Shared experiences of living with pain

In preparation for a talk I gave about what it’s like living with pain, I asked a few questions on my blog to see what other people experience. Here’s a round-up of the answers people gave.

Thank you to all those who shared their experiences with me. 32 people took part and I’m grateful for the time and energy you spent.

Please bear in mind that this wasn’t a proper research study and it was just an informal internet-based show of hands.

The chronic pain conditions of people who responded are in the graphic below. The larger the word, the more the condition was mentioned. The majority of people who took part have a diagnosis of M.E./CFS, partly because my blog readers mostly have this condition and also Action for M.E. shared my questionnaire on their Facebook page.

Chronic pain conditions

Here are some of the words people used to describe their pain. The larger the word, the more it was mentioned. What I noticed was that some of the words describe the pain itself and some describe how pain makes us feel or the effect it has on us – in a way, a secondary pain:

I asked about the impact pain has on everyday life, work/studies, and on relationships. Here’s a summary of what people told me, bearing in mind there were a range of pain conditions, so not everyone’s experience is the same:

  • Sleep: Pain severely affects people’s sleep, as they cannot get comfortable for long enough to get to sleep and pain is worse at night. One respondent called this “painsomnia”.
  • Mood: People mentioned that pain makes them grumpy, irritable, short-tempered, snappy and impatient. Some said they feel like a failure and feel very lonely and isolated.
  • General activities: Doing too much brings on more pain, so it is limiting and concentration is poor. Some only manage to get food and drink and use the bathroom, with not enough energy to do anything other than this. Some cannot even wash or brush their hair.
  • Mobility: For many who responded, mobility is affected and for some, pain also stops them leaving the house, so they are housebound. Some use a mobility scooter but are often too unwell to use it.
  • Exercise: Some find exercise helps but for others this makes their pain worse, so this depends on the condition someone has.
  • Employment/studies: Many had had to give up working or studying, or were dismissed from their job due to having to take too much time off with their condition. Those working part time said they can only do this with a cocktail of pain killers. People mentioned difficulty explaining to employers why they need time off, and that being under constant scrutiny by HR departments is stressful.
  • Social life: Going out needs to be planned carefully in advance and some never see other people at all. Many report having lost their friends.
  • Relationships: Can’t always be touched, even tapped or cuddled and pain affects sex life, and that their partner do more than their fair share of cooking, etc. Some who are single told me they don’t have opportunities to meet people, and some expressed that they would not have anything to offer people, and who wants a sick partner? One person mentioned that their pain condition has prevented them from having children.

I then asked for people’s pain medication experiences. Some said that nothing at all works for their pain or that they cannot tolerate the side effects. For some, NSAIDs tablets (e.g. ibuprofen) help their muscle pain, along with ibuprofen gel. Some find paracetamol helpful while others found that opiates (e.g. co-codamol) or tramadol help more. Some find that a combination is helpful, e.g. pregabalin alongside amitriptyline. It’s clear from the responses that different people respond differently to medication, even within the same chronic pain condition, and that some are left with no pain relief options at all.

As for non-pharmaceutical ways of reducing pain, people find a wide range of things helpful:

  • soft pillows and memory foam mattress
  • warm baths with essential oils or Epsom salts
  • herbal remedies
  • pacing activities
  • avoiding uncomfortable clothes
  • gentle exercise (bear in mind some also find exercise exacerbates their condition, so it is not for everyone)
  • heat packs, wheat bags and hot water bottles
  • electric blanket
  • cold flannels for migraine
  • massages (although some find touch painful)
  • relaxation, yoga, breathing exercises and meditation
  • resting in a quiet, dark room
  • eating a healthy diet
  • information from pain charities
  • using social media and online forums for support
  • distraction with low energy activities e.g. knitting, playing online scrabble, watching comedy on TV
  • osteopaths, chiropractors and physios
  • religion and attending religious meetings

I asked if others had tried keeping a pain diary, how they find it and whether it was helpful. Many said they find it too difficult and energy-consuming, and that it makes them feel more negative focusing too much on their pain. Others found doing this helped them pace their activity. I have found a diary helpful on the run up to an appointment to help me explain how my pain varies, or to see how a new medication or management technique is affecting me.

I asked if anyone had tried pain management groups. Many weren’t aware of any in their area they could be referred to, or hadn’t been offered one. There were mixed experiences amongst those who had attended a pain group. Some found them helpful for support and learning how to adapt to life with a pain condition, whereas others reported that they were too demanding, making them worse, and even unable to carry on attending. I also have that mixture of an experience – helpful in some ways but the exercises weren’t suitable for me, so that made me relapse for several months afterwards. Perhaps a “one-size-fits-all” approach to pain management isn’t helpful.

I asked about people’s experiences of appointments with health professionals about pain medication and here’s a summary of the comments:

  • Conflicting advice between different specialists has meant that they argue through the patient – I have also had this experience!
  • Some report not being believed about their pain, that it is just stress or psychosomatic, and others have been told that they just have a low pain threshold and that this is down to their mental health, which they feel is unhelpful.
  • Many said their health professionals don’t seem to understand their pain and how it affects them on a daily basis.
  • One person said they always feel more downhearted after an appointment.
  • Another commented that they find their pharmacist more knowledgeable about medication than their GP.
  • There were very few positive experiences mentioned, although the good experiences involved the professional listening well, being supportive and honest.

Finally, I asked what people living with pain would like health professionals, particularly pharmacy professionals, to know. People would like to be able to have an honest discussion about medication pros and cons rather than being told what to do, and to be flexible about options. Remember we know our bodies, the levels of pain we’re experiencing and what we can cope with. Having more time in consultations was also mentioned, along with that it would be good to have drop-in sessions for people to go to when they’re having a flare.

By far the biggest request was to be believed and be treated with compassion and sympathy. As one person said:

“Even if you think the patient has mental health problems or a low pain threshold, that patient still deserves to be as pain free as possible – that patient still deserves help and support.”

and another:

“Above all, LISTEN TO THE PATIENT. Thank you doctors who do do this. You are true heroes.”

Thanks again to all who helped me prepare for my talk, this was also appreciated by the audience. The main message taken away seemed to be #ibelieveyou:

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