orthopedic Institute of Ohio with a knee doctor.

On Thursday, October 23 We saw Doctor Sanko at OIO. He felt around and noticed that my pain had gotten way worse than Tuesday, even lost more range of motion since Tuesday. He noticed how diffused my pain was, and stated he believed it may be my RSD traveling up into my knee. he ordered an MRI and said he doesn't think anything is going to show up on the MRI but it was just to rule anything else out. He said with the way things have progressed so quickly, temperature differences, and a little discoloration. He believes it is RSD. My MRI was this past Saturday.

Now here is where I need all of you. Thursday I have an appointment to get my MRI read, an hour after that I have an appointment set with my pain management doctor.

I'm praying so hard that something will show up on this MRI. Because I cannot take anymore bad news. And I want this to be something that can be taken care of. But right now.. my pain level on that "scale from 1-10" is about an 11. It sucks, I can't walk right. I look like an idiot walking to and from class. And on top of that, I can hardly EVER sleep.

I just want answers. My mom and I are thinking maybe going to OSU Medical or Cleveland Clinic for this now may be in my best interest.

Those of you who live here in Ohio, where do you go for your pain?
Are there any doctors you would prefer/recommend?
Or a certain hospital?
Cleveland Clinic's neurology department was great! Do any of you know of their pain management department?

Any recommendations, advice on how to cope, things you have learned to help you relieve pain, things that keep your outlook positive.. ANYTHING AT ALL. Please, let me know..

I know this was really long but I hope you had the time to read it, because I really just need some help and advice. I'm trying to stay so strong and be positive but it's so hard when you're in this much pain..

Thanks in advance!!

Bailey

You might want to copy your story onto the main RSD section with a thread of your own for most replies.

http://neurotalk.psychcentral.com/forum21.html

New thread -
http://neurotalk.psychcentral.com/ne...newthread&f=21

I am 62 and have had RSD/CRPS for over 20 years. I fell at work and compressed/ herniated all my lumbar disc. I was bedridden for almost 6 months until I found an RSD specialist. He had me up and active and actually functioning human for the past 18 years.
I was able to take care of my husband who is presently rehabbing from back surgery. He is due for a left hip replacement and then a right knee replacement. We also are raising our 7 & 9 year old grandchildren.
But this is all in jeopardy!!
As my Dr retired but not before training an associate to take over his practice. Well this Dr gave me A 90 notice that he was shutting down his RSD practice and moving across country ( Fl. To Az.) To open a clinic in a different field of medicine. That was in Nov 14 and the only Dr I have been able to find is a "pain Dr"
She refuses to even discuss my pain management that has worked over 18years. Instead she will only prescribe a 4 Butrane patch 10 mcg/hr. a month instead of 300 .03 mg Buprenex inj a month. Also I have been taking 740 Baclofen 20 mg now I have 30 10mg @ month.
This has led to being in the ER on 3 different times in extreme pain,high BP to the point of almost stroking.
Several RSD symptoms have returned migraine,burning/pain in both legs,extreme sensitive to temp changes, inaibilty to stand for more than a couple of mins w/o having to lie down. And forget sleeping more than an hour w/o waking from the pain. I have also lost over 60 lbs along w/severe atrophy in both legs.
I haven't had these problems in years.
The last time I tried to discuss these problems with the "pain Dr" I asked her what happened to "doing no harm!" I was quickly informed if I was if I wasn't happy I could find another Dr.

I am trying!!!! I just hope I do before its too late for me and my family

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.

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

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