Post by acrobatinmydreams on May 17, 2015 14:19:01 GMT -8
jeff1967, I get it. Not being able to concentrate is the worst thing for me too.
It could be scar tissue causing the interruption of nerve signals. I have been to so many places looking for answers only to get the same ones too. Pain really effects quality of life. Without a job there is more time to focus on the pain but what else can you do?
The stimulator has worked with some people so don't give up hope too quick.
My biggest fear is getting to the point where I can't stand it anymore and being told there is nothing else that can be done. I have limited taking medicine for that reason.
Plus finding a doctor that is experienced with 25+ spinal cord injuries is hard. They don't know a lot about how the aging process affects us. There just haven't been enough studies on it. But they have discovered that the body releases huge amounts of hormones when the brain or spinal cord is injured. The cells go into "fight or flight" mode and that essentially ages us. One of my doctors said this several years ago. So essentially when you had your SCI, your body aged 10 years in that few minutes.
When I took Anatomy and Physiology in college, I was really interested in how the injury effects the cells etc.
Here is some good toilet reading lol But it explains the process well.
I will at least do the trial on the stimulator. It will take some time because my insurance company will make me go through every other option again.
My new doctor put me on morphine which hasn't done much the first three days on it. I've gotten to the point that I have no energy to do anything. I am constantly tired and I HATE that. I really want to overcome that aspect of it.
I really hate the thought of giving up but I'm am running of options. I've spent the past two days without pants on so nothing will touch my legs. Not sure my male co-workers would appreciate that lol.
I went 18 years without taking meds but the past year has been a totally different life for me. I have a high tolerance for pain but this is pushing my limits. My wife just worries all the time and feels helpless. That bothers me that she has to deal with it as well. Very grateful I have her by my side but always hated people worrying over me.
acrobatinmydreams,i don't take nerve pain meds or baclofen for the same reason. My consultant said that it would relax the muscles too much which would affect the upright mobility that I have.
jeff1967,im sure that the stimulator is a very hopeful prospect for you, I and im sure everyone, is going to be looking forward to hearing your progress with it!
I will at least do the trial on the stimulator. It will take some time because my insurance company will make me go through every other option again.
My new doctor put me on morphine which hasn't done much the first three days on it. I've gotten to the point that I have no energy to do anything. I am constantly tired and I HATE that. I really want to overcome that aspect of it.
I really hate the thought of giving up but I'm am running of options. I've spent the past two days without pants on so nothing will touch my legs. Not sure my male co-workers would appreciate that lol.
I went 18 years without taking meds but the past year has been a totally different life for me. I have a high tolerance for pain but this is pushing my limits. My wife just worries all the time and feels helpless. That bothers me that she has to deal with it as well. Very grateful I have her by my side but always hated people worrying over me.
jeff1967, Wow!!!! You are almost writing my book if I were to write one. Mine started at 15 years and I went downhill pain wise after that. Its the reason I can't have braces that touch certain areas and I wear shorts most year round or I don't go when my legs are raging. Socks are some days excruciatingly painful. I can pinpoint nothing that triggers it except barometric pressure but I can have days where it almost doesn't bother me at all. I know its there but it is not raging.
I just got out of a deep depression and it took 3 years from late 2010 to early 2014. It started when I quit my job in 2010 because of the burning pain. It causes the fatigue.
I have really found nothing except upping anti depressants (Cymbalta) that helps. It does not help alleviate the pain but it does make most days manageable except when we are in periods of rain/storms. Narcotics even Morphine won't help what you are feeling in your legs. It will dull your other senses so you can deal with it though. But in high doses the opiates make me angry and I don't want to be that person. I also don't want to be dependent like a drunk on alcohol.
I feel for you and I can understand your wife's worry. I just don't want people worrying because there is nothing they can do. One of the reasons I chose to be back in Colorado as opposed to in NC with my daughter. I don't want her to be able to read my face. I stay home from my friends on those days because they can read my face. I have never been a good liar anyway. Plus I don't want to worry my family, I just have to live with it. It is hard to need to talk to someone but having no one who really understands the intensity.
I think you might be in the same place in life as me. It is so hard to realize that you just can't be the person you have been. I worked raised my daughter by myself and we were very active. There is so much I want to do but pain limits it.
When I was describing my legs to my current psychiatrist (It was suggested by Craig Hospital that I needed one), he had no words.
