I’m just wondering if anyone has any advice on how to help with nerve pain? I’m currently on gabapentin and naproxen and I have been given oxycarbazepine to take when I have “severe breakthrough pain”. However this just makes me feel tired after taking one so I can’t take it when I am working, which seems to be when I’m most in pain 🙃
I have tried acupuncture and at my last session we spoke about maybe stopping this as it is clearly not doing anything from a pain relief point of view.
I’ve had a C2 nerve block which didn’t work, apart from causing more pain to the point that I looked like a ghost.
My pain specialist has said there are only 2 more drugs to try (which the oxycarbazepine is one of) before we have run out of options altogether. Which I won’t lie, being told this at 22 is a little bit disheartening, how the hell do you put up with pain for another 60 years when you’re tired of it already?
The only thing I have found that helps is icing the affected area.
Please let me know if there’s anything else to try for the pain.
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When my wife had hip replacement surgery, there was quite a bit of nerve damage. She was prescribed several pain drugs but also amitriptyline. That worked pretty well for the nerve pain and the surgeon told her to take 100 mg of vitamin B6.
thank you for replying! I’ve had amitriptyline prescribed in the past but unfortunately it made me extremely tired/drowsy and didn’t do anything for the pain. I’ve just had a multivitamin arrive which contains most of the B vitamins so I’m hoping this will help
I’m something the same as you. Nerve pain in my ankles. Pain is torturous. I’ve taken every tablet possible. Biologics as well. I’m trying a new one but 4 months in it not helping. Had 3 mri scans all clear. Amtrip helps me to sleep but when I wake up pain is back. Steroids to did help in the beginning not any more. I was thinking of going private but it expensive even for a consultation. I’m like you I have no answers.
I’m sorry to hear you’re struggling too and not seeming to be getting any answers.
With you saying that it’s in your ankles have you ever tried the pacing techniques that I’ve seen mentioned else where? I don’t know if it would be any good for you but I suppose anything is worth a try!
Here’s a link to one of the leaflets from the nhs, I don’t know if different county’s have slightly different advice but I’m sure it’ll roughly be the same across the board.
I take Pregabalin for neuropathic pain which works well. A doctor told me it is a modern wonder drug! It was important to get the amount right at the beginning. For very occasional extreme pain I take Tramadol.
when I first started pregabalin it was absolutely amazing, the pain completely disappeared. Unfortunately this only lasted for a couple of months before it started creeping back and seemed to become more and more painful
I feel for you so much, I’d say I’m better than I was mentally a few years ago but I’m still far from good. I had several serious spinal surgeries on my neck, it’s all metal now and the resulting medical trauma has left both my arms with horrible neuropathic pain & difficulty using my hands. There is other pain both nerve & mechanical, but my hands are like they’re in boiling oil 24/7.
Like you I was left feeling how can I live like this? Mentally broken. I did a pain team “Coping with Pain” online course which pushed mindfulness & exercise (lots on NHS sites plus YouTube) as well as acupuncture & Tens machine. My meds are still in flux but mostly settled on Gabapentin, Nefopam & Paracetamol then at night Noritriptyline too to ease pain & help sleep. Been a pull to get folk away from opioids like the dihydracodeine that I was on for a few years for people with chronic pain but I found it helpful in early days of my pain. I’ve been told by Pain doctor not much more to do, just try to find mental strategies like daily gratitude or journaling to get your frustrations out but you just need to carry on as you’ll never be rid of it. I’m still working on that!
thank you! I didn’t know that pain courses even existed! I shall definitely have a look on nhs sites and YouTube for them.
I’m currently on quite a cocktail of medications, gabapentin and naproxen being the most consistent ones that I take every day. Then I have oxycarbazepine and co-codamol for breakthrough pain.
It’s just soul crushing to be told that there’s not much more you can do before you’ve run out of options.
I shall definitely try having a go at journaling too.
sounds like you've had a rough run and probably know as much about your kind of problems as anyone.
Accepting that you've probably tried several bit of this with alternative thats all I'll bother saying on painkillers is if it reduces pain so its something to deal with in life rather than being your life then its worth taking. Even if its likely a placebo. Plenty of people say faith helps them enough.
