Neuropathic pain

Can anyone tell me if they have any good advice of how to deal with neuropathic pain? What medication have you been advised to take? Do you manage to get any sleep? Can you tell me anything that has made a BIG difference to your daily pain? Any advice would be appreciated. 

[flamenca1]

Hi I took Pregablin,  Backlofen and Imipramine at night and this stopped my pain. Not many side effects. 

We are all different but this is a good site for advice.

Good luck.

[Hidden in reply to flamenca1]

I did try pregablin, I think the dose was 150mgs but I found that I felt very drowsy all the time. 

[Hidden in reply to flamenca1]

Thankyou

[RAYJAYC]

Hi Wrighty

For neuropathic pain, it's important to gently exercise, move & stretch the affected area. I know it's really sore but shying away from moving it causes the surrounding muscles to spasms and weaken. Could you get a referral to a physio who could advise you more?

The therapeutic dose for Pregabalin is generally 600mg a day so your dose of 150mv probably wasn't helping! Yes it makes you drowsy but that mostly decreases after a while of taking the 'slowly' increasing doses. You have to weigh up drug effect to side effects!!

Duloxetine is also used for neuropathic pain; it's licensed as an anti depressant but has neuropathic pain relieving properties too. Also Amitriptyline or Nortriptyline are used; in fact there are probably a plethora out there!

Do you see a pain specialist? They're the best doctors for prescribing the correct one/combination for you. You could also try heat directly on the affected area or cold packs; whichever you tolerate more or prefer.

Sleep is a massive issue with any pain so maybe you could ask for a short term 'sleeper' like Zopiclone? If we can get a good few nights sleep it goes a long way to helping with managing during the day.

Have you thought of acupuncture or massage? They've both helped me in the past.

RAYJAYC

[Hidden in reply to RAYJAYC]

Sitting here at 1.25 not sleeping as usual. Thank you for your response and I must say all I can think of is this is someone that is dealing with the same as me by your reply!  

 Everything you have recommended I am doing, including taking Duluxetine, Pregablin, Fentanyl patches, Paracetamol and also vitamin D as my level is practically none existent.  Acupuncture I have had several times but found it very painful and giving me no relief.

I must say whilst I have tried many drugs since my accident including amitriptilyne I have got to the stage where most of the time my pain is reasonably managed as much as chronic pain can be,  I have been suffering with sleep deprivation  since coming off the amitriptilyne over a year ago. Whilst I don't sleep for days I would rather be like that than have the zombie effect that they gave me.  My concern is that at present I am feeling rather like that on the Pregablin and I feel that I am replacing the pain with a worse feeling some days. 

I am under a pain management team who are very good and have had several facet joint injections, which in fact I am due to have again this month.  I live in hope that at some point they will make enough difference that I can start reducing medication and maybe start having some type of NORMAL life, maybe even return to work!

Regards

Wrighty1389

[RAYJAYC in reply to Hidden]

Yup, awake!!

Try and stick with the Pregabalin!! I've found it to be really beneficial neuropathic pain wise.

I've just (two weeks ago) gone up to 250mg twice a day, and most of the time I feel like I've been knocked over by an artic lorry but that'll pass in the next couple of weeks. I keep telling myself that the eventual benefit is worth it!! The sluggish feeling but no 'normal sleep pattern' during though is hard going!! I expect I'll fall into a deep sleep at 0330 ish......

RAYJAYC

[Hidden in reply to RAYJAYC]

I'm assuming you are unable to work on your medication? How long have you been dealing with neuropathic pain?

[RAYJAYC in reply to Hidden]

My profile gives a general overview of my situation. It all started in 2009.

RAYJAYC

[misty14 in reply to Hidden]

Hello Wrighty

Can I ask what dose of Amitriptyline were you on?. I take 25mg and it doesn't make me a zombie and does help with pain. Dry mouth I'm finding hard on this dose. 

I'm not sleeping well either and it's tough coping!. I'm taking  a 5mcg Butrans patch which is helping and no side effects!. Also Gabapentin  top dose. It's a case of juggling different drugs hoping to find right combination. Neuropathic pain is hard to treat. I'm glad your having the facet joint injections and they help. I did and benefitted from them. Good luck for when you have them next. 

Misty.

[RAYJAYC in reply to Hidden]

Hi again

 As you see a pain management team, are they able to offer an in house pain management course? Do you also have access to a psychologist who can, alongside a course, teach you 'pacing' and 'mindfulness' to help you manage your pain day to day?

They're two of the baseline strategies that I and most everyone else on here have to use every day to function. Some use medication too, some can manage it without entirely!

[Hidden in reply to RAYJAYC]

Yes I have and they're very helpful. 