I would encourage you to be your own "strong advocate". You live in a state that is fighting a drug war worst than others. So don't give up. My recent experiences with pain management have been less than desirable and the last downright patronizing to the point I would not go back.
My biggest problem in recent months has been the feeling of "being trapped". I was trapped in the car overnight in my accident but this "being trapped" is more related to a body I can't control. The anxiety with that is bad. Doctors don't want us addicted but yet they don't know that feeling that never goes away.
I have never been one to "let it out" the way I have here. I always thought it was a sign of weakness on my part and knew that people just don't understand and think I am looking for sympathy. As I told my doctor, I am looking for relief!!! I don't care what form it comes in I just want relief.
I am not sure where I would be without my Cymbalta right now. It has definitely kept me from going over the deep end along with having a wife that truly cares.
The morphine has eased some of the aches/pains but nothing has been any help on the neuro which is getting worse by the day. I told my boss to please double check all of my work for a while because I am not myself which I HATE. I also told them to not be surprised if they walk in my office and I am sitting here with my shoes, braces, and sock off so I can try and make it through the day. Of course they are supper cool about it which is a benefit for me.
I hate that you and others are going through this as well. It just seems so damn unfair. On top of all of the other issues that we deal with on a daily basis we have to through excruciating pain on top of it. When we ask for relief they act as if we are going straight to the "hood" and peddling them or going home and going comatose for a few days. If it isn't that they treat us like we are making up this pain. The nurse backed down a little when I told her that I wish she had to deal with this for one week. She would change her attitude about "my needs" real quick.
Hang in there and I am going to do the same. I am not giving up and will pass along any and all info I can get that does or does not help. Also, great link and if Florida ever gets on board I will put that on my list of treatments as well.
I finally have an appointment for a podiatrist, i wonder what wisdom they will come up with for my feet.I am slightly hopeful but not very...I'm expecting the usual ' we arent specialized to deal with Spinal Cord Injury'
I finally have an appointment for a podiatrist, i wonder what wisdom they will come up with for my feet.I am slightly hopeful but not very...I'm expecting the usual ' we aren't specialized to deal with Spinal Cord Injury'
I hope they give you some answers! I finally got my MRI done and have an appointment with pain management on Thursday. I am not expecting much out of them either but we can always hope.
,i don't take nerve pain meds or baclofen for the same reason. My consultant said that it would relax the muscles too much which would affect the upright mobility that I have
Sometimes pain meds give us much needed relief so our bodies can rest and natural healing can occur. About Baclofen, a limited dose will allow some spasticity (stiffness) to remain, which can be utilized for upright time. I take only 10mg twice daily, and my walking is enhanced because the intermittent spasms are lessened to point where I do not have to fight them, and "larger" spasticity with AFOs gives me ability to stand.
jeff1967 and acrobatinmydreams, I really feel for both of you and admire how you are coping the best you can. It is NOT weakness to admit the emotional burden that severe and continual pain brings to life. I, too, withdraw when I am unable to do more than rock (literally) with pain--don't want others to worry about me. Your endorsement of Cymbalta makes me want to try that. I fear that finding nothing to really help will make me more frustrated, as in "nothing left to try". I am not taking pain meds on regular schedule, but do take Tramadol when I simply must zone out--fortunately, this has not been often. When I stopped Baclofen, my pain was much worse, and found that I needed the small dose I take to balance spasticity of stiff and "shocking" types. R-alpha lipoic acid (300mg twice daily) takes the edge off of my neuro pain without any negative side effects. Gabapentin helped a bit, but the brain fog was intolerable on top of what cognitive dysfunction my disease brings, so I stopped it. I have found nothing that helps the hypersensitivity except being naked in a dry, moderate temp, and not drafty room! Might help if I could float around in weightless environment, not touching any sensitive parts?! I can't imagine getting insurance to cover that, LOL. Sort of a hyperbaric chamber type treatment for old SCIs...!
Thanks for the kind words. My biggest worry is how it has started to effect my job. I have a sit down job but with this pain it hurts regardless of what I am doing. The Norco makes it bearable most of the time. The morphine put me in the worst fog I have ever been in so I stopped that after one week. I don't know if the Cymbalta is helping a lot with the neuro pain but it has definitely, 100% helped with my mental state. It isn't the cheapest out there but I am ok with that as long as it is working for me. Tramadol is not supposed to be taken with Cymbalta but I had to once or twice and didn't have any ill effects. Tramadol just didn't phase my pain and the Gapapentin wasn't any help either. The Gapapentin messed with my sleep. I was unknowingly getting out of bed and falling or just falling out of bed altogether.
