The Pain in My Paralyzed Legs

For the first time in over 470 days, I am not taking any medications. After spending such a long time setting mental alarms to take pills, it feels strange to have gone even a few days without taking any at all. I imagine this medication-free period will be somewhat short-lived being as I already have a new medication in my cupboard just waiting for me to finally decide to take it. However, I wanted to acknowledge this strange journey through medications that I’ve found myself on and shed some light on the invisible ailments that cause me to seek out relief.

It is pretty much a sure thing that suffering a traumatic injury leads to taking medications of one kind or another. Initially there were a lot of meds for pain management. This may come as a surprise but breaking your spine and a couple of ribs is a really painful exercise. And apparently when you break said spine and are no longer walking around, your risk of blood clots increases. I combatted this for a few months by injecting myself with a blood thinner twice a day. Even though I couldn’t feel the injection in my thigh (another ‘para-perk’), I never got used to stabbing myself with those little needles and was pretty relieved when I was allowed to stop. I have been on medications to try and help with bladder control which was essentially useless. Botox has worked so much better (as I detailed here and here in my posts on bladder control). There have been pills to try and regulate bowel function and antibiotics for various infections. But all of these medications have come and gone.

My longest running medication that I recently decided to quit was for something called neuropathic pain. And the medication I have on deck is for spasticity in my muscles. Most recently, these two issues have been incredibly frustrating and exhausting.

Neuropathic Pain

I get a lot of strange reactions when people hear me say that my legs are hurting or bothering me in some way. I definitely understand the confusion. Before my injury I would have been confused too as I assumed that being paralyzed meant that you feel absolutely nothing. Most days I wish that this were the case as the residual sensations below my level of injury are far more annoying than feeling nothing at all.

A few weeks after my accident is when I started to develop a burning sensation around my lower abdomen and hips – something like a thick belt tightening around my mid-section. As time has gone on the burning has progressed down my legs and into my feet. At best it is tingly and I can mostly ignore it. At worst it is burning and has, on a few occasions, brought me to tears. And, like most annoying things in life, it gets more intense for me with PMS; that means my neuropathic pain is set to high for at least one week every month. As if I needed another reason to hate my period.

What’s really odd about neuropathic pain is that it makes me think I have feeling below my injury when I don’t. I can feel the burning sensation below my bellybutton and I can see my legs – my brain just puts it together (albeit incorrectly). But when I touch or rub the area that hurts, there is no relief. There isn’t even a small sense that the area I’m touching and the area that is hurting are the same one. And while I would swear that my legs are actually on fire some days, if I close my eyes and someone moves them around, I could guess all day long but 99% of the time I have no idea where my legs are – only that they are hurting.

For this lovely post SCI symptom, I was prescribed medication. I was on it for over a year and I thought that it helped. However, when I gained 25lbs without explanation, I decided to discontinue the meds. I was incredibly nervous to come off of them as I couldn’t imagine having to cope with more invisible burning pain in extremities that I cannot actually feel. After two weeks of decreasing my dosage, I have been off of the medication entirely for 4 days and I have to say that the pain has only increased slightly and is as tolerable off the meds as it was on them. It’s unfortunate that I took medication that appears wasn’t doing a whole heck of a lot except increasing the number on the scale. But I’ll take that over having to turn around and go right back on it because the pain is so much worse.

Which brings me to the medication sitting in my cupboard. It’s been sitting there for over a month because I really didn’t want to go on a second medication unless I was desperate. About two weeks ago I realized I was desperate and with one medication out of the picture, I can attempt this new one for spasticity.

Spasticity

I may get strange reactions when I say my legs hurt, but the reactions I get when my legs start to move are quite hilarious. I remember the first time my father-in-law saw my toe move. He was super excited for abut 5 seconds until I told him ever so gently that it was just a muscle spasm. Cue disappointment.

For at least six months after my accident my legs barely moved at all. Throughout the rehabilitation process I would get asked about muscle spasms and when I said I wasn’t experiencing any, they would just move on with their questions. Nobody thought to mention to me that spasticity could still develop. Nobody thought to mention that my spinal cord was in something called ‘spinal shock’ and that when it figured that shit out it would potentially start causing muscle spasms. A little note to rehab here – a little head’s up would have been nice!

My spasms started as reflexive actions to pain or other sensations. They were pretty minor and didn’t interfere with life at all. They were actually beneficial as they were essentially a warning that something below my level of injury wasn’t right – maybe my foot had slipped off and I was rolling over it or my leg was in weird position from a transfer. I was hopeful that they wouldn’t get any worse as, from what I’ve read, people like me with thoracic spine injuries (as opposed to the higher cervical spine) and complete injuries are less likely to experience spasticity. Although there has always been some confusion on whether or not my injury is complete and every time I have asked for confirmation it gets more confusing. So I’ve stopped asking. (A complete injury would usually indicate that there are no signals going from the brain past the level of injury – far less chance of any recovery than if you have an incomplete injury)

As the months passed after my injury I kept up a stretching regimen to keep the flexibility in my lower body. I would notice that as long as I stretched every few days my legs would stay light and easily moveable. I would usually give myself an hour to stretch thoroughly. But my muscles kept getting tighter and tighter. Fast forward to today and it takes me close to two hours to stretch everything properly and I just don’t really have time for that. Even when I do get a good stretching session in, my legs only stay light and bendy for a few hours – no longer a few days.

