Sorry I havent posted for awhile. I had to turn in my work laptop since Im laid off and I will be getting a new one next week. I decided to go ahead and post from my phone in the meantime. Im two weeks post-op from my spinal cord stimulator surgery. I will go into detail about what the surgery was like, how I got to this point and what recovery in the first couple of days was like at another time when I have a keyboard to type with. For now just wanted to check in and say that the surgery was a success! Already at 70-80% pain relief and with the re-programming coming up in a few weeks Im expecting it to get even better! My leg feels better than it has in years! It still has sensations from time to time and some burning pain in my foot but even if the re-programming cant cover that I feel pretty good about getting off my medications. The pain went from being all-consuming and debilitating to more of an uncomfortable or slightly annoying feeling from time to time. Anyone that has CRPS knows how huge that is! I can live with this, can exercise, take walks, work, play with my daughter, enjoy life again with this 😊 im so glad I tool the risk to get it done. I just cant wait to be healed and off restrictions so i can have a second chance at life again!!!!
Tried to go to graduation. Im on the high school faculty so I should be there/would like to see the students graduate that I work with. Drove about 10 minutes and burst into tears. My foot felt like glass was being thrown at it!!! I have little tolerance for that sensation. It hurts like a mofo. Now I feel bad that Im at home. I feel like Im disabled. I am disabled….there I said it….and Im sick and tired of killing myself to pretend otherwise!!!!! It just makes it worse. No one around me understands what life feels like. Im exhausted. I feel like I could sleep for a month and still be tired. When will this end 😓
~Fox News released this article about a year ago… I’m glad to know that we’re finally getting noticed.~
“Reflex Sympathetic Dystrophy
Type of Disease: Nerve disorder
Crazy Because: Causes searing pain as if on fire
Cure: Complex; disease may spontaneously resolve, but treatment usually…
The hardest thing that I’ve had to deal with is accepting the fact that this non-fatal neurological condition is progressive and without hope of cure.
(It’s not as dour as you think.)
My brain just doesn’t seem to work correctly anymore. I can’t think straight. I keep making weird mistakes that I normally would never make. I keep setting things down and forgetting where they are. Sometimes I feel like I’m losing it!!! I’m an intelligent, educated person, where has my mind gone? I wonder if other people with CRPS feel like this? Is it that the disease is effecting my brain on a neurological level or just simply being in soooooooo much pain everyday is making my brain foggy? I’m sure the medication doesn’t help. I really hope after this surgery I can get off all the medications I am on! The past few days while transitioning from Vicodin (I was on that during the scs trial) back to Tramadol my heart has been all fluttery and I’m feeling shaky. Haven’t been sleeping so well. I wasn’t on Vikes for very long so I know its not withdrawals. I feel like my body has just been through a roller coaster of medications lately and is starting to fight back. It really didn’t help that they forced me onto Suboxone 2 months ago and messed me all up before the trial. Sometimes I honestly worry about being one of those people who suddenly have a heart attack or something while on one of these drugs. They make me nervous. It especially irritates me when doctors act like I’m a drug addict seeing how I feel about being on medications. If I could stop taking them all tomorrow that would make me happier than anything!!!! I’m really hoping I don’t need them any longer after the surgery. Maybe I will get my mind back?
Ever since I had the Spinal Cord stimulator trial taken out I am fucking miserable! I’m not sure if the pain is legitimately worse or if my pain tolerance is screwed up after having a few days of almost no leg pain. I usually only take 4-6 tramadol a day. Well, now I’m on 2 Vicodins plus 4-5 tramadols a day and just barely able to function. I had to drive down to the park right down the street because I couldn’t stand the walk to the park :( This surgery can’t come soon enough. I’m worried about being able to take care of the lil one while recovering but what choice do I have. I hope it chills out enough to get the things done I need to before the surgery. I will be laid up at least 2 months so the car needs to be cleaned, oil change, tires rotated. House needs to be cleaned up, re-organize and clean the kitchen, get rid of some of the junk in the basement that I won’t be able to get to. Need to make sure all my bills and other annoying life stuff plus all my medical appointments are all in order, just don’t see how I’m going to get it all done with work this week, vacation the next then right into the surgery. At least I found time to schedule a vacation beforehand. If not I wouldn’t be able to do anything this summer. Going to St. Louis to the City Museum for a week. I hear there are a lot of cool things to do there for kids. I hope I can get an appointment with my rheumatologist in time to get more Dilaudid. I don’t think I’m going to be able to do much without it. The Vicodin is barely touching it and my miracle drug Tramadol just isn’t getting to the pain like it did before the trial. Wish I had a Segway, lol.
