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Reflex Sympathetic Dystrophy (RSD) (CRPS) Message Board

Reflex Sympathetic Dystrophy (RSD) (CRPS) Board Index

I've had RSD for 16 almost 17 yrs. I've had two term pregnancies during that period of time. I'm holding on my lap right now my youngest son, one of twins. And I gotta say I'm not super woman, and I'm not here to brag. But I am here to say that If I can do it, so can you.

On November 4, 1992 my co-workers found out I'm claustrophobic (severely). They were angry because I'd found a better job, more money, insurance etc. So they had the chance to get even with me, by locking me in a room that measured 6 feet by 8 feet at the exact moment the store announced it was closing. I freaked out. To the best I can remember, and has been told me, I tore the door down football tackle style. Pulling several 2+ inch long screws out of a two by four. I got out. I went to the office, as it hurt to breath. My supervisor was off. Was instructed if I went to the ER that I'd have to pay. I cried my way thru the night. Talked to my boss in the morning, and left without pay by noon. Went to the ER, and they xray'ed my shoulder/neck area. They decided it was muscle strain. Let me go to work on light duty. Then they changed their minds and took me out for 4 days. I made it thru the next three weeks with little to no movement in my shoulder arm and neck. Back and forth to dr's offices, and muscle relaxants, and tylenol #3. My hand swelled immediately after the "accident" and turned the prettiest shades of purple, and icey cold. Now I know what that was. Then I questioned it. The first mentions of RSD were within 3 weeks. I started physical therapy. No help. In March I saw my first pain clinic dr, for a stellate ganglion block. Man that was magic. I had total relief for about 3 weeks. I had three more, the last didn't work. I still think he missed. I ended up seeing a pain management specialist (much different than a pain clinic dr). He drugged me up on morphine and dilaudid, then percacet. He ordered a 3 phase bone scan. Not only was that positive for my right arm/shoulder, but it was also showing signs of the left arm/hand being affected. I went into a huge depression. Course dr's kept trying antidepressants and they all did nothing, but make me sleep. Well, years later, after having many tests, pills and IME's (worker's comp) I found myself pregnant. I had to quit taking my medications for my child's health. I managed to get off the 60 mgs of MS Contin three times a day, and the percacet too. I went 12 weeks with NOTHING for pain. The hormones of pregnancy were so kind to me. During that 12 week break, my pain dr retired. So I had no one but my primary care phsyician, a physical therapist and now had a referral to a friends orthopedic surgeon. I'd had mri's of my shoulder before, for this same ortho. They knew I had a small rotator cuff tear. But something kept popping. One day it happened in front of my ortho. He'd ordered a special MRI right after I had my son. Six months after my son was born, I had rotator cuff repair surgery, as well as a complete shoulder reconstruction, as it had been constantly dislocating for now 6 yrs. Surgery was a nightmare. I hurt so bad, nothing was touching it. I had a new block dr. And he was wonderful. I still miss him, as he's relocated now. He would do IV lidocaine blocks every 2 weeks. I was on oxycontin during this period of time. I had something for breakthru. I don't remember what. After a period of time he too left. Moving to florida. I'd had a few car accidents during this period of time, and herniated several discs in my back. I ended up having a lumbar fusion at the L5-S1 level, thru my belly. I decided that the pills weren't working well during that recovery. I had tons of time to lay there and think about it. I remembered that pregnancy was a life saver for me years ago. And I wanted another child. So I started praying for that. Just when I gave up with dr's telling me I'd need fertility drugs, I get pregnant with twins. Again I gave up most all my pain meds. I had dilaudid to take, but only took it when I absolutely couldn't take anymore. I got thru the entire pregnancy with probably 180 pills. That's 20 a month. I had been taking 240 a month. So not even a months supply. I had the twins at 38 weeks and 3 days. Naturally conceived fraternal twins, both boys. One born healthy, the other in critical condition. He nearly died. My drs then were hesitant to give me anything more than the dilaudid I'd been on. So I went back to getting my iv lidocaine blocks. Once a month. Not enough, but it keeps the beast at a dull roar. I take cymbalta. I take dilaudid (i'm allergic to anything with tylenol in it, and shouldn't take aspirin because of my lapband for weight loss). I take an acid reducer for my stomach. I take flexeril when I absolutely need for spasms, which have gotten tons better. And I take ambien for sleep. I do suffer from chronic insomnia. Without the ambien I'd be up night and day for 3 or 4 days without a nap, or sleeping even for 5 minutes. Now I get about 4 or 5 good hours. I'm a single mom of my three sons. They know mommy has OUchies. They know mommy has bad days. But for the most part, I'm just mommy to them. I walk. I talk. I cook, and I clean. Some days are better, and more "normal" like for us. Today has been a good day. Tomorrow may or may not be. Stress affects me, as does weather changes.

Nice to meet ya'll.


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