On February 7th, 2018, I will be giving a presentation on living with pain at a study day for pharmacy professionals at Guy’s Hospital, London. I’d like to include other people’s experiences as well as my own, so please comment, whichever chronic pain condition(s) you may live with.
The presentation is for a study day entitled Managing pain: Making it happen, hosted jointly by the UK Clinical Pharmacy Association Pain Management Group and the Association of Pharmacy Technicians UK.
The learning objectives for my presentation are:
- Greater understanding of what it is to live with pain
- Empathy with people living with pain and how to better support them in practice
To make it easier for you to share your experience of living with pain, here are some optional questions as prompts. Please submit by Friday 2nd February.
Just answer the ones you feel able to, and please don’t spend too much of your time and energy on this. The boxes are large but please don’t feel the need to fill them right up! There are no questions about personal details and your comments will be confidential, with anything that may identify you being anonymised.
Thanks in advance for your help!
If you are unable to see the questions and answer boxes, I have put them in a comment at the bottom of this page.
A Prescription for M.E. 
If you’re unable to see the questions and answer boxes, here are the questions:
1) What single words would you use to describe your pain? e.g. burning, stabbing
2) Which pain condition(s) do you live with?
3) What impact does pain have on your everyday life? On your work or studies? On your relationships?
4) Have you kept a pain diary and in what ways has this helped?
5) What are your experiences of pain medication?
6) Have you attended a pain management group and how did this go?
7) What other ways have you found helpful for coping with pain? e.g. heat packs, online forums
8) What negative and positive experiences have you had in appointments about pain and pain medication?
9) Is there anything else you would like health professionals, and particularly pharmacy professionals, to understand about living with pain and the ways they can help you?
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What single words would you use to describe your pain? e.g. burning, stabbing: constant, nagging, searing
What impact does pain have on your everyday life? On your work or studies? On your relationships? It can leave me house-bound and bed-bound. I have to cancel activities as the pain is too much.
Have you kept a pain diary and in what ways has this helped? I did for a while, but it was too much work and just added to stress, and therefore more pain
What are your experiences of pain medication? I take various things to help the pain (pregabalin, amitriptiline), plus paracetamol and codeine. Sometimes the pregabalin & amitrip works, but often I need paracetamol and codeine on top of this, which dulls the pain further and means I can actually do things, like cooking, showering etc. But I feel harassed by the doctors about using codeine and other medications. Even though I never take the full daily amount, they want me to stop taking them, but that would mean living in worse pain, becoming bed bound. If they help, let me take them. Yes, codeine is addictive, and the the efficacy of the others reduces over time. But I’d rather take what I can and have some kind of life.
Have you attended a pain management group and how did this go? Awful. I was hoping to get some very gentle physio, massage etc, to help relieve the pain. But instead they basically used CBT and GET (I have ME). Talking about the pain won’t stop it. I wasn’t told it was CBT/GET when the doctor recommended it to me and after the first session, I stopped going as it was pointless.
What other ways have you found helpful for coping with pain? e.g. heat packs, online forums: Gentle massage
What negative and positive experiences have you had in appointments about pain and pain medication? My previous doctor was flexible about trying different medications and together we managed the pain as best we could. But since I moved a year ago, I cannot see the same doctor and the new doctors are constantly harassing me about the medications I’m on. I don’t get any support, just stress, and my pain has been a lot worse this year.
Is there anything else you would like health professionals, and particularly pharmacy professionals, to understand about living with pain and the ways they can help you? Be flexible with patients. Where possible, try different medications. If something works, i.e. codeine, let patients use it. Yes, monitor it, but unless you have something else that works, stop harassing them about it. And stop recommending CBT (and GET) to ME and other patients who experience chronic pain!
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What single words would you use to describe your pain? e.g. burning, stabbing: Electrical, searing, burning, sharp, stabbing, tender, sore
What impact does pain have on your everyday life? On your work or studies? On your relationships?: I snap at people that I want to have a lot of patience and appreciation for. I cannot work or study due to ME/CFS, pain is part of this.