[Boozybird in reply to Hidden]

Hi Wrighty, good advice already - just wanted to add that pregabalin did terrible things to my brain. Some people just don't always get on with the same drugs as others. It made me lose my words which was horrible and even after a few years I still feel a bit demented! But that could just be me!  Also, after the injections I went onto to rhizolisis where there burn the pain carrying nerves... One to consider down the line. Best wishes 

[Hidden in reply to Boozybird]

Hi Boozybird thanks for that. Yes I've had the nerves cauterised, can't remember what it's called), but it didn't give me any relief. I think the problem, just like the injections into the facet joints, is whether they get them in the right place! By the way I think we all feel a bit crazy sometimes, it's part of the course! 🙄😜

[VELoce21]

Hi I have found Neurontin/Gabapentin to be the best for me. I had to gradually increase the dose over weeks until I was at the correct level for me. If I miss a dose I then am in agony. Wishing you all the best.

[RAYJAYC]

Interesting thoughts re the Pregabalin dose; my pain specialist insisted I try to get to the 600mg/day dose to see if it gives a good result. We would then decrease it slowly to see where the therapeutic dose is.

 Also, interesting about the Fentanyl. I'm on them for the chronic pain from my DDD and its other factors which is understandable but if the neuropathic pain is the greater of the two (although I suppose the Pregabalin & Duloxetine I take should cover that) then should I be looking at asking to change over to Oxycodone? Would it 'cover' both therefore enable me to take less medication overall? A discussion to think about!!

[southernbeau33]

I take 30mgs duloxetine (upping to 60mgs shortly), 600mgs of gabapentin at night and 400mgs ER tramadol split over two doses. I found just 50mgs made me so tired I couldn't function, even after 4 weeks. Gabapentin didn't give me the awful tiredness (even at 900mgs 3 times a day) but it didn't relieve the pain very well either. I take it at night as it seems to aleviate the burning in my legs in bed. I would definitely suggest trying gabapentin in place of pregablin if you haven't already though, as these things are trial and error. What works for you might not for me and vice versa. I hope you find a good combination that works for you 😊

[Hidden in reply to southernbeau33]

Why are you upping your Duluxetine to 60 mgs?

[southernbeau33 in reply to Hidden]

Apologies for the late reply, I've only just looked at my emails! I'm upping it as 60mgs is the normal therapeutic dose. It does seem to be doing some good, but I still get pain later in the day so I want to see if the higher dose will provide longer lasting relief. Hopefully without adding any unwanted side effects as I haven't had any with 30mgs 😊

[Hidden]

Theres youtube videos by specialists on it

[Hidden]

TCA ??

[RAYJAYC in reply to Hidden]

It means tricyclic antidepressant; amitriptyline is the usual one.

[Hidden in reply to RAYJAYC]

Thanks I didn't know that😜

[Waulahn5]

I was given amitriptyline six years ago for my back from my neurosurgeon I was as yet undiagnosed with lupus.but I have found when I have gone some days without proper deep sleep usually lupus related if I take one I can sometimes get upbto five hours uninterrupted sleep which is good for someone like me. My various specialists are aware of this. Hope this helps.

[Hidden in reply to Waulahn5]

Thank you 

[Cb1963]

yes I'm afraid to say I've tried most meds,currently on pregabalin 300mg twice a day,and a 30mg mitazapine at night time and lidocane patches for my legs and was eating tramadol like smarties,and now on dihyrocodiene,unfortunately I know I have severe neuropathy and have damaged my nerve endings beyond repair,I think if your in the same situation you might have to visit your GP on several occasions to try and get some pain relief,which might be very difficult,it might well affect your sleeping and possibly have mood swings as the condition can get you down,I was hoping the doctor would wave a magic wand and make my problems disappear,but unfortunately I've had my problems for 4 years now and still not found any relief so going back to my GP more often going through what other options are available,so be prepared for a long journey and try not to get to fed up,good luck 🍀

[Iona467]

I have severe back pain, alongside Lupus, Fibromyalgia and rheumatoid arthritis.  I had 6 more back injections but they only lasted 2 months this time.  I take amitrypyline and co-codamol.  I upped my Pregabalin and put on 2.5 stones is 3 months.  As I don't eat much and was ill for 7 weeks, this was an astonishing amount of weight for me to gain.  It was on this site I found out that Pregabalin makes the person retain water, my GP still insists it doesn't cause any weight gain.  The pain management team just put me forward for back injection.  I also have diabetes so it is very complicated.

The nerve pain is terrible, 24/7.  So hard to sleep and when I do I wake up 1.5 hours later then try to get back to sleep again.

Now another GP has given me Gabapentin 900gm per day for 3 days then 1800gm.  I have 3 prolapsed discs and one disintergrating.  20 years ago the fluid ran into a pocket at the base of my spine, it is still swollen.

I too would welcome any advise on how to get better pain relief.