“My face is on fire and I just want to tear my limbs off”
Please note, pain of any type is a complex and very individual process. Please always talk to your doctor about pain management.
Nerve pain may also be referred to as neuralgia or neuropathic pain. It occurs when a nerve is damaged, inflamed or compressed (being pressed on). Symptoms of nerve damage are often thought of as negative (loss of sensory function) or positive (abnormally increased function). Nerve pain is a positive symptom (positive/negative doesn’t refer to good or bad in this context, more increased or decreased / present or absent).
Whereas normal nerves will send a signal to the pain centre in response to “danger” (pain is a protective mechanism after all); damaged nerves may send signals to our pain centres spontaneously or in response to benign (not-dangerous) stimuli. Nerve pain is often felt as burning, pins and needles, itching, electric shocks or shooting pain. Sciatica is a common example of nerve pain.
Stimuli that may trigger or worsen nerve pain:
- The wind
- Temperature (e.g. hot or cold water)
There is a very long list of things that can cause nerve pain. These include:
- Compression, e.g. from posture/positioning (like when your arm falls asleep), disc pressing on a spinal nerve, a nerve passing through a narrow channel (e.g. carpal tunnel syndrome).
- Drugs e.g. chemotherapy
- Autoimmune conditions
- Infections e.g. shingles
- Direct injuries
- Inherited conditions leading to nerve damage
- Vitamin deficiencies (e.g. B12)
Management of nerve pain can be generally grouped into: treatment of the underlying cause (where possible), pharmacological management (medications), and non-pharmacological (supportive) management.
As nerve pain results from abnormal signals, rather than something abnormal stimulating a pain signal (as in non-nerve or somatic pain), the medications used are often different. Anti-epileptics and anti-depressants may be used to try and modify the signals.
Medications that MAY be used in the treatment of nerve pain include:
- Pregabalin or gabapentin (originally an anti-epileptic)
- Carbamazepine (anti-epileptic)
- Amitriptyline (anti-depressant)
- Duloxetine (anti-depressant)
- Baclofen (anti-spastic agent)
- Local anaesthetic patches
These are just examples (and is the list of things I tried).
Nerve blocks are also sometimes used, depending on the cause/site of the nerve pain. This involves a local anaesthetic injection.
Capsaicin cream is recommended for post-herpetic neuralgia (the pain that remains after shingles).
Non-pharmacological (supportive) management may involve:
- Heat or cold packs
- Cool sprays/gels. I carry an ice gel spray (mentholatum) to use on my limbs and a spring water spray to use on my face (getting menthol in your eye is not a good idea). These just temporarily change the sensory stimulus, but worth a try.
- Acupuncture. This does involve needles and they do tap those needles in. I tried this before I started IVIg, and while my neuropathy was still spreading. I didn’t notice a change and ultimately decided the extra needles wasn’t worth it.
- Management of other pain sources – for me this has been physio/massage and posture exercises to try and reduce my joint pain and tension headaches.
- TENS – have had this many many times for muscular issues, but I haven’t tried it for nerves.
- Sleep/fatigue management – this is a vicious cycle. The burning/electric shocks keep you up at night, and then the more tired you are, the more the pain bothers you, and then you can’t sleep because the pain is bothering you.
- CBT and mindfulness training
Ultimately it is a trial and error process. For me, once I started IVIg and (a) my neuropathy stopped spreading and (b) my fatigue improved, I found the pain itself much more bearable. I also just got used to a lot of things – the left side of my face has been burning for almost 6 years now – I don’t remember what it was like to not have a burning face, and the limbs are over 2 years now too. I know what makes my pain worse now. I also had to learn to prioritise my activities, to get all the important things out of the way, before the burning flares up too much. I also have a stocked “get through the day pack” that’s always in my bag.
There are a lot of aspects to “supportive” management of pain (and facing the day) and I will endeavour to cover these in future blogs.
Smile and breath (it does help) 😊