Hello Heidi,

I'm so sorry you are having a rough time of it - I hope this flare passes soon!!

What kinds of things are you doing to help cope with the pain/depression/frustration?

I'm thinking you might get more support if you post this on a new thread on the main forum.

I know this sounds impossible when pain is high but, if there is anyway you can get up and even just go sit outside you will be happier. My doctor has told me more than once that the minute I stop moving I won't want to live.. I fear that so, no matter how bad the pain is I find a way to get up and out. I have had 6 recent hip operations so I can sympathize with your hip pain; have you tried taking Celebrex? Celebrex can help with the arthritis pain and reduce inflammation from CRPS.. might be worth asking your doctor for some samples since I see you mentioned you don't have insurance at the moment.

Can you get on state funded medical? How about reaching out to local churches or other services that may be able to assist in one way or another?

Dig deep.. gotta find something positive, something you enjoy that can bring a little sunshine to your face. Hang in there Heidi!!

Wishing you a better day,
Tessa

Sorry you are having such a hard time with the pain. If you can, ask your doctor about Ketamine infusions. There has been some success with that from trials with our military. Some have had a remission. There is also a ketamine compounded cream that may take the edge off. Bio freeze is along the same lines. I don't have RSD but PN, and I use all the above. Hang in there, and I hope this flair, goes away. ginnie

Hello, I'm 24 and have had RSD for 6 years, though I'm blessed to have an incredibly mild case. (Sorry, this is so long. The last paragraph is a kind of summary of where I am now.)

I've never exactly been what you might call coordinated. I think my older brother got my share of grace and athletic ability as well as his own. Despite this, when my best friend invited me to go snowboarding for her 18th birthday I went. I'd never been snowboarding or skiing and new that I'd hurt myself, but I also knew that I'd have fun. I reasoned that we can't live our lives scared of getting hurt or we won't have any life at all (I mostly still agree with this).

As you can probably guess, I did get hurt. I've had a lot of practice falling down in my life (see above comment about my brother stealing my coordination) and mostly manage do it quite well, but at one point I fell to my knees and my right knee hit a hard patch of ice. It hurt like crazy, but I was fairly certain I'd only bruised the bone and not broken anything. I iced it overnight and stayed off the slopes the next day while my friend continued to barrel roll down the hills and received nary a scratch.

At my mother's insistence I went to the dr and he confirmed that I had bruised my kneecap. That was pretty much it for the next 6 months. My knee continued to be swollen and my pain didn't go away even a little bit. Most people would've gone back to the dr at least once in that time period and I admit that I should have too, but I didn't want to complain. See, my dad has lupus and has for most of his life. I know a lot of people with lupus who just sit around and do nothing because they hurt, but not my dad. He goes to work everyday (his job is very physical) and when he gets home he keeps moving and being physical until goes to bed. I reasoned that his pain was much worse than mine and I had no right to complain. I should also mention that this all occurred at a time when I hated myself and my long-term goal in life was suicide because I felt my existence only hurt those around me. (Don't worry, I'm better now. I feel neutral towards myself. )

So 6 months have hurting myself I went back to the dr. He sent me to an orthopedic specialist who proceeded to tell me that despite my inflammation there was nothing wrong with my leg and I was only faking it to try to get drugs. He admitted I was doing a thorough job because the muscles in my right leg were atrophied and sent me to physical therapy. I've never been a big fan of going to the dr, oh sure they're necessary, but you don't go unless there's something really wrong like you're arm fell off. So as you can imagine I was done with drs for awhile. I went to my physio because I've been raised with a lot of respect for the field and atrophy is never good, though I grumbled about it being a waste of money (my mom is a personal trainer and would have had me doing the same exercises anyway now that the atrophy had been brought to her attention). I do believe the physio helped, though it hurt and life continued. I graduated from high school--though I was in enough pain that I really don't remember much of my senior year--and got a summer job working in a factory.

That was horrible. It was great money, but I was on my feet most of the day lifting heavy things and being hit on. Everyday, I'd get home around 3 p.m. and go to bed. I just didn't have the energy to do anything else. And so I returned to the dr. He decided I had patellar something or other (forgive me, it was several years ago), basically the muscles and tendons on one side of my leg were stronger than on the other side and were pulling on my kneecap (though at this point most of my right leg hurt). He sent me back to physio.

As stated above, I strongly believe in physio, but first it's important to know what's wrong. This misdiagnosis and the treatment were bad news for me, largely because they decided to treat my pain with cryotherapy--in other words, lots of ice. Ice is not good for RSD. It's like treating an oil fire with water. I got worse and my RSD began to spread to my left leg. For the next couple years I continued to go to drs and they continued to play "pin the tail on the diagnosis". They, and I, dismissed the pain in my left leg as stress from babying my right though since my first round of physio I tried everything I could think of to stop babying it.

