Just wanted to mention as well as no cure there is no test that is definitive proof of RSD or lack there of either. It is a clinical diagnosis and can take a long time and numerous doctor changes. Sorry to hear of your pain, I can only hope for your sake it is not RSD and is something curable instead. I don't know them all, but two of the things that most doctors look for in RSD diagnosis are extreme sweating at or near the worst pain region and a high sensitivity to ice.

Hi Becca The only way my RSD was diagnosed was through a Nerve Conduction test. Take care LISAR624

Hello I am new here... I have RSD about 7 years ago in my left arm from a car accident... I have the electric simulator in my back...Also I had a lower fusion in my L-4 L-5 and S-1 and S-3 in back....Had that two years ago.... Now out of now where in Jan. this year I woke up in pain..I get numbness down both of my legs and my arms.. Get pain in my lower back where it's hard for me to walk, sit and even stand...Went to the doctors and they said it could be Fibro???? It's been six mos about and still no better... Now the doctors say I could have an infection in my back since I have two different temperatures.... also said that I have a really bad flare up???? I was just wondering if anyone else is experiencing this at all .. Any help would be helpful..

Thank you

When I awoke from my back surgery. My RSD had spread to both legs. I have also been diagnosed with Fibro. about 5or 6 yrs ago. I pray your DR. can find out because if it is a flare-up. The sooner they help you the better!!! LISAR624

I have been a member here for a very long time, but actually never told the whole story of how I got RSD. Finally I put it down in video. So I decided maybe I should finally share it in this thread.
I have read all the stories, and my heart breaks for everyone. I will always be praying for all you

http://youtu.be/g5Q5msVJInk

I have been suffering for 18yrs with RSD. I watched your video and was very moved! I am so glad there are supporters that we can communicate with! LISAR624

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

Hello!

I'm Chase. I was diagnosed with RSD back in autumn 2010, stemming most likely from a surgery back in 2003. I'm 27 now and between neurologists, so I'm pretty frustrated. I am a trans man in Philadelphia (Pa, USA) and for me, testosterone helped with the secondary symptoms of the RSD a lot - making things manageable for a while. I work full time at a non-profit and stay pretty active - yoga, activism, community organizing, playing with my dog.

I am not currently on any medications for RSD other than lidocaine and you can probably imagine what a problem that is. My old neuro cycled me through a variety of neuro meds - lyrica, gabapentin, cymbalta, tramadol - and mostly they left me still in pain but as a zombie. (I tried cymbalta again in the spring of this year and basically slept through the entirety of my goddaughter's vist - unacceptable.) I had a neurologist who was willing to work with me, but he left the practice and I was landed with a guy who is a neurogeneticist and just shunted me off to a pain specialist.

I haven't made an appointment with the pain specialist (though I do have one with another neuro over at UPenn Hospital in September) because while I am avidly concerned about my pain levels, I also need to be able to function at capacity. Not working isn't an option for me (I do not have any kind of familial support nor anyone to fall back on) and the regimens that appear to be recommended seem to assume that I can go without that. Additionally, the non-paid work - organizing and activism - are even more important to me, psychologically and emotionally - than my paid work.

On the other hand, my RSD has progressed to be hemispheric - my whole left side is affected, with the skin issues and even in my gums. Every day is a struggle, but the drugs only seem to make the struggle worse. I was always in just as much pain (except for the lidocaine patches) but I wasn't able to focus or do anything. (My favorite coping mechanism for pain is to lose myself in something intrinsicly important or interesting.) I really have trouble with the idea of giving anything up just because my body isn't working "properly."

Chase,

I am Courtney and also new to this site. I admire your desire to keep working. I continued working in a very high stress environment for some time after my CRPS started. I completely understand exactly where you are coming from about not wanting to be a zombie. I didn't want to give up working. I was alone for a long time. I was living alone and worried about how I would make ends meet if I gave up my income. I had already used up my savings on my healthcare to date, I didn't have any left over. I did have family, but didn't feel like I could burden them. My sister was already on disability and living with them and my dad had just been diagnosed with cancer. While my circumstances aren't they same as yours and I cannot ever profess that I know what you are going through, I do know what it is like to feel like you have no other options but to continue on working when you have this "monster" constantly lurking around your life.

But the funny thing is, stopping work has single-handedly been the best thing for my CRPS hands down.

