Pain with MS

'Among symptoms such as difficulties with cognition, decreasing mobility, fatigue, bowel and urinary issues- my symptoms are in all parts of my body- pain is always a major factor'

This week Mary Devereux shares with us her story of day to day living with MS and pain.

In Europe 1 in 5 adults suffer with chronic pain. In Ireland it is higher.  In 2011 Researchers from School of Psychology & Centre of Pain Research, NUIG Galway found that in Ireland 35.5% of adults in Ireland suffer with chronic pain.  That's 2 in 5 people. In people aged between 18 -24 the proportion was 1 in 5 people; in those aged 65 and over, it was as many as 3 in 5.

Does multiple sclerosis cause pain?  Does MS and pain go together? Or are they two different conditions?

Not so long ago you may have been told there is no pain with MS. Now, thank god or thank science or thank whoever you want (!) it is now a recognised symptom.

Let me tell you my story. Nine years ago, I was diagnosed with Multiple Sclerosis and my first symptom was pain. It was an unrelenting pain in my right leg that took two years of visiting various consultants. I never got any answers until, as a last resort, I saw a pain specialist who listened to my story.

I thought I was going mad. I was continuously told that my symptoms were atypical of MS. Coming out of neurologist appointments questioning my own bodily experiences, doubting what I was feeling, the awful aches. Am I imagining all of this?

Over the years my MS has progressed from Relapsing Remitting MS to Primary Progressive MS.  It never leaves me alone for five minutes. And every action has a consequence; the consequence is always pain.

Among symptoms such as difficulties with cognition, decreasing mobility, fatigue, bowel and urinary issues- my symptoms are in all parts of my body- pain is always a major factor. Pain comes in all forms- stabbing, burning, nerve pain, shooting; at anytime, day or night. But I especially HATE the nights. There’s a saying that the darkest hour is before the dawn; I can tell you, it is.

The pain and discomfort never stop. A sleeping tablet may/may not get me to sleep but I will wake with pain. It has moved on from a localised area of my foot or legs to full body PAIN.   Whatever part I move hurts- my finger, my wrist, my neck, my knee and even my chest. It can attack every area of my body.

I sometimes wake up thinking the mattress has turned into a slab of concrete, my muscles are like uneven rocks on a beach, sticking out sore and no comfort. I am trying to think… what pain medication did I take last? What can I take next? When did I take them? What have I on tomorrow that I need to be focused for? What is my cut off time to take something so I stay focused? This is on top of taking my regular pain management tablets, 24 pills a day.

With that comes trying to have pain in silence, trying not to wake up my family with my moans of pain or moving around. I am living with it but they are living through it with me. Okay, I am tired the next day but I no longer work; my family still have to get up and go to work or study, go to college. This after having been woken up 3 or 4 times to get me heat or cold packs, depending on my type of pain.

Pain can seep into all areas of your life, effecting decisions I never thought I would have to make. So many sacrifices and changes.

The impact on family and friends is two-fold. The emotional and mental impact from trying to look and act fine and carry on is exhausting. There’s no end in sight especially for your nearest and dearest. If someone is ill or has an injury, they will get better over a period of time.  There is a beginning, a middle and an end.  People are sympathetic. But with a life-long illness like MS, people are very sympathetic but they get TIRED of it too. And rightly so.

Please don't take from this blog that I am a bitter, cross woman. I’m not. Pain is hard to cope with and live with. I believe if you have a headache, that pain is yours and it is real and it can be as debilitating as mine or the next persons. I would never make little of any person’s pain.

But yes, I am very tired and weary of it.  But I am not the only one and when that hour before the dawn comes and when I think I can't do this anymore,  the dawn arrives  and I get up to carry on and live my difficult, but also beautiful, life. 

Because I have my family, I have love and that's what all people with pain do. We keep going.