The increased tightness, spasticity and heaviness in my legs has become much more than

leg spasm
Mild leg spasm in action

an annoyance. My legs are constantly straightening during transfers which throws me off balance and can be dangerous – it has caused me to fall on at least one occasion. The strength and weight of my legs make it hard to pick them up onto the bed or into the car on my own and has made dressing independently more difficult. A lot of you have noticed that I’m barefoot a lot of the time and part of the reason for that is putting and keeping shoes on spasm-y feet is really annoying so I avoid it and keep my toes painted instead.

Another fun little aspect to spasms is something called ‘clonus’. It usually happens to me when I transfer onto the couch and my leg will bounce up and down rhythmically – almost like when you are bouncing a baby on your knee. Except there is no baby and you want it to stop. My children think it’s hilarious and thinking of their laughter is the only reason I am smiling as I write this.

Most recently, the spasticity in my lower body has been affecting my sleep. I lay in bed only to have my legs spasm over and over and over again. I put pillows in different places to try and help. Sometimes it does and sometimes it doesn’t. But it is most definitely impossible to sleep when your legs are shaking your entire body and that is why this was the final straw. I cut my first pill in half and took it while I was writing this post. I fold!

Both neuropathic pain and spasticity can get worse with an illness, injury or infection (and in my case PMS). I have learned to pay closer attention to different cues like this so that I can be more in tune with my body. I don’t get the feedback that most people do when they have injured something on their lower body so I always have to consider the reasons why my body is reacting in certain ways.

It is important to note that everyone’s spinal cord injury is different and, in turn so are their residual symptoms such as neuropathic pain and spasticity. The need for different medications can change significantly with each individual. I’m well aware that my life will include different roadblocks because of my injury and different medications that I probably wouldn’t have needed had I not been injured. I’m glad I have the good sense to research but also have a good relationship with my practitioners who never get tired of my questions. I definitely let it get to me sometimes: the pain, the burning, the spasms. But for the most part, I try to be thankful that I am alive and have options to help remedy these ailments so they don’t interfere too much with my life.

Here’s hoping my legs will stop shaking soon!

13 thoughts on “The Pain in My Paralyzed Legs

  1. Great article keep up your writing. I find the differences between how people cope interesting.
    In my case my body does not habdle pain killer drugs of any type. No side effects, just they do not give me relief. Tried everything from Apirin to morphine to whatever and Doctors scratch their heads. Put me out or leave me alone.
    To compensate the only the only thing that works for me to dull pain is long deep breathing.

    Not sure how that works for Neuropathic Pain.

    Yes and meds suck.especially when your pills have more weight than your meal LOL.

    Keep on wheeling
    Dave

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  2. After a year and a bit of my injury I had the same sort of thing start happening. I find the longer I sit in a day, the worse they are. I was on Gabapentin for a really long time and just got tired of still dealing with spasms at a really high dose of medications. I even tried botox but I think my doctors were more frustrsted that it didn’t work then I was (botox is the go to for them apparently). So now I’m completely off and just try to take a few hours throughout the day to be sitting elsewhere (even at work, school or while doing other activities around the house). The more I exercise too, the better off I am. I met another woman in a chair with a similar level injury that we have and she told me to embrace the spasms. They will help you in the long run for so many things, as you’ve stated. She explained to me that seeing the spasms as your new cue to sensation and pain will truly help conquer this stage. I can now say 4 years later (even after 2 and a half years) my legs are a lot “calmer” and really only spasm at the start of a transfer and when they are trying to react to something.. so be patient, it could pass sooner than you think. T6 complete spinal cord injury since 2013 from Edmonton Alberta. Feel free to email me if you want more suggestions with this!

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  3. Our Jessica suffered horrible spasticity.
    Jessica was a spastic quadriplegic, her arms and legs were affected which caused painful contractures in her joints and the muscles to shorten. The pain kept her up all night and nothing helped. We went 5 years with broken sleep!! One day an amazing Dr. suggested we try baclofen. It was a life changer for her! She was finally able to sleep!
    Not sure if you have tried it yet, or if they use this medication for spinal cord injuries.
    Take care ❤️

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  4. Such a good article Codi. I’m sure there are many, like myself, that had no idea of these complications as a result of your injury. As if the injury wasn’t enough! I hope your new medication brings you much needed relief. 😘

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  5. Great article Codi. Please continue to share. I am a T-10/11 para who was on 19 different meds at the beginning of my journey in 2009. Now, I only take Lyrica (50 mg) 3 times a day and supplement every 4-5 weeks with an acupuncture treatment. And although I continue to have pain, it’s so much more tolerable (2 or 3 on a 10 point scale) than it used to be (8 on a 10 point scale). Glad to read you’re finding what will work for you.

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  6. So the reason you never wear shoes is they fall off too often? Interesting how you feel the nerve pain but can not tell if someone moves your legs. If your feet are off the chair foot plate would you know if you didn’t look down? I imagine with spasms and terrible sidewalks that could happen frequently.

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    1. That’s part of the reason. Or they just take too long to get on and I’m generally already running late. My legs usually spasm if my feet fall off which tips me off. But I wouldn’t actually feel it.

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      1. Shoes are overrated anyway! Def prefer my women barefoot haha.

        Would you say your legs go from completely light to tight and spasmy (word or not? Lol) after being in your chair for a long time and getting into bed? How do your feet and legs react getting in your vehicle? Also the stretches seem to help, keep at them. Maybe move your legs about as you watch tv or something to get some movement not normally received. Hope you don’t mind the questions.

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