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Old 10-16-2002, 02:16 AM   #1
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kimkimby HB User
Cool Pain Meds for RSD

I am a 42-year-old female with RSD that began in my right foot/ankle after I tore my Achilles Tendon at work. It was mistreated and consequently I am now disabled because of the unrelenting pain. My pain management doctor that I was finally able to get to see after threatening suicide 8 months after the injury, diagnosed me immediately with late-stage RSD. Within a month, it spread to my right calf, left foot, then my right hand/arm/shoulder, and now it is in my entire back. I do not sleep for days at a time, and then only after I am completely exhausted-then I can sleep for a couple of hours-then begin all over again. Because of severe drug allergies and problems with meds not working for me, my doctor has changed my meds nearly every week since January. I finally began feeling nearly normal again when I began the Duragesic patches (The strongest strength worked)-but then, I developed an allergy to the adhesive and tapes-so I could no longer use them. I am now using Dilaudid(morphine) 8mg every 4 hours, Actiq suckers 400mcg for breakthrough pain, Baclofen for spasms, Celexa and Paxil for depression. And I still have pain! I can do very little without severe pain, so I spend most of my days changing positions all day and night, trying to be comfortable for even a few minutes. I cannot lie down because of my back, so I have to prop myself up with 5-6 pillows just to be able to take some pressure off my back. I'll tell you what-I, too, was a very active person before this-I put 120% into my job, my life, everything-then this happened. I feel like committing suicide nearly every day and cried when I finally got to see a psychologist after fighting with the system for almost a year to be able to go. If it weren't for my having children and a wonderful, loving, caring boyfriend, and the ACTIQ suckers, I would have done it, believe me. I have enough schedule 2 narcotics in my apartment to kill a horse and then some. But the ACTIQ is a godsend, people. Sometimes, when the pain is very severe, if you put one in your mouth right away at the first sign of a severe epidsode, it can stop the pain in its tracks in a few seconds. However, sometimes it takes 15 minutes, or the use of another sucker, to make the pain ease off. In any case, they work. I even wrote a letter to the company that makes them to thank them for saving me from suicide. I have always prided myself on being a very strong individual; I have spent my life taking care of others-but when you lose everything including your sense of self-worth, on TOP of having the single-most painful disease known to man, suicide seems very welcome. I am just glad that there are others out there who may benefit from the use of the ACTIQ suckers. If you get them, PLEASE read the instructions very carefully and make sure you call the company for their free welcome/safety kit. These suckers can kill any adult, child or pet who uses them if the person is not already taking opiods-so do NOT leave them lying around where anyone else can get ahold of them. They are very potent, and, like my doctor said-they act faster than any ER doctor can give you a shot of Demerol or Morphine. I hope this information helps you all. Have a pain-free day- we all deserve one! Kim
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Old 11-13-2002, 08:15 PM   #2
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d'bera HB User
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kim,
glad the actiq suckers work for you. I'm in the middle of the morphine injection trial for a pump. I've been there, done that many,many times. Only my supportive & loving husband (who believes i'm in pain and not nuts,or lazy!) and my daughter have kept me on this earth. I've bottomed out on oral meds and it's starting to show in my liver tests. Blue Cross/Blue Shield federal has got both my doctor and I jumping through hoops and red tape. I had the three trial injections with a combination of fentanyl and morphine (morphine alone doesn't always work for everyone) would not approve the pump implantation until I did a 7 day trial hooked up via spinal catheter & temporary pump (with only morphine- their 'specialist' said he could not use any other drug in the trial!). Now, after this is done- today is the first day (& there's a real difference with the fentanyl gone!) then wait a week to heal, get an ok from BC, again, and then surgery. The fun, not so painful christmas i was dreaming of is gone, along with my flight home to see my family, because of stupid, stupid people making decisions about things they know nothing about! BC/BS would rather pay over $100,000 a year for my meds than the $20,000 for pump and a fraction of the medication!!! It's been a long haul, but finding Dr.Bedell was the best thing that ever happend to me, because now there's hope for a future that doesn't always mean mamma stays in bed,while everyone else has fun. (I had to retire from teaching- after 20 years and finally am on disability + a year ago our home burned down and my daughter was diagnosed with juvenile type 1 diabetes (she's on a pump now). Knock on wood, the future looks ok!Hope everything works out for you! (my daughter, 12, thinks the actiq suckers are so un-cool!)
good luck & many blessings!
d'bera

------------------
suffers in silence

 
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