Reflex Sympathetic Dystrophy (RSD and CRPS) Reflex Sympathetic Dystrophy (Complex Regional Pain Syndromes Type I) and Causalgia (Complex Regional Pain Syndromes Type II)(RSD and CRPS)


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Old 10-21-2007, 01:01 AM #1
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Default a really bad day

IE got out of the hospital about 3 hous ago. I spent the last couple of days in three different areas in the hospital. The ER , where I spent 8 hours while they poked and proded me, came up with a number of uncomfortable ideas. Lab results were drawn and sent to the lab, a CATSCAN and a MRI and an EMG. Multiple pain patches were slapped softly onto my chest for pain control

After 8 hours I was taken upstairs and checkedinto the ICU where I was fortunate enough to get far to many tubes attached. After two days and a night I tried to do the I am healthy can go home now thing they just werent bying. they sent me to pt to makewas going to be strong enough for walking.
During my time in the hospital the doctors did at least figure out what was wrong with me. my phase II abs isnt working so I will have to due the whole surgery over again.
totally bummed and just to rub it in my step backwards from having fun it is snowing alot tonight. I was really looking forward to going up the hill a few times in a mono.
I cant believe I have to replace a unit i was told would never break. the snow is just messing with me, the same way it will mess with everyone who is counting snow depth. looking at the snow falling is when everyone around here starts to get excited to ski, unfortunately it will take a few more flurries before the season really gets going
thanks for letting me vent
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Old 10-21-2007, 01:08 AM #2
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Hey there WG
Gosh, I am so sorry to hear that you were in the hospital!! I hate them myself!! poking and prodding is no fun at all!!! Oh my! You have to have the whole surgery again?!! I am so sorry!! Now, snow on top of everything??!! I wish you nothing but the best WG and I will keep you in my prayers. ~Love, Desi
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Old 10-21-2007, 01:23 AM #3
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i think today was a good sign that things will be ok. the last time i went into the hospital with pain they put two pain patches on me the morning they sent me home. the problem there happened hours after i was home sleeping in my bed, when my mom came to check on me when she came home from work and i was blue and brathing 3 times a minute. rabdomyalisis caused by internal organs effected by crps. so i gues the positive this time was i survived my return to my bed without complications.

yeah i am bummed about the snow mostly because the doc said it would be 2 years before i was able to snowboard with ny cervicle one. that would have been jan 1st now it will be nov/dec + 2years
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rsd following a botched epideral for knee surgery 1993
remission from 99-2003 shoulder dislocation 2003
CRPS Type 2 scs (cervicle 2005) (lumbar 2007)
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Old 10-21-2007, 06:35 AM #4
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Wakegirl,

You poor thing- How did you get Rhabdomyolysis? You must have been so sick.
Did you require dialysis?
Had you used the patches that the hospital applied to you before? That is serious respiratory depression. My mum would have not handled that well, you were lucky she found you when she did.
Hope all is well now
Tayla
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Old 10-21-2007, 06:45 AM #5
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Sending you some pain free hugs and prayers, honey. I hope things are improving, keep hanging in there!!
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Old 10-21-2007, 07:12 AM #6
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I am so sorry about that, it must have been terrible. I hope you are feeling better now.
Pain free hugs
Alison
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Old 10-21-2007, 07:13 AM #7
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I really hope that you are feeling better soon babe - sounds like you have been through a really hard time. It sucks to have to redo the stim!! Boarding sounds like fun!! and it sucks not to be able to do it grrrr. This whole RSD thing really sucks.

I guess there's not much I can say - I know it sucks, you know it sucks - but I just wanted to send some commiserations and hope that things improve abit now and I'm glad the drs found out what was wrong even if it does mean having to have the stim redone - will they be able to do it quickly (I'm English so in the NHS emergency = 3/4 months).

