I live with neuropathic pain, sometimes severe. I have been lucky to have been taught about pain, including neuropathic pain, from a skilled physiotherapist. I have received some educational input from other treating clinicians, some from clinician colleagues, and I have spent time reading about pain both from books, and from internet sources.
However, just when I think I understand pain, I read or watch something new and then manage to confuse myself! I think this is because my personal experience of neuropathic pain doesn’t always fit with the explanations of pain that are most common in the various formats, including the Internet. Surely this must also be the case for other neuropathic pain sufferers?
I can remember around 3 years after my accident, and after back surgery, being on holiday in Portugal. Even though I was 3 years into my pain journey I didn’t really understand pain or my pain situation. Being on holiday, and therefore away from the pressures of work, I had time to trawl through the Internet to try to understand. I read many articles about pain, including blog posts from people who were in pain, but there was always something missing in them, they didn’t really describe the pain I was feeling. I will never forget how life changing finding and reading The Neuropathy Trust website was. For the first time I started to read about pain that I could properly recognise and identify with!
I can only assume that there must be other people in my situation, who have mainly neuropathic pain, and find it hard to identify with generalised articles about pain.
It is for those people I write this post. If it helps just one person with neuropathic pain, as the Neuropathy Trust website helped me, then the time writing the post will have been worthwhile.
I hope this post may also help clinicians to further understand the impact neuropathic pain can have on someone’s life, and also that for some (me if no-one else!) how confusing it can be being immersed in information that is largely about pain that is not neuropathic in nature.
First a huge and important disclaimer. I am not in any way medically qualified, and do not pretend to be. Everything I say is from a viewpoint of a person with 12 years-worth of neuropathic pain suffering. This is NOT a medical lesson on neuropathic pain. I have tried to write accurately but I cannot guarantee I have got everything right. I’m very happy for physiotherapists, or other clinicians, to put me right on anything!
There are many articles and books that provide information about the different types of pain and their characteristics, and so I don’t propose to go into detail about other types of pain, I will just stick to neuropathic based pain. It should also be noted that I have, and still do, suffer from non-neuropathic pain, but it is the neuropathic pain that causes me the most difficulties, and the most confusion when learning about pain.
My neuropathic pain follows a manual handling accident ten years ago, in which a herniated disc damaged my sciatic nerve through compression. Unfortunately, once damaged, nerves do not repair either quickly or easily. Not all damaged nerves produce pain, but I understand sometimes a damaged nerve will start to create rogue electrical impulses from within itself, which are transmitted to the brain and interpreted as pain. In addition to pain, numbness may be felt, and reflexes affected. This has been the case for me.
The following diagram gives an indication of where the sciatic nerve lies in the body. It basically goes from the lower back down the back of your leg and down to your feet.
Eighteen months after my accident I underwent back surgery to remove the part of the herniated disc that was compressing my sciatic nerve, but unfortunately for me the nerve had already been permanently damaged. I have been on a long journey of rehabilitation and ‘recovery’. At the start I was basically unable to walk or sit and I was in constant severe pain. I have quite gradually improved over the years, and below describe my current situation (only the neuropathic element of it).
These are the words I would use to describe my neuropathic pain, and the associated numbness.
- Burning sensation
- Lightning bolts
- Pins and needles
- Heavy sensation
- Sharp, shooting, searing, stabbing
- Worse pain at night
Overall the main difficulties I experience are pain on sitting, standing still, lifting and carrying and walking. I am very affected by what I do during the day, and my pain is usually worse during the evening and night. Fortunately for me, as long as I am careful to minimise aggravating my condition during the day or evening, then my pain usually settles back down over-night and I start a new day with similar levels of pain to those I started the day before with.
I experience ‘wind-up’ of pain, which to me means that if I keep physically irritating my sciatic nerve though lifting, carrying, walking etc then it becomes more and more irritable and increasingly painful. If I continue to irritate the nerve then I can expect to have bolts of severe pain, most likely waking me up at night, or moderately severe pain, mainly in the evening, which feels like cramping type pain, but may last around 30 minutes. Neither of these are pleasant and I do what I can to avoid this situation occurring!
My overall pain experience is influenced by my emotional state, for example if I am anxious or stressed then I am likely to experience more pain at any time of the day.