Pasithea · 13/02/2022 15:58
I have recently had my main painkillers stopped because it is no longer suitable for use in the community. As a result of this I have lost all my quality of life. I was very very active before this happened.
Have any of you been affected by this. Surely I can’t be on my own.
SpinningTheSeedsOfLove · 13/02/2022 21:50
Can you give some more information?
Where are you - England? Have you seen your GP about this face to face, had a proper medication review, asked for a 2nd opinion, contacted your practice manager and/or the senior partner, that kind of thing?
My GP practice routinely stops medication without notice; and after a phone appointment to discuss things, I've arranged something - either reinstatement under conditions, or an alternative.
It's bloody hard going though.
Pasithea · 14/02/2022 11:30
I had my medication stopped by a consultant at hospital. But he does not see outpatients and he refused to communicate with us for over a month. My gp is refusing to reinstate it , and I have been told not to go to two local hospitals for pain relief as a and e don’t deal with that. I’m waiting for a second opinion but it can take 35 weeks I’ve been waiting since December. I am now stuck in bed, no life at all. My husband struggles to do everything . I’m in ne England.
Bagelsandbrie · 14/02/2022 13:27
What particular drugs are we talking about and for what conditions?
I have lupus and have Tramadol on repeat and Cocodamol 30/500. No questions asked. They know my pain can’t be cured by other means so GP is happy to prescribe what I need and I don’t over use, I only use them when I need to.
Can your Gp not help?
Pasithea · 14/02/2022 16:12
My illness is hereditary been on and off opiates since I was a child. I was given morphine injections to get via nurse. On them for 5 years then they stopped it and all my other painkillers before Christmas on the say so of a pain doctor I met briefly in hospital.
Akire · 14/02/2022 17:10
If you are in severe pain I would always go to A&E. if you live with chronic pain you know your own limits. Regardless if GP saying not to go to hospital. You shouldn’t be left suffering with no contact or support in place. It should trigger a review or referral at least.
Bagelsandbrie · 14/02/2022 17:56
I was given an alternative but it is on my allergies list. I was told to get used to it. I tried it four times and was rushed to a and e each time. No support. Of any kind.
This seems very odd. On what basis are the hospitals refusing you treatment?
RainbowZebraWarrior · 14/02/2022 18:01
The only thing I can recommend is looking up NICE guidelines for the recommended treatment of your particular genetic condition.
I have a rare genetic condition and am supported by the charities that exist for the issue. They are super helpful. So in my case it's EDS UK. But there is usually a dedicated charity covering most medical issues. And most have helpline numbers. EDS UK for example will look on their system and recommend EDS aware consultant in my area.
thesootherfairy · 19/02/2022 17:14
You can pay to see a Pain Management Consultant privately. I'm absolutely certain they would reinstate all your meds and write to your GP for continued prescriptions.
This is not on at all! I suffer from an autoimmune mediated arthritis and NHS pain consultant recommended codeine as the one which messes your body and mind up the least (out of NSAIDS or pregablin etc).
This is horrible. I'm sorry. PM if you like. If you're in Kent I can recommend a Pain Management consultant.
Bananaman123 · 19/02/2022 17:49
They took most of my partners meds off him to the point he was in agony. They decided to take him off liquid oxy and put him on tablets without discussing meaning it took days to sort out, he was on liquid as he had a stoma and the tablets came straight out. He was in so much agony this last year he made the decision to have no more treatment and ultimately passed away through kidney failure.
He had constant calls with the gp, mental health and pain clinics but they didn't do anything that helped him. The palliative care team said they will keep him comfortable but in reality I had to keep buzzing for pain meds for hi and something to help him relax. He waited 4hrs for pain meds one day. Don't get me wrong the nurses were amazing but the ward was just so busy they only came to his room if we buzzed.
Pasithea · 18/03/2022 15:49
Thank you for the replies.
I was taken off all my opiate painkillers, without consultation. I then went through withdrawal with no help or support.
I currently am bed bound . If I need to go out to appointments I go in a wheelchair. I have absolutely no quality of life . Can’t see how I will get better. What I have is incurable.
BlanketsBanned · 18/03/2022 15:56
That sounds awful and its not safe to just stop opiates, this is all thanks to dr Shipman. Do you have a specialist nurse or been referred to the pain team, I would either go private or even speak to a local hospice for their advice. What about long acting morphine tablets, liquid or patches instead.
Pasithea · 19/03/2022 09:01
I cannot take oral morphine or patches. That is why I was on the injections.
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