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

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40 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.

  • The only problem is I cannot find away to download my poem? that others might get the benefit. Hermes123.

  • Hi Hermes,

    Do you mind copying ad pasting or PDF? Not seen any pictures but I am thinking a screenshot should be possible.

  • Hi Dyllis: I not computer savvy when it comes to posting things on line, we did not have computers in my day, reason I requested help from administrators, but never received a reply to my request, I would love to post my poem especially at the time my pain clinic requested to use it in future session as an example on explaining pain in a simple fun way. If you can advise me how to down load it, I would be more than willing to share it. Hermes123.

  • 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

  • Hi Paton, the most plausible reason for pain clinics stopped sending out these leaflets is because each person does not need to go right to the end of the increase scale. They hit their blood titration limit and their pain management is working for them, so do not need to take more than they take at that time in their treatment. It is also up to the doctor to accurately prescribe an individual dose for that patient. Just a thought. Take care Oldman1952.

  • 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 katieoxo60, the doctors do have a choice of which pain reliever to prescribe but we do not know why some doctors chip and change medications? Or do we? When you go to a doctors surgery they ask you lots of questions, lots of questions why to reach a preliminary diagnosis. Some of the questions are about your pain, where is your pain? is it sharp? dull? an ache? pins and needles? shooting? is it there all the time? is it worse before or after food? does it wake you at night? is there any position that eases the pain? Many, many other questions about pain but you just give the doctor the answers to his questions.

    What matters most is why you are in pain.

    One analgesic is not a cure for all pains and your physiology is totally different to your mother, father or friends. That is the reason why a prescribing physician will give each person a different analgesic each time. You might have forgotten that some years ago you were prescribed something that did not agree with you or that something that you are taking at present is contraindicated with the best analgesic, so he/she will have to find out what different medication would give you the best analgesic effect with out giving you side effects. Hope that helps clarify some of your worries or doubts about prescribing for a patient. Oldman1952.

  • Thanks Oldman1952, yes you are right what matters is why we are in pain, hate to say this but I had a fall around two weeks ago, injuring my lower back and internal muscles the Gp was quick to respond but gave me drugs that I am recorded as being allergic too as top up painkillers and are contrarindicated. They did cause side effects including worsening cough and upset stomach. When I went back on Friday he was running late and I now find he thinks I am a nutcase with no pain. So nothing was resolved or discussed I was with him for two to five minutes and all that was acheived was he managed to upset me more and I now feel disinclined to see any male doctor in my practice . I am sorely tempted to report this matter but that will just cause me more hazzle. They have no intention of finding what is best for me the patient, after twenty odd years of this crap plus pain and other health issues I feel very let down by these so called caring doctors. But none the less agree there should be more info on side effects & interactions both for patient and doctor. Sorry this reply became a bit personal on info.

  • I find that doctors don't seem to have time to run through side effects, when to take them etc. I juggle a lot of meds and highly recommend going to a pharmacist to have a meeting to audit drugs / interactions / timing of dosage etc. I have found it more useful than prescribing doctors or consultants, as they are experts in prescriptions. They are also able to comment about the drugs from an unbiased perspective. GPs seem to always stick to NICE protocols, but the pharmacist isn't tied.....I hope that this type of focus will be in the pain management mag / info

  • 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 Cashdoll, I empathise with you regarding the onset of RA and OA. Pain management is a speciality all on it's own and you have choices about what you have to reduce your pain. Many people who I read about here want all of the pain to go away. That would not be a good thing because every one has a pain somewhere in their body every day, not all of the time but some of the time.

    You should have an individual care plan for your illnesses and in it should be a progress report and an evaluation section because you cannot go on getting medication after medication all of the time. You are still young, far too young to be taking massive amounts of opiates and titrating them up and up. When are they going to stop increasing your dosage?

    It is a whole multi disciplinary team that should be involved with your care, a whole team! Specialist doctors for your RA,OA Chronic pain, Nurses, Neurology, Physiotherapists, Occupational Therapists, Social Workers and a psychiatric team too because when a person is in severe pain their mood and self-esteem are very low leading to depression.

    You should find out if you have an MDT looking after your care and not individual specialities on their own and doing their own thing.

