GP withdrawing pain meds

lynne108

Hi , my name is Lynne - I have scoliosis and had spinal fusion surgery about 10 yrs ago.  Approx 2 yrs ago I started having severe shoulder and lower back pain and an MRI showed I had trapped nerves in my neck, cysts in the bottom of my spine, and degeneration of the vertebra below the fusion.  This won't improve and is likely to get worse.  After much trial and error I found that a buprenorphine patch worked wonders along with tramodol when it became completely unbearable.  This has enabled me to exercise, keep active and generally gain a quality of life that I'd lost.  Fast forward to this year - I moved and now have a new GP who tells me that these meds are doing nothing for my pain and any benefit im seeing is psychological.  I was willing to suspend disbelief and reduce them and he gradually tapered the patch off.  I have now been without the buprenorphine patch completely for a month and am finding it increasingly intolerable. The tramodol helps a little but nothing like the patch.   I had an appt yesterday with my gp and explained how much pain I'm now in, his take was that it'll take time for my brain to catch up and to try pilates.  I'm finding it difficult to walk to the bathroom let alone exercise!  He reluctantly agreed to refer me to a pain clinic but said an appointment could take months to get. 
Has anyone experienced this?  Should I get a new GP?  Or should I carry on in the hope it gets better.  Surely the lack of exercise will make things worse.  Any comments appreciate very much - am so miserable!

Waylay

Hi @lynne108

Which country are you in? I'm so sorry that you're going through this...

lynne108

Hi Waylay   thanks for replying so quickly - I'm in the UK.

Matilda

I'm sorry you are suffering @lynne108.  I know what it's like to suffer pain.  

I'd change your GP.  If second GP won't prescribe the patch, ask to be referred to a back specialist (not just a pain clinic) - you are entitled to a second opinion.  Your current GP seems to think that pain is all in the mind - he wouldn't think that if he suffered from pain himself!

Osteopathy might help.  Osteopathy has helped my back generally including my spine.  But unfortunately osteopathy is not cheap.  £50 for half hour.  However, I'm now down to once a month, so not too expensive now.

April2018mom

Can you change GP or not? I’d also find a new practice too. 

livonia

I moved to devon and new gp was horrific only interested in my drugs not me or My mh and pain. Sd exactly the same and withheld them eventually a locum wrote my prescriptions as receptionist went to him . I immediately changed practices. I think there’s a trend with gp to remove us off pain meds to be honest. I take as I need not just for hell of it

Adrian_Scope

Sorry to hear that @livonia. Is your new GP any better?

Adrian_Scope

Hi @lynne108 and a warm welcome to the community.
It doesn't sound like a great experience. I think I'd echo what Matilda has said in terms of trying to find a new GP who's more open to your concerns.

skiptonlady

My daughter has chronic pain and her GP wants her to lower her meds saying she is too young to be on such a high dose, the pain specialist was the same, she had hoped to be coming out with something that might numb her CRPS, instead she came out with them trying to get her off meds as she may get addicted, she was crying her eyes out as she'd waited over a year. Reading your post Lynne108 and others makes me think that this is down  to money, why else would they leave people with chronic pain conditions like this? it just doesn't make sense and it is no way to leave a human being

Waylay

I've been terrified that this would start happening. The US "opioid epidemic" hysteria is catching fire here, even though it's all based on misinformation. https://www.rcoa.ac.uk/faculty-of-pain-medicine/opioids-aware

Matilda

Stand up for your rights.  Ask for a second opinion if necessary. It is insanity to keep people in pain for the sake of 'ideology'.  Can't doctors think for themselves and treat people as individuals?  They have had 8 years' training!  Instead they are following bureaucratic guidelines, partly to cover their own backs.

Write to your MP.  I have found MPs very helpful over NHS doctors' bloody-mindedness!

lynne108

Thanks very much for all your comments  and warm welcome- Ive found them very helpful and I've almost certainly decided to try and change my GP.  Like you said Matilda, I've a feeling it's about protecting backs too!    Will keep you posted as to my progress  

Adrian_Scope

Hope it goes okay @lynne108 and thanks for updating us.

Rockfan39

Hi @lynne108, my partner has denerative spinal desease and a total loss of feeling down the left side of his leg due to a disc bulge and nerve damage, he was told an operation was not in his best interest. He has had  two pain clinic appt. He has been on morphine patches and oramorph for the last 3 years, on his last medical review he was told he needed to go back to the pain medication clinic to review his meds and see if there was anything more to help with the pain. On arrival the consultant wasn't there instead we had a physio, nurse and a person that deals with mental health issues, he was told that he was being taken off all his opiates and the physio said the pain was all in his head and that once off all the morphine he would be fine. He also takes nuproxen and gaberpentin, which they said they would also look at reducing and he should use paracetamol as pain relief. We have a follow up appt on the science of coming of the meds. They are saying he will be taught distraction techniques and can go to meeting of how to deal with pain. My partner is quite set in his ways and does not believe in all this mumbo jumbo (his words) I understand public heath England are not wanting any patients on long term morphine but surely if a patient has been on it already and is not been offered any other alternative how is this fair. Also he wasn't put on it straight away he tried lots of different meds before being offered morphine which obviously doesn't completely make it pain free but makes his pain bearable. So saying the morphine makes his pain worse is not true. Sorry for the long post but he feels he is being thrown under a bus. 

Milly123

I would definitely change not just your Gp but also the practice if it's possible. I suspect it's all down to money and other g'ps in the same practice may have their hands tied with regards to drugs and cash flow. I was getting nowhere with the Gp I've had for years. Then on one occasion I had to see a locum that is at the same practice a couple of times each week. He has done more for me in the last few months than my own Gp has done in years. I made up my mind that if this locum stopped coming that I would join the surgery he actually worked in. (I actually asked him which practice he worked at in case I needed to move). Every time I make an appointment now, I ask for this guy. He has arranged for me to see several consultants for different problems, which has led to mri scans in the hope that they will get to the bottom of some of my problems. He has been brilliant. My own Gp put me on some different tablets a few years ago. I kept going back saying that I was shaking throughout my body, (like a pneumatic drill that they dig up roads with). I kept getting fobbed off and being told it was nothing to do with the tablets. I couldn't hold a cup without spilling it or even write properly as I couldn't hold a pen. I saw this locum about these shakes that had gotten so bad that i was even wondering if i had parkinsons, and he immediately told me that he would never prescribe this tablet to his own patients. So, I weaned myself off them and it has been about a month since I finished with them, the shaking has just about gone now. I owe this young locum big time, I can't thank him enough for his help and patience. I'm still in a lot of pain but at least I've got rid of the shakes so that's one problem solved and done with.

skiptonlady

Isn't the whole point of Dr's to keep people out of pain!, it's all down to money, call an ambulance or keep going to A&E, go see your MP, keep fighting, if you stop they have won, what an awful situation you are in