Saturday 26 September 2015

Me & My Pain (CMT Awareness Month 2015 - DAY 26)

Welcome back to CMT Awareness Month on my blog!
Today I would like to address the subject of pain.
My CMT Pain
Living with chronic pain is hard on you, both physically and emotionally. There are days when I wish I could hit the pause button and walk a mile in someone else's shoes for a change. 
I have Charcot-Marie-Tooth Disease Type 1A, and like all the forms of CMT, symptoms can vary from person to person. Pain is a symptom that many with CMT experience and once this has been niggling away at you for some time, it then earns the title of "Chronic Pain".

Pain in people with CMT can take the form of either joint and muscle pain (caused by the stresses that CMT places on your body), or neuropathic pain (caused by damage to your nerves).
Along with localised pain in my feet, ankles and knees, I have more widespread musculoskeletal pain in my hips, back, shoulders, neck, forearms and fingers.  Accompanied by the electric shocks and creepy crawly sensations of neuropathic pain, I don't have a single day free from the constant nagging aches and pains.

Aching bones in my feet are joined by severe arthritis in my right ankle causing stiffness and gnawing pain which increases particularly with movement in the joint.  Aching knees and hips throb away in the background whilst several areas of my back and shoulders give me grief

My nemesis, and the one overriding type or location of pain for me IS my back.  I have a mild curvature of the spine which, added to the general strains but on my back from poor posture and walking gait, cause severe spasms at times.  Totally incapacitating, these periods of pain can stop me in my tracks and the only relief is time, and heat.
Coping With & Treating Pain
Sleep disturbances are my biggest pain related problem, frequently resulting in restless nights of frustration, twitchy muscles and fidgety legs.  Depression and chronic pain are intrinsically linked and, if I can switch off my mind for long enough, the mindfulness techniques I am learning and practising to help me manage my depression also cross over and aid with pain and lack of sleep.

I can particularly recommend body scan meditation (such as the one below) which really focuses on each part of the body, recognising sensations before moving on.  Definitely worth a try.

This being said, I'm still learning, and life is one long journey and lesson. I struggle to really let go and relax into the process.
There are of course several ways to try and control or reduce pain, including physiotherapy, orthotics, medications and pain clinics. Certain surgeries can also help reduce localised pain.
CMT UK have a section on their website dedicated to managing pain. You can find it HERE.
I am a little more dependent on prescription medications then I would ideally like and that in itself frustrates me! Everyone is different; it can be a lifelong battle to keep pain under control and by "under control" I mean a reduced level of pain, not completely eradicated.

With a certain amount of understanding of your body's limits, a good state of well-being can be achieved, but it really helps if those around you understand even a little bit of what you go through.
    Understanding Chronic Pain
As you struggle with all the intricacies that come with it, you must also deal with spoken and unspoken prejudice about your condition. Do you really feel as bad as you claim? What about that day when you were a little more active and in a better mood? Are you maybe just lazy? Is your life really as difficult as you claim because it doesn't seem like it? Why are you taking a disabled parking space from someone who really needs it? 

These are all questions people with chronic pain and long term disability face in life.  Sometimes these questions are voiced by friends, family or work colleagues, born out of frustration at you not being able to do something to the standard of a "normal" person (whatever one of those is!).  Sometimes, these are questions we ask ourselves!  Feelings of failure and resentment of our own bodies can play mean tricks on our minds.

Tomorrow I'm going to share with you my adaptation of an Open Letter from a Person with Chronic Pain. Please pop back and read it as it really ties in with today's post.
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I do hope this has helped you, whether you suffer from pain yourself, or to simply want to understand chronic pain a little better.  I'll finish this rather long and serious post with a little CMT humour!...
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If you are interested in finding out more, the UK's official charity for the disease, CMT United Kingdom, have a wealth of information.



  1. What about itching that moves from site to site and has no signs of rash??

    1. Absolutely! And the sensations of water running down your leg when there's nothing there! So many bizarre sensations caused by the messed up sensory nerves!

      Don't know who you are sorry, but thankyou for your comment xxSAMxx

  2. Thank you for sharing your post and sending you gentle crafty hugs.
    Linda xxx


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