The doctor isn't the expert though. Pain is too subjective for modern empirical practices so if you keep suffering you must be an addict or delusional. I've been told and accepted the diagnosis that a consultant wasn't worried about my pain leaving me unable to sleep, suicidal and sobbing. He meant that it would pass and it did. But if I'd left him in that much pain with so little regard I'd hope I'd be in prison.
All I've really learned is to avoid saying 'ive tried that it didn't work '. Pain perception, tolerance and its effects are so variable that anything is worth another go if any one other factor could have altered.
Keep going and it'll get better. Then worse again. But then....
You are doing the right thing exploring. The only way I found any help was to keep reaching out and different possibilities kept popping up when I least expected it.
If it is 100% sure keep searching til you have a proper diagnosis. A lot of problems get labeled nerve pain when it could be something else such as tissue damage that has nerve pain or another cause.
A note on acupuncture and practitioners, one thing I can share from experience is how very different each practitioner is.
There are different styles of acupuncture and the practitioners themselves are completely different.
There is also dry needling in the event your pain is coming from tissue damage
Also, a rare but used technique is HydroDisection which is a doctor injecting fluid to stretch tissue in order to break up any scare tissue. This is done injected with any surgical numbing agent such as bupivacaine (longer acting)
I have been skeptical in the past as to whether or not it’s nerve pain, but my ENT specialist hasn’t found anything and cannot find anything, I’ve been for an MRI which came up clear. My pain specialist has done the nerve block which didn’t work and has said that medication is the only option left apart from seeing a psychologist. I’m currently on the waiting list to speak to one but the list is that long they haven’t even mentioned how long I can be waiting.
I’m always on the lookout for something new to try. The hope is still there but sometimes I just lose it a little.
At 22 its very hard.The neck is very vunerable so think neck before you move.Enquire locally if there is a well thought of Bowen Technique [private] Some can be very good.I.ve suffered from myofascial nodule pain since 2006.All I can offer is keep searching and asking.I was lucky and found the right consultant for a diagnosis which is half the battle.Try and keep healthy .Use the internet but be careful about spending money.Create the best sleep position [imperative with neck problems]My daughter with arthritis and fibromyalgia finds keeping a scarf around herneck keeps away draughts etc And if possible in this day find a GP and Pain consultant who have real knowledge of your area of pain Thinking of you and don't lose hope.Science moves forward all the time and pain trials are ongoing at various hospitals .I had three exploratory ops to find nothing visible.Good luck my love,from a fellow traveller[at 81]
I don't know the cause of your neck problems, but years ago I picked up a couple boxes at one time and carried them a short distance. When I put them down I felt and heard a pop. I had herniated a disc in my neck. Luckily I was young enough that sleeping on a cervical pillow and not picking up more than 10 pounds allowed my neck to heal itself over a couple years. I still sleep on this pillow (a new one every year) and limit what I lift to 10 pounds. This may work for you?
sorry to hear how much you’re suffering. There are definitely other drugs you could try - if your pain doc not helpful you could always try another one. I take pregabalin and Tapentadol, which is an opioid, but less commonly used - I take the constant release one and also have some quick-acting ones for breakthrough pain. I used to be on Fentanyl for many years and I really miss the good sleep I had on that! Had to change over tho as it stopped working after 7 years
The other thing I’d suggest trying is Craniosacral therapy I found that helped me more than acupuncture
Hi, can I ask how long you've been on the opioids please, and have you found them requiring to be upped, hence the risk of becoming addicted? Thank you
I was on Fentanyl for about 7-8 years and it was fine, but then after that the patches started wearing off very quickly (ie I'd need to change patch every day instead of every 3 days) so I found a pain doctor who suggested transitioning to a different opioid - the Tapentadol, which I've been on for about 4 years. I haven't noticed any issues with that, apart from it giving me sleep problems - although I am unusual, apparently for most people it makes them sleep really well! I guess they all have side effects. Though I had the least side effects with the Fentanyl.
When you say that the nerve block didn't help, do you mean a trial injection of lidocaine in the facet joints of your neck?
I had two rounds of those with astounding results. All the pain was gone at least in my neck for about 2 hours. Then the lidocaine wore off and the pain came flooding back like it was right after surgery.
