As I mentioned in my 2017 highlights post, my health went dramatically downhill last year so I thought it would be worth posting an update about what actually happened and is happening I wrote this all out & realised how LONG it was, so I've split it into months to break it up a bit!
Early 2017
I was referred to the Rheumatologist again in the first half of last year because I was experiencing a lot of neuropathic pain and no GP I saw would prescribe me anything for it or increase my Gabapentin. I take 1800mg of Gabapentin a day, which was last increased in October 2016. It took until June for this appointment to come through. The Rheumatologist suggested 2 meds I could try and referred me to physio as well.
September
Despite the fact that I saw the Rheumatologist in June, the letter from her didn't actually arrive until September. By this point, I was in considerable pain that was lasting weeks in one body part before moving to another. I started on 30mg of Duloxetine once this letter came in. I also arranged with work to change my work pattern to the afternoons, as I was starting work at 9 but was struggling to get my pain under control in time to get into work and was suffering with bad insomnia due to the pain so was getting very little sleep. The change in hours DID help, but by this time I was in so much pain that it was too little too late really.
October
Towards the end of October I finally had the Physio appointment that had been requested in June. This was actually one of the most useful medical appointments I've ever had; the physiotherapist did a really thorough examination, pointed out how weak all my muscles are (though ofc I did know this) and gave me a really detailed series of stretches I could do to help improve this weakness. I asked for stretches because I have actual exercises from a previous physiotherapist but by this point my body was too weak/in too much pain to do even them. The stretches are much easier for me to manage, though extremely painful because one side effect of my condition is that all my muscles tighten up. The physiotherapist also booked me in for a course of hydrotherapy.
November
Unfortunately, at the beginning of November the nerve pain got so bad that I was unable to go to work. I was experiencing it in my hands and forearms, my lower legs and my right thigh most of the time and it was unbearable. I really struggled to get this pain under control and often it didn't alleviate until mid-afternoon. 3 GPs refused to increase either the dose of Duloxetine or Gabapentin and so instead I ended up not working for the whole of November.
I had started my hydrotherapy at the very end of October and while each week I could see an improvement in my ability to do the exercises, it left me exhausted and in pain to the point that I had to spend most of the rest of the day asleep and all of the next day bed-bound.
December
By this point I wasn't doing much better. When I had to get my next sicknote I managed to speak to the only GP at my practice who I think is reasonable, and he agreed to increase my Duloxetine dose (he actually told me I should have been started on that dose *eyeroll*) and he also agreed to refer me to the pain management programme at a nearby hospital, which a previous GP had refused to do. I have high hopes for this though god knows when the referral will come through!
January
By mid January I'd had terrible insomnia for over a month...and finally realised it was probably linked to the increased Duloxetine. This is unfortunate as once I'd been on the increased dose for over 4 weeks I could tell my pain had decreased significantly, but insomnia not caused by pain is too much of a price to pay for this; I was suffering from lack of sleep but emotionally I was also suffering from the frustration of simply not being able to sleep, and this had taken a massive toll on my mental health. I switched to Nortriptyline which I was hesitant to try because I had an awful reaction to Amitriptyline and this is similar, but thankfully that didn't happen. I wont know if it's actually helpful for my pain until it's fully in my system.
The GP I saw to issue me a new sicknote agreed to refer me to Neurology because of this pain and other neurological symptoms I have, and I'm hoping that might provide some answers.
February
At this point I'm feeling significantly better than at the end of 2017, though the longer I go without taking any Duloxetine, the more my pain increases. At the moment it's tolerable though I am concerned about what will happen once the Duloxetine is out of my system completely. I feel like the Nortriptyline is making me feel brighter and less fuzzy than I was before; my mind feels a little bit sharper and I'm definitely sleeping better. I'm seeing a GP soon and hoping I can increase the Nortriptyline dose to combat the effects of stopping Duloxetine.
Hope this pain management referral comes through this year - I think I probably do need some techniques for dealing with the pain. Obviously I have been in pain my whole life, but it gets to a point where you're in so much pain and you've been in pain for so long that your ability to cope with it is just not there anymore. I don't know how long the waiting list is for this service but I can imagine it's considerable
Hope I get a Neurology appointment - I've already received a letter to tell me that my case will be assessed to decide if I need an appointment or whether to send me for a test etc. I'd really like to speak to a Neurologist so I'm hoping that's what happens
Maintain my physio routine and add as much other exercise in as possible - I do need to get stronger and I know from past experience that regular exercise does help. So I need to be doing as much as I can without it making me worse. I have been trying to out for a walk at least once a day, even if just for 10 minutes which is a good start. I also want to start swimming again soon.
