Hi, I would really like to hear from anyone who has had experience of either of the above to treat nerve pain.
It has been suggested that the problems I am having may be as a result of nerve pain.
I do not tolerate medications well and would love to hear from anyone of their experiences either good or bad.
Hi, I am on gabapentin for bowel neuropathy and peripheral neuropathy with raynauds, has helped with both in conjunctionwitg liw fodmap diet for biwel problems. I also have osteoarthritis in my spine but my symptoms for that haven't changed.
Happy to answer questions about gabapentin. I was previously on amitriptyline, which I hated, and pregabalin, which i also had issues with
Hi, and many thanks for your reply.
What exactly is bowel neuropathy and peripheral neuropathy.?
I have Raynauds had it for years.
When I went to see the gastro consultant privately he also spoke to me about the fodmap diet.
Currently I have only made a few small changes as the dietician is concerned about the calories I may lose.
I have only really cut out very low calorie foods.
I shall have my ct scan of the bowel next Thursday and it was he who suggested the medications if all is ok with the bowel.
He told me if everything is ruled out with the bowel then I would be able to try treatment for nerve pain.
Has the Gabapentin caused constipation for you and if so how do you manage that?
Have you noticed any other side effects and how long have you been on it?
He did say to me that I would only be on a low dose.
He also mentioned Amitriptyline but said it would make me more sleepy.
Lots of questions I know but it does help to hear of others experiences.
Hiya, happy to answer questions.
Bowel neuropathy is when my bowel isn't doing what my brain tells it to do and I get pain from this and other gut symptoms. Peripheral neuropathy is nerve pain in hands and feet, worse at night, tingling and numb, worse than pins and needles.
Amitriptyline made me very drowsy, couldn't drive, slurred speech, nightmares. I felt like a zombie.
Gabapentin is causing agitation and feel distracted, weird highs, really chatty even to strangers, constipation, weird neuro stuff like ringing in my ears. I'm a pianist and sometimes I think I can't judge pitch properly.
For constipation i take aloe vera or bisacodyl when it gets really bad.
I'm not sure if gabapentin is helping to be honest. I'm better than I was a year ago.
Ultimately though, a few gynae things were seen on scans and I'm waiting for surgery for this. It may be all my problems are related to this, so time will tell.
I think fodmap has certainly helped me massively but you have to go all in. I lost 2 stone last year from constant diarrhoea. I haven't put any weight back on, my bmi is 21 so it's not too bad, weight staying the same. I have reintroduced and finding that a challenge. Honestly go all in for fodmap. I saw a NHS dietician. I make my own cakes and biscuits, i cook from scratch and can still have a glass of wine. Are you in the UK? Morrisons have great low fodmap food, actually branded low fodmap. Calories shouldn't be a concern. I'm more worried I'm not getting adequate nutrition, but in the short term it shouldn't be an issue.
Thank you for taking time to reply to me.
I am also from the uk.
As I am texting now, I am having to recline as without doing so this feeling of movment and pain under my rib is going crazy and taking me with it.
I dont know if I am repeating myself so accept my apologies if that is so.
I have 4 spinal fractures and Osteoarthritis spinal stenosis and a good few other things.
My fractures are as a result of Osteoporosisand have happened without trauma.
It has been suggested my pain and movment may be caused by damage in my spine.
Last year I had my 4th fracture and what followed was, burning a feeling of movment, and pain.
This has gradually got worse till I just can not stand it.
I hope I can be given something to help with it I really do.
My BMI is low only16 and I generally have a good appetite.
I hope you are not kept waiting too long for your surgery, and that you find after having it much of your health problems are cured.
Can you tell me if Peripheral Neuropathy leads to bowel neuropathy?
I actually meant if you had peripheral neuropathy as I do in tip of my fingers and in both feet spreading a little to my legs can this also spread to your bowels. I am a female.
I have been on Gabapentin for a couple of years now for nerve pain I have had no side affects what-so-ever however it does not help my osteoarthritis in my feet and back at all
I have been prescribed pregabalin in the past for carpal tunnel syndrome. It is similar to gabapentin in that it is meant to tackle nerve pain. It worked to a degree for the nerve pain but made me feel a bit spaced out. I didn't like that sensation. However I didn't take it for long as eventually I was diagnosed with rheumatoid arthritis and was given medication to tackle that which also resolved the carpal tunnel syndrome.
Hi thank you for your reply.
I was on Oxycodone all last year and have now come off it by very slowly reducing it.
It was not helping this pain and I just wanted to sleep all day.
I now realize just how spaced out I actually was on the higher dose.
I could not have managed without it last year as I was unable to move.
It is not the sort of drug that will help with nerve pain.
I wad still able to function because it was only my wrists and arms that were affected but it isn't something that I would want to rely on long term.