    GP's need to be able to respond to the specialist's letters and where possible keeping the GP in the loop is a vital for your own sake. Also he has the experience to deal with your medication as party to your MDT care plan. You might be the right candidate for CPA. Care Programme Approach. It is similar to the MDT but its more person centered and there is one person in the team that is the CPA co-ordinator so that every one on your list of specialists in your care is informed if there is a planned meeting regarding your care.

    Sorry Cashdoll I sometimes see people in the system not getting the correct help and support they deserve. I feel that there could be things out there you are not getting. i.e. Joined up care.

    Thanks for listening to me rabbit on but it really gets me mad when I know something is not right.

    Hope that you get what you want and deserve. Oldman1952.

  • 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.

  • Nice one RAY!

  • 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.

  • When will the leaflets be available and how can I obtain one please. I have asked my GP on a number of occasions to refer me to a pain clinic but he will not stating that there is nothing they can prescribe that he cannot, but I've been told that there are far more effective painkillers than those I am presently taking.

  • Well then ask him to prescribe?

  • Hi Bennett1943, you have a right to see a pain clinic specialist if you want to. If your GP will not refer you to a pain clinic then send in an official complaint to the practice manager and see what happens. You will get an appointment fairly soon afterward. If that does not work send a letter to the local General Practitioners Committee explaining your problem and that you are in severe pain and your GP will not refer you to the specialist help that you need. Hope that works.

    The complaint that you send in to the practice manager has to respond to you with in 48 hours, then you will be invited to discuss your complaint with them. Don't be fobbesd off any more. Oldman1952.

  • Thank you Oldman1952 for your reply which I will do immediately. I've put up with the pain for so long. Very many thanks again.bennett1943

  • Can anyone advise about Tapentadol please. I've been trying to change from Tramadol to Tapentadol and can't cope with the side effects of lethargy and feeling ill. Does it go away? I've had to stop taking it as I can't function even though the pain releif was much better. Please help!

  • Im new nevertheless, I used the fentanyl patch for two years, and I was never able to function hardly. I was on too much, but mentally at the time, I know it helped keep me calm. I didn't have any pain while I was on them, but once I got a lot of my mental worked out and got on the right meds, I decided I didn't want anything going into my body without I was able to know when, how much, and then I would leave my body. I controlled the intake and I knew how much was in my body. The fentanyl patch I used for two years or longer, I didn't get any high off if I was just afraid if it ever actually was absorbed the contents of the patch 150 mcg however you say it every 3 days I changed that patch and it was still half full of the medication. I don't want to go back to that but I will before I will continue this life unable to function without generating so much pain it make my quality of life non existent.

  • will you include spinal cord stimulators?

  • For those people living with spinal and skeletal pain (myself) I think that finding good shoes make a difference as they seem to make a difference in my case, but finding a pair can be quite a task, because a new pair can cost a lot of money and then you find that maybe they are not for you, because you only find out by trial and error, and by then it is too late as you have worn them.

    So I find myself looking in Charity Shops and trying and buying shoes and I've learnt to my cost that there can be quite a difference in pain management by just what footwear I have on.

  • I can't remember my pain relief medicine which I had to take everyday for pain in my neck which extends to my right shoulder or arm and sometimes in my lower back which is an effort to seat straight but I try it as an exercise. I took the medicine for almost 2 years with physical therapy. I stopped taking it when my size increased from 12 to 16. I was feeling heavy not sure how to explain it but heavy is what I felt. Also, I had noticed that I needed to shop for a more fitting wardrobe too frequently but didn't understand why until my physical therapist commented my reaction to the drugs. I did not inform my GP my abandonment. I am still in constant pain, though mild and have limitations to what I can do physically without injuring myself and should not bend over for extended periods which is what led to the discovery in the first place. I also can't balance my head straight and I am quite exhausted before I actually start. As for the weight, I have not been able to loose it and this is 3 years after stopping.

  • I'd like the effects of opioids to be explained clearly. I was on Fentanyl for only 6 weeks and became addicted (unknowingly) and ended up in hospital with withdrawals. Had i known the seriousness of the side effects I'd never have taken these patches.

  • Hello Tom,

    I wonder if my wifes medication for Polymyalgia {predisone) spelling wonky

    will help me with my Fibromyalgia , I take lyrica x2 and tramadol x6 and it is not enough

    to take pain away. Thank you Mikejames.

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