What questions do you want answered about your pain medications?

What questions do you want answered about your pain medications?

Hi all,

We are producing leaflets on some of the most widely-used medicines for chronic pain. We need your help in making sure that the leaflets answer the questions you want answered.

The leaflets will cover:

amitriptyline

opioids (e.g. fentanyl, tramadol)

gabapentin & pregabalin

Please share the things you want to know more about or wish your doctor would explain to you to help us make these leaflets as useful as possible.

Thank you so much!

Tom

20 Replies

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  • When and where will the leaflets be available please? I'm on Fentanyl (metrafin) patches, with Oramorph, and occasionally feel the need to change the patches before I should. Would be interested in learning more about how long each patch actually lasts without changing. Had to wear one OVER the advised 72 hours once. Also, I use Micro porous tape to keep them in place. Any other suggestions please?

  • Hi poemsgalore,

    Thanks very much for responding. Leaflets will be available on our website sometime in the spring or summer of next year.

    Tom

  • Hermes123. I would like to know how to post a poem on this site by attachment, I attended a top level pain management course about a year ago, after attending a number of these courses this was do do with the electrical pauses in the brain sending and receiving messages and responding to them, as someone who has had so many different types of treatments over so many years, I think I have heard them just about all, even being affected by the moon and stars and the earth gravitational pull.

    So by the last day of this course we were ask to write our explanation of pain,I was so fed up and feeling low I wrote one in my head whilst driving home, transferred it on my computer right away sent to the physiotherapist straight away, as I copyright all my writings ask for permission to use on their courses to explain pain.

  • Hi Hermes123. I'm afraid I'm not sure how you can post an attachment on this site. You could try asking the HealthUnlocked people directly support.healthunlocked.com/...

    Great that you've found a way of expressing your experience of pain.

  • We get more questions about Gabapentin on the forum than anything else so glad you are including it.

    Pain clinics used to produce a leaflet covering what strength to start and how to increase daily til required dose was reached. I had it pinned to my notice board in the kitchen and it was my bible!

    I have often wondered why they stopped these.

    Is it possible to include that on the leaflet? And of course coming off them...just as slowly?

    Thanks everyone at Pain Concern for looking after us so well. And giving so much support to carers too

    Pat x

  • I have read scare stories about Lyrica (pregabalin) adversely affecting the brain's neuroplasticity and yes - these scare stories do scare the life out of me! What is the truth about these claims? I have also read that it is near-impossible to be taking Lyrica and to be able to absorb a whole lot of new information eg. acquiring a new skill set or learning a new language. I would also like to hear the truth about this claim. What I would really like is unbiased information about this medication. Many thanks - the leaflets sound like a great idea! :-)

  • I take tramadol, which works quite well but only in small doses due to side effects . I do not understand why other painkillers have not been tried other than Codiene which is just a similar opiod. My question would be how does the doctor decide what painkiller to use ?, in my case I know choice is limited due to other illnesses but there are many options for pain releif why do some doctors try everything while others just stick to one drug I often wonder.

  • Hi Tom

    Great idea to produce leaflets about the pain drugs we're on.

    What would be helpful is info on doses, side effects and times of day that's best to take these drugs. Also as Paton rightly says info about the safest way to withdraw them or reduce doses would also be helpful.

    Also explaining how different drugs are used for different types of pain would also be good.

    Hope that's helpful and thank you for wanting to do this for us. Regards Misty.

  • The long term effects of using opiates.

    How to combine various medications for maximum effect.

    And of course the ever hopeful of how to reduce opiate use

  • I am very concerned about long-term risks of various medications, particularly opioids. I'm 28 and have been on pain medication for 7 years. As my pain is so bad, I keep being given new medications but long-term risks and effects have never been discussed with me. I have complex physical issues relating to joint damage (some severe) from Rheumatoid Arthritis and I also have early onset osteoarthritis. I'm wavering on joint replacements (they want to replace both my jaw joints) because it's risky due my fragile health at the moment and also, they won't last forever, so I am likely to need revision surgeries. So, given all this, I can't imagine a life where I won't need some pain relief.

    My main Qs are;

    - Longer term risks and I am interested if there is any research on if these medications can affect mental health.

    - Realistic treatment plans for younger people e.g. How long are these medications meant to be used for? They've been slowly increasing the strength of my opioids with no timescales given for what happens next. Do I take them forever?

    - Who prescribes? Should GPs be handing out medication like sweeties when it might be more appropriate that a pain clinic reviews the person?

  • Hi.

    I think the leaflet idea is fantastic. Great idea. Something handy to refer to instead of trawling the internet for hours. I am taking Tramadol and Neproxin for pain, Meberevine, Hyoscine butylbromide 10mg and Omeprazole for Diverticulitis. Anti-Hystamine for hayfever.

    I have 2 questions.

    What are the counter actions, if any, if I take over the counter pills, including supplements?

    Do my pills decrease their effect the longer I take them.Does my body eventually reject them

    Thanks

  • 1. How/when was it discovered that certain drugs can be used for something else, other than what they're licensed for? What studies have been done with regard to this?

    2. What do the Pain Specialist Doctors REALLY think about prescribing these meds; do they technically 'work' or is it all psychological?? The basic nature of chronic pain means that no drug can 'switch off' the nerve signals so why do they spend so much money on them?

    3. How many people in the reader's country & worldwide take each of the drugs mentioned? What percentage report minimal, good, excellent relief?

    Maybe I'm asking for more information than you were planning on including in these leaflets and I understand that your intention is probably not to be so 'formal' but these are questions I have asked but haven't been given consistent answers to! 😊

    RJC

  • I wood like to know more about this too i think we all should have the answers to this.

  • This i think we also should be to told more about it and why.

  • ......oh I've also thought of

    4. Can it be explained the difference between a drug's generic name and a brand name? (This isn't necessarily for me as I used to be a Registered Nurse but I know that people get confused or plainly don't know the difference which can confuse conversations on here! 😊).

    RJC

  • My second comment above actually refers to no.4, not nos.1-3.

  • Some really excellent ideas here. Many, many thanks for your help.

    We will let you know when the leaflets are available - sometime in the spring.

    Tom

  • I am on Pregablin and I don't think GP's, Pain Clinics tell you anything about the long term effects of being on this drug. For some people the body gets really addicted and trying to come off the drug even at a very slow pace can be difficult. I do think this should be highligted so people are fully informed about the drug before deciding to go ahead taking it. I think these leaflets you are producing will be a great help to the community.x

  • An accurate Medical history and accountability. What any Doctor only "thinks" or "guesses" is not acceptable.

    People cannot "imagine" pain. I reject that notion entirely. Yes patients do have different pain tolerance levels which should be taken into account. How? Just have a good look at their medical records, what illnesses, procedures etc. they've had in the past, what was prescribed and for how long did the patient require the pain med. Any "non" reason for with holding pain management Medication is cruel and inhuman. The Humane Societies treat our pets with more compassion.

    Ever wonder why? Why a person would commit suicide? It's so painful it's not worth living that's why my dear friends. The suffering is so insurmountable one can not deal with it day in and day out, weeks, months and yes - years on end. I may go as far as to say; the only reason one may not end it all is they still do take such joy in seeing everyone close to them strive while all the while the one suffering can't participate. Live and Let Live.

    In the name of Intractable Pain.

  • Hi there. Anyone any experience on cymbalta? I've just started it to treat Crps of foot. 20 months down the road. Here's hoping.

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