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Reflex Sympathetic Dystrophy (RSD) (CRPS) Message Board

I am back! But still in pain!


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Old 09-17-2014, 09:34 AM   #1
spyder708
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Lightbulb I am back! But still in pain!

It has been a few years since I have posted on healthboards. To make a truly long story short, I have had 6 spinal surgeries in the past 25 years or so. The last back surgery was a spinal fusion of the L4-L5/S1 with all the titanium screws, rods and pins. When I woke from that surgery (2006) my left leg felt as if it were on fire, my right arm and hand were completely numb to the point that I really had no physical control. The numbness in my arm began to slowly come back to normal, but my leg never has. In fact the pain in my left leg is so extreme at times that anything that slightly brushes against it, the pain is excruciating! My back pain has never gotten better, in fact its only gotten worse. For the past 8 years, my life has been nothing but pain, depression, anxiety and stress. I know that I am not alone, but during these past several years I have become basically a recluse. I take Morphine, Percocet, Valium, Ambian, gabbabenton (which I had to stop taking as it was causing major tremors and nausea), Cymbalta and just recently prescribed Colindine to help me attempt to cut back on the narcotics. I had been taking 600mg of morphine (2 100mg x 3) and Percocet (2 10/325mg x 3) plus all the other meds. I have been able to cut that amount in half, but not without much difficulty. I feel like a walking zombie most of the time, I cant travel very far because sitting upright in a vehicle can sometimes feel incredibly like torture. I have difficulty sleeping (Ambien), I can not sleep in a normal bed, and haven't been in one since my last hospital stay. I practically live my days in my recliner trying to find some comfortable position so that I may relax enough to possibly fall asleep. Depression is likely the biggest hurdle I have yet to clear. As the days, weeks, months and years fly by, my pain is only increasing and there is nothing that I haven't tried via medical science, to alleviate at least some of the pain to no avail. I had the stimulator surgically implanted in 2007 and it did help, for a short time. after traveling 250 miles one way in order to have a technician "adjust" the settings on the stimulator on several occasions, I decided that the stimulator was obviously not going to work as it was supposed to. The last time I tried to use the stimulator, the result was an instant, painful, back spasms. I was told by the surgeon that performed the fusion that I should have had the L3 fused as well, but he decided that he would wait and see how this fusion went first? anyway, I have decided that I will never have another back surgery again. Every surgery I have had has only ended in causing more pain and more nerve damage. I was told a few years back that I likely had (RSD) due to the burning leg pain, swelling, complete hair loss on my left leg and the discoloration of my left foot. Now the diagnoses has been determined as the pain has now spread to my right leg. I noticed a few years back that my right leg was feeling different. There was numbness, tingling and some burning but nothing compared to the pain I was dealing with daily from my left leg. But the pain has become much worse, the burning is becoming constant and my leg just feels like it doesn't belong to me, like its some kind of prosthetic that causes pain. My Dr. has informed me that stress and depression can cause the pain to increase significantly. I have yet to find a way to not be depressed. I am now totally disabled (have been since 2006) and now live in Washington State after moving from Kansas (I figured moving away from Kansas would relieve a great deal of stress and depression ), But that was not the case. It has come to the point that if someone asks me me "How I am feeling?" I simply respond "Doing fine". I find it much simpler then telling people that I am in constant pain, most people really dont want to hear about it and I do not blame them, I am really tired of explaining why I am in pain. I used to feel like I had to tell them my medical history as I did not want people to think that I am just being lazy and "faking it to get disability". I understand that there are those that do "fake it". I am not one of those people, I loved my job, I had a wonderful job that I miss horribly and nobody ever fought as hard as I did to keep my job, but it wasn't up to me. In fact I did not even know I had been "released from employment" until my son called me while I was recuperating from my fusion surgery to tell me that my position had been filled. I was devastated. I called my boss at his home and asked him flat out if I had been replaced, he said he had know idea what I was talking about. But that was not the case. I was then informed the next day that they (my employer, the Kansas Department of Corrections) was notified that I would be unable to physically perform my duties so they had no choice but to replace me. When I asked why I was not informed, I was told that because I filled out a long term disability application, the application was approved and therefore it was I that made the decision to leave my job. However, I was informed by the Human resources manager that I had to complete the "Long term disability application because of the 6 to 12 months that the Surgeon had said would take for the fusion to completely heal. So I filled it out, never thinking for a minute that I was basically resigning from my job, because I wasn't!. I had communicated to my employer from the time I knew that I had to have the surgery of the time it would take to recover. I was told that my job would be there waiting for me when I recovered. I was so relieved as I had worked for the Dept. Of Corrections for 10 years, was promoted to LT after working there 4 years and then Promoted to Disciplinary Administrator. I had an office, and 2 staff that worked for me. I loved my job and worked extremely hard to get it. I was also a firearms instructor, a member of the SORT Team, a member of the Hostage Negotiation Team, worked as a recruiter for the Department of Corrections... I did it all, and I did it because I loved the job. But then I lost it all. Now I live in pain, the prognosis of this syndrome in this stage isn't too promising as far as having a productive, happy future. I already have a electric wheelchair that I refuse to use, but know inside that eventually I will by riding it if I wish to leave my home. Sorry for making this long story so long. I needed to vent a bit and I will stop for now as the pain is increasing and I need to move. Thanks for allowing me to vent a little, it seems to help.

