Join Date: Jun 2013
Long Road to a Diagnosis
Not sure how often this is read but getting it out will probably make me feel a bit better. I haven't read any stories similar to mine, but that's a very very good thing as it involves a high amount of trauma!
I'm 24 years old now,with a CRPS Type 1 diagnosis, but my journey with chronic pain started 7 years ago. Just two weeks after turning 18, I was shot outside my school (once through the right buttock and once through the right forearm). I was very, very lucky that the only injuries I had were soft tissue.
My lower limb injury was very easy to take care of, required a wheelchair for a little while, and healed quite nicely. My forearm wound was a different story. Doctors in the ER were amazed that the bullet had gone through my bones cleanly, no break or injury to ulnar or radial nerves (which I was told was miraculous considering they tend to get damaged even during planned surgeries, just hard to avoid I guess...). The healing time was fairly quick, and that's when the problems started. We discovered I have a natural resistance to painkillers of any kind (thanks mom!) and finding adequate pain relief during the healing period was a nightmare, with frequent trips to the ER (it is very difficult to get a GP where I live, hadn't had one since I was 9) to adjust strength and kinds of meds. I ended up taking A LOT of dilaudid during healing time, plus the IV morphine while waiting on doctors in the ER.
One night, about 2 months after my injuries had healed and I had started daily physio and occupational therapy for my arm/hand, I was in massive amounts of pain, so my mother rushed me to the ER (45min away) where I was told I no longer needed the pain meds as I was healed up and couldn't possibly be in as much pain as I said I was. I begged the staff to do something to help my pain. They scheduled an EMG (very painful and showed no nerve damage), gave me Lyrica (which I had to stop taking as it made me violently ill) and they sent a requested that I be seen at the pain center. Ok, great, somebody will help me with sort this out....wrong! The pain center's number is not given out or posted anywhere, so I had no way to contact them as I waited months and months and months(turns out their waiting list is YEARS long)....eventually calming the pain down through physio and being able to get on with my life.
So, after a year of not being able to work or go to school, I finally had some relief and function back and was feeling really good. I would get flares once or twice a month, but work was understanding and my school load wasn't too heavy so I could handle it. I tried anti-inflammatories for these, but nothing seemed to really help. My grandfather suggested I try Aleve, as it helped him with his arthritis. I gave it a shot and had a horrible reaction to it, itchy eyes and throat, swollen lips, purple patches on my face and neck...not pretty. The flares happened rarely enough that I generally forgot about them and was able to function properly.
Cut to 5 years later, I'm working full-time as a waitress in a very popular, family-owned restaurant in the downtown area. It's the middle of a very busy lunch shift, I pick up a plate and feel a *POP* in my right forearm followed by an intense burning into my fingers. I barely made it to the table before the plate fell out of my hand. I went to urgent care clinic and the doctor there diagnosed me with tendonitis and wanted me to take naproxen (big no-no). I told him I would have a bad allergic reaction to which he replied "They all say that". Who "they" were I didn't know. He also sent an urgent request to the pain center.
So, after 5 years a trip to the ER for pain...turns out they had flagged me as drug seeking(ah, those "they") years before so I wasn't getting any help from them in the relief department. The doctor there did mention RSD to me, said he didn't know much about it but based on my history he figured it was a good thing to pursue. So he sent along an urgent request to the pain center. I had finally found a family doctor and saw him a month after my *POP* episode. During this time my hand had swelled, would turn purple when cold and read/mottled when hot, I had no strength, constant burning, and couldn't move my hand or fingers. I was very fortunate to get a great, young doctor who stuck with the RSD suspicion and sent TWO urgent requests to the pain center, got me started on Cymbalta(had to stop taking, the brain zaps were too much for me and I felt like I was on crack for the 6 months I took it), Elavil for sleep, and followed up with every two weeks to see how eveything was going and help me with my victims comp stuff. He also scheduled me for another EMG, again very painful but showing no nerve damage, the neurologist was also very rude and kept telling me to "suck it up".
3 months later I finally got a call from the pain center and they agree to see me right before christmas. I was so happy because I just kept hearing how much they would be able help me and get the pain down to at least a manageable level. So I show up at 8am bright eyed and bushy tailed for my appointment...they proceed to rush me through assessments for function,got ANOTHER EMG (same thing, no nerve damage), evaluated my medical histrory, set up an interview with the psychologist, I got blood and allergy test...the whole nine yards. At the end of the day I was exhausted and scared ( I had gone on my own) and they decided I needed a sympathetic nerve block immediately. Between exhaustion and fear of yet another electrified needle being stuck into me(they don't use ultrasound guidance or sedation) I cried and screamed bloody murder the first time the needle touched my nerve. They couldn't complete the procedure because I was too distraught so I was sent home with a Valium prescription and an appointment for later that week. I had no idea that they were going base my entire treatment around that one incident.
So I got the block and it was ineffective(had my mother come with me) and had a meeting with the doctor and psychologist where I was given sleeping pills and an appointment for the next month. Trouble started immediately because they had booked me in at 8:30am again...I was having terrible sleeping problems and was worried I wouldn't be able to make it, but they insisted it had to be then so I complied. Well....the sleeping pills made me unable to wake up on time and I ended up being very late (I called it in) because of trouble waking up and having to use public transit in a snowstorm. I was upset that I was late, that I was expected to make my way through a huge storm (the cold is terrible for my pain), and the "early" time didn't help. The psychologist said I didn't seem the same, I let my mouth run and said "Gee, I can't imagine why!"...mistake #1. The doctor than prescribed a lidocain cream and I had to fight for half an hour with her to get a check on the non-medicinal ingredients...mistake#2 (I'm highly allergic to aloe so spreading it over an already painful area would not have helped), and was ordered into the group therapy at the center.
Now, no offense to the older patients, but everyone at the the group was old enough to be my grandparent. I did not feel comfortable being the only young person there(and not on narcotics or an explanation for the source of my pain). I needed to know how to navigate school, work, and burgeoning relationships and they were talking about retirement, their grandchildren, and getting their children to help them out a little more. Being told how young I was and didn't look like I was in that much pain cemented my discomfort. I told the doctor and psychologist as much....mistake #3...and they accused me of being non-compliant and combative (I had offered to do one-on-one therapy or look for other groups on my own and have the people running them contact the clinic, but they wanted none of it) and released me from treatment!
So on to Gabapentin (1800mg/day) but that made my mind fuzzy and I would forget words or not understand things I read, and an osteoporosis drug that ate away the lining of my stomach....so we up my Elavil to 100mg throughout the day. My doctor left last December and was replaced by yet another wonderful and understanding man. Now my CRPS has spread all the way up my arm, into my shoulder and neck with terrible muscle spasms, after trying Flexeril, we moved on to Baclofen and it is working well along with gentle physio on my neck and shoulder. My care team here is great but I will moving to another province soon, already have a chance at a very innovative pain program for people who haven't gotten relief from narcotics or other pain centers and they seem like nice, caring people.
So 7 years after standing on a sidewalk minding my own business....I'm unable to work or go to school because of pain and my limited function. I can't tie my shoes or cut my own food. I don't own a bra that has to b.e manually done up and am unable to keep plans as flares get worse and last longer. At 24 it makes me feel foolish that I can't take care of myself by myself, but I am lucky to be surrounded by understanding family, friends, and medical professionals. I know this was long but I have been so frustrated by the whole experience and the countless doctors who have treated me poorly because of my condition when I am not at the clinic/ER for anything related to it (I have migraines and very bad asthma as well as CRPS). Thank you for reading my story and I have been touched by all of yours and how supportive everyone is of each other.