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Reflex Sympathetic Dystrophy (RSD) (CRPS) Message Board

  • Newly diagnosed and in severe pain

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    Old 07-30-2018, 06:42 PM   #1
    Many meows
    Join Date: Jul 2018
    Posts: 1
    Many meows HB User
    Newly diagnosed and in severe pain

    Hi everyone!
    In February I fell out of an elevator that didn't land level with the floor. Didn't sustain horrible injuries and was so grateful that I didn't tear the ACL or meniscus, until the flames came that is. Within a month I started to feel like my left lower leg was in a fire pit. I couldn't stand anything touching the leg and I felt like I was walking on hot broken glass even when I wasn't walking. I was lucky to get 2 hours of sleep a night. I also had a sensation like hot bugs were running through the area. Then I got spasms and cramps that would go on forever and were so extreme that you could see my leg move. The swelling made the leg 2 inches wider than the other leg. The color change was pretty severe. I would also feel like my leg was being crushed or tied with a very tight tourniquet. Sometimes I felt like someone was trying to pull up a tight elastic sock that was crushing my toes. Even though the leg felt like it was on fire on the inside to the touch it was cold. Well after going to 2 physiatrists, 2 neurologists, a pain management doctor, a vascular doctor, 2 orthopedists I was diagnosed with this horrendous RSD.

    I'm in pain every single day every minute of the day. The leg is constantly on fire and has a crushing, pulling deep throbbing all the time. It started on the lower leg but I recently started getting the same feeling and cramping in my thigh. I'm on 1800 of gabapentin, 150mgs of trazadone, 10mgs diazepam, cyclobenzaprine and I mind as well take M & Ms because they would do the same thing. All of the Drs recommended the lumbar sympathetic nerve blocks.

    I have researched the blocks and it seems that they aren't very successful and I am scared to do them because of the pain and side effects. HHas anyone chosen the nerve blocks and how did they work? I am scared and the constant pain is really starting to get to me I'm so tired but can't sleep and there are days where every step is excruciating. I've read where people go into remission, how? I don't know how I'm going to deal with this for the rest of my life. I'm 48 and feel like my life is basically over since I'm using whatever energy I have to work as much as possible because I need the money and I don't do much else because I'm in too much pain and too tired. Any tips or tricks on dealing with the misery that comes with this disease?

    Last edited by Administrator; 07-30-2018 at 07:30 PM.

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    Old 10-29-2018, 01:54 PM   #2
    Join Date: Oct 2018
    Posts: 5
    CFSsister HB User
    Re: Newly diagnosed and in severe pain


    My sister was diagnosed with RSD when she was in high school after a mistake in surgery. She had to go away for 2 months to a pain clinic to learn how not to scream at every moment of the day. It makes me super sad just to think about anyone going through that pain, let alone my sister. She eventually did learn how to not scream, and she turned to working out. The thing that helps her pain the most is rigorous and thoughtful exercise.

    I am very sorry you are going through this and hope you find relief soon.

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