So I had my expectations up for radio frequency ablation but it's been 5 weeks and I haven't noticed any benefit. Seems like I may be the 25% that fails.
I'm 35. It's something that causes me a lot of despair and sometimes depression, the pain. I am 4 years post-op. Tried acupuncture, dry needling, physical therapy, chiropractic, and the only one that helps significantly is deeeep painful massage but it's expensive.
Drug wise, I don't take anything regularly for the pain because the pain is 24/7 and it doesn't seem like there's anything that would help without diminishing returns. The tightness in my neck and shoulders which is caused by my nerve pain creates migraines, and I take several things for those. Naproxen, nurtec, fioricet, prochlorperazine. Botox injections once a quarter.
Now my pain Dr. wants to try an occipital nerve stimulation implant. It's only supposed to help with the headaches and not the root cause which is the nerve pain so I'm not interested.
with my nerve block it was the full procedure, I’m unsure of what it was that they injected but I believe they did the radio frequency ablation at the same time too (if that’s when they burn the nerve).
It did absolutely nothing for pain relief at all, however it did manage to cause a lot of pain. I was drip white for about a week afterwards and spent almost everyday crying at some point.
I’ve been thinking of going to a chiropractor next to see if they can do anything. Although I have doubts as the my pain is in my ear and not my neck. I believe the specialist went into the c2 as the nerves are all connected within that area.
That sounds familiar. We're both special (didn't benefit from RFA). It did leave me worse off with lots of low neck pain.
In my case the pain is neck no doubt. So I know the problem, but have no tools to solve it. For you, it sounds like it could be worth exploring other possibilities. It's unbearably painful if someone massages below my ear (where it meets jaw) so I winder if you'd feel any change from there.
the pain it leaves you with is horrific isn’t it! I’m due to see my ENT consultant this coming Monday so I will be nagging him again to make sure (again) that he’s confident there’s nothing he can do. He’s the one that referred me to a pain specialist in the first place, as he couldn’t find or see it being anything else. Since he’s said that though I have had him send me for an MRI, which unfortunately showed nothing to be of concern. But like I said I’m going to double double check again this time. But if not it’s definitely looking like nerve pain, as both ENT and pain specialist are convinced it’s that.
I had the same thing with the nerve ablation – it gave me so much MORE pain and this went on for months after! But I had a similar reaction from some injections I had - but I think for me, that my body has become oversensitized from all it has experienced, and sees any intervention as an attack, and therefore overreacts.
Hello Ghostsleath, I too am on Gabapentin among lots of other tablets including MST slow release Morphine and to "top up" when pain is at it's most severe, which is most of the day and night liquid Morphine. These tabs do help I have been on Gabapentin for over 20 years now also with Baclofen, Clonazepam, Diazepam (for spasms), Venlafaxine for chronic depression, plus the 2 types of Morphine, also not forgetting Lactulose which is needed believe me after taking this lot.
I have chronic back pain which has now got me walking almost bent right over, but like you have had the facet joint injections which didn't touch the pain, neither did the hot and cold treatment, they tried physio and acupuncture, even went to pain clinic with lots of other men and ladies we all had the same problem but each of us some treatments worked better on them, a few of us nothing worked hence all these tabs to try/keep this horrible pain away, but it does I think vary with the weather, as the pressure rises you do feel it in the joints same as when the pressure drops.
Nerve pain is one that some treatment works for some but not others, but like you and these lovely people here have found what works for them, am guessing and hoping that you will find something that helps you.
I can honestly say that this is the right place to come as the people here know and understand what you are going through, and someone will always be here for you should there be anything we can help you with.
Take care and please ask anything you would like to talk about. xxxx🙂
it’s genuinely refreshing to hear from people that also suffer with chronic pain. I’ve nearly been driven insane with people around me that do not understand it one bit saying “you have to push through it” “stay positive”.
I think if I hear the word positive one more time, I’ll scream 😂
The only thing that really helps at all is putting an ice pack or frozen gel pack on to the area and freezing it to the point that everything is numb. Unfortunately it’s not really a feesible option as I can’t really walk around with an ice pack on 24/7.
