Any painkillers that actually work?

I'm currently on tramadol, pregablin, meloxicam, zomorph, dihydrocodeine, paracetamol, and anything else I can lay my hands on. I've been on painkillers for 21 years, since I was 7, and nothing works. I've also been on (over the years), ibuprofen, naproxen, diclofenac, co-codamol, butrans patches, buprenorphine pills, orimorph, and many more that I can't even remember. Even injected morphine has no effect. It doesn't help with my pain, it doesn't have any effect whatsoever- I don't even go high on any of them. I need something that actually helps with the pain, and to be honest, mentally I'm in a place where I don't care what the side effects are. Even if that something kills me, it's better than carrying on like this. Please, help me.

[Bananas5]

Gosh that's almost an entire chemist shop. Bit worried you say...and anything else you can get your hands on. I hope you don't just pop them in as and when and stick to prescribed doses?

There are no such meds as pain killers. Only pain relief and when prescribed correctly with the right cocktail you will get some relief and be able to manage your pain.

7 was a very young age to start tken anything too. Were yoi injured somehow?Or had an illness which required you to take them?

Sorry for the questions but apart from a very long list of meds you give no indication of what they are for.

Again correctly rescribed - no meds should give you a 'high' as yo called it. Some you will react differently too which may cause adverse side effects but your GP will advice.

Have yo been referred to a pain clinic? They will teach you how to manage your pain using meds, alternative therapies, counseling and advice how to manage.

Meantime a little more information as to your conditions willhelp us to point you where to get help.

Pat x

[Hidden in reply to Bananas5]

I'm under the pain clinc, have been for years, they gave me acupuncture. I have EDS-type 3, chronic pain, polymyalgia (no idea!), osteoarthritis, and possibly osteoporosis (docs keep changing their minds). No, I don't stick to prescribed doses, I regularly go over to try and make something work. When I said about the high effect, it was more to do with the fact that so many people who aren't prescribed these things take them like an illegal drug, to get high. I get nothing. No pain relief, no high, no side effects, no addiction, no reaction at all. I might as well be eating smarties for all the effect they have on me xx

[Bananas5]

I can understand your frustration but still can't condone pill popping.

What advice did your pain clinic give you? Acupuncure can ve very successful but like meds - it might not work either. For you it doesn't.

Sometime,if you have been on pain meds for a long time, adice is to take stock and almost start again. Not always an option if you aren't getting any relief from any.

People yo know who are taking meds will get a high cos they don't need them for the purpose they are given. Chronic pain sufferers will know that thse meds won't, or shouldn't give them a buz cos they are working properly. Going where needed to lock messages to the brain

Bit of a loss really.

Tell me again, apart from being unsure of your diagnosis, what GP and pain clinic have said?

Have they eliminated conditions? Xrays or scans to show what they are?

x

[Hidden]

Have had X-rays, MRI, EEG, ECG, ct scans, dxa scans, blood tests, pretty much everything they can think of. Apparently the chronic pain and polymyalgia are side effects of the other conditions. Osteoporosis diagnosis keeps changing because apparently my bone thickness does (no idea how, docs don't know either, maybe I'm just magic ). Pain clinic gave me acupuncture and pregablin- that changed my life, it was amazing. Then stopped working. I went from nothing to the full dose in the space of 6 months. It stopped working after 6 weeks, and upping the dose didn't help. Have also seen a hyper mobility specialist physio who's given me exercises- my core strength has improved, but my pain hasn't. I did stop taking everything when I was pregnant- it made no difference, I was still in the same amount of pain. Started the pills the same day my son was born as I had a c-section, and the co-codamol they gave me did nothing for the scar. When I found out I was pregnant I stopped taking my pills straight away, no gradually reducing the dose. I had no withdrawl symptoms at all. I just want something that will work, I'm not even expecting it to take the pain away, just reducing it to a manageable level would be brilliant xx

[Bananas5 in reply to Hidden]

You have me baffled temporarily

I'll go have a cuppa. That usually resolves everything.

See what the knowledgeable folk on here can come up with.

x

[Chawner]

If you had CRPS you would no that any amount of pills don't get rid of the pain but we try to find things that work but 99% of the time nothing works. Nothing works for me so last week I starting coming off some of them to start another push at a pain management from another route . I have felt terrible and am in so much pain but ... I feel so much more mentally able to deal with my pain. I think I will try and go a while without as many pain meds as I can just so my quality of life is better for me. I hate having to take anything but trust the pain clinics know best but they don't see us very day, week or month so how can they say what will be best for us but they have a pritty good idea as they are the professionals . I trust them even if they can't take my pain away. It's my condition.