 
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Old 09-17-2014, 10:00 AM   #2
TURTLEGREEN
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Re: I am back! But still in pain!

Welcome back. I'm new here and have had rsd for almost four years after breaking my wrist. It's been a very painful journey but it helps to have support like here. I'm sorry you have rsd and have suffered so much too but hope it helps to know that I'm here if you ever need to vent again or just want to talk. Thanks for sharing your story. I can't type too much but will check in again later to see how you are. Take care.

 
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Old 09-18-2014, 09:52 AM   #3
spyder708
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Re: I am back! But still in pain!

Thanks for you kind remarks, and I am truly sorry you too have been diagnosed with RSD. I had never heard of RSD until about 5 years ago when I was first initially diagnosed as a "high probability" of having it, and later confirmed. I have not been able to determine just exactly when I contracted RSD because i had so many injuries and surgeries prior to the diagnoses. My best guess is my fusion surgery, as it was then that I first started noticing pain in parts of my body that had nothing to do with my surgery. My right arm and right leg never bothered me until after the surgery. and now the pain in my right leg is just as great as my left. It sometimes feels as if my legs are not mine? Like they are not even real? Its a weird feeling, but something my Dr. says is common? I hope you dont mind me asking, but what kind of pain relief meds have you tried and is there any particular one that you would recommend? Not that I dont trust my Dr. hasn't tried everything at his disposal, its just sometimes even Drs. are not aware of every medication that might be available. Like I said, I have tried everything thats been offered (up to a point, I am not wealthy), and still willing to try anything else that might help with the pain. I will stop for now. I hope that your day goes well and pain free. Thanks for listening. Take care.

 
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Old 09-21-2014, 07:41 AM   #4
TURTLEGREEN
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Re: I am back! But still in pain!

Hi Spyder.
I hope you're feeling better today. It's getting colder here so my rsd pain is flaring really bad and have had to have my meds increased because of it. My PM dr prescribes neurontin and perc for the rsd pain and my psychiatrist prescribes xanax and zoloft for my depression and anxiety because of my constant rsd pain. I also take advil for pain and imflammation. My PM dr also prescribes voltaren gel for my wrist for pain. These meds make me nauseas but help me manage the pain and depression that rsd constantly causes me. I hope you have a dr who can help you manage your pain better too. If he can't then maybe there is another dr out there who can. I hope that you feel better soon. Take care my friend.

 
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Old 09-21-2014, 07:42 AM   #5
TURTLEGREEN
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Re: I am back! But still in pain!

Hi Spyder.
I hope you're feeling better today. It's getting colder here so my rsd pain is flaring really bad and have had to have my meds increased because of it. My PM dr prescribes neurontin and perc for the rsd pain and my psychiatrist prescribes xanax and zoloft for my depression and anxiety because of my constant rsd pain. I also take advil for pain and imflammation. My PM dr also prescribes voltaren gel for my wrist for pain. These meds make me nauseas but help me manage the pain and depression that rsd constantly causes me. I hope you have a dr who can help you manage your pain better too. If he can't then maybe there is another dr out there who can. I hope that you feel better soon. Take care my friend.

 
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