Originally Posted by whittymjw

I would really appreciate some feedback here, let me know if I'm been unreasonable...if not then what do I do. Thank you for reading

I was diagnosed with RSD 3.5 years (hands/arms then recently spread to legs/feet/head) ago but had the symptoms for 7 years and up until 11 months ago my relief was easily the best it had ever been (this took years of work for myself and in particular two fantastic doctors)

The medication/dosage/schedule was as follows:

dihydrocodeine 60mg X 4 per day
paracetamol 1g x 4 per day
fentanyl 75mcg 3 day matrix patches
pregablin 200mg x 3 per day
liquid morphine 10mg - 4 times per day on the 3rd day of the fentanyl and also as and when I'm way worse than usual
lorazepam 1mg

in case you're wondering about proper pain management teams, I've seen them many times and they seem concentrated on treatments that don't include much medication (great when it works of course).

They did acupuncture which made me worse, lidocaine infusions and then lidocaine patches and some others etc and have basically told me that for now they have exhausted all of my available options

It started with an appointment with a GP that was unrelated to the RSD when the GP told me that they would be stopping the DHC because it is no longer been made so I asked her what we would be doing to replace the relief it provided and she told me to come back after a few weeks - that's a fob off if I ever saw one...

I went back to talk about the DHC stoppage and of course for help as they had not replaced it in any way and they...have a guess....stopped my morphine so I asked the same question about the DHC which was how are you going to replace my relief? he talked about how he's only a GP and that my medication is against the current "GUIDANCE" for neuropathic pain paitients

I was furious and much much worse now because of them. It took me months to get the courage together to confront them about the bad management of my meds (I couldn't have been nicer about it) and when I did they stopped my lorazepam which is the only thing in years that allowed me to get a solid 2.5 hours of sleep which is priceless to me

Their excuse is that I shouldn't be taking it long term and again with all these meds been stopped all they ever say is come back in a few weeks or re-refer me to the pain clinic which is pointless.

This all happened over 11 months, imagine how much worse you feel without those meds and way less sleep and the unfortunate spread of your condition from your arms/hands to your legs/feet/head

I thought I would give it one last try as I'm desperate, I'm at breaking point - I've gotten worse many times now and I can normally handle it with extra exercise/music but all I've been thinking of is trains...why are they doing this to me?

I explained everything to a doctor I hadn't seen before and he referred me to the pain clinic despite them telling me they can't do anything else. He refused to return my meds to my prescription using the guidance excuse.

I used to think doctors were intelligent people but this is silly, surely he knows the difference between guidance and gospel - apparently not. Everybody's different and the moment you start treating everyone that walks through the door like a robot you've failed as a physician

Keep in mind RSD is a particularly painful condition and they're just taking my meds away one by one by flippin one. Now I don't want to write a written complaint as I don't want to hurt anyone's career but what other path do I have when they're making my quality of life so much worse (I explained that to them and it didn't make a difference)

What do I do? (I'm in the UK btw)

(thanks in advance)