Dealing with lock down nerve pain – the story of the nightmare leg

As you know, I have nerve damage in my lower back, and right before this Coronavirus thing kicked off, I had been for an MRI and seen a nerve pain specialist who had then, as a result of what the MRI was showing, referred me to a spinal surgeon. The idea was to talk through the symptoms, results of the MRI and whether surgery would be an effective option to help alleviate some of my pain symptoms.

pretty sure that left foot shouldn’t be that red??

What are the symptoms?

The main unbearable symptom is nerve pain. Unless you have actually felt this for yourself there is no way of appreciating how truly horrific this is. it is on a whole new level and much much worse than any joint replacement related pain that I have felt. I did not think there could even be a type of pain that’s worse than that. The feelings include (but are not limited to):

  • tingling
  • very sharp pins and needles
  • burning
  • shooting
  • sharp
  • stabbing
  • prickling
  • hypersensitive to touch – the lightest tough causes incredible pain

I often feel all of the above, all at the same time. In addition to that, the nerve damage is also causing confused signals to my muscles, which means I also get intense muscle pain throughout the whole leg, making even the most basic movements – walking around the house – so incredibly painful. This also, as you can imagine, makes sleeping impossible also, so I was also prescribed sleeping tablets. The sheer thought of that terrifies me but I was almost at breaking point.

It’s almost like the muscles are giving me severe overuse and fatigue signals, when they are not actually fatigued or overused. sometimes the movement of my leg from the knee can affect this pain and make it worse (and on occasion) better when I reposition my lower leg. More recently the issue is further up in the hip, meaning the movement of my leg from the hip is actually causing pain. In addition to all this, I am gradually losing the feeling in the leg, starting from the foot, working its way upwards. Walking is quite a freaky experience when you cannot actually feel one of your feet. So I chose to always wear fully closed footwear because it makes it easier for me to work out where my foot is in space. I kept stubbing my toes and tripping over on nothing at all because I kept mistaking where exactly the floor is.

What medications are available?

Medicating pain is a massive tricky experience for me because I have inherited my mother’s severe allergy to opiate based mediation. This does not leave many other options.

So at the moment I am on a pretty high dose of nerve pain medication (which, thankfully, has stopped making me feel unwell for now). That is helping to treat some of the nerve pain but does not treat the back pain or the muscle pain.

What now?

I have no clue. All treatment progress has halted because all hospitals have been shut to all patients except covid-19 patients. There is some unrest at this thought too, because in effect most hospitals are now only half full, if that and the healthcare system is not in fact over-run by covid-19 at all.

The leg was all good and had been quite settled. the doc told me to increase the dosage till it reached a point where it was covering the pain and that had been working ok. Till this week.

I had, until now, managed to build the cycling up from zero (not even able to turn a pedal) to being able to cover around 20km in one go. Until lock down I was avoiding cycling and purely focusing on swimming, for the dead obvious reason. But, it has been 2 months since the pool was last open and one month since we were put in full lock down, so the bike is really the only option left.

I took it really easy, starting at just 3-4km, having to stop every few kilometers due to the pain. I managed to gradually build this up, still unable to put any real load through the left leg meaning I had to stay in a reasonably easy gear to maximise the amount of time I could tolerate cycling before the pain forced me to stop. It also meant the right leg (TKR) was taking a lot more load. however, I was still not getting any right knee pain or right leg muscle pain, only left leg. Go figure.

All the time I was mindful of the fact that the nerve pain specialist I went to see said do not do anything that exacerbates the symptoms. This was a very fine line.

All was going reasonably well, when suddenly this week, I got up one day to excruciating leg pain. When I talk about nerve pain being excruciating, this is a whole new level of awful.

Suddenly, overnight, I went from reasonably ok and well managed to quite frankly horrific, again, while continuing to take the same level of nerve pain meds the entire time. I have increased them again, but I know that I only have 25mg to go before I am on the max dose. And, again I am back to only being able to cycling 4-5km without having to stop.

I am struggling to come to terms with this, on top of lock down, the fact the hospitals are closed so I won’t get my next specialist appt any time soon, and the sheer unpredictability that goes with having a trapped nerve in your back. I have no clue what I have done (or not done) to cause either the improvement or the regression.

So, I am back on the sleeping tablets (which I had managed to do without) and lock down is just fine for me right now. Not being able to walk anywhere (even if I wanted to!!) means I do not have the daily pain and disability reminder that I might have if I was still conducting life as normal.

I actually do not like taking the sleeping tablets, but they are necessary right now. Sleeping tablets do not give you a nice peaceful sleep. I find that it makes it more restless early in the morning, causes weird trippy dreams and makes it hard to wake up when you need to.

Onwards, but probably not upwards

So, what can I do right now, other than suck it in, cry and scream into the pillow when it becomes unbearable.

Rest assured the doctor will actually hear from me at some stage next week (via the new remote video feed consultation) if things do not improve soon.

Why am I still cycling then, is this not madness?

I was doubting whether massage was actually working. I still doubt it, because the leg was improving by itself and became bad again suddenly overnight.

I do find it is worst in the morning and improves with use. If I can tolerate the muscle pain (and stretch like a crazy person), then cycling actually can help improve the nerve pain. again, I have no clue why. My educated guess is that using the leg thus activating the muscles, helps to improve circulation, which I do believe is also compromised by this damaged nerve.

Sounds convincing but all I can do right now is guess.

So I am hoping that the full lockdown is lifted next week so there is at least some light at the end of this tunnel meaning I might be able to see that specialist at some time in the near(ish) future. Maybe?