And the decision was made for me. By my bosses and my parents behind my back and together because I was too stubborn to do it myself. I was too scared to give up work. I had no idea how I would support myself. But it has worked out. But I am not going to lie, I know my situation is not the same as yours.

I know the reason my stopping work has so dramatically helped my symptoms is because I worked in a very high stress industry and with an especially high stress moronic company within that industry. The mortgage industry is very volatile and full of deadlines and screaming customers, and screaming realtors, and screaming loan officers, and screaming underwriters, and screaming insurance agents, and screaming title companies, and I think you get my drift. It is also an industry where people expect processors (that is what I did) to work literally any hour of the day or night. I would have weeks where I would work 65 hours easy, but I would also have weeks where I would work 10 or 15 hours a week. It was feast or famine, which was also very stressful since I was paid by the loan. And it wasn't only the actual stress from the job, but the stress from knowing eventually I wouldn't be able to keep it. I knew that my health was deteriorating to the point that someday I wouldn't be able to work. Denying that would just have been pointless, but I was going to put it off for as long as possible. I was hoping years, like 5 or 10. I was constantly worried that people were plotting to get rid of me. (turns out I was kind of right, just wrong about their motives and who the people were ) I was always nervous about money and paying my medical bills. I was constantly stressed out and constantly in pain.

I don't know about you, but stress really exacerbates my pain significantly. Like when I am in a stressful situation I can feel my pain rising equally with my stress. Now that I have removed that stress from my life, I feel so much better! I mean I still have pain of course and I still have my bad days, but everyone around me comments on how much better I am now and how more relaxed I am. I just handle my pain better now. I doesn't bother me as much, if that's possible. I mean, I still have stress. There are still a few major stressors in my life like filing for disability, my moron doctors, my not so understanding mom, and my dad's cancer. But honestly removing that major one has made a huge difference in my life.

I am not trying to tell you that you are making a bad decision at all. I am not in your shoes. I just wanted to give you a different perspective. If I had known what a difference it would make in my health I would have made the switch much earlier and I wouldn't have spent so long agonizing over it in secret.

Also, if you gave up your work that doesn't mean you would have to give up your volunteer work or activism. If you were applying for disability you may want to put it on hold for a short while just during that period(just so they don't say, "well you are well enough to do that..."), but I think it would be a positive thing to stay active in your community.

Anyways, I didn't mean to preach to you. I honestly find it amazing that you are able to do all that you do! I can't believe that you work full time and volunteer and do everything else that you do! I am in awe of you! I remember what it was like to be in my 20's and have energy once!

Good luck to you in finding a doctor/treatment method that doesn't make you a zombie because I really do hope you get to keep on enjoying your full life!!!

Courtney

Hey Courtney.

I read your intro and posts and man - what a tough run. I do appreciate your long-windedness though. You're very well spoken

I went through some very similar transitions as you, going from being highly active and focused on professional success, to not being able to walk, (or work, or sleep.)

As I look back - and this is one of the things that drew me to post --- Before CRPS/RSD, on the physical side of things I was SO active that it just piled on top of the rest of the stress I'd accumulated. I thought the activity was counterbalancing my existing work/life stress - brrrnnt. It was further weakening an immune system already on overload.

In truth I had lost all perspective of what is important. It ain't a promotion, it ain't a diploma, it ain't any kind of material success. It ain't even reputation. It's character. Only YOU really know you As for me, I was selfish for most of my life - and completely ignorant to that fact - and I justified it to myself that it was for the benefit of my family.

I got better by gradually unwinding and releasing all the sources of stress I had compiled over the years. This in itself sounds selfish, because I dedicated 100% of my time to healing, research, rehab, and meditation. But my family let me do what I needed to do, and I am forever grateful. I got out of the boot, desensitized my leg, and painstakingly learned to walk again. Here's a link to the list of things I did that I believe helped me - maybe one or two of them will help you. http://neurotalk.psychcentral.com/thread205597.html

You have an awesome guy supporting you. And you've already begun making the time for yourself to heal by eliminating as many of the major stresses that you can. And you're still really young, no matter what you think:P

On the medical side - I was fortunate and made the right choice for me early on - and elected not to go through with the further invasive procedures recommended. Doctors are the right choice for some, and not so for others. You're further along than I was in that regard, but I believe anything that can be done, can also be undone. Time is the main variable.

I know some of this comes off as preachy and I'm sorry - I just want to help. You are friggin' tough and we're lucky to have you here. All the best.