I’m going to speak to a chiropractor and see if there’s anything they can do to help, even though the pain is in my ear. I’m willing to try anything right now.
Thank you so much for your advice and for being so kind! 😊xx
I would suggest also trying a Craniosacral therapist - they are very gentle and are meant to be good with things in neck/head. I see one once a week when I can and it helps more than some of the other stuff I tried. Though you may need to try a couple of different people to get the right fit - the first person I tried, I didn't feel anything at all, but the 2nd was amazing.
I'm sure this has already occurred to you, but it dawned on me after a few years of my troubles beginning that I saw a muscle specialist, or a nerve expert, or bone consultant but that's not how problems occur in the body. Symptoms may be a stiff neck but are caused by the way you sit at work because you prop up your swollen ankle caused by a circulation issue. But the neck guy wants to fix you so doesn't dig enough and you don't see any connections so don't say about it.
Epiphany for me was realising the nerves run through and with the muscles/soft tissue, get strained if ligaments have issues, are affected by inflammation which could be otherwise invisible and worst of all they are the body system which lets your brain detect what the body is experiencing.
I suffered with groin and bowel issues and then years later circulation and grip in my hands. Both were skeletal spinal issues treated initially by sorting out muscular problems.
Gabapentin for about 2 years, which did help with my pain, to a certain extent, but made me into a zombie. I saw a specialist pain consultant, and she changed me to Pregablin. It is the same family of drugs, but the side effects are less severe.
I also take amitriptyline at night, which helps greatly with nerve pain.
Now you are going to think I am mad, but hear me out. I have serious damage in my back/spinal cord, that is also debilitating, on top of Behcets and Fibro. I have an implant in my back and copious amounts of meds, but still in agony.
One of my consultants told me to try cold water swimming, as it is clinically proven to reduce pain, and boost the immune system.
So, every morning at 6.15 my husband and I take ourselves down the beach for a swim. It really does make you feel good and helps with the pain.
Don't get me wrong, some mornings I have to literally peel myself out of bed, and it isn't a miracle cure, im never going to be pain free. I think mentally it helps boost my mood, which in turn, also helps deal with the pain.
Lastly, if you havent already, ask to be referred to the pain management clinic near you. They offer coping strategies/courses, counseling and advice, and you get to meet other people, like yourself, living with pain, and it's just so nice to meet people who can totally relate to what you are going through.
Good luck, i really hope you can find some help and relief with your pain
I don’t think that’s mad at all! I love swimming as it is and would definitely give that a go. Ice helps me out quite a bit normally so I think cold water swimming could definitely help.
As for the pain management clinic, I am already with them but the specialist hasn’t mentioned anything like a course or coping strategies really, just medications the nerve block and a psychologist (I’m on the waiting list but it is hugeee).
So I will be asking things about that next time that I speak to them.
unfortunately with the way things are in the NHS now, you have to become your own secretary, and do all the running around/chasing/research yourself. It can become very frustrating, as it is the last thing you feel like doing when your in so much pain.
How is your GP, are they supportive, and happy to refer you on to suitable clinics etc?
Having cold showers/ice baths are also good for well being. I do the cold shower, but not brave enough to try the bath yet!
I’m doing bits of research when I can, just hoping to find something that will work. I’m going to have a look at the pain courses someone else ahead mentioned and see what’s on YouTube about them.
Some of the gps are good and supportive and completely understanding about the amount of pain I’m in but it can be hard to speak to them and the ones I’ve spoken to in the past about it as my surgery has a duty doctor thing where they ring you back, so you’re never guaranteed to speak to who you need to without making an appointment weeks in advance.