For some reason the anxiety is just eating away at me today! Nervous about my insurance changing due to being laid off. Will they say its a pre-existing condition? How is it even legal in this country to say you won’t cover someone because its pre-existing, that doesn’t even make sense. For all I know it will be fine but worrying about what the hell I’m going to do for work next year, if I’m even able to work and what I’m going to do for insurance is not helping. At least my surgery is scheduled now. June 22nd, also nervous about that but hopefully it helps as much as the trial. My leg hurts so bad after they took the trial out, its been ridiculous. I had to take a Vicodin at 3:00 in the morning just to get back to sleep and my tramadol has done nothing. Finally ended up taking a dilaudid which helped but I only have 3 left. Gonna call the doc to get more, not sure if they are going to want an appointment, I hope not. I can’t keep running to 3 or 4 doc appointments a week! Been trying to get ahold of my sleep doctor all week to set up an appointment since my machine started suffocating me about 3 weeks ago. About 3 minutes in my nose gets so stuffed up that I can’t breathe. I wish I hadn’t even gotten the diagnosis for the sleep apnea. Who has time to deal with sleep apnea when you already have CRPS. I know if I got it corrected it would probably help with pain but I wear a TENS machine or soon to be a Spinal cord stimulator with a remote all day then I strap on a Darth Vader mask when I go to sleep. Eff my life!!! If my leg doesnt chill out I’m not going to make it to work for the last week of school. Ugggghhhhhhhh….why has it taken so long and had to get to this point to start getting ANY help!!!! I swear the medical community doesn’t understand CRPS or doesn’t care that are lives are crap. At least I have a good doc right now, if my new insurance lets me keep going to him that is…..
I started this blog to shed some light on a disease that is unknown to most and misunderstood by many who do know about it. I have a chronic, progressive pain disease called RSD (Reflex Sympathetic Dystrophy) or CRPS (Complex Regional Pain Syndrome). I will get around to “trying” to explain how I ended up with this condition in later posts, Its very difficult to explain, even I’m not sure how exactly this started.
Basically I find myself in a position of constant daily pain, not just annoying pain or discomfort but burning, tearing, throbbing, stabbing, beat your head against the wall pain. It is threatening to put me out on disability, has taken away more activities than I would like to admit and is driving me batty!!! I’m still amazed that when I look down on my leg it looks all innocent like nothing is wrong with it. It often feels like all the flesh has been torn off, has been soaked in kerosene and set on fire and should be bleeding profusely.
After nearly 6 years of being told that it was “all in my head” and “I don’t know how to help you” by over a dozen specialists I finally found some good doctors who could actually help me. I finally have hope for the future and have found something that controls the pain.
I had a spinal cord stimulator trial put in last Friday. I was very nervous about the procedure and was petrified of having the disease spread but I’m at the point that I will try just about anything to control the pain. I awoke from the anesthesia and immediately could tell that my back was in horrible pain. Even with constant doses of strong pain medications it was extremely painful. Even through the pain I was happier than I have been in the past 6 years! My leg felt “normal”. The strange rotting sensation was gone. Throbbing, burning, stabbing pain was gone. I exclaimed to the nurse that my leg felt amazing but she laughed and said I was on a ton of pain meds. I knew better though, no amount of pain medications make my leg feel the same as the “normal” leg.
I got home excited about trying out the SCS (spinal cord stimulator). The doctor told me to push myself so I decided to go to my mom’s house to keep me moving. It was a long drive with my back being so sore but I made it. I tried to push myself but was limited by my back. During the trial you have large cords and a plastic box taped up to your skin. My skin was irritated and I was in a lot of pain but my leg was miraculously better! 80-90% better! I stopped limping, regained a normal gait and could sleep on my left side which I hadn’t done in over 2 years due to the pain!
The trial was a bigger success than anyone anticipated. I’m so happy to finally have hope again. I find myself with the trial over trying to get the surgery scheduled. My stomach has been flip flopping all day due to the pain and rotting sensation coming back. My tolerance to the pain seems to have dropped significantly after having 4 days of almost no pain. My back is feeling much better though so I’m trying to focus on that. Waiting for a call back to schedule the permanent surgery. I was told I was tentatively on the schedule for later this month and now that date has been filled. I’m trying not to be frustrated but they only do surgeries once a month and my insurance coverage is up in the air since I was recently laid off. I was assured by scheduling that they would get me in and not to worry about it but its hard not being able to plan out my summer yet. I’m going to need lots of extra help and have family waiting for a definite date so they can come down to help. I need to figure out daycare for the days I don’t have family help and my poor husband wants to take an extended weekend vacation sometime this summer but with my surgery up in the air I don’t think that is going to happen. Just crossing my fingers for a call back soon so I can hopefully put this nightmare behind me….