I would also add that we are all different and quite often respond differently to drugs. If the doctor thinks it may help and it's a low dose it may be worth at least a try because it did help the nerve pain.
Thank you for your replies, I hope I will be prescribed something that will help son.
I take amitriptyline for nerve pain I have a disc out in my neck and suffered a lot of head and neck pain I take 4 10mg tabs every night around 2 hours before bed and they also help me sleep I’ve been on them a good few years now I have both RA +OA
Thank you for replying, I have 4 vertebral fractures, osteoarthritis of the spine, with bulging discs, spinal stenosis, and a good bit more.
Since my last fracture which was a year ago, I have been driven crazy by a feeling of movment and burning pain under my front right rib.
I am hoping I can be given something soon that will offer some relief for me.
I hope you get something to help soon
Hello, I take Gabapentin for nerve pain mostly in my leg but the past year has been all over my body. I thought it was not working so I just stopped it. myself. I was wrong, I started it back up and it does in fact help me. I have nerve damage from a back injury I got 6 years ago. I had a burst disc and had a discectomy. I had nerve and muscle damage from the surgery. I am sorry that you are in such discomfort and I hope you find some relief soon.
Thank you for your reply.
I am sorry to hear that you were left with problems from having surgery, but pleased to hear you are getting some relief by taking the meds.
You say you now have pain in other parts of your body.
Is this a side effect of the Gabapentin?
I have been looking at patient reviews and some people are saying it is.
I believe strongly that if something proves to work then take it.
I will find more out I hope after next week.
Yes , I was treated with Gabapentin also but stopped taking it because of the side affects. I had also heard of a connection with it to dementia. Not sure if it was true or not though, just didn’t want to take the chance. I take a Super B Complex which helps. I also have RLS. That’s a nerve related problem also.
Sorry to hear it did not work for you, I have been reading of the many side effects it can cause for some people.
I do not tolerate medications very well and do not welcome side effects along with the other health problems I have.
You mention you have RLS how is it diagnosed, and how exactly does it effect a person.
I often wake in the night and have trouble with my legs I feel I have to move them and it bothers me to keep them still .
Its like I want to move them all over the bed .
It only happens when I am in bed and keeps me from going back to sleep.
It is difficult for me to describe really.
Could it be RLS or something else?
I know my late Mother had the same problem.
After I had breast surgery (mastectomy) I had tremendous nerve pain for two years. My surgeon gave me gabapentin but I looked it up and it seemed kind of dangerous, usually used for seizure disorders. Since I have found that it works great for nerve pain. Particularly after a surgery where they sew all your nerves together in a line, that can be very painful for months.
Hi thank you for your reply.
I hope you are well at this present time.
At the moment I am not receiving any medication for the pain as I have been having other tests done to rule out other causes.
It is now looking looking like the pain and feelings of movment I am experiencing are due to nerve pain.
I am awaiting an appointment with Orthopaedics to discuss this, although with the current situation this may have to go on hold or be done via phone.
Keep safe and I wish you and your family well.
In reference to Gabapentin is a much better pain reliever when given with another opioid as they compliment one another, but Gabapentin by itself isn't too successful. Strangely, in stopping most pain medication because you believe they're not working is when you discover they are.
Thank you for your reply.
Glad you have a combination of meds that work well at controlling your pain it's always nice to hear of people having success, as often these meds can bring unwanted side effects with them.
At the moment I have been given Diazapam owing to having had another spinal fracture.
It is working well for me, although I do have a problem with the higher doses because of a low body weight of 6 stone.
Sorry to hear about the spinal fracture it's a real painful thing to happen and with movement only increases the pain. Taking Diazepam by its self isn't great but with a strong painkiller will help much better. I take morphine daily in tablet form with another opioid and Amitriptyline at bedtime for sleep. I have suffered spinal pain for 35 years and eventually after years of different fantasy 'medications' the right doctor came along. It's opioids that spinal pain needs if severe, and nothing less.
Thank you for your reply.Yes the fractures are very painful and unfortunately keep happening.
No time is a good time but it has been very difficult with Covid-19. I am shielding and the clinic I attend at the hospital is closed.
When I had a fracture last year I had Oxycodone which helps the pain but I already have a bowel problem and take 3 medications for it.
I did become very constipated despite the extra medication to help it. As I mentioned before I am of very low body weight and this effects how I respond to the higher doses.
The Diazapam helps the muscle spasms, I will not be staying on it long term.
Do you have any side effects and trouble with constipation with the Morphine. It can be a real problem finding meds which are lactose free, I am lactose intolerant and many of the tablets have lactose in them.
You would think in this day and age they would have got it right by now.
