Hello All! this is my first post so here I go....
So grateful for this site and find people like myself to talk to. Have been waiting a while but could use some support...
January 2014 I was n a MVA. Originally told all was fine and dandy at the ER just some whiplash. I was having slight pain in the neck but progressively worse pain in my elbow. 2 fingers are numb and very much sensitivity down my dominant arm and hand. I couldn't use the arm. So, 5 weeks later an MRI showed my neck had multiple fractures therefore pinching the nerve (was put in a soft collar- although the dr said at that point it almost had no point). In June I had a cervical discectomy and fusion that was supposed to relieve pain. It did release it but the nerve is permanently damaged. From the moment I woke up in the surgery room I was in agony. Pain increased unbelievably and just got worse, My neurosurgeon recognized that it was most likely CRPS. Had 2 EMG's both showed negative. Anyways, I went through 2 steroid injections, 2 stellate gaglion nerve blocks, a 1 lead stimulator trial none of which proved any relief. I was doubled checked to see If any bone chips were left after surgery laying on the nerve but came up negative.
This disease is crazy to me. It exacerbated or created almost every health problem I have. It is unreal.
Prior to the accident I had heart problems but like I said the MVA did more damage. I have inappropriate sinus tachycardia along with orthostatic hypotension. Meaning, my heart rate flies when I stand and my BP drops. My BP is low to begin with, so each day I pass out, many multiple times a day. Alongside that I get seizures. When walking down the hall if I go down the stairs in the house (there are 2 decent sized windows) I will immediately pass out from the bright light. I wear sunglasses day and night- down to the shower or writing this now. Lights off, in my bed. The concern is if I hit my arm with the RSD I immediately pass out as well. if I lightly bump my elbow against anything i'm out cold from 1 minute to 15 minutes. Then, I wake up I cant move at all. My mother has quit her job because i'm a flight risk 24/7. She will run to crush up my morphine and I keep taking it while I lay still. I am unable to move my body for hours/a day at a time. It is extremely sensitive to the cold many of you know, so I always have 2 big fuzzy socks on it and these certain sleeves
(all must be loose) at all times with a blanket and jacket draped over again very loose. Always have a heater in the shower next to my arm. I do have to say I am incredibly blessed my L UE can handle some touch of the blankets .As many do, I have to be careful or the blankets will get too heavy easily. I have one of those sort of [life alert buttons] that calls people and texts them my location when I punch it (used some ribbon-makes a very stylish necklace I must say...LOL). My electrophysiologist has switched so many meds and doses to find try creating a perfect concoction for me but no such luck, We have only achieved med combo that give me a few seconds to lay on the floor( I can tell the syncope is coming). She has sent me to so many specialists for opinions but nothing. RSD totally blew these issues up.
Also due to the narcotics I take for pain I get awful dry mouth and dry eyes. My pupils are 2x as big as normal eyes, dry 2x as fast, and don't make tears. I take Restasis and 2 other sets of eye drops a day. The dry eyes bad headaches and as I mentioned, sun sensitivity This is hard because it ties also to my connective tissue disease (swelling causing no tear production). The tissues in my body swell creating - !. loose tissue damaging rolled ankle with over 2x expected healing time already{from October} connective tissue is a lovely addition to Nonspecific Autoimmune disorder I won. My Rheumatologist sent me to an endocrinologist in regards to adrenal insufficiency. My drs. are looking for a root disease tieing many problems together but so such luck yet. I am "medical mystery"; Id be willing to bet some of you on here have gotten that from your dr.'s too.
Relearning to write with my opposite hand has been a huge help. Again, I took a fall and from the strain of only using one hand I developed carpal tunnel. Got a Kenalog injection for it, and was allergic. Went to PT, each week was worse It would swell, go numb, and hurt so bad I couldn't take care of myself so i had to stop. They wanted to do surgery but with the risk of RSD spreading cant make it an option.
I also suffer from depression. I take megs doses of multiple antidepressants which help but I have found it hard to watch the world go by while I am unable to work and be in school for over a year now. I am not even able to wash my hair without the help of my mother. At 20 years old I am praying this isn't the "prime of my life". I take 72 pills a day. I am very blessed to live in Philly with many good doctors because I get almost all side effects of all medication, so I am sick a lot of the time. I have motion sickness pretty intensely so I cant travel far to see dr.s so being in philly is great. I do see doctors at least 2x each week ip to everyday as most of you may do too. My narcotics knock me out and I am unable to exercise with my asthma and a fall/syncope. On the slow road to recovery from 2 swollen, bruised ankles. I am so thankful for the people who love me and support me which gets me through the days but as you ALL know. its difficult for us out here just living day to day.I would love any stories/feedback you are willing to give if you read my "complaining fest" I apologize to gripe at you all.. Thanks fpr your time
Leggies
One question for some of you all- after I undergo this 2nd stimulator trial and IF I get bad results again, does anyone have feedback from the ketamine treatment? all I am aware of is I think it isn't approved by insurance. My pain management said he wouldn't recommend it, and I herd from one person who had it that it was awful side effects but still curious.is it a week straight or just like 5 hrs a day for the week? Any input I will take! thanks!