At the beginning of last week it was finally time for my appointment with the pain management clinic. I’d been referred by my GP in May and in July they called to offer me their next available appointment… the 10th of October. It wasn’t ideal but I was just glad to know there was at least what had been promised to be, a very helpful appointment in my future.
As many people know, I haven’t been very successful in finding a good pain med combination so far. I was first given gabapentin, this did nothing for my pain and they just kept increasing my dose, determined that they would get it to work. When that plan failed, I had to be very slowly weaned off gabapentin, which involved more issues than my body had in the first place. Once weaned off this, I was put on a build up dose of pregabalin, with nefopam for extra relief. I managed to get up to just one dose of 100mg pregabalin before experiencing so many side effects, I was bed ridden. As this hadn’t worked, I was then put on 60mg codeine phosphate four times a day and 5-10ml of oramorph four times a day. In the weeks before my clinic appointment, I was also put back on nefopam to try to help relieve my pains.
The GP and I discussed what we wanted to get out of the pain management appointment, she wanted my pain relief changing slightly but not starting all over again with anything I could react to. We agreed that a longer acting version of oramorph would be the best way to move forward, providing the pain clinic agreed with her plan.
So, after months of waiting the day of my appointment finally arrives. I’m unwell and should be in bed but after waiting so long, there was no way I was cancelling now. Unfortunately, staying in bed would have proved to be the much better option. We started by going through the questionnaire I’d had to fill in before the appointment, double checking he understood what my conditions are and the medications I was currently on or had tried. All good so far. He then begins to talk about how they treat chronic pain, as soon as the next few words came out of his mouth, I knew it was going to be awful. “We usually begin by sending you to CBT and GET” After all of the PACE trial cover up had come out recently, this was the last thing I thought he would be suggesting to a patient with ME. I refused to even talk about that option and thankfully he respected my decision and moved onto their next method… gabapentin. Oh dear. The final option on their chronic pain treatment plan was amitriptyline, unfortunately I already use this on a daily basis. At this point I was starting to worry, was I going to leave this appointment with no help at all? A few suggestions had been made to me about pain relief I could ask for that had helped others with the same problems, so I decided to voice these and hope that he was open to new ideas. He was. Phew!
I left the appointment with not a huge amount of help, and certainly not with what my GP had sent me there for, but I wasn’t left totally without options. He wasn’t entirely sure how best to go about helping me but agreed to look into a few different possibilities. A tens machine may be of some help, he was unsure if I could use that with my PoTs but would ask the nurse for me, there was also the suggestion of lidocaine patches or a morphine patch but he didn’t know enough about my conditions to make an informed decision. Hopefully my GP will be able to advise me on which course of action would work better for me so I can actually take something away from the pain clinic appointment.
Maybe I had built the appointment up to a level of expectation that it could never live up to, or maybe they’re just not ready to deal with patients like me. Either way, I feel that I didn’t get as much out of the service as others with different causes of pain, said they had. Have you had successes with the pain management clinic, or found a particular thing that has helped you significantly? Spoonie advice is most certainly needed!
Spoonie Bad Ass xxx
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