Friday 13 June 2014

PAIN

I am in pain. It hurts.  It just hurts.  It just hurts absolutely everywhere.

Pain really is terribly unpleasant.  And it is hard to describe, to put into words just how dreadful it feels.   Just how awful it makes you feel.  How debilitating, how devastating, and how unbearable it actually is.   The Internstional Assosiation for the Study of Pain's widely used definition states: "Pain is an unpleasant sensory and emotional experience associated with actual or potential tissue damage, or described in terms of such damage."  It is difficult to calculate the impact that it has on everyday life.  It just takes over and is all-consuming.


The pain experienced with MS is often neuropathic pain and is caused by damage or disease affecting any part of the nervous system involved in bodily feelings (the somatosensory system). For people with MS therefore, this Chronic Pain can be another one of those 'invisible symptoms'.  And only the person experiencing it can truly know how unbearable it really is.  How terrible it makes them feel.  This can be emotional and can lead to distress, fear, anger, agony and frustration.  This is all rather miserable and can affect your emotional response, affect your mood and therefore your ability to cope and deal with everyday activities.  This is exhausting.  This can make you grumpy.  I know it makes me grumpy. The proverbial 'bear with a sore head', the bear with a sore everything.


Being in pain, to constantly hurt or ache is exhausting.  It is almost a torture of sorts.  It is unbearable.  To constantly and continually be in pain, pain that is relentless and persistent and incessant and painful.  When there is no relief. When there is no escape.  It gradually wears you down.  It gradually wins.


For people with MS the pain they experience isn't that acute pain of stubbing your toe, or stepping on Lego, it is a chronic slow, persistent, lasting, continuous, nagging, irritating pain which is likely to be the result of nerve damage (in either the brain and/or the spinal cord) that might cause a range of sensations, and that may take a variety of sensory forms, such as:

  • Squeezing or crushing
  • Cold
  • Hot or burning
  • Sharp or Dull Sensations
  • Like ants under my skin or ‘creepy crawlies’
  • Creeping
  • Aching
  • Pins and needles

This neuropathic pain may be caused directly by nerve damage, or indirectly, due to other MS symptoms.  This is referred to as 'Dysaesthesia' or 'Paraesthesia' (altered sensation).


There are a number of natural pain management techniques.

  1. Endorphins: these are the body's natural pain relievers, and they can be as strong as many pain relievers. They work by blocking pain signals from ever reaching your brain. Endorphins also help alleviate anxiety, stress, and depression, conditions that often accompany and exacerbate chronic pain.  Any activity that gets your blood pumping for a sustained period will release pain-relieving endorphins into your system.

  1. Friends: those who have regular contact with others, (and with others dealing with similar forms of chronic pain) find that their pain becomes more manageable (see my FRIENDS BLOG).  You can laugh with friends, you can cry with friends, you can drink wine or drink tea and eat cake and chocolate and ice-cream with friends.

  1. Get Outdoors: getting out and getting some fresh air really does do the power of good.  10-15 minutes of sun exposure a day can help the body produce vitamin D.  It has been found that people who got the recommended daily 400 to 800 IU of vitamin D experienced less pain than those who didn't.

  1. Meditation: meditation and relaxation and mindfulness comes in a huge variety of forms, find one that works for you.

  1. Sleep: it is important to get a healthy restorative amount of sleep, this includes the importance and power of naps.

There are also Alternative Therapies that are thought to help with the management of pain, such a Tai Chi, Yoga, Massage and Acupuncture.   And there are Complimentary Therapies such as Cognitive Behavioural Therapy and Distraction Therapy, which are also thought to be helpful.


Pain is unfortunately a factor of MS for a large number of people.  The MS Trust quote reports that suggest that 'up to 80% of people with MS may experience pain at some stage'  Different types of pain are managed in different ways. And as with everything with MS, no two are the same.  Pain is subjective.  Pain is unpleasant.  Pain is real.  There isn't an answer.  There isn't a solution, when you sit there with tears rolling down your cheek.  There just isn't.  You know your body better than anybody else, you just need to find what it is that works for you.

16 comments:

  1. I can empathise with you totally Hanya. Neuropathic pain is unlike any physical pain. It is draining and exhausting and compounded by adding to the stress of living with MS.
    It can often be difficult to describe, even to yourself.

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    1. Stephen, you are right. I think it is only people who have experienced it will truly understand how terribly debilitating it is. It does feel as if it will slowly drive you mad.