Loads of love and hope you feel better soon

Frogga xxxxxxx
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Old 10-21-2007, 05:47 PM #8
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Default a better day...my rabdo story

i had to go and have my labs drawn again this am...all is good saw the ct/mri tech who i apparently yelled at, my bad, she said they took my med alert dog tag off in the er so she had no idea i couldnt have an mri. i refused to get in the tube and she didnt know why, i guess i wasnt as gorked as they thought...she tried to put me in the tube, i yelled and then went into the ct room and climbed onto the table and fell asleep. apparently the er doc was not happy but the tech told him something was up...they looked at my ct films and finally got it
the rabdo...i had one patch at a time before but that time they were so concerned about my pain levels and letting me leave the hospital, i am not a good patient i get bored quickly so they thought 2 patches slapped on and dilaudid, mscontin, valium, and a bunch of other meds would be ok. so i left the hospital at 2000 hrs and promptly went to bed. the following morning my mom checked on me, told me my meds and some food were ready in the kitchen and went to work. she called all day and i never picked up. she was finally able to leave work (she is an iv sedation/recovery room nurse at the surgery center). when she came into my room i was lying on my bed (in the exact same position she had left me in) and i was blue. while she was waiting for the ambulance she checked my vitals (low bp and 3-4 resps/min). in the ambulance they gave me narcan and i improved a bit. i was in the er for a few hours then moved to the icu under the care of the trauma surgeons team. i guess the good thing about everything to that point was the fact that i worked as an emt for the ambi service and in the er for a few years so i knew all of the techs/nurses/docs and they all knew me so they knew my medical history. it didnt hurt that my mom was the SO of the CEO of the hospital at the time. anyway so the first concern was whether i had accidently ODed on the oral meds i had been given, all knowing mom brought all of the containers with her. after multiple people counted all of them it became clear that i hadnt taken anything. for about 24hrs they couldnt figure out what was going on with me, then in a random moment of consciousness i complained about my legs feeling tingly. my mom had worked in an icu with a lot of elderly patients when she first got her degree and remembered that patients with rabdo exhibited the same symptoms so she talked to the doc. they were already flooding my system with fluids because of multiple system failures but the doc ordered a more percise lab series and the results showed that i had rabdo. i was in the icu for 2 weeks and in pcu for another week. in that time i coded twice, my kidneys failed and i was put on dialysis and i gained 70 pounds in fluid retention (5'3 100 to 170). the doc actually wrote an article about it because i was one of the few patients who was 1)young 29 at the time 2)no previous major health issues (not counting the crps of course and 3)was on a pillow matress instead of a hard floor surface.
the trauma doc called docs all over the country and none of them had ever encountered a patient whose crps had resulted in total system failure. in the end the DX was something to the effect of the crps had moved into my internal organs. as random as it sounds the same dystonia that is common in extremities was in my organs. because movement was restricted the meds in the duragesic patches didnt flow through my blood stream, it sat in the organs and as a result the meds were at a toxic level. the only reason i am alive today is because even though the trauma doc didnt know what was wrong he ordered unusual labs and was able to treat me effectively. whenever one of my docs describes it to another physician who is knew to treating me they say it is total body crps (as opposed to full body that implies that all extremities are involved).
i think i have been a medical anomilly from age 9 (dislocated knee in a kid who wasnt a gymnist) so the rabdo was just another chapter in the book. i brushed it off pretty quickly and actually had my stim trial and implant within a month of my release from the hospital. my mom on the other hand was totally freaked, it was nice that we live in a small town so everyone (nurses and docs) came and hung out in my room so she didnt have to focus on me lying unconscious in the bed attached to lots of tubes.
oh well i do love the go big or go home moniker
i think to some degree or another there will always be new chapters added to the book of CRPS
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rsd following a botched epideral for knee surgery 1993
remission from 99-2003 shoulder dislocation 2003
CRPS Type 2 scs (cervicle 2005) (lumbar 2007)
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Old 10-21-2007, 06:08 PM #9
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Default i have to admit

i have never heard of Rhabdomyolysis and had to look it up........
my you have been through hell and back..............
thank goodness your doc treated you so quickly.........
big gentle hugs to you......hope you start to feel better soon......
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