Gabapentin for pain: Has anyone had any... - Endometriosis UK

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Gabapentin for pain

Shellybelly5 profile image
16 Replies

Has anyone had any luck with Neurontin to help with endo pain? I'm working my way up to 900 mgs a day, but my whole body aches.

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Shellybelly5 profile image
Shellybelly5
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16 Replies
Flicky31 profile image
Flicky31

I had it but it made no difference to the pain unfortunately the only thing that helped was a tenns machine and lying down, which doesn't help if you working sorry. Hopefully it will kick in for you x

Catlover93 profile image
Catlover93

Hi hun,

Yes I take gabapentin, but I take MST continous 30mg with it and it does make the extra difference! As I tried gabapentin and the MST alone before and they didn't work as well, but together they work well for me :) and I'm only on 200mg of the Neurontin as prescribed by pain management doctor.

I hope it works for you! Let us all know, best of luck too.

Louise

Xxx

reggaequeen profile image
reggaequeen

Hi I am on 3000mg of gabapentin 10x 300mg a day and 50mg MST in the morning and evening plus oramorphine I have other illnesses but none of the pain killers touch my Endo pain I've also been on 3 x norethisterone a day for 8 months none stop now. I had my op last June they found extensive Endo in the pouch of Douglas, removed leisions and found my bowels stuck to my cervix and my ovaries stuck also. Now the pain is starting to come back worse than before. I think it depends on the person and type of pain, the only thing that really helps me is cannabis, I know its illegal but I cant go on like this, I dont smoke all the time only when I'm extremely desperate and my children are at there fathers, but without that every so often I doubt I be able to go on. I hope you find something that helps you x

sweetchild profile image
sweetchild

Mini have not had any luck with the gabapentin. My Doc thought it would help some nerve thing needless to say it put me at high risk wanting to help myself but I stopped taking it because I dislike how it made me feel(my nurse said for me to at that moment). Then called back and said that I needed to continue to take 300mg three times a day and I still feel like crap. So for me NO NO NO NO NO NO! I don't like it because it makes me feel harmful to myself and feel depressed all the time and have no sleep! (Sorry I had to vent)

slaccie98 profile image
slaccie98

I started taking 300mg gabapentin but it spaced me out too much - pain management clinic. Went to my GP who said to take 100mg daily then another or 2 when required. I find this helps me.

missymo profile image
missymo

Gaberpentin I find increased mbody pain! ! As does lyrica.legs feet mainly! ! Mines for vaginal nerve pain xx

Shellybelly5 profile image
Shellybelly5

Thanks guys. Can you tell me what MST is? I had stage 4 endo with 3 laps, appendectomy, oophorectomy and bowel resection. I have IBS and now my endo doc says I need a hysterectomy. I see no end in sight .:(

Lzknt profile image
Lzknt

Hi. Just to chime in, I had been on gabapentin for several months (dose was 300 maybe? Can't quite remember) when my endo pain really started getting out of control. This was before a diagnosis and I wasn't prescribed it for anything related to endo, but I can at least say that my pain in no way decreased whIle taking it.

ccfd9 profile image
ccfd9

There is a genetic link with gabapentin, some people cannot cope with it and it runs in the family, my father in law had funny mood changes and so did his brothers, had to be weaned off. Good luck.

reggaequeen profile image
reggaequeen

Hi shellybelly,

MST is a morphine based drug that is supposed to last 12hrs at a time, it is slow release, In other words a globule of the tablet will dissolve and release pain killer every few hrs or so, they are evil and wish my doc never put me on them, I sleep alot due to my illnesses and tablets and if I run over taken my tablets on time say an hour or sometime even a hr before I have horrendous sweats, so bad my partner is changing all the bedding at least 4 x a week, I become very hypersensitivity he only has to touch my bed and my body sends shocks all through me, I go through so much ice cream, Ltrs of freezing cold water and ice polls a week just to cool me of all due to the MST. And I do understand that not everybody reacts the same, but my opinion stay away from them! I was warned about 6months ago from someone I met with the same illness to avoid them like the plague but because i was so desperate for the pain to stop I agreed, worse decision of my life. I hate taking my meds I fight it all the way, docs keep upping cause nothings taking the pain away fully, doctor asked me to reduce the MST by 10mg a day a few months back as I didn't think it was working and I went through hell I couldn't even sit up supported due to the pain, so they are working but no where near enough, I have now gone back up untill I go to the pain clinic. I really do hope you find something that helps you, best wishes 😊

Shellybelly5 profile image
Shellybelly5 in reply toreggaequeen

Wow that sounds horrible. In the US, it is almost impossible to get morphine based drugs from the Dr unless you just had surgery. Codeine seems to the edge off the Neurontin, but I'm nearly out. This whole disease is bullsh@t. We gotta find a cure. It's like having cancer, but it doesn't kill you, instead it leaves you in constant pain.

reggaequeen profile image
reggaequeen in reply toShellybelly5

I dont think the gabapentin do anything for me, like I said I am in 3000mg 300mg 10x a day, its all crap and nothing takes the Endo pain away, I was on codeine for 6months and they were working a bit but they stopped giving me them since the oramorphine and MST's. The only thing that works half decent is tramadol which I more morphine but they stopped that also. I've always said the same thing about its like cancer etc. Endo is absolutely evil and I wouldn't wish it on my worst enemy. I've hd it since I was about 10years old I am now nearly 28 and they only listened to me a year ago and still didn't believe me until the operation spoke for itself, told me I was too young! Bloody joke, sorry I dont often get chance to have a good rant, I hope your feeling a bit better this evening x x x

candycabs54 profile image
candycabs54

I use this tablet for nerve pain. I take 2 x 300mg 3 times a day = 1800 and does nothing for me. It is for back and right left pain. Been on it 5 months now. 😞

I take 200 mg three times daily over the period and it takes about one number off the pain (8/10 pain becomes 7/10 etc). It's not much and after 3-4 days it makes my dysautonomia symptoms much worse (low blood pressure, tachycardia, hot and cold sweats, brain fog, mood swings/rage/crying spells), and generally just makes me slow and stupid, like the lights are off in my brain. But I still take it because it helps a bit. I also take methadone and tramadol.

Sorry to hear you have body aches. I don't know much about it but you could ask your gp about gabapentin encarbil, it's similar to gabapentin but it might work better for you if you need something longer-lasting. Good luck x

candycabs54 profile image
candycabs54 in reply togrumpylittleuterus

Thank you. Will have a chat with him. I also suffer from bad depression and take Sertralin - seems to work. Was on Floxotine for yrs, but they stopped working. I also take Nitrazapan at night and Amytripalin 50ml - 1 tablet at night. Had to stop taking this as it was making me shake. Also take Co-codamal as and when I need it. I also have COPD ((( stopped smoking 2 yrs ago )) but the damage has been done. Luckily it is mild and use inhaler when I need it. PHEW!! I would love to wake up one morn and not have to pop pills. I was meant to get an Operation on my back, but because of my COPD, the surgeon said it was too risky as I would be under anesthetic for a while ad they we're going to insert a piece of metal. I'm also 62. I was/am gutted. So sorry to babble on x

grumpylittleuterus profile image
grumpylittleuterus in reply tocandycabs54

I'm so sorry. You are definitely dealing with a lot. I see that someone else on here takes topiramate for chronic neuropathic pain. But I don't know much about this obviously so if you feel you're not getting the best help it might be helpful to get a second neurologist to weigh in on things. I really hope you can find something that helps. xx

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