The tough road of neuropathic pain

I seriously thought a knee replacement was the toughest thing I had ever done. I thought I was finally over it and that I could, at last, return to racing. It seems not.

A couple of weeks ago I started relatively suddenly with pretty major calf pain (in my other leg). It was so bad that I could barely walk more than 10 metres at a stretch before having to sit down. Following this, in addition I started getting pins and needles in my foot, then this escalated to more major pain making the skin on my foot very very sensitive to touch, throbbing and stabbing pain, constantly for no apparent reason: making walking near on impossible.

This is a tougher pain than any knee pain because it’s sharp, consistent, persistent and doesn’t follow any pattern. Nothing seems to make it worse (or better). It just does what it wants. And it’s a million times worse at night making sleep incredibly hard.

I haven’t done anything trauma wise that could have caused it, I have done nothing different, I just cannot think of a possible cause at all. And, because it’s my left leg I can’t even blame the knee replacement!

It’s fair to say I’m feeling pretty down. It is really hard to live with.

The research

As usual I have been looking into it. My symptoms are most definitely neuropathic (nerve) pain. Although my doctor says it’s unusual to start in my foot, medical research shows that peripheral neuropathy does actually start in the extremities. The top causes listed are

  • Trauma / injury
  • Diabetes
  • Vitamin B12 deficiency
  • Thyroid problems
  • Chemotherapy
  • Shingles

I have had a blood test, which clears me of thyroid issues and vitamin deficiency. It also tested for HbA1c which is blood glucose; that was also normal. I don’t have a rash so it can’t be shingles. I haven’t had chemo and haven’t had any trauma.

So it leaves me stumped (and still in pain).

What does neuropathic pain feel like?

  • Numbness / tingling
  • Prickling / sharp jabbing
  • Extreme sensitivity / painful to touch that usually isn’t painful
  • Throbbing / burning pain
  • Itching… that hurts when you try to scratch it

It is really most unpleasant, cannot be predicted and is not easily controlled. At the moment it is affecting mostly my left foot (but had mildly started in my right also) which is making tolerating shoes, and walking around actually incredibly painful.

Pain meds

These quite frankly scare me to death. I have such a bad history with pain meds (nearly all prescribed anti inflammatories and all opiates) that when the doctor gave me nerve pain drugs I was actually almost hysterical.

He has given me preglabalin (Lyrica) rather than Gabapentin. I can only assume that is because, from what I read, it is much less likely to cause nausea as a side effect.

I have been taking it for a week now, on a very low dose 1 x daily. It has stopped the foot numbness but hasn’t stopped the rest of the nerve pain, so I increased it to 2 x daily from yesterday. I was reluctant to do so but I was actually so distraught that I got to the point where I was thinking – you know what – ‘f*€* it, if it makes me sick – so be it, I’ll just cancel my working days appointments. I am so desperate for relief.

Testing for causes

I was referred for a nerve conduction test. On the public system the wait for this is incredibly long. So we have opted to pay for it ourselves. Even so I have to wait till 26 November to have this done. Hopefully I can last that long and hopefully it will actually show something.

The racing season

At the moment, I cannot get a bike shoe on. Therefore I haven’t ridden now for over 2 weeks. My first race is in 8 weeks. I’m also feeling pretty freaking stressed about this. Being able to even complete this race is in serious jeopardy.

I have been to the local bike shop and asked them to order in some shoes 2 sizes bigger, for me to try. I have no idea though if it will be possible time ride in them even. When this nerve pain is really kicking off, even the sensation of a sock feels like 10,000 massive needles pressing against me.

Will I be able to race?

Will I be able to do the Oxman on 15 December? (8 weeks away.) I seriously am not sure at this stage. 😢