Pain Medication Expectations

[Jo198919]

Hello

I have 2 types of pain - Mechanical pain from degenerative disc disease and nerve pain from trapped nerves.

The pain is in both in my neck where bone spurs cause stenosis trapping nerves and my lower back where I have herniated discs pressing on nerves causing mild sciatica and mechanical back pain.

The nerve pain in my arms/hand and legs comes and goes but the mechanical pain is more frequent and ranges from mild to very painful. 80% of the time is manageable but the other 20% can unbearable.

I was on amitriptyline for nerve pain but came off it as it didn't agree with me and my GP has refused to prescribe anything for the mechanical pain.

I cannot take NSAIDS.

I am in the UK and cannot go out for a day trip etc as I end up in extreme pain after a few hours.

Please could anyone with experience answer the following questions.

1) Do GPs or pain clinics still prescribe pain medication for acute pain to help ease symptoms on a short term basis such as going out for the day or having a short term flare up and if so what? Codeine or something similar?

2) Is pain medication now banned in the UK for anyone with long term chronic mechanical back and neck pain? How are people supposed to cope on a daily basis.

3) Is anyone else getting fed up with GPs and the NHS who seem to say no to every suggestion.

Any suggestions appreciated.

Thanks

[Bevvy]

I take duloxetine for significant nerve pain due to Cauda Equina syndrome and residual sciatica. I find it helpful for my situation and was originally suggested by a spinal nurse. I also have tramadol which I can take for breakthrough pain.

So yes in answer to your question it is entirely appropriate to be prescribed medications so that you can go out for a day. It would also be appropriate in relation to your mental health because it would obviously benefit you to be able to go out for a day and not unreasonable to want to.

On this site I have read mixed views on pain clinics but if you believe your gp is no longer able to treat your situation then I would have thought a referral to a pain clinic would be sensible. Certainly from what you have posted it doesn’t seem that gp can give any further suggestions re medication which is unfortunate. There are lots of different medications used for people who have pain and it is often a case of trying different types until something helps.

[Jo198919 in reply to Bevvy]

Great, thanks for your reply Bevvy. I didn't think it was unreasonable to ask for medication to take the edge off things on a day out or during a flare up but anything remotely addictive seems to get the thumbs down these days. It is good to know others have been prescribed suitable medication to help their pain.

[Viklou]

I take pregabalin and tramadol, I I can't stand or walk for long. I've got idiopathic lumbosacral plexopathy wit also severe stenosis of my lower spine. I have been referred to yhe pain clinic and seen them once. They have consulted with my Neurologist and I've been referred for physio and also neuro surgeon which is taking a while to be even triaged. I will chase this up. Anyway I would speak to your GP and get a referral to the pain clinic as they will then lead on your medication

[Jo198919 in reply to Viklou]

Great, thanks for advice Viklou, I will ask my GP about a referral to a pain clinic.

[Angelcat1]

hello good morning

I’m Cat I have exactly the same as you I also have fibromyalgia and restless legs syndrome

I have been on oxycodone for years because I refused to leave the hospital until they helped me

All of a sudden last November I had a flare up and a doctor who wasn’t my doctor started a reduction in my oxycodone liquid took me off dyhydrocodine now I’m back to square one I rang the dr crying saying I feel like ending my life and they won’t help me

It’s cruel what they are doing to people coz I can not cope what do they think once you medication is reduced your pain will go away well it doesn’t I can assure you I’m sorry your going through this your not alone I can hardly leave the house any more xx xx

[Jo198919 in reply to Angelcat1]

Hi Angelcat1. Thanks for the reply and I am sorry to hear you are still in pain. I agree it is cruel to leave people in pain and I hope they get this sorted for you soon.

[110201]

sorry to hear of your predicament and subsequent ongoing pain, have you been assessed for surgical intervention to free up the nerves and physio for the mechanical pain yet? I certainly don’t think it’s unreasonable to request some form of pain relief to assist at difficult times etc. I wish you well and hope you get some form of assistance with your situation x

[cyberbarn]

Pain management clinics can prescribe pain medication, and do treat mechanical pain too, or at least they should.