Maybe we can find a place that will let us just float around naked and get some relief together LOL. It wouldn't be a pretty sight for the others so I better spare people the pain LOL.
Hang in there and hopefully we will all find peace soon. Back to pain mgmt today to find out some MRI results so hopefully I will have something to share later today.
Thanks for the kind words. My biggest worry is how it has started to effect my job. I have a sit down job but with this pain it hurts regardless of what I am doing. The Norco makes it bearable most of the time. The morphine put me in the worst fog I have ever been in so I stopped that after one week. I don't know if the Cymbalta is helping a lot with the neuro pain but it has definitely, 100% helped with my mental state. It isn't the cheapest out there but I am ok with that as long as it is working for me. Tramadol is not supposed to be taken with Cymbalta but I had to once or twice and didn't have any ill effects. Tramadol just didn't phase my pain and the Gapapentin wasn't any help either. The Gapapentin messed with my sleep. I was unknowingly getting out of bed and falling or just falling out of bed altogether.
Maybe we can find a place that will let us just float around naked and get some relief together LOL. It wouldn't be a pretty sight for the others so I better spare people the pain LOL.
Hang in there and hopefully we will all find peace soon. Back to pain mgmt today to find out some MRI results so hopefully I will have something to share later today.
Job stuff is my greatest concern, too. I will not be able to afford to move to accessible housing if I cannot maintain my income, and I cannot stay where I am indefinitely. No laundry, shower, flush toilet, and steps into house. Chair doesn't fit through doors without disassembly. So I must be able to work at something, but pain and fatigue are really hurting my quality of work and ability to meet schedule.
I fantasize about the "floating" relief!!! When I cannot sit or stand or lie comfortably, I don't know what to do to get a break from pain. Please let us know how it went today for you.
Well I don't know if I am any better off after my appointment today but here is what I was told. It appears that my lower back is full of arthritis (not a huge surprise), I have bulging disc at L4-L5 (injury was at L1-L2), sciatica AND arachnoiditis. I gave me a refill on my Norco and Soma and they want to do an epidural next month. I am leery of this as I have never had it done before. She said that I shouldn't worry because she will not be going into the spinal cord or near my injury site. Other than that she once again said how lucky I am (sure not feeling lucky) and that other than pain meds and the epidural there isn't much else that can be done and it will get progressively worse.
Any input of any kind would be greatly appreciated.
jeff1967, firstly I think i would get more advise and information on the epidural. Can you ask these question, maybe contact their office via email?
Where exactly is it going to be going, at what precise area? What are the side effects/risks with the epidural? Can the epidural have any effect on the vertebrae in the lumbar region as this will potentially cause more problems with the discs?
I would be asking the questions above but also I would be wanting to know how bad those discs are bulging and what management you need to be implement to reduce the potential of deterioration within the bones.
The more pressure put on them, the more they will bulge which can lead to more spinal compression. Does your upright mobility need to be monitored? Those discs there that you have bulging are the biggest in the spine so can lead to significant problems.
She could tell that I wasn't very receptive to the idea of the epidural. She seemed very confident that all would be fine but I am the one that ultimately pays the price if it isn't all fine. I am definitely going to get more information before they gouge a huge needle in my back.
I am also going to find a neurologist/neurosurgeon for a second opinion.
My upright mobility seems to still be fine. Of course I am the guy that went 18 years without having an MRI or even seeing a doctor regarding my SCI so some of this may have been prevented if I wasn't so hard headed. Since getting my Phat Braces I don't use my cane near as often. Since my right leg was badly injured at the same time as my back, and the right leg being shorter, could I be putting some added stress to my lower back area without realizing it?
I am a pretty active guy but have a tendency to overdo it. Should I scale back on strenuous activities? Should I finally give in and stop riding the motorcycle? The bike weighs 650-700 lbs but I only lift it off the kickstand so that shouldn't be causing any problems. However could the riding position or something else be causing stress to my lower back that could be speeding up the deterioration? I know these are silly questions but I am only 47 years old and hope that I have several years left and I want to reduce the aches and pains as much as possible.