Many things I have to take in liquid form to get round it. I have a good GP now who takes good care of me, before he came along I had already suffered from fractures and had been told if I can not take ibuprofen (I have gastro issues and can not take it) then there is nothing else that I can be given.
In fact I was told I did not have anymore fractures and it was just muscle related, when it actually turned out I had 2 new fractures.!!!
Needless to say I did not see that GP ever again.
Hello, I'm sorry that you are having to deal with this, I can relate to your situation. I have taken both amitriptyline and gabapentin. The amitriptyline didn't help as much with the nerve pain as it helped me get to sleep but that was a welcome side effect (I only took it at night). The gabapentin worked very well after I got the dosage high enough. It takes your system quite some time to adjust to the sleepiness as you increase the dose (close to 6mo and I was at 2700mg) but after a year I began to have dental problems. It took another year to figure out that the gabapentin was the cause. Unfortunately, I had lost 4 teeth by then. They became so brittle and dry that they literally just crumbled and fell out in pieces over time, resulting in exposed roots (thanks to the gabapentin, I felt no pain with exposed nerve roots) and expensive root canal surgeries and caps. I had to discontinue the gabapentin. I now take lyrica, it causes swelling in my feet and ankles and doesn't help quite as well as the gabapentin but I wasn't willing to keep losing my teeth.
I hope this helps to give you some insight into the potential issues. I truly hope that you find something that works for you. Each of us is different and you may benefit from one of these. Best of luck!
Thank you so much for your reply.
It sounds like you too have had to suffer side effects from something that otherwise was of benefit to you.
I am really sorry to hear of the problems with your teeth, it must have been a very worrying time for you.
The results from my bowel scans all came back good so that was a relief.
Gabapentin would have been my chosen med to give a try, but 2 more fractures have got in the way, of going on any more meds.
I would not be able to take any risk with problems with my teeth owing to the treatments I have had for my osteoporosis,for fear of ONJ
Any dental work I have done now other than fillings would have to be done at a maxi oral facial dental clinic.
Since wrighting this post I have had 2 further spinal fractures in the space of 9 weeks, both without trauma as is the case with all my fractures.
As you can imagine I have been more than fed up.
They will be healing now, and once it is considered safe for me to do so I shall have a dexa and mri scan.
I find now with each fracture the problems under the rib, (pain and feeling of movement) increase.
When standing it can sometimes be eased by my wearing of a brace.
When sitting however wearing a brace is impossible.
They are not the most comfortable of things.
I had a rest from the Diazapam after the 1st of my recent 2 fractures but I am now once more taking it owing to the 2nd one which occured almost 3 weeks ago.
I only take a small dose and even that knocks me out!!
I weigh six stone and feel the low weight has a huge effect on how the meds work.
I have not heard of Lyrica but will certainly have a look into it.
I wish you well and hope you can continue on it without any further problems.
Good luck to you too!!!
I'm so sorry to hear about your recent fractures. I know that this must be extremely frustrating for you to continually deal with. I wonder if the pain near your ribcage is nerve pain. At one point, a lead from my neurostimulator migrated and came in contact with a nerve that caused me great pain in my ribcage area. You may have a bone fragment or splinter that is doing the same. Just something to think about. I pray that you are able to find some relief. Best wishes to you.
Thank you for your kind reply.
I do have to admit that it does become more difficult with each fracture, the last 2 fractures have been even more difficult to deal with owing to the covid 19 situation.
Yes. I believe now the pain and feeling of movment under my rib is nerve pain as a result of the fractures in the spine.
I have found for sometime now that when laying down it will go away and usually when I wear my brace.
I have never heard of the condition you describe which caused you to have great pain in your rib cage.
You have given me something to think about and discuss at my next appointment.
Yhank you and take care.
I'm glad that I could give you something that may help with your appointment. As silly as it sounds, some how it helps to know that you are not the only person who has dealt with a specific situation and someone else can provide another point of view and also help kind of help "put your finger on it " when you're struggling for answers. If I can help in any way let me know. I hope you're appointment is soon. My situation called for an emergency surgery. Please keep me posted and I will be praying for you.
Thank you once more for replying to me.
I am sorry to hear that you were in a situation that needed you to have emergency surgery.
Hope the surgery was successful for you it must have been a very distressing time.
You are right in that it does help to know that others have been or are in similar situations as oneself.
Sharing our experiences can often give us the answers we are looking for.
I am hopefull that my appointment will go ahead on my given date, there is so much uncertainty at the moment with Covid-19.
Take care and I will keep you updated.
Your post is old, but wanted to your question about Restless legs. It certainly sounds like you have it. There is a Restless legs forum on this site you might be interested in.
Hi Sue, and thank you for your reply.I did not know there was actually a site that covered Restless leg, and I will most certainly be looking at what members are posting.
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