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    2. I certainly had no idea Hanya... Another blog post which is insightful and brilliantly written. Mike

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    3. Thanks Mike. I really do hope these post and informative, but I'd never want to preach x

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    4. You don't preaxh Hanya. You seem to have found a way of telling your story and getting across a message which is of interest to all without giving the slightest hint of a lecture.

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    5. Thanks Mike. I'm glad. I feel I am on a journey, and am hugely grateful to have such wonderful and supportive people to accompany me x

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  2. I feel pain all the time! It's always there, only the degree of it varies.
    Great post Hanya! x

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    1. Thanks for your comment. So sorry that you experience pain too - it is another cruel and 'invisible' symptom. x

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  3. I tried to explain this to a friend today. I said it was like phantom limb pain where there's no real cause other than damaged nerves. I likened the nerves to an electrical cable where the insulation has come off and the copper wiring has broken in places, so the current is disrupted. Because of this, the pain receptors don't work properly and they perceive pain where none should exist.

    On Tuesday I couldn't get out of bed because I was in so much pain. The tiniest movement caused stabbing pain in that part of my body. I couldn't touch anything and I couldn't get up to take pain meds, so I slept for most of the day. When I woke in the afternoon the pain was gone, like it had never been. A waste of a day.

    Last week I had uncontrollable itching for 3 days all over my body - arms, legs, feet, ribs, back - even the palms of my hands. I thought I'd been bitten by midges while putting out the rubbish, but I'd actually given myself welts from scratching so much. I tried witch hazel, calamine lotion and bathing in cool water, but nothing helped. I thought I'd go mad with the itching, then it stopped as suddenly as it started. I tweeted about it and a fellow sufferer told me she experiences this from time to time.

    For the last 3 nights I've had hot, prickly hands and feet that have kept me awake, but gone in the morning. I can feel my hands heating up as I type this and my toes are prickling.

    Paraesthesia and dysaesthesia are the bane of my existence. It's inconvenient and annoying and disrupts my life no end. #MSsucks ��

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    1. I hear you. I hear you loud and clear. I can relate. And you can't actually describe it to someone who has never experienced it. Experienced the stabbing pain or the itching or the burning or the, any of the other sensory feelings that make you feel as is you are slowly losing your mind, slowly going crazy.

      I am so sorry you suffer this dreadful torment. And I can't help. I wish I could help. It is of little comfort, but we know that we are not alone.

      I have recently been prescribed Gabapentin which has brought an amazing amount of relief. They are used for the treatment of Neurological Pain. It would certainly be worth talking to your GP about them. They provide a tremendous relief to me.

      Thank You for engaging with the BLOG and sharing your thoughts and experience. x

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  4. Yes the pain the pain! Gabapentin does bring me some relief and up until then suffered until couldn't bear no more. It was disrupting my life and my ability to work! Couldn't sleep, couldn't concentrate. On my days off all I was capable of was sleep added to the fatigue I already suffered from. Tried Baclofen but made muscles too weak! I am glad this medication is working for me. Trial and error I'm afraid till you find the correct drug. Seems to be a lot of that happens with this disease! As they say no two are the same.

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    1. Thanks for sharing your experience Judith. As you say it totally disrupts your life. As I say, "There isn't a solution, when you sit there with tears rolling down your cheek." Gabapentin I am delighted to say does offer relief x

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  5. As you say only those going through it really know what its like. I'd like to say it's sent me mad but always been that way

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    1. Yes, even when I take my pain medication, it only dulls they pain. It makes it manageable, but it is still there. At least it can't affect your sense of humour x

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  6. Hi, I hear you with the pain. Try explaining to people how you are numb but at the same time dipped in fire. So far the pain meds I've tried don't take the pain away, they just make my head feel further away from the pain, like I've slipped into a parallel universe and am watching myself from the back of my head. I was in US in March and pain came on the moment I landed and burned like a bushfire up me. The moment I came back to the UK 3-weeks later, Bingo! pain gone. In fact, I think the moment I stepped into the BA lounge was the cure! It was a stressful trip and the pain meds had no effect. Had to tough it out for 3 weeks. But I absolutely knew that the minute my feet touched UK ground, it would go away. Emotional distress has definite correlation to onset of my pain 100% of the time.

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    1. Thanks for your comment Sarah. I understand your analogy of "parallel universe and am watching myself from the back of my head". Yes, I think Emotional distress does impact, in fact any kind of stress. I hope you remain pain free x

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