Tuesday, 11 March 2014

What is your pain level today?

I`ve recently spent a week in a pain clinic which is part of the Neurology department in a French hospital. Most people with M.E. or Fibromyalgia suffer with chronic and long term pain. I`m no exception. However until my stay in hospital I`d never had any help, advice or support on dealing with that pain.

To be honest, pain has not always been a major symptom, apart from when in major relapse. However it has recently become more of a problem for me. Just before and during my stay in hospital I`d developed chronic pain in my neck, shoulders, back and spreading into my arms. It became unbearable. I don`t mind saying that it made me cry. 

So what had I done to bring on such pain? Well I`d pushed myself to try and carry out activities of pleasure - like a `normal` person. That was a big mistake! The result was chronic pain.

How do people cope with chronic pain on a daily basis? How do you assess and rate your pain? In hospital I had to fill in lots of forms and evaluate my level of pain every day like this...

There are lots of words to describe pain. I used some of them in my poem here..
Pain that
Is strong
And so
Hard to
So much pain
Awful pain
Chronic pain
Severe pain
Widespread pain
Terrible pain
Horrendous pain
Persistent pain
Unexplained pain
Disabling pain
Terrifying pain
Radiating pain
Unrelenting pain
Unbearable pain
Agonising pain
Excruciating Pain!
How do you describe your pain? 
What helps you with your pain?
In the pain clinic I was given some tips for dealing with chronic pain. However, like many with M.E. I am sensitive and intolerant to many medications so I am left with paracetamol or ibuprofen.  
They gave me a heated linseed compress which helped with my pain. So I have now purchased one for use at home.  
I was also introduced to a Tens machine which I am going to try using on a regular basis to see if it makes a difference. What have I got to lose? 
Otherwise I will have to be more aware of any activity that will increase my pain levels. I will have to plan before and afterwards so as to avoid the crisis of pain. I have to learn to live better within my limits and not push those limits. 
My stay in hospital has helped me to review my options and think about pain along with all my other symptoms. So it was on the whole a week well spent. 
Do you have any other tips or advice? I would love to hear from you.
A bientot!
From the French Femme xxx 


  1. A very interesting read, as always. Thanks Ros. x

  2. Interesting, your story sounds similar to me in that i didn't suffer too much pain in the early years of my ME, then suddenly started to suffer neck, then shoulders, then back and down into my arms pain...and migraines with it. All my doc did was diagnose fibro on top of ME and give me pain killer after pain killer...most of which don't work or knock me right out. X

    1. Thank you Claire. I have started to wonder if I now have Fibromyalgia on top of ME. I know a lot of people end up with both. I certainly haven`t suffered with so much pain until recently x

  3. I'm glad you got some benefit from your stay in hospital Ros and wish you the best of luck with the pain relievers. I'd not heard of a linseed compress so will look at that, thank you. My ME began 22 years ago with a stiff and painful neck, reaching part-way down the spine, which persisted for several days before spreading across the shoulders and upper back, along with a mild-flu episode that only put me in bed for a couple of days and I was back at my full-time job within the week. In the following weeks, I noticed muscle ache and weakness, mostly in the forearms, as I drove every day and found it hard to hold out my arms and hang on to the steering wheel. Neurological symptoms followed, along with increasing muscle fatigue and muscle weakness, so after a few weeks I saw the GP, who said it sounded like post-viral fatigue syndrome and would clear from my system of its own accord within about a year. He didn't tell me that PVFS is a neurological disease (classed as such alongside ME by the World Health Organisation since 1969). Had I been told that I would have taken it more seriously and not tried to push through it. Had I been told that it was, or could have been, ME and had that explained to me, then the muscle aches, stiff neck, upper back pain and neurological problems would have made sense, as myalgic means muscle pain (I also have muscle spasm) and encephalomyelitis means inflammation of the brain and spinal cord. Ros, your journey with this illness mirrors mine in many ways, I wouldn't have described the muscle ache as pain until around the 10 year mark, and I've only had excruciating pain when at my most severe, which is definitely post-exertional and can last from days to months. I can only keep my pain levels down if I do as little physically as possible, which as we all know is a lot harder than it sounds, unless we're so severe that we physically cannot move.

    1. Thank you Jo for your input. I wonder how much damage we all cause by pushing ourselves through and by doing too much. I agree it`s very hard to do very little. Life often gets in the way. And of course the more we do the more we suffer. My pain levels have definitely increased and so I`m trying all that the hospital suggested. I`ll let you know if I see any improvement.