I did get lucky in one respect though. My depression had reached a sort of critical mass. I didn't want to do anything, I didn't even have the motivation to think of killing myself anymore. I was failing most of my college classes even though I'd always done well in school. After 8 years, I finally had to admit that I was depressed. (My mom had been telling me this for years, which is why you should always listen to your mother.) After an ineffective attempt to treat this biochemically and then a misbegotten stint on prozac, I was proscribed cymbalta. I believe this is the reason my RSD is still as mild as it is.

Still, being in pain all the time and not knowing why took a heavy toll on me. About two years ago I decided I only had one option. There was something severely wrong with my leg and no one could figure out what, but there was a simple solution. Get rid of the leg. I didn't want to cut it off, but I made my peace with it. I began to look into voluntary amputation and there was a light at the end of the tunnel. Just a little longer and I would be free. It wouldn't be an easy adjustment and my family and friends would never understand, but I wouldn't be in pain anymore. I could truly start to live again.

It isn't easy finding a dr who will not only agree to cut off what seems to be a perfectly healthy limb, but will do so quietly without alerting your father whose insurance your on and has worked at the local hospital longer than you've been alive. Without HIPAA it would have been impossible. Still I spent most of my workday scouring the internet. Then one morning I came into work to find the new issue of Time magazine on my desk waiting to be added to the system (I was working at a library at the time). The cover had the words "Understanding Pain" written across it in big red letters. I read the article hoping it would say something about voluntary amputation, but instead found the first description of RSD I had ever heard. (This was the March 7, 2011 issue if you want to read it.) It sounded a lot like what I was dealing with so I made an appointment with my dr.

And so, 4 and a half years after my initial injury I was finally diagnosed. I had told myself for a long time that if I only knew what was wrong I'd be happy. Just knowing was more important than treatment, but I can't explain what a blow my diagnosis was. For 4 years I'd put up with this. And just as I was losing the last vestiges of hope that I would ever not be in pain I had found an answer. So simple that I hadn't seen it at first, but my problems were about to disappear. I was going to be the happiest amputee in the world. And then all of that was ripped away. My dreams of a pain free life went up in invisible flames. I was crushed; crushed finer than the smallest grain of sand.

In addition to my longstanding battle with depression and the demon of RSD, I had to learn to cope with my guilt and confusion. I should be happy that my leg wasn't going to be amputated, but I wasn't. Luckily, humans are great at adapting and I did eventually.

So now I'm here. I'm 24. I have RSD in both legs from my thigh down to where it's just starting to spread into both ankles. I often get muscle spasms in my upper body (myoclonic seizures/jerks) as if I'm shivering and just can't stop. The only dr I've found who seems to know anything about RSD wants to torture me every 6 months with unnecessary EMG/NCV tests so I'm not really seeing a dr. I still struggle with depression, but am managing it most days. I'm trying to save up to go back to school and develop at least a grudging affection for myself.

hello everyone. I got diagnosed with RSD 18 months ago after falling and badly breaking 3 bones in my hand. I think that I in correct plastering caused it. went through 4 casts in a week. The pain started about 10 days after. It was excruciating and was burning. Went to G.P and he gave me morphine for it for a few weeks, came off morphine the pain was worse. Got diagnosed with RSD because it was swollen red and hot. went through a year of neuro physio to improve movement. It only improved movement slightly.

Now the pain has spread up my arm and now affects my neck. My hand is red and shiny and also have some muscle wastage. Have been seeing a specialist who has put me on buprenophine patches and gabapentin. I am also being considered for a spinal cord stimulator. Have to see another specialist as I also have mild Cerebral Palsy. They are now not sure if it is in my legs and want to know what is causing me problems with my legs.

This happened on the last year of teacher training, I don't know how I completed it. Think it kept me going and helped with the pain.

Before this I could walk with crutches, now I can't use that hand and can't use crutches. The hospital supplied me with a power wheelchair to get about outdoor. I still walk by grabbing furniture with good hand. Feeling a little bemused and fed up with it all, came on here to talk to other who know what it is like.

I also taking celecoxib for the swelling.

I think I'm in the right place...lol.
New member and had read my story(by someone else, one of the main members) She said everything I was going to say.
But I'm having strong body jerks and it's only when I'm lying down, resting or asleep. My arms have jerked so hard, they go all the up! Weird. Anyway, just looking for anyone who has this same problem. Going to a neurologist in the morning. I don't know what I have, just wanted to talk I guess.