My son was referred to the pain clinic and I was wary because most people say it is useless for mechanical pain and that is the kind of pain he has. But the consultant was good, accepted that it was mechanical pain, and took us through the treatment available for it. She did also refer him to the psychosocial treatment, but we will cross that bride when we get to it!

So it would be a good idea to ask for a referral to the pain clinic, if nothing else they will give you the options available to you.

[Jo198919 in reply to cyberbarn]

Thanks cyberbarn. I am also wary of pain clinics but sounds like you had a positive experience so I will ask for a referral and see what happens.

[Bantam55 in reply to Jo198919]

I would get your GP to refer you to a Pain Clinic asap, I am on the waiting list and been informed can be a minimum of 12 months before you get an appointment!

[BleatingsheepMAA]

I have both conditions and have spinal injections every 6 months. Ask for a referral to the local pain management team. Also I take a stick which opens into a seat. As the pain is beginning, I am able to sit down and rest for a few minutes which helps.

[OSTEOARTHRITISRA]

Hi yes the do still prescribe pain meds the gp The pain meds long term are not banned

Lots get repeat prescriptions with upto seen 11 items

You do get fed up sometimes sure lots been through this at some stage

Your pain should be treated

The pain clinic can suggest pain meds etc or treat etc sometimes with gp etc

Pain clinic is mixed views as well if meds needed they also like to reduce

Id not buid my hopes up fully on a pain clinic

It is very mixed views

Pain meds every one is different

And can take years to find right pain meds etc sometimes

Lots pain meds mixed low dose helps

Sleep should be sorted as well if effected

Codiene yes widely available

Also pregablin for the nerve pain usually that or the gabepentin if side effects OK

Fentynal patch low dose

Paracetamol helps all the pain meds work better and usually starter point then add ons if you can take to them

Can get on repeat also 1 to 2 month repeat prescription if long term

I'd have it out with gp or maybe change gp if possible

[Inpain5]

The pain clinic referral may open other doors for you to try. Psychology, Acupuncture etc.There is a residential NHS unit in Bath, search for NHS chronic pain Bath or this link.

ruh.nhs.uk/RNHRD/patients/s...

Is hydrotherapy available to you ?

So many books out there. This one was written by someone in the NHS which makes it so much more credible/relateable.

amzn.eu/d/f6X8S6e

Hope this helps.

[Jo198919 in reply to Inpain5]

Thanks Inpain5 - I will ask for a referral to a pain clinic. I haven't come across hydrotherapy but will check it out.

[sharonmt]

I'm lucky to have a good gp most of the time. I've been under a few consultants for different things over the years. I turn it back on them saying would you cope with a pain score of 10 all day everyday then it ramps upto 20 when standing up.I another explanation was if someone stuck a knife in you and kept on turning it round would you cope trying to work like that. Research is all very well if it fits into there box. Medication works for somepeople and not for other, just need to find one that works for you. Yes they don't want to give meds out for insit you will only take it when in pain and you willet the know if it works or not.

Good luck with getting help x

[Jo198919 in reply to sharonmt]

Thanks for the reply sharonmt and I hope your condition improves.

[Whoturnedonthelight]

I feel that way and live in the US. Keep asserting your needs. I blame the problems on the MBAs with little direct medical experience at the top of insurance companies but whatever … We have to voice our needs, desires and challenges as I know I have to be President of my own country or the Captain of my own ship.

For what that’s worth to you - and me.

[AML80]

I have disc degenerative disease amongst other things and injections to kill the nerves work well unfortunately they grow again but that takes several years. this is done by the pain clinic.

