Quote:
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."
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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