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Reflex Sympathetic Dystrophy (RSD) (CRPS) Message Board


Reflex Sympathetic Dystrophy (RSD) (CRPS) Board Index


I've never really officially introduced myself, but here's my story: I'm a 31 y/o female. I was dx'd with RSD earlier this year by my PM doc, 20 minutes into the consult, he said you have RSD. my internist ref'd me to him because she thought maybe it's fibromyalgia. Bless her heart, I don't know how many times I've gone to her in "crisis mode", crying, anxiety/panic attacks, flare ups getting worse by the day because it's been 4 days since I've slept. She's like go see him, I personally trust him and maybe he might know. of course, the longer I go w/out sleep, the more heightened the pain is. I have RSD in both my legs.
Had a car accident in 10/03. Herniated 2 discs l3-s1. Tried everything under sun conservative tx. symptoms in legs kept getting worse, so I had to go on medical leave. I was never able to return to work! 31 and disabled:mad:

04/2005 I had my first discectomy. complete disc collapse 12 days later. never fathomed in a million years that pain could get any worse. 04/2008 I had to have a bilat laminectomy, discectomy, dynamic stabilization at L5-S1 with 4 pretty pedicle screws. doc said mechanical back pain, no disc space left, with bones basically grinding with each other. I can hear/feel it. notice 3 years diff btwn surgeries! I was scared to death of 2nd surg. with good reason, 1st surg was small [I]minimally invasive[/I]. ;) I swear they say minimally invasive to sugar coat the surg, where they get to use body shop tools as they slice open your spine!!

anyway I'm still in pain, neurosurg and PM doc both agree it's RSD. The only pain surg relieved is the pain that shoot down the leg when I lean to the right. from the waist down, it's just a torture chamber. I hate docs who act so incredulous and insulted when you tell them you're still in pain, like how dare you say their tx isn't working, that if they can't treat you, then nothing's really wrong with you. I hate that look they give me when I'm describing these off the wall sensations that no person in their right frame of mind could even make up.

my legs burn, they freeze, swell, get numb, heavy, weak, tingle, my knees buckle from beneath me. the hypersensitivity, where a blanket, clothes, or a brush of cold air makes the skin on my legs ache. every step feels like the flesh is tearing away from the bone, and at the same time getting zillions of electrical zaps. the pain is electrical, my legs buzz/hum/scream with pain/with an electrical current running thru them. I'm getting the bruising.

I hate that docs don't realize that pain doesn't just effect us physically, but mentally, emotionally, spiritually. it's drains you in every aspect. I've been seeing a neuropsychologist, he's great. he's helping me "cope". at my last appt, I was in crisis mode because despite 2 surgs, tons of meds, conservative tx, my level of my has only increased. Oct 4 was the five year mark of my accident and the pain is still here:( I've been feeling like I'm in mourning. sounds weird but, mourning over the life I had, my life now, my future. things I used to be able to do, and won't be able to. My body dictating my daily schedule. I have to accept that I have RSD, now. I cried so much in his office, I mean one of those body shaking cries, let it out. I'm officially a basket case because my neuropsychologist broke down crying with me! a touch of humanity, a doc who could relate. he cried with me because he understood what I was going thru because he confessed to me he went thru the "grieving" phase, too recently because he found out he has inoperable brain cancer, only his fam knew. :(

Just when you think you're having a bad day, they're always someone who has it [I]way [/I] worse. I'm trying really hard to cope, but some days the pain just really breaks me.

I'm sooooo grateful for this board, I've never even heard of RSD until I was dx'd with it. but, 1st time I read about it online, my eyes were welling up because of the realization that I truly had it. the pain wasn't in my head & I wasn't crazy. I'm sooo sorry for the long post, but finding this community is a Godsend, just having a place to vent where everyone can relate to what I'm going thru. thanks for allowing me to vent, I hope everyone have a blessed weekend, and a pain-free as possible one, too:)





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