[strongmouse]

Hello Jo198919, I have osteophytes in my neck which can cause pain down my arm especially the right one from nerve impingement and spondylitis. I find learning how to move the top of my body rather than my neck helps to minimise this. I also have disc problems in lower pain with pain radiating down my legs. I have prescription for co-codamol and for the nerve pain I take a low dose of nortyptaline at night (it makes me sleepy). I was given some physiotherapy exercises for the lumbar pain to improve my core strength and they did help eventually after about eight weeks. Pain can be debilitating, but it is possible usually to learn to manage it.

There is no ban on pain medication but there has been advice to doctors to try to limit their use, but mainly where there is no clear cause. I do take the medication regularly but the co-codamol I can increase or decrease the amount I take daily as needed.

If pain is stopping you from living a normal life you need to speak to your GP and ensure he realises how debilitating the pain is.

NICE guidelines on neuropathic pain are clear about possible treatments - nice.org.uk/guidance/cg173/...

[Jo198919]

Hi strongmouse. Thanks for the reply, your condition sounds similar to mine and it is good to hear that you have found a solution. What strength co-codamol do you take? I have only tried the OTC 8/500 so I assume the prescription is much stronger.

[Mitch48]

Hi there,

I find it unusual that you haven’t been offered Gabapentin/Pregabalin or Duloxetine for nerve pain by your GP. It’s something that you can ask for.

Such a lot of people with spinal injuries have some sort breakthrough pain as neither opioids or the drugs given for nerve pain fully take the pain away. I’ve got cervical & lumbar spinal injuries which began 20 years ago, have gotten worse over the years (which not everyone’s do) and have always had breakthrough pain (but not always something to help relieve some of it). I’ve had ACDF’s x 2 for disc prolapses which quickly resulted in developing cervical radiculopathy (C5/6 & C6/7), along with a PLIF, 3 x Foraminotomies and 3 x Laminectomies for impending cauda equina and spondylolisthesis of 2 vertebrae. I have severe chronic pain affecting the vast majority of my body, oh, I nearly forgot, I also have cervicogenic headaches. My mobility is affected by the lumbar radiculopathy I developed at L3/4 & L4/5, as well as having a numb right foot & lower leg, my left foot is partially numb. I also have the occasional fall.

I have a 75 mcg Fentanyl patch, Oramorph, 2700 mg Gabapentin, 200 mgs Baclofen, 120 mgs Duloxetine. I don’t take Amitriptyline as it can raise my fall risk & Naproxen no longer works as I’ve taken it for nearly 19 years.

I’ve been told by several doctors that I have both high a high pain threshold & tolerance, I suppose that’s due to the levels of pain I’m in & the many years of having it!

I’ve had some success at the pain clinic with Radiofrequency Ablation of the nerves but if you decide to ask for a referral to one, you may potentially start with more basic treatments such as injections along with physio, acupuncture & psychotherapy, all can be extremely beneficial. Its best to start with an open mind about pain clinics as I’ve found that it’s down to the doctors who run them along with what you’ve tried before, meds & therapy wise, evidence of injuries/diseases etc and your willingness to try anything to help with your pain.

Do you do any of the following, yoga, mindfulness, meditation, gentle walking, swimming or anything else to get your body moving?

Do you use a Tens machine? What about hot or cold treatments?

Good luck!

Kind Regards,

Mitch

[Poppy_Ann]

Hi there, I suffer from long term pain which started in 1976 after an accident my back is broke in 4 places and all of my joints are damaged i take :- 1. Dihydrocodeine 120mg twice a day when they are in stock.

2. Pregabalin 150mg capsules

ONE capsule TWICE daily

3. Nefopam 30mg tablets

take two 3 times/day

4. Amitriptyline 50mg tablets one or two To be taken Each Night

5. Omeprazole 20mg tablets

take one daily these are to prevent me being sick whilst asleep.

6. Simvastatin 40mg tablets

take one at night

The first 4 are just for pain relief.

I could not manage without the first 2 as after a couple of days I would be on the floor screaming.

What caused your pain to start with?

Good luck to you finding something that works for you.

Regards Poppy Ann