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    RSD/CRPS Pain Management
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    RSDHand posted:
    I have a terrific Pain Management doctor that is completely by the book and exausts all options before moving to more serious ones. I am curious to hear, only if some of you are willing to share, what medicine if any you utilize for pain management. I went months before finally resorting to medicine not only because the pain became so extreme but also because like I said, my preference as well as my Pain Management doctor's preference was to do whatever we could before going to medicine while we still do nerve blocks and explore other procedures to help this hopefully go away. I take an extended release medicine twice a day and and have a break through medicine in case of break through which is very sharp and depressing. I would love to hear how others manage and other thoughts. I will never stop researching or educating myself.
     
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    gailb54 responded:
    Hi RSDHand,

    I'm pretty sure that I replied to you just a little while ago on another site... in the RSD support group. This group has actually been such a help to me for the past few years as I learn about living with pain. My RSD is in my foot and it sounds like we have had similar experiences.

    You need to count your blessings about having a good pain management doctor... that's great! How did you find him? Is he very experienced with RSD? I so wish I could say the same. If I could find another one within driving distance, I would have done it a long time ago. My doctor originally misdiagnosed me, even though I had already been diagnosed and had received 3 "positive" results on lumbar sympathetic blocks. It's been a long journey with lots of twists and some were not neccesary.

    Anyway, for over 2 years I've taken a long-acting narcotic and a short-acting one for "break-through" pain which I never really understood because so much of the time I felt like we should have controlled the pain better with the long-acting med. It was often very severe even with these meds. I became pretty desperate.

    A month ago I had my little toe of my RSD foot amputated. Even though I had read that this was not recommended at all, it felt like something I needed to try and my family was all for it. That was where the RSD started and where the pain was truly unbearable. But, as I write this, the pain in the rest of my foot and other toes is pretty severe, and I can't say that the surgery was the success it seemed to be at first.

    Anyway, I hope to get to know you better as perhaps we can be helpful to each other navigating the life with RSD and how to best treat it and cope with it. Are your meds keeping you pretty comfortable? Can you use your hand? Did your blocks help? I'm wondering if a block would help me now with this increased pain and am hoping to talk to my pain doctor soon. I tried to get into see him, but he doesn't have an opening until late Wednesday.

    Let me know if you have any questions. What other treatments has your doctor mentioned, if any? I'd love to know what he might have in mind for you. Well, I do hope this exchange can help you find some answers and some support if you need that, too.

    gail
     
    avatar
    Reta32205 responded:
    Hi,
    I have had RSD in my left arm for almost 3 years. I have been able to control most of my pain with Celebrex, and two breakthrough meds (Tramadol and Vicodin). I also use Trental to improve the circulation in my arm, which helps greatly with the freezing pain.

    I was diagnosed at 10 weeks by a surgeon I had gone to for another reason. I was beginning to question my sanity because I had all these crazy symptoms that did not seem related. My OT had recognized the signs of RSD early and was sending reports of RSD-like symptoms to my Ortho. The Ortho said yes to RSD, increased my OT from 2x to 3x a week and sent me to a PM clinic. I had gone to my primary for pain relief. When I went to the PM clinic, the doctor did blocks and nothing else. The blocks were helpful. I changed PMs and the first thing this PM did was ask if I needed help with my pain. I tried Lyrica. It was helpful but too many side effects. I have tried Elavil to help me sleep, and it was very helpful with my pain, but this cause tachycardia. Often an anti-depressant is prescribed to for pain relief.

    I tried physical therapy again around the 7 month mark but it caused more pain. My new PM has told me PT will only hurt me now. I did do Tai Chi for 6 months and that was great. I highly recommend it because it provides the physical therapy through gentle controlled stretching and it also is great for your mental health.

    I highly recommend that you read as must as you can about RSD to help you fully understand this disorder. It is a very complex disorder that affects you in more ways than just pain. Dr. Hooshmand site (rsdrx.com) has some of the best information on the full effects. My doctors never warned me about the depression, fuzzy thinking or even the insomnia. It is very important you understand what can happen so you are not misdiagnosed or symptoms are not dismissed. And, I highly recommend that you read as must as you can about RSD to protect yourself from the medical community and others. Doctors and others have very little training and often can be our worst enemy. I carry information in my purse from RSDS.org to give to people to read, since it is very difficult to explain RSD to most people. They also have a hospital protocol sheet that I have given to all my doctors.

    I recommend starting a PHR (personal health record). I get copies of everything to keep in my records and share the information with all my doctors. This way my PM does not have to order any blood work because Primary takes care of that. And sometimes reports are not sent in a timely fashion. I had gallbladder surgery in March, I saw my Primary in April and she didn't have any of the reports from the surgeon.

    My last piece of advice is to join a forum, it can be a lifesaver. There are times when you need someone that really understands to listen to you and reassure you that you aren't crazy.
    Reta


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