I shall definitely try the cold shower and see how that goes.
hi Ghostleath ive been taking gabapentin now for around about 10 years now at first they put me on 600mg three times a day which i was on for about 9 and a half years or so then i was put under a pain management team who was quite shocked because i had not had a medication reviewed since I started taking all my medication the gradually took the gabapentin down to were im now taking 100mg three times a day. You see i got married at the age of 19 and we'd been married for about a month then i ended up been a wife who was beaten battered and se***lly abused for 26years i was pushed down stairs endless times and god no what done but i finally got out after 26years (April 9th freedom) but in them years i spent with him we use to go see my mum and one day walking over to see her i literally couldn't move then i ended up on the path in a pile which my eldest son decided that he would carry me to my mums when we arrived they were straight on the phone and got the doctor out and after a examination he called for an ambulance where i was rushed to hull Royal hospital after an operation (year 2005) to remove the nodule from the base of my spine I went back home then in 2006 it all happened again so i was rushed back into hospital again this time they removed half a disc from the base of my spine afer that they put me on the gabapentin 600mg then when i finally got free in 2016 i was still taking the 600mg of gabapentin but then in the july 21st 2016 i met an amazing guy who in the following April i moved in with him (moved to gainsborough Lincolnshire uk) and got into a doctors surgery there thats when things started shaping up better because they got me intouch with a pain management team who reviewed all my medication and decided to reduce the gabapentin to 100mg three times a day and i didnt think that they were doing me any good but there has been days where i have forgotten to take my medication and believe me i have know about it ive been in so much pain now i realise that if i wasnt on this medication i would be worse of ( i take gabapentin because i have fibromyalgia spondylitis and its thanks to the fibro fog that comes with fibromyalgia that i sometimes forget about my medication and end up in so much pain but i am truly thankful for the gabapentin as it helps so much with the pain just wish it did like it says on the packet may cause drowsiness but it doesn't work for me and thats also thanks to my fibromyalgia as well
I probably sound slightly mad, but I’ve been thinking about asking what would happen if I lowered my gabapentin. I’m currently on 2400mg a day along with two 500mg naproxen and then oxycarbazepine and co-codamol for when it’s really bad. But at this point I’m just starting to question how much pain the medication is actually taking away, if any at all.
It’s like my body just gets used to the medication super quickly. I was on pregabalin for a while and that gave me about two months completely pain free before it started creeping back up again and I haven’t been pain free since. But when I started the gabapentin I was in severe pain from my nerve block and it’s never taken the pain away so now I’m just really curious as to how much pain I’d be in without the drugs.
I myself have severe neuropathy in my feet caused by the autoimmune disease I have. I am currently taking 5 mg Hydrocodone (US Opiate) every morning for back pain and I can say that it does not do anything for my foot nerves. In 2017 when I left the hospital after 3 weeks for kidney failure, I asked my GP about something to take for my neuropathy. He prescribed Gabapentin but my Nephrologist said no more than 300 mg daily. I took it for only a short time because it did not do a whole lot for the nerve pain. On a more personal note, it also prevented me from having an orgasm during sex. It must numb the senses just enough to prevent it. Hope I didn't gross anyone out.
Oramorph? I know they don't like prescribing that nowadays but it was the only thing which helped my sister when she was in extreme pain from very severe osteoarthritis.
I had to threaten the doctor with either take my sister into hospital as she hadn't been able to move for 16 hours due to pain and couldn't even get to the toilet, or something stronger. So oramorph was prescribed. It did make her sleepy though and a bit spaced out.
Not sure where you live but I take medical marijuana for my pain. I have a brain tumor, had a thoracotomy for a hernia that has come back, have severe canal stenosis and I can't take anything OTC or prescription for pain as I get stomach ulcers. Also have psoriatic arthritis and take methotrexate injections for that. If you live where you can get medical marijuana I would try it. It makes a world of difference for me. I take gabapentin for nerve pain in my chest from the surgery and it helps some but marijuana helps me more than anything.
I had a thoracotomy and apparently that can cause severe nerve pain, which is what I have in my chest. When I was first operated on they gave me 2400 mg gabapentin which I weaned off of. That was back in 2017. The operation failed. I had a Bochdalek hernia (liver growing into diaphragm) and saw surgeons at Mayo and they said doing surgery again is not something they would recommend. Also my diaphragm is attached to my lung on the right side. So needless to say nothing is really helping. When they gave me gabapentin again recently I couldn't take it as it made me feel like I was either high or in a stupor. I've started medical marijuana and that does help. It was just finding the right strain that would help pain and not make me want to sleep or eat all day. Makes a difference for me.
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New to this... Tried everything for post surgical pain.
Neuropathic pain
Neuropathic pain
negative nerve conduction tests but have neuropathic pain?