Have you kept a pain diary and in what ways has this helped?: I have tried, it is a lot of energy to do as typing at length is painful
What are your experiences of pain medication?: Low dose (4 mg) naltrexone compounded (US patient) is the only med I have tried besides meloxicam and and ibuprofen when I could take it, but now can’t due to ulcers caused by these medications. I did try one dose of magnesium injection, but I had a bad reaction with increased pain and sensitivity for weeks afterward.
Have you attended a pain management group and how did this go?: No
What other ways have you found helpful for coping with pain? e.g. heat packs, online forums: Tens machines do a small amount (maybe 5%), epsom salt in baths or ‘oils’ can do a small amount, hot water can help but I generally need assistance to bathe. Heating pads can be helpful a little more than the above, but even the combined effect is not much.
What negative and positive experiences have you had in appointments about pain and pain medication?: *note: I am in the US, so my experiences may differ. I have had positive experiences being explained (on mutally respectful terms) why a medication/treatment might help or why it might not. I have also had physicians lie directly to my face about medication, condescend to my mother about me (I am an adult), and generally not listen.
I will always appreciate doctors who are honest with me or tell me to find someone better suited than one who lies or gives bad information, as a patient.
Is there anything else you would like health professionals, and particularly pharmacy professionals, to understand about living with pain and the ways they can help you?: Medications are not an ideal or even prefered solution for patients. Many of us already take multiple supplements or prescriptions per day, and some of us absolutely hate it due to side effects. However, pain drains you of a normal life and many of us want feasible solutions to where we are in life. In ME that may mean meeting someone where they are it being bedbound and needing fulltime care.
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What single words would you use to describe your pain? e.g. burning, stabbing: constant
What impact does pain have on your everyday life? On your work or studies? On your relationships?: Spoils my enjoyment of life
Have you kept a pain diary and in what ways has this helped?: Not a regular diary as the pain, fatigue,etc, makes it hard to concentrate in order to do so
What are your experiences of pain medication?: Not good
Have you attended a pain management group and how did this go?: No
What other ways have you found helpful for coping with pain? e.g. heat packs, online forums: My religion and religious meetings
What negative and positive experiences have you had in appointments about pain and pain medication?: Don’t know how to answer, sorry
Is there anything else you would like health professionals, and particularly pharmacy professionals, to understand about living with pain and the ways they can help you?: Yes, I would like everyone to understand that the pain and fatigue, not to mention the depression, are not helped by ones claiming to try to understand when they don’t, a listening, compassionate ear would do so much
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What single words would you use to describe your pain? e.g. burning, stabbing: Crushing, worse than when I previously broke bones.
What impact does pain have on your everyday life? On your work or studies? On your relationships?: I’m mainly housebound, often bedbound. I’ve had to give up my career, sell my car, give up on the idea of the children my husband and I were planning. It’s completely ruined my life.
Have you kept a pain diary and in what ways has this helped?: I do, I think it helps you think more about you’re actually feeling on a particular day.
What are your experiences of pain medication?: They take the edge off but don’t cure it. I’m no longer laying screaming in bed continuously but I wish they had more of an effect.
Have you attended a pain management group and how did this go?: I was enlisted on one but had to cancel twice due to being unable to get out of bed so was told I’d been removed from the service. This is hospital policy apparently here. I feel they should be a bit more flexible when dealing with people with illness/ disabilities that are often unreliable. I can’t say in advance how I will feel or be.
What other ways have you found helpful for coping with pain? e.g. heat packs, online forums:
What negative and positive experiences have you had in appointments about pain and pain medication?: My GP is good. Hospital pain clinic as above. Appt with pain specialist at hospital who asked why I was there (I’d been referred) said things would only get worse and walked out leaving me in floods of tears.
Is there anything else you would like health professionals, and particularly pharmacy professionals, to understand about living with pain and the ways they can help you?: Remember we know our bodies, the levels of pain we’re experiencing and what we can cope with. Listening.
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