Hi, sorry it has taken me so long to get back to this, there are massive issues going on in life for me outside the chronic pain and I have been trying to deal with it all, still trying but that is all something else.
Thank you for getting back to me, it can be quite an isolating experience living with chronic pain, it is very hard for people who don't suffer to understand it especial with nerve pain as it is next to impossible to describe!
I am doing a little better, I have gotten more used to the new pain, my pregaberlin has been increased to the maximum dose for my weight (makes me want to put on some weight lol!), it is such an expensive drug, my GP and I ended up talking about it when I saw him as the computer system flashes up a warning about the cost of it when he enters the increased dosage. We worked out that last year, on my lower dose it over over 7K just for that drug alone, unlike gabapentin it is not available in a generic yet hence the cost, makes me feel a tiny bit guilty as I haven't been able to work enough to pay national insurance and tax for 8 years, but then I think how much of DH's wages go out in taxes and feel a bit better about it!
I have also been re referred to the pain team as a year ago I did a pain rehabilitation course run by the physio department, it was really good and taught me some really useful stuff and clarified things like how to pace, something I have always struggled with and got me thinking about my own needs a bit more, I have a much better social life now as I know it does me good and I am able (mostly) to pace better so I am not completely spent by the evening, however, doing the course automatically discharged me from the pain team (I bet that's all due to them needing to manipulate figures for targets) so it now needs to be done as a fresh referral, luckily the never seem to be long in getting me in. Only the pain team can adjust my Oxycontin and oxycodone, my high risk pregnancy team were able to do it to but my GP understandable just won't touch them so I have to wait it out, I am better for more pregaberlin though.
My hands don't seem to have got any worse in the last few weeks, my typing is still way, way off and I am dropping far more thing (who bloomin' bottle of Dr Pepper today all over the stable yard!), good job I don't have a small baby any more or have to do fiddly this like nappies and poppers, trying to look on the bright side.
The GP has given me the non pregnancy depression questionnaire to complete, things have got much more complex because of things happening outside the pain issues that are also having a huge impact on my mental health and my GP (and I) want to try and sort out all the diferent issues and emotions before going to medication so we are in a bit of a holding pattern with that right now, was due back next week but I am not able to go as ds has some medical stuff happening next week, I will go back to him as soon as I can though.
Over the years I have seen chronic pain go from this almost dirty word that had connotations of 'it's all in their heads' and 'lazy doctors' to an area of rapid research and breakthroughs.
Back when the chronic pain label was fist attached to me nearly 10 years ago in a big city and specialist hospital in Liverpool where I lived at the time there was one lone pain consultant, he ran himself ragged, was the butt of in jokes among doctors and did every single procedure himself from nerve blocks to acupuncture because he couldn't get the young doctors to come work with him unless they had no other option. Now things are so different, I am in Oxfordshire now which is also as it happens home to the very first ever pain clinic, over 100 years old I think, very well respected, large staff, it's own clinic suite, a full range of services from on call pain nurses who patients can call when ever they need advice to psychologist and physiotherapists. I know the Liverpool service has gone along that way to. Back then you got the label of chronic pain and nobody wanted to go never you (medically speaking) they just left you to rot and said there was nothing to be done now it is properly recognised, research is whipping along and we have far more names for things, chronic pain isn't a diagnosis any more, it's an umbrella term. People are looking into why it happens so they can better understand how to treat and manage it, it is truly breath taking the difference in attitudes and management in 10 short years. All that said, when you are suffering from pain, when you are in a bad time with it not a bit of the above matters, you just want the pain to stop.
I have had so many drug combos I could become a pharmacist I think (medical staff have often assumed I was a fellow medical professionally!), I have done the amitriptaline, was on gabapentin for years prior to shifting over to pregabalin because maximum dose just wasn't doing anywhere near enough any more. That family of drugs are a shocker to go on and change doses, I had to come off gabapentin when I was pregnant as it can cause birth defects if taken in the first 2 trimesters but by the thried trimester things were so bad for me both time that I had to go back on, as I had a toddler at home with my pregnancy with ds they had to admit me to hospital to manage my pain and to put me back on gabapentin, they didn't feel (and nor did I) that it was safe for me to be at home while upping the dose of gabapentin!
I guess what it comes down to is that over the years I have become extremely aware that even with the advancements that have been made there is really a very limited amount that can be done for me, you can't get a nervous system transplant (always on my Christmas list though!) so it is down to physio and meds, there is only so far you can go with meds, I am on the strongest types of meds so all that can really be done is up the dosages or possibly change type. I find it very depressing the idea of my medication just having to increase and increase, never to reduce, I suffer and muddle on longer then I probably should because every time my meds are increased I feel a bit like I have lost a battle. When I had to go on morphine, so the start of the opiate road, I cried for days, I went to my pain doctor and I shouted and cried at him to please help me but he didn't have anything else left, I have tried almost everything from nerve blocks (worked to short a time to be viable as the risks were also high) to acupuncture and homeopathy to no avail. I hope the new research will as well as the understanding it is giving be able to give more new treatment hopes in the future but until that time I and all the others just have to sit tight and do our best.
Sorry for the massive post. I am rambling I know so I would be surprised if anyone managed to read it. Thanks for the time if you did get this far though!