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Thread: Something that is becoming infuriating.

  1. #1

    Something that is becoming infuriating.

    So like a lot of people with spinal cord injury I have chronic constant nerve pain and, I manage that quite well. But on top of that unlike most spinal cord injuries I also have frequent uncontrollable autonomic dysreflexia and extremely violent and constant spasticity and reactionary spasms (yes both). This is a daily thing, and all of it continued to progressively get worse the more chronic my injury becomes for whatever reason.

    So the last year has been real bad every time I do bowel care, or if the slightest little bit of urine comes out of the penis, and in fact for reasons we can't identify as of yet and (even if I fart although it's pretty minor and quick AD) I go severely dysreflexia my blood pressure goes from a usual low of 90/60 to anywhere around 200/110. Of course my spasticity goes absolutely ballistic when this happens, as most of us know dysreflexia is also quite painful especially when it lasts for a couple hours you get really agitated ( considering how apparently life-threatening it is and how often I go through it I'd say I handle it pretty well, but sometimes I get real ugly) but the spasticity doesn't need dysreflexia to be bad some days they're just relentless for any number of reasons. Despite them being so bad I've done everything in my power to tough them out and stay away from the medication as not only do these meds in the recovery they also ruined eligibility for clinical trials. But they've gotten so violent and so bad that I have to strap my legs down to my wheelchair and I have to wear metal braces in bed anyways two months ago they caused very bad bedsores on my legs seven or eight stage twos maybe one or two being stage III's. So desperate times call for desperate measures I'm now on 80 mg of baclofen and 10 mg soon to be 15 mg of diazpam of course I feel like shit all the time, I feel tired their side effects and it's been a while since I started the dosage. And although there's been a definite reduction the spasms are still very bad, I still sweat profusely at random and go dysreflexia throughout the day. Anyways to my main point

    Sometimes when I'm dripping sweat, nerve pain coursing through my body especially my feet, spasms throwing me around in my bed and dysreflexia causing all kinds of awful; I get really agitated, I swear I skip mannerisms and just make demands to hopefully help the situation, I yell etc. Lately caregivers whether they are parents, CCAC, hospital staff etc. have been saying things like "calm down" "there's no need to swear", "Stop" etc this is becoming beyond infuriating!! I make it perfectly clear that I'm not swearing at them, I'm yelling and swearing in frustration and/or agony plain and simple. But they still whining bitch about The words I'm saying and the volume of my voice ( after well over a year of this, I can't help but wish that my problems could be so trivial).

    Today during my bandage change, the spasms were really giving me a go my bed was literally vibrating. Anyways every now and then I was saying "fuck" or "for god sakes", so my mom for whatever reason is all flustered and anytime I swear takes it personal as if I'm swearing at her and doesn't realize I'm just yelling in agony but the CCAC nurse sees what's happening and goes "there's no need to swear "all calmly. So I'm literally having a seizure throughout my entire body hands, legs, stomach etc. clenching my teeth and I say as politely as possible "this ever happened to you" her response "I have had leg cramps" *mic drop* Somebody get the fucking violin!

  2. #2
    Just a funny story to emphasize. I was at the spinal rehab centre of Toronto and getting my bed so I just checked and this was my second visit there. Anyways we told them that my spasms were horrific and they go yeah, OK, that's too bad etc. anyways in order for them to do the change on our first visit we know what we have to do in order to make that possible , I have to go on my side call my legs up as if I'm sitting in a chair put a pillow behind my back and a pillow in between my knees and have my mother hold my legs down. For whatever reason I spasm much less in this position. So they just do what they have to do and get the bandages done, the doctor makes comments on my "reactionary spasms" basically every time he touched my legs would jump and says that we need to get these sores done and you need to wear better boots to address your drop foot blah blah blah medication won't help reactionary spasms, keep in mind my spasms are completely different when I'm in this position.

    So we go in a second time and my mom decides that she's not going to help she's going to let them see firsthand and leave me in a normal position so they can see the spasms for what they are. Both of the nurses were speechless, anytime they even tried to touch The bandages my legs would go absolutely ape shit they physically could not hold them down, they were wiping sweat off their forehead you could hear them sighing and moaning, they called the doctor in and he was just perplexed and started going on about how oh my God this is severe spasticity I can't even get your legs open (completely changed his "diagnosis" he made from the last time I was in) i'm trying to explain what they have to do the position they have to get me in in order for it to be possible to change the bandages etc. the nurses are getting extremely frustrated and discouraged when it was finally done and it was time for us to go there attitudes were completely different they couldn't believe it. Anyways it was at that point that it was pull out all the stops and get me on a lot of drugs, that have managed to do maybe a 20% reduction which is a lot given the severity.

    Basically these people see tons of people with spinal cord injuries every day and everybody has a sob story and over exaggerates. The whole pain scale is so ridiculous most people just automatically go eight or 10 (despite the fact that logically a 10 would mean you were in an ambulance screaming in anguish basically thinking you were on the verge of death and if you weren't just blowing smoke would more than likely require serious medical intervention) so when they hear how my spasms are really bad, my pain is terrible their responses oh OK basically it's not taken seriously and rightfully so. It is a problem tho.

  3. #3
    James. I get where you are coming from. I am an incomplete but have bone breaking spasms and nerve pain .. 10 where I lose my bladder, vomit and lay in piss and puke screaming til my throat bleeds. Episodes that unnerve my pain docs and neurologists. I don't know your attitude pre and post episodes how you treat folks, caregivers. I know they don't get it, but maybe your "well" attitude is also harsh. I'm not being critical, again, I do get it.

