Hey everyone, I'm Amy - I'm not sure the whole process on introductions first, or how this works...but I was glad to find a community where we all are in pain, and can truly relate.
I have RSD in my right foot, from a cut that needed stitches. I have had depression for half of my life (i'm 28, so around 14) and have quite the history of self injury - which led to this terrible condition - since then - May 2013 - I have abstained from any of that. But I still see my Psychiatrist, etc etc.
Anyway, so that was a fun way to get RSD..CRPS...whatever you want to call it now
I was on 210mgs of oxycodone at one point (yes...from a new PCP, not a pain dr) It went from 10 mgs to 210 mgs a day in about 5 months.
I went to a pain doctor, who got me off of all medication, and nerve blocks worked. Then they stopped working, and he did a nerve ablation - this actually helped my foot, but started lower back pain around the injection site.
2 months later, I was out driving around 11:30 pm to clear my head...June 1, 2014...I'd had a miscarriage and this was my due date, would have had a one year old. I just wanted to drive and listen to music.
I was turning left, had a green turn arrow, and some guy literally came out of nowhere and almost dead on t-boned me - fortunately he missed by a foot or so, or I probably would be dead. Airbags deployed, it was terrifying and then excruciating.
Luckily (kindof) When the police asked me what happened before the ambulance arrived, I was bawling and just choked out that I had a green arrow. The guy then said he wasn't paying attention.
I was taken to the ER, where as many of us with chronic pain know is a terrible place to be - the dr there gave me a percocet and did a ct and xray, wouldn't give me a script (my visits with RSD pretty much ruined that) Then sent me home. Everything was normal.
My PCP at the time was the one who had me on all of the oxy - he had since stopped prescribing pain meds altogether because the encounter with me scared him so much. So he told me to just go to the hospital. Literally, he sent me to the ER about 5 times. Fed up and the ERs finally said no more, I got a new PCP and found my wonderful pain dr I have now.
SO now I am in PT 2-3 times a week...where they are starting to push me too hard...my medication (50mcg Fent patch, 10mg Perc, 30 a month) are really just keeping me at my threshold - if that. It is so painful to do ANYTHING - and even though these exercises I used to be able to do without thought - it just hurts so much!
I had an MRI and we were able to compare to a prior when they were diagnosing the RSD - it is 'Beautiful'. GREAT!
So I'm 28 driving around with a handicap sign, and my MRI is fine - I'd kill to be able to have surgery to fix whatever is going on with my lower back - but, no dice.
I've heard of these PET scans. Has anyone had them and found something that wasn't on the MRI?
I also have to switch to Kaiser since my Cobra runs out in April - so I won't have my great doctor...I'm so scared about that. I really want to have kids sometime soon (a significant other would help) but, i'm running out of time.
Also, with my medication being so baseline effective, and this wonderful Colorado weather killing me - I'm afraid of what's next at Kaiser. My PM Dr doesn't want to touch my back with a needle because of nerve overstimulation or overactivity or something.
Long story long....
What have you all done when everything is normal, but YOU aren't?