Originally Posted by TheChase

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."

Originally Posted by Lottie

Hi Courtney, Welcome! Sorry you are struggling so much. You have come to the right place. Lots of good people here who are willing to give support.-lottie

Originally Posted by coldavis

Thank you Lottie! That means a lot to me! I had a really positive meeting with a disability doctor on Friday who thought my case was pretty cut and dry (but also said she didn't make any final decisions) so maybe things are looking up for me!

Courtney

Originally Posted by Lottie

Hi Courtney, Welcome! Sorry you are struggling so much. You have come to the right place. Lots of good people here who are willing to give support.-lottie

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 AngieG

Hi, I stumbled across NT when searching for information re: 5 day Epideral treatments and SCS for CRPS. I live in the Chicago suburbs and Dr. Lubenow is one of my Doctors at Rush Medical in the city. He is pretty well known for treating RSD/CRPS.
My Sciatic nerve in my right leg was damaged in a hip surgery 2 years ago. I was temporarily paralyzed in my right leg. I've gotten most of the function back but My foot is still struggling along. I have only partial movement but signs of life still seem to be there.
I was diagnosed with CRPS about 8 weeks after the surgery. Pain in my right leg kept increasing to a number 9-10 pain especially at night and after several emergency room visits they admitted me. I was placed on IV pain meds there until they figured out what to do next. Several nerve blocks later, I entered a full day outpatient rehab program that was fantastic and I got back on my feet again. I still go to therapy, 3times/week. The biggest challenge in all of this is managing all the meds I'm on. Very,very high doses of Fentynal, Roxie, Lyrica, Amatryptilyn , and others. Though these meds keep me out of the emergency room and allow me to rehabilitate at therapy, I've begun to realize what the Docs have been telling me all along, that living life on these meds may not be a sustainable plan. But if not this route, where do we head?
I'm scheduled for a 5 day Epideral ,on Dec 16th in an attempt to switch from the Fentynal patch to a long acting pill. I'm very skeptical because they tried giving me the hydro-morph pill initially when they were weaning me off the IV pain meds way back in the beginning, and that strand of Opioid didn't work. I know between now and the 16th, I need to change my thinking on this. In order to get the CRPS to retreat, I need to convince my brain that it's possible. My attitude will need to get a lot better between now and then. (I'm working on it).
I'm here in the Forum to learn and discuss options with like minded folks.
We'll talk more soon, I'm sure.

Originally Posted by Jo*mar

Feel free to post your story, your RSD history, or an introduction to the forum members.


Hello & Welcome -

If you haven't posted in the main area of the RSD/CRPS forum, please do so, as sometimes new members get missed if they only post here.

You can copy your post from here, or make a new thread so the members can say hello.
Here is the New Thread link-
http://neurotalk.psychcentral.com/ne...newthread&f=21

Here is the main forum page for the RSD/CRPS threads & posts and ongoing discussions -
http://neurotalk.psychcentral.com/forum21.html
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