I’m on quite a few pain meds but in comparison to some, its not much. Each day I take 8 x 500mg Paracetamol, 8 x 30mg Dihydrocodeine, 4 x 10mg Nortriptyline and 2 x 300mg Pregabalin and I also wear a 52.5mcg/hr and a 5mcg/hr Buprenorphine patch, this is topped of with Oramorph as needed.
Over time these meds become less effective or I should say that our bodies become tolerant to them and so they don’t help like they once did, because of this a while ago the consultant at pain management suggested swapping my Buprenorphine patch to Fentanyl, I agreed because I really needed something that could help and also because we trust the consultants.
A few days later and I felt so unwell, we couldn’t figure out why, my breathing was very shallow and I couldn’t speak properly because of that and so my wife took me to A&E, I had chest xrays and blood tests and a blood gas test and I hate them because in the past I have found them to be very painful, however this doc hit the mark first time and it was no more painful than a normal blood test. Nothing showed up and so I went home, I continued to struggle and at a family party people couldn’t believe how unwell I was.
My GP made contact with me, he had just received the report from the hospital and asked me to go and see him. He simply asked me to stop using the Fentanyl patch because the dosage was very high, its apparently twice the strength of Buprenorphine and my problems were down to that, before long felt better, well at least as good as I normally felt.
I called the pain clinic to tell them what happened and they said I might be intolerant to Fentanyl, I have done the dreaded “Google” searches and I’m convinced that I was overdosed but what can you do? I still need the pain clinic!
My last appointment was at the beginning of December, my pain levels were through the roof and I just couldn’t make the appointment, I had a very bad cold and I sounded like Barry White, a cold or any illness always will make you more susceptible to pain and so I phoned the pain clinic. I tried and tried but couldn’t get through and so I left a voice message, I hate missing appointments and especially last minute.
Two days later and a letter arrives, the basic content was “you missed an appointment and so you have been discharged”, I was furious. Luckily I managed to get through on the phone, however the secretary was adamant that I should be discharged and I said that surely a pain clinic should understand when people are in way too much pain to attend, it didn’t make sense.
My wife said I should contact PALS, its a patient advice team and they handle all complaints, I didn’t feel comfortable complaining because I hate to moan about our NHS service. I did email and from clicking send on that email and a pain management nurse phoning me, was about an hour. I couldn’t believe it, I have tried on a few occasions to contact the pain team and my calls, emails and voice messages have gone unanswered, I don’t make a habit of calling but when my pain is out of control, I don’t like to bother A&E and so I turn to the people who are there to help.
Apparently it was an admin error, they had realised I must be in too much pain when I didn’t attend and my file was put to one side for contact later, I’m not sure if that is true, but that is what I have to accept.
What do I do, do you have chronic pain? What do you do when the pain soars and won’t lower despite rest, break through meds and trying all those coping strategies that I have been shown? Should I feel like this?
Until next time!