New here - struggling with pain

Hi Rosie and a warm welcome from me too. I'm sorry you are having issues with pain but you seem to be on the right track with your pain meds/management. Nowadays there is absolutely no need to suffer undue pain. I combined oramorph with metamizol this time last year and the pain went from unbearable to tolerable which is where you get to. They can escalate even further if necessary to fentanyl patches for example. I was talking to someone the other day whose father has bad headaches due to a brain tumor and who is taking tillidin which is a weak opiate. I asked why he didn't take morphine and got the response "but that's a drug". No helping some people. Anyway,  hope you find ways to still pursue an active enjoyable life, maybe doing new and different things. Have a nice weekend.

Hi Angie, I mentioned to Rosie about my high MST continus level that I was taking. At its highest level I was taking 130mg twice a day for a couple of years before I had a review with the chronic pain clinic doctor and then my GP. They fiddled with 3 or 4 different meds but the pain never decreased at all. There's nothing I can do except try to cope and not do too much at once. Plenty of breaks is my response. Above all I don't let it get me down.

I used to dispense my own MST but on 2 occasions I accidentally took an extra 100mg tablet and had to spend the night in hospital each time under observation. The second time I was asked if I definitely did it accidently! My wife does the dispensing nowadays. My short term memory is pretty bad.

Tvman x

Hi Close encounter 

sorry I am late with my welcome as I have been away, but a very warm welcome from me as well. 
You have had some great advice here already, and I fully agree with what others have said. You need to be very vocal sometimes to get the help you need, but there is help available. If you read my profile page you will see that I had some help from my hospice with pain. It is your GP that can arrange this for you. I have since been offered lots of different pain meds, but the side effects are not great for me, so sometimes it’s trial and error. xx 

Hi Chelle,

I hope you enjoyed your time away. I read through your profile page, you have been on some journey! I am so pleased that you managed to reach a better place. It almost seems pot luck in when mentioning something, talking to the right person leads you to the right destination - in your case the physio treatment. 

i have learnt to be quite vocal and will keep trying different people until I get the result required - draining sometimes though! I speak to an oncology specific psychotherapist who is helpful in navigating through and advising when I need to question further.

i think I just need to be patient and allow a bit of trial and error before pain can be managed/become tolerable.

I suppose that for all of us, it isn’t just the pain, it’s the adjustment to a new way of life. 

Thank you also for welcoming me into the group, I look forward to many more chats!

xx

Hi tvman

you low I haven’t even looked to see what strength I’m on lol as long as it helps and I can see how you make mistakes with the tablets we have so many to take, I had a bit of memory problems at the beginning of taking mst to must just be them . Have a great week 

angie 

Hi Angie 

At one time because of having a heart attack, a mini stroke (TIA) and a few other things, I was taking 26 tablets a day. I'm now taking just 21 a day and Mrs Tvman sets them out for me and Alexa tells me when to take them. 

Tvman x

Sorry to be nosy Tvman but have you ever been offered an intratheacal drug delivery device? It’s a small catheter that goes directly into your spinal fluid space and a metal delivery device is implanted under the skin of your abdomen and it delivers constant pain relief of your consultants choice. It gets refilled via the implant under your skin and drug dosage can be changed via that implant also. I was on the list to have one as I had intense pain in my hip/groin area but I had some surgery on my hip which sadly has taken my mobility but I’m not in the awful pain I had for years. I am having a nerve block next Friday to see if it helps the rib pain I am having from metastasis in my 4th and 5th ribs on my right side. I’m hoping this will make 2026 a less painful year for me. I know you have been having pain relief treatment for years and I’m sure you’ve been offered this treatment but I had never heard of it before it was offered to me.

i hope everyone in physical or mental pain can get some ease in 2026

Hi Elliekate, no you're not being nosey, I'd never heard of that but I sure read up about it. I don't know what it was I had before save for it being an injection at the base of my spine and I could only ever have one. It failed to improve things but I suppose my back pain is secondary to my incurable bone marrow cancer and that is still the case. 

Should I be called to see the chronic pain doctor again, I'll be sure to speak to him about it. Thanks Elliekate 

Tvman x

Good evening Rosie.

As everyone has already said, a very warm welcome to our group of liquorice allsorts. We might not be here by choice, but we are certainly here for each other and because we feel comfortable to laugh, cry, rant or just ask a question or have a bit of banter.
Is your community nurse your dedicated MacMillan nurse? Here with us up North we have special MacMillan nurses who will come and visit you at home. Maybe you could ask your team about a visit if you have not got one so far.  I do hope your will be pain free in no time and enjoy your little grandchild. Sending a big warm hug 

Angie and Lilly xx 

PS. Lilly is my beloved furry little cat companion