Hey everyone! My name is Lindsay and I'm 23 years old and I'm a college student. I'm currently studying social work with a minor in psychology and will graduate with my Bachelor in Social Work next year in April. I plan to get my Masters and work as a medical social worker. I love to sing, dance, act, read, write, hang out with my boyfriend, family, and friends.

I'm here because I'm currently undergoing treatment at the Cleveland Clinic and my neurologist thinks I might have Reflex Sympathetic Dystrophy. He believes that my RSD was caused by my DVT (Deep Vein Thrombosis) aka a blood clot that I developed in my leg when I was 20 in August of 2010. The DVT was caused by May Thurner Syndrome, a rare but curable disease. I was diagnosed with May Thurner Syndrome in June of 2011. The DVT has done some damage to my veins. After my MTS diagnosis, I was great until December of 2011, when I was in a car accident and the pain started again. I saw more doctors and more hospitals than I care to admit. Thankfully, my pain is being successful controlled through Lyrica and a sympathetic nerve block that I had last month. The RSD diagnosis isn't official because I underwent a special punch biopsy at the Cleveland Clinic that is only done in a few other hospitals in the United States. The biopsy was done on August 5th and it takes 4-6 weeks to get the results back. Until the biopsy gets back, my doctor can't make an official diagnosis.

Throughout all of this, I've had the support of my amazing family and friends. God has blessed me with their support. Despite the pain, I've still done well in school and have made the Dean's List a few times! I still lead a very busy life filled with school, work, and many other things. Now that my pain is being controlled, my life is so much better. The pain that I've experienced was awful, awful, awful, awful!! It would leave me crying hysterically despite having multiple pain medications in my body. It wasn't until I started taking Lyrica that my life changed and the pain began to be controlled. I'm not 100% pain free. I still can't lie on my left side or my back for long periods of time without ice. However, considering a few short months ago, when sitting in a chair for more than 30 minutes would cause terrible pain, I can definitely say I've made progress!

I can't wait to meet all of you and am glad to be here!

Hello, glad to to have found this forum. I've been reading the threads over the past few months and finally decided to join. I was diagnosed with CRPS in my right foot & ankle earlier this year. It's taking over my life and I hope to find some help and support here, and advice. I will post my story in a new thread.

Hi group. I've been lurking now and then--most of the time not wanting to think about my situation whenever I could avoid it. I was diagnosed nine years ago with RSD after breaking both bones in my forearm. It was excruciating for several months, however, with constant physical therapy, I was able to beat it. This time, when developing it immediately after simply twisting my ankle 18 months ago, I was convinced that I could once again beat it. I think I've done pretty well. I've worked hard. But I have to admit--it's not going away. It's incredibly miserable. I have always been such an active and happy person with my kids and now it pains me in so many ways that I just cannot do the things I used to do. I need to get a job, but after trying and failing once before, I'm really nervous. I dread a shopping trip I would have once loved. How can I work an 8-9 hour day when I can't make it through a few hours at home without wrapping my leg in heat or taking a nap?

I'd love to hear suggestions for making it work at work. What kind of jobs do you do? Doesn't the pain make you bite people's heads off? I have to admit I get really snippy by late afternoon!

I'd like to say I'm still determined not to let it beat me. I don't have a deformed foot. I work at it every day, wrapping it in heat, stretching my toes out, strengthening it. But the last few days have been rough and my attitude is slipping...

Welcome to Neuro Talk. If you have been lurking, you already know there are a great bunch of people here. I am sorry you have RSD. I don't have that but PN. The RSD group will support you. Just from what you said in your post, you are having pain issues. This keeps you from a job, and doing those things that you want to do. My own take on it would be to seek a few new doctors, that may think outside the box. Do any of your medications work so far? Do you have a pain specialist? I see a physiatrist, who has specialized in pain first, and then treats the "whole" person. This type of doctor may be able to help you. They are a bit different than an MD. or DO. It would be worth it to call around and see if you can find a physiatrist, and ask if they specialize in pain. I hope that you can find some relief, so that you have less pain filled life. It isn't fun, and it does push a person to the limits. I hope you get more help. Again Welcome to Neuro Talk. ginnie

Hey everyone I'm a 31 yr old woman I've had Rsd going on 2 years now its getting much worse . Especially in warmer temps. I have been to several neurologist none have helped or they act like I'm waiting their time.
The pain is so unbearable I can't walk most times I'm stuck in bed from the severe burning & throbbing in both my legs & feet which has also spread to my arms/ hands. I don't know what to do anymore or where to go everyone has a 2 yr waiting list. I also have a young daughter to take care of which I need someone to help me all the time. That is why I joined this site in hopes of getting some help or pointed in the right direction. If anyone has any information you could offer me of a doctor I would greatly appreciate it. I'm in the philadelphia area thanks