It sounds like you like getting attention from taking and have taken so may drugs and pain killers, it's not a game and popping pills is not a clever way to deal with pain successfully .

I don't think you want pain killers and pain meds I think you want to just take as much as you can. You said you might as well take smarties and I think you should try it. Honestly mind over matter. Treat them like pain killers and pop as many as you want, especially the red ones.

I'm sorry about being a bitch but all this but you just don't sound as if your taking this matter seriously and us people with CRPS or many other things take our pain seriously and don't take our cocktail of meds lightly.

Good luck with everything

[Marky]

Hi

Has your pain clinic advised trying some of the topical medications such as Capsaicin Cream or Versatis 5% licodiane plasters?

There are also many procedures which can be done in a pain clinic setting such as a lidocaine infusion, Capsaicin 8% patch, various nerve blocks, joint injections and finally spinal cord stimulators.

Have you ever been on a pain management course? Some of these are up to three weeks Intensive programmes, which can be very rewarding.

Also have you tried any of the antidepressants for pain management, such as duloxetine?

Hope you find something suitable soon for your pain relief.

Mark

[Hidden]

Have you had any genetic testing to see if you have the genes that can process these pain mess? Some people just do not have the genes that process codeine into morphine, therefore any amount will have no effect at all? Worth asking. Don't know if this applies to other mess. Think it's the cyp450 genes, but uni was a while ago now! Hope this helps.

[Curlygirl54]

Hi Shimmergirl,

I'm wondering if you have a specialist who treats you specifically for EDs? My understanding is that EDs tissues process differently eg epidurals don't work in someone with the hypermobility type.

I guess it's hard to see the wood for the trees when you chuck anything and everything at the situation?? Maybe if it's not working, time to pull back, reduce everything gradually and reintroduce selectively under guidance from the specialists of your conditions?

Must admit to feeling worried about the cocktail 😳

Do take care,

Shirley

[Kate-L]

There are some pain killers which will not cure your pain so if you find the pills you are taking to be hopeless then speak to your GP or Pain Clinic and start reducing them. I wouldn't stop all at once as this can be dangerous.

I know exactly where you are coming from, I suffer with PHN (post herpetic neuralgia) following a bout of shingles. It has been with me for the last 10yrs since I had a kidney transplant. I am on Pregablin and Tegretol but neither of these are effective enough. I used to be able to use Lidocaine patches, but since I developed a rash I've had to stop. I've had hot 'chilli' patch treatment, but this is very expensive and only mildly effective for a couple of months.

My pain is only controllable with Oxynorm and its slow release version Oxycontin. They are, however A class drugs and highly addictive with dreadful side effects. Good luck and I really hope you find some peace from the relentless pain that some of us have to endure every single day. Until you suffer, you just don't realise how bad it can get!

[Hidden]

Thank you for your suggestions everyone. I have been off my pills before when I was pregnant, and I suffered terribly. There was a slight improvement when I started taking them again (at that point I was only taking tramadol and diclofenac), but they only worked for about a week before they had no effect again. The idea of not having to take pills is extremely attractive, there have been times when I've been in tears with the pain, but refused to take my pills, because I'm sick of taking them, and I hate that my life is basically broken down into segments of 'pill taking times'. I'm especially interested in the pain management courses, and the patches. Have been on the capsaicin cream and couldn't get on with it, felt like someone had set me on the fire! The nerve blocking injections sound interesting too. I don't see any specialists for EDS, I've always been told there aren't really any specialists as all that helps is painkillers and exercise, but it's something else I will definitely look into a referral to.

As far as I'm aware I don't have CRPS, and I hate taking so many pills, but I have to try and do something to help, even though so far I've had no luck. The genetic thing is interesting, as my Mum is the same- she only takes stuff prescribed to her, but regularly double doses, and gets no pain relief, side effects, or withdrawal symptoms if she suddenly stops one, so maybe it's genetic? Anyone have an idea if the gene testing thing is available on the NHS? xx

[Housesprite]

I once felt like you, desperate for the pain to just go away. It doesn't I am on pregabalin, meloxicam,oxycodone and oxycontin, that is a few of my tablets I am on a lot more but just those for pain. This may sound strange but you have to come to terms with your pain. Even though I take the pain meds. they do not get rid of the pain,they make it so that I can live. I have found that be starting to enjoy my life despite the pain helps. I try to make sure that I have something to look forward to. You may be expecting too much of the medication, if you are feeling depressed or desperate then the medication won't work for you. I have been on pain meds. since I was 16 I am now 49. I have now accepted that I have pain it is part of me but I am refusing to let it beet me. I have learnt to make allowances, if I want to go out I know that later I will be in pain, or sometimes the next day I can barely move, was going out worth it yes. Learn to relax as well, when you are tense expecting pain then of course you will be in pain. Know that you are not alone in this and then look at your children and try to think of what you will miss if you are not there. Be kind to yourself and please take it easy on the meds. You cannot be replaced no matter what you think.

