Relentlessly Purple

Peripheral Neuropathy is one of my diagnosis’ and the one that affects me the most. I noticed recently that people I talk to have no idea what it is or how it affects me day to day. To be perfectly honest, I only really started researching it properly myself recently.

When I was diagnosed I took it very much as an ‘it’s all in your head’ diagnosis. I’ve since realised just how serious Peripheral Neuropathy and decided it was time I talked about it properly on the blog. I haven’t written about my chronic pain in a while although I have a huge range of symptoms that affect me, suffer from ‘flare ups’ and it can leave me feeling really low. I wanted to look at exactly what Peripheral Neuropathy is and for my own benefit, noted some of my issues to look back on.

Peripheral Neuropathy

Peripheral neuropathy is damage to the peripheral nerves, the network of nerves outside of the central nervous system. This develops when the peripheral nerves in the hands, legs and feet are damaged. These nerves include sensory nerves which transmit sensations such as pain and touch, motor nerves which control muscles and autonomic nerves which control things such as blood pressure, heat intolerance, altered sweating and bladder function. It can also affect other areas of your body.

Peripheral neuropathy may affect just one nerve (mononeuropathy), two or more nerves in different areas (multiple mononeuropathy) or many nerves (polyneuropathy). Most people with peripheral neuropathy have polyneuropathy as I do, which affects so much of the body!

Symptoms

There are many symptoms of Peripheral neuropathy. I suffer from most of them but some I only recently realised are related to my PN!

Sensory neuropathy symptoms include:

• Prickling and tingling sensations/ pins and needles in the affected part of the body. (This is almost constant for me)
• Numbness and less of an ability to feel pain or changes in temperature, particularly in your feet. (This explains why my feet are always too cold and numb! Yes, I can step on a lego and feel nothing now)
• A burning or sharp pain, typically in your feet. (Sometimes this reaches up to my calf)
• Feeling pain from very light touches that should not be painful. (Allodynia – Explains my unexplained pain)
• Loss of balance or coordination caused by less ability to tell the position of feet or hands. ( Sensory ataxia – which explains by episodes of falling and genral clumsiness!)

Motor neuropathy symptoms include:

• Twitching and muscle cramps (I often joke about the ‘aliens’ jumping in my legs!)
• Muscle weakness or paralysis affecting one or more muscles (Some days my arms and legs just don’t want to work!)
• Thinning (wasting) of muscles.
• Foot drop – difficulty lifting up the front part of your foot and toes, particularly noticeable when walking. (This explains my tripping over my feet a lot!)

Autonomic neuropathy symptoms include:

• Constipation or diarrhoea, particularly at night. (I thought this was due to IBS although I failed to continue investigating with the GP when I hit a low patch)
• Feeling sick, bloating and belching. (I guess that explains my huge manly burps and ability to burp talk)
• Low blood pressure, which can make you feel faint or dizzy when standing up. ( I have this on and off)
• Rapid heartbeat. (Tachycardia – this is made worse by my anxiety) 
• Excessive sweating or a lack of sweating. (I seem to alternate between the two)
• Problems with sexual function, such as erectile dysfunction in men. (Does too tired and sore count for women?)
• Difficulty fully emptying your bladder of urine  (I used to think it was great I could go all day without needing a wee but it has gradually become more painful and harder to fully empty my bladder!)
• Bowel incontinence (loss of bowel control – Luckily something I’ve only experienced a few times so far)

Damage to the autonomic nerves can result in a wide range of symptoms depending on where in the body the damage occurs.

Mononeuropathy symptoms includes:

• Altered sensation or weakness in the fingers. (Something I have noticed an increase of lately)
• Double vision or other problems focusing your eyes, sometimes with eye pain. (I have always had issues with my vision and focus and regularly get bolts of pain in my eyes)
• Weakness on one side of your face (Bell’s palsy – I have issues with the left side occasionally but I put this down to dislocating my jaw and stupidly punching it back into place)
• Foot or shin pain, weakness or altered sensation (A daily occurrence)

These symptoms can also disrupt sleep, make moving arms or legs difficult, affect pupil size, make skin blotchy and red and affect mental health.

Causes

Peripheral Neuropathy can be caused by a number of things. These can include:

• Diabetes
• Traumatic injuries
• Inflammatory infections
• Auto-immune diseases
• Exposure to toxins
• Tumors
• Poor nutrition
• Hereditary disorders
• Kidney failure
• Alcoholism 
• Certain medications

As with me, even with investigations, the causes of peripheral neuropathy often remain unknown and are called Idiopathic neuropathy. I think mine may be due to a combination of injuries such as cracking my head open on a metal door frame and being run over (my entire leg was run over) as a child. Throughout my teens I cracked my rib, dislocated my jaw along with countless other ‘minor’ injuries. As I never attended hospital for most of these, apart from the Jaw as my college tutor mate another student take me to a&e, I can’t be sure.

Treatment

With Peripheral Neuropathy treatment focuses on managing the condition and relieving symptoms but there is no cure. Medications can help manage symptoms such as pain killers.

If your symptoms are severe you may be prescribed medications containing opioids such as tramadol and oxycodone. I currently take Tramadol to relieve the pain but these are addictive so I use them sparingly.

Anti-seizure medications such as gabapentin and pregabalin may help relieve nerve pain. These can leave you drowsy and dizzy though, I often have to sit or lay down for a little while. I take gabapentin 3 times a day and whilst it does leave me sleepy, it is the one medication that I can’t cope without.

Tricyclic antidepressants, such as amitriptyline, doxepin and nortriptyline can help relieve pain. These work by interfering with chemical processes in your brain and spinal cord that cause you to feel pain. The serotonin and norepinephrine reuptake inhibitor duloxetine and the extended-release antidepressant venlafaxine can also help ease pain caused by peripheral neuropathy. I am currently taking amitriptyline and duloxetine to help manage my symptoms.

Therapies

Therapies include the use of a TENS machine which sends a gentle electric current to the area which it is applied. I do find this is useful sometimes and use mine when I’m really struggling. Physical therapy can help with muscle weakness. However, if like me you have other issues such as scoliosis this may not be appropriate. Finally, there are surgeries and steroid injections available to help ease the pain. I did go for this procedure however, it was unsuccessful for me. I have heard many positive stories about them though and still believe it was worth a try!

Peripheral Neuropathy is hard to live with and manage. I remember when I first started blogging about it, constantly being curled up in agony with no clue why. Luckily my medication makes it more bearable to cope with now. Some days are just too much though as there are so many symptoms. You can never be sure if you are ill or if it’s the Peripheral Neuropathy which can be a pain. Most frustratingly you never know how your day will go. This can cause anxiety and depression which I also suffer from. A Pain clinic can offer you support and provide therapy to help you learn to manage better though.

If you feel you have any of these symptoms please do discuss them with your GP as the sooner it is discovered, the quicker you can get it under control.

Have you heard of Peripheral Neuropathy before?