    I've worked very hard on my attitude, including what I say during my extreme episodes.

    worth a thought. I wish you peace. -ket

  4. #4
    James and ket, It doesn't help, but I wanted to say how sorry I am that you're having such severe, off the charts episodes of AD, spasms and pain.
    I hope there will soon be new safe and effective treatments to stop or greatly reduce these responses to SCI. I hope your doctors and nurses will be more
    compassionate and willing to listen and actually hear you in the future. those prejudgemental attitudes that many of us have encountered only serve to amplify the pain and feelings of anger and despair. I hope that you two and everyone on CC with chronic severe episodes of pain, AD and spasms will find effective reliable relief and kindness from care providers very soon.

  5. #5
    Quote Originally Posted by ketamine kitty View Post
    James. I get where you are coming from. I am an incomplete but have bone breaking spasms and nerve pain .. 10 where I lose my bladder, vomit and lay in piss and puke screaming til my throat bleeds. Episodes that unnerve my pain docs and neurologists. I don't know your attitude pre and post episodes how you treat folks, caregivers. I know they don't get it, but maybe your "well" attitude is also harsh. I'm not being critical, again, I do get it.

    I've worked very hard on my attitude, including what I say during my extreme episodes.

    worth a thought. I wish you peace. -ket
    Oh course you want to conduct yourself as best as possible, I mean at least with my Andrea sensually I am completely leaching to these people for life; remember my place basically. But when it is a constant, 24 seven every day thing head to toe for different things at once a few sweating, dysreflexia, nerve pain and severe violent spasticity you can get me really fucking agitated mostly because there's nothing I can do about it, I can't get myself down onto the floor and start doing stretches, even in my bed I can't do anything besides a shoulder stretch, I can't go for a walk even pace, can't use the stress ball, can't even cleanse my fist there's just literally no viable relief or outlet which only exasperates not only the frustration and pain but also the humiliation and entrapment of it ! I literally just start feeling disgusted in my capabilities or should I say lack there of. Just a helpless victim who couldn't even scratches his own ass let alone scratch his ankle.

    I confided in reading, used to be a lot of research now I've gotten a little more political, debating looking into history, investing brief economics all on my own leisure. But my best efforts are just to simply remain silent stagnant and calm. My body goes crazy and I drip sweat, potential he go dysreflexia etc. but that's the best approach it's not very welcoming but I don't give a fuck I'm not about making friends right now.

    In terms of the idea that a calm and positive attitude will alleviate my symptoms, that is simple hogwash. If it was as simple and based on the individual I am could just flip a switch and be perfectly fine in my condition didn't care about the daily protocol and scheduling of pathetically insignificant tasks and undignified procedures then yes it could add a better outlook, more peace, happiness and yes it could even help loosen the body, and there is even a slight evidence that it can help with nerve pain through forms of meditation more so but it is as anecdotal and conflicting as medical marijuana. I tried both, and an Impeccable diet (I think if healthy people were to actually see the difference of no sugar, very little wheat and get all the nutrients vitamin A to zinc, fatty acid's etc. They'd realize it's almost impossible to be depressed the body just functions amazingly better mentally and physically) and of course there are anecdotal stories that a more positive kind and calm attitude "helped" people with their spasms well they come in all shapes and sizes I can guarantee that is never happened with severe chart topping spasticity resistant to all antispasmodics. We are talking spasms capable of ripping flash literally and breaking bones with The help of osteoporosis eventually.

    I would have never got one, because it exasperates spinal atrophy and again would ruin future treatment and their efficiency from everything I've seen, but I recently found out I'm uneligible for the baclofen pump. Because of my bedsores and because of the cyst on my spinal cord as he said; my physiatrist.

    All and all it just really bothers me when people talk out of their ass, about something they can't remotely comprehend.

  6. #6
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    I had to be persistent to get a baclofen pump. My physio came with me to appointments with my spinal doctor to convince him I needed one. The pump has changed my life. For some reason it seemed to decrease my nerve pain too. I do find that the more anxiety I have the worse my spasms get.

  7. #7
    I have been sweating this week a lot too. I know the cause is hemorrhoids for me. It's been a really shitty week though. It's a constant agitation. My spasms are really bad too, but I've been on 80 mg of baclofen for years now. I want to get a baclofen pump, but I've got a wound and they won't let me get one because of that.

    I know what it's like to be dysreflexia prone. It seems like some people aren't as bad as others, but I'm pretty much like you. It took me years to figure this out, but if your dysreflexia gets really bad you can take a hydrocodone and a nefedipin. It GREATLY helps with the dysreflexia, but the hydrocodone makes me super nauseous so I hate taking it.
    I was injured 2 weeks after my 16th birthday on June 14th, 2004. My level of injury is C5 complete, but I can move my wrist.

    My screen name comes from the movie The Eternal Sunshine of the Spotless Mind

  8. #8
    My doctor prescribed Gabapentin for my intense sweating. My pants would be so wet I could not even do transfers without using the bezzy board. They thought it might be part of menopause for me and I could not take any hormones. My sweating was so bad that uses slept on a towel which made changing my bed easier. Much easier to change towels instead of my sheets. I still keep the towel on for that reason.

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