Was diagnosed with REMS about 11 years ago and have suffered from pain from the nerve damage pretty much since day 1. I started on gabapentin which was great but gradually had to increase the dosage up to the max. I moved onto pregablin with amatriptilene which did nothing so added duloxetine to the mix but still did very little. Replaced the pregablin with the gabapentin to see if that mixed with the other two would help but after a week it felt like I was just taking these for the sake of it. My best description of it is between feeling like someone is giving me injections all over my body but lately it’s more like when you’re frying bacon and the fat spits up and hits your arm but it is all over. The pain is getting too much, can’t concentrate at work and is starting to affect my mood. I’m also aware of my muscles reacting to these areas of a pain which is just tiring me out more. They tell me I have run out of options and the only way to go is morphine or methadone. I have an appointment on Wednesday to discuss this and wondered if I could hear from people who are taking either of these for nerve damage pain. Your experiences with these opiates would be very much appreciated.
thanks for your reply. I keep upping my other meds already anyway but it’s constantly at the back of my mind that morphine is obviously much more serious and side effects can affect me much more than current meds do. Could I ask, did you stop using morphine and if so what did you use to manage pain after? If you would prefer not to answer then no worries and as I said I appreciate your reply
A few years ago, I use to go to a hospice weekly, for therapy like reflexology and they also offered respite stays for guests.
Although their main concern/patients were cancer sufferers, they also took MS sufferers. It was back in the days when I had a mis-diagnosis of PPMS.
I had 4x 6 night stays in their respite room. It was really good and gave my hubby a much needed rest.
During those times, their doctors were very keen to keep all in-patients comfortable and pain free. At the time, I was suffering from acute hip/knee pain when getting in and out of bed. They readily prescribed oromorph. In a short time, a matter of days, I needed a higher dose and also when at home. My GP was informed at the time.
I wanted to know more about the drug and discovered it can damage kidneys quite badly, so I became worried about this. Now thinking that quite a large number of the hospices patients are terminally ill, organ damage may not be an issue like it was for me.
And that`s when I decided to stop the oromorph. I took paracetomol as a substitute and eventually the hip/knee pain abated.
thank you very much for sharing your story with me. The Dr’s pretty much aren’t holding back anymore and have told me straight I will never be pain free again. I already knew this but hits a bit deeper when they say it to you. The main aim now is to improve my quality of life and let me work and function as much as possible. I know it’s a bit different with the pain from nerve damage but definitely concerning how quickly you had to increase the dosage but feel I’ve kind of run out of options now. Been battling for over 10 years to keep this from defining me and try my best to never let this stop me from doing anything, I still throw my nieces in the air and deal with the consequences the next day lol though I now do this somewhere they will land safely if I fail to catch them. Keen to try something new but will definitely take baby steps there. Thank you again