[rowantree]

Many meds don't work for EDS. I don't take anything as nothing worked. I tried most of what you mentioned, but one at a time. Then stopped each when I realised they didn't work, tried another one. The only thing that works a bit for me is tramadol but it makes me so dizzy and spacey that I can't function, drive or think, so I only take it post-operations. The pain clinic can suggest the groups and relaxation and pacing, but as someone else said its about learning your limitations and what you can cope with or put up with. Try to enjoy life and be resolute to the pain. Don't let it control you. Find ways around it- use aids, braces, cane etc if needed. Take care of yourself- have massages, be with friends, distract yourself from it. Have you joined any EDS Facebook groups? There's lots of them, and we are a supportive bunch.

[joanne8john]

Hi Shimmergirl,

I hardly know what to say , you have taken so many tablets, and I am not sure injecting is a the answer , you talk about getting high ,my problem the other day was that the prescription tablets were making me high and this I can not stand,

regarding pain I need to stop my pain not to get high.

I know the pain get you down , I have been there I am on new tablets and I go to the main hospital soon , maybe you need to try pain management to help you ,

[steph_jewel]

I have tried gabapentin, tramadol, cocodomol and morphine but as of December I have been on Amitriptyline and it's the only relief I have had from my pain. I'm on a low dose but I am able to up my dose during the bad patches if needed. It may be something to consider, however antidepressants aren't everyone's cup of tea, but speaking from experience it's worked for me

[keffi in reply to steph_jewel]

I have been on anti depressants since my ra was diagnosed 10 yr ago. I find them very helpful alongside my DMARDS and TNF (BIOLOGIC)

[Hidden]

Amitriptyline, yes, had no effect- didn't help with pain, sleep or depression. Have also been on citalopram for depression, but made no difference, due to the fact the only thing that depresses me is the pain, nothing else. Zomorph am on 60mg 3x day. I can't use any morphine patches as I have a bad reaction to them, I get burns from them- that happened with butrans, fentanyl, and another one I can't remember the name of. Buprenorphine pills (the ones that you dissolve under your tongue) just made me throw up before they'd even fully dissolved. It's a pain, because I'm fed up with taking all the pills I have to take, and I don't really want to add more into the mix. I don't even necessarily want anything stronger, just something that works would be nice! xx

[angelrobert]

I usually use Oxynorm and gradually my pain release out from this pain killer.

[MarsBarKid]

Are you a fast metabolizer? If so chew them up and often not effective as not long around etc. Fast = not able to stay under anesthetist if they stop dripping it. Wake up etc. when lived in UK used to get my teeth done under general and that is when told - have to keep dripping or you wake up. Then an Italian dentist told me same thing re local. Saved me pain of injections for years. Now just say inject and drill or extract a 2 hour local lasts 20 minutes on me. Told an Orthodontist and he gave me a 4 hour one and it lasted 40 mins and he told me, nearly there can see it has gone and only 40 mins etc. Another convert ha ha. Makes nonsense of the doses as for 'normal' folk.

I've been on or tried most same as you. Side effects worse than pain so just stopped taking them and lived with pain plus what helps which is mainly Codeine in form of Norspan patch also called Butran in UK (?spelling) and a synthetic form of the poppy.

Hope this helps.

[TD888]

I think the issue is your body is desensitised to them. When I first took codeine, it absolutely blew my mind how effective it was. I was recently in hospital receiving the max safe dose of codeine and it was about as effective as a glass of water.

However, one thing I have discovered is, if I stop taking one particular drug for a while (Few months will do it) the tolerance to it goes down. When I go back to it and take it (at the safe dose obviously) I find that it works on my pain again.

If you are taking all of the above drugs, try to exclude one of them for a month or so, then see if that one is any more effective after the break.

Good luck to you, I know it's not easy when there seems to be nothing that works.