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RSD Diagnosis/Pain Clinic Nightmare
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tuloud54 posted:
About 4 years ago the top of my left hand became painfully cold. Went to family dr of ten years. Sent me to neuro's,had mri's. and put me on Darvocet,4xdaily.Another year goes by and coldness went all the way up my arm to the shoulder. I could not work after 3 weeks. Doctor signed me out on disability and working together we finally found meds that worked for me. 50 mcg fentanyl and 4 percocets daily. Moved out of town and was referred to a pain mgmt clinic as my dr was now 90 minutes away and he was also worried of writing scrips. Pain clinic kept me on 50 patch and stopped all pills. I figure these people know what they are doing so I went along. The patch is a godsend but I noticed I had trouble going in stores,movies and generally places in public due to cold temps causing me pain. I tried expaining to clinic I was worried that quality of my life dropped way down due to avoiding waht is normal temps for someone else. They said I should live with and not complain. Several times the patch had not worked for the full 72 hrs and with no back up,I ended up being in pain. I'm labeled drug seeking and have found a local dr put am really losing hope when all I wanted was relief as needed. I see a specialist for rsd in a week but now am scared. I would take nothing if I wasnt in pain. This pain clinic hurt me when I was originally excited to go. It's like they never believed I was in pain to begin with. I've lost everything and now am just looking to score drugs. This bites. I have never abused any meds and when I have no pain relief I would rather chew my arm off. Sorry to ramble but I'm angry,scared and hurt. I've done nothing wrong but this clinic was frustrated with me early on because I was still in pain. Not looking for help just prayers that someone will believe how much this really hurts. It used to be a bad dream but has now turned into a nightmare.
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lazydazey responded:
Oh, I hear you, and do believe how much you hurt! Your experience with the pain clinic isn't all that unusual unfortunately, but I am so sorry they treated you that way! We with chronic pain get these attitudes all the time which only makes things worse. (I have scoliosis, spinal stenosis, degenerative disc disease, 3 messed up discs, arthritis in my spine, facet joints and other places, believe me, I understand pain!) Bad enough to have to deal with pain that never goes away and then you get the ignorant attitudes and judgement-"Oh it can't be that bad! You should just suck it up" or one I really hate, "Oh, you shouldn't take narcotics, (even though sometimes that is the only way I can have any quality of life and get done ALL the things I need to do) you'll become a drug addict!" I wish all the nasty doctors and people that have the nerve to judge me could hurt like I do for one week without pain meds...they would probably run for the very meds they judge me for taking! And I would like to be able to hold those meds...just out of their reach! I get what you're feeling, believe me, you are not alone! I get jugement and attitude at the pharmacy where they never fill my medication on time it's usually two or more days late because they don't care, and if a pain patient makes a fuss because of being treated like crap then you get treated like some funky junkie from off the street; then there is my pain management doctor who is injection crazy, my pain is not being managed properly, but if I complain he wants to do another steroid injection that doesn't do much for me but sure lines his pockets! Tried to move to another doctor only to find ALL of them in my area just love the injections, nothing different there, so why change? All I can tell you is to keep looking, and keep trying to find a doctor who is compassionate and listens-they are rare, but there are some out there that are actually human instead of pompous asses. Maybe try going back to the doctor you used to see and see if he can find someone decent to refer you to. I would also take someone with me if I were you when you go in to talk to the doctor if just for moral support, sometimes doctors aren't so rude if there is a witness. Keep your head held high (if it doesn't hurt too much!) and don't let ignorant jerks that treat you disrespectfully get you down-the world is full of them, but you didn't ask to be this way, didn't want to be this way and don't deserve to be treated with anything less than decency and respect. A good link you might want to check out-
http://www.howtocopewithpain.org/blog/47/are-you-pain-free-10-things-those-of-us-in-pain-would-like-you-to-know/ . I hope you have friends and family that are a decent support system, if not you might want to print out what's in the link and tell them to read it. If they have brains maybe they'll understand; if not they are not worth your time. Hang in there sweetie, this is a good board, with nice folks, can't fix things but we understand how you feel, we "get" it. Take care, hope you can find a decent doc and hope you feel better. You'll be in my prayers, please let me know how it goes. God bless you.
 
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TDXSP08 responded:
Tuloud if you click on my avatar (my wheelchair) you can read an overview of my problems- i do not detail much but if it is 72 degrees in the summer and i am not in the direct sun with a gentle breeze you will find me wrapped in a blanket< i gave up showers 4 years ago in favor of those bath in a bag wipes that hospitals use because if i take a shower when i am done i shiver for between 6 and 8 hours even when i am covered by heating pads and heavy quilts. My right hand is so sensitive to temperature variations that all year round i wear a glove on that hand, and what baffles every doctor i have seen is that when my pain is at its worst in my right hand the temperature of that hand can be as much as 12 degrees colder than the left hand, they have checked blood flow oxygen all the tests that they know to do and they all are identical to the left except for the temperature. stay strong do not let the system beat you down, and come hear to vent or get support from us all we can literally almost share your pain, and lots of us got our "teeth kicked in" by doctors before we found a decent one who actually cared and would care for us. Don't be a stranger !

Peace
i have no small step for man, but i have 6 tires for mankind,Watch your Toes!
 
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tuloud54 replied to TDXSP08's response:
Thanks for the help. I feel so guilty because my grandmother always told me,there is always someone who has it worse. I never considered myself selfish and worked with the mentally ill to make a small difference in peoples lives. Seeing patients in so much pain,emotionally,that dying seemed easier never entered my own mind. Now, there are worst things then dying makes me ashamed. I know I have been blessed and wish I could just have my life back. The hardest thing is getting anyone to listen,really listen that I'm not trying to get high. I'm trying to get normal. So sick of feeling sorry for myself and almost no one understands. I'm so sorry you suffer. Thanks for thinking of others when I can't even imagine your pain. I only know the truth of my own. So exhausted from begging for help and should just pull myself up and get over it.. Thanks for your time. Praying for anyone who suffers needlessly.


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