Pregablin: Hi, I have recently been prescribed... - IBS Network

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Pregablin

MyStar86 profile image
46 Replies

Hi,

I have recently been prescribed Pregablin for bowel nerve pain, has anyone else been prescribed this? I’m not sure if it’s making my bowels worse they have been vicious since I’ve been taking it but they really help with me being able to rest so I don’t know if it’s the Pregablin. Do anyone have any experience of taking it for their bowels? What dosage did you take and what effect did you have? Thank you x

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MyStar86 profile image
MyStar86
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46 Replies
userotc profile image
userotc

It seems that it's likely been prescribed for anxiety - but I'd never try to get into the head of medics! As usual, there's a long list of side effects including commonly bowel problems drugs.com/sfx/pregabalin-si... you ever considered seeing a qualified Nutritional Therapist that specialises in gastro? I can send links if you wish.

MyStar86 profile image
MyStar86 in reply to userotc

I have seen many over the years but diet etc does not resolve nerve pain that’s from multiple surgeries multiple diseases causing inflammation inside and outside of my bowels. Thank you for the offer and suggestions. yes it is for anxiety but it’s also used in a different dosage for nerve pain and epilepsy etc so it has lots of uses. I’m just annoyed as it helps me rest but it’s given me vicious liquid bowels I was up all night with it and all of Xmas day it’s agony and it’s made the nerve pain worse with the burning so I’m all over the place. I’m confused as I’ve heard people have used it for Ibs d so why has it given me such loose bowels it’s mad my body hates me I swear it’s just awful 😞 I’m so lost and confused I need help xx

userotc profile image
userotc in reply to MyStar86

Yes you do need help which you don't seem to be getting from medics. The basis of Nutritional Therapy is to aid the body to prevent or recover from illness - whereas drug treatment aims to alleviate symptoms.There should be lots of NT case studies for various inflammation types. But best to avoid if you don't believe in it. Good luck anyhow.

MyStar86 profile image
MyStar86 in reply to userotc

Thank you I’m more than happy to take any advice I really need help I’m so scared and alone so please send anything you have thank you xx

edwangy profile image
edwangy

Pregablin ususally causes constipation

Avalonia profile image
Avalonia in reply to edwangy

I agree. Tried it and only got as far as taking two pills and I had really bad stomach pains

tony11173 profile image
tony11173

I was taking pregabalin for three Years for neuropathic pain but also I had hoped, it would help the abdominal pain which seemed to be bowel related . The drug helped reduce my neuropathy but didnt touch the abdominal pain. I became dependant on the drug and the dr wanted to double daily dose from 200mg to 400mg due to worsening pain. Instead, I gradually requested discontinuation of it and the pain is no worse nor better but mentally, I feel better.

MyStar86 profile image
MyStar86 in reply to tony11173

Did it cause any bowel issues as I’m in agony with loose bowel from it I feel so sick and unwell and I’m only taking 50mg but I’m so lost and confused as a pain management specialist put me on it knowing my situation and history so I’m all over the place. The pregabalin helps me rest which I love but the pain from it is 100x worse than before and I’m not absorbing any of my medication and I’m getting really sick I’m going to try and get a dr phone call tomorrow when they are back as it’s too much to cope with on my own as I need help but the drugs have made me worse xx

tony11173 profile image
tony11173 in reply to MyStar86

Maybe your dr can advise. !?. I.found the pregabalin slowed the gastro system. If I forgot to take the dose., I would get awful stomach cramps and loose bowels. To be honest, nothing has helped me but i pay for Chinese acupuncture twice Monthly and I find this soothing. Best of luck.

MyStar86 profile image
MyStar86 in reply to tony11173

Thanks I’ll try to call the doctor on Wednesday when they reopen as my pain specialist is away till the 8th so I’m left with nothing at the moment just codeine which isn’t ideal and I’m not absorbing it anyway with my tummy so bad it’s just a mess I feel like an idiot I needed help and it’s made it worse I feel so unwell it’s scary. Thanks for your advice and story

Avalonia profile image
Avalonia in reply to MyStar86

I no doctor but I have found that buscopan has been absolutely life safer for me

Lamly profile image
Lamly in reply to tony11173

Good for you, my doctor put me on Gabapentin 200mg per day, I was only on it for twelve days, came off it when I found out that it was extremely addictive, I felt so very angry as he knows I am trying to wean off Amitryptiline, they just don’t care do they, anything to get rid of you, you did very well to come off the pregabalin as that is even worse. I am like yourself terrible constipation and horrific pain constantly I have tried everything possible but nothing seems to work, I am just about to try colpermin which is an ibs tablet, clutching at straws again, I have stuffed with bowel problems for three years I am waiting for an operation but it has been cancelled three times already do to strikes and lack of doctors being sick.

tony11173 profile image
tony11173 in reply to Lamly

Best of luck. I realised these drugs were not going to cure me so I was insistent with dr to discontinue. Withdrawing was tapered and it was often difficult, but I did it and i got my life back. My anxiety levels have lowered too, since coming off this drug.

MyStar86 profile image
MyStar86 in reply to Lamly

Did you find the gabapentin helped? It’s a tricky one as all drugs can be addictive when used for pain because when you are in pain you need it but surely once you are not in pain you wouldn’t feel you need it anymore……however I’ve always refused pain meds till my last surgery broke me I was suicidal from the pain so I knew something had to be done however I didn’t see what makes pregabalin addictive as the only useful part I liked was that it made me sleepy so I was able to get some rest but I wouldn’t want that if I wasn’t in pain but I guess it effects everyone differently especially if me taking it caused vicious loose bowels and you constipation.

Have you tried milk of magnesia that helps with constipation and is better for the system than laxatives and I’ve always used it post surgeries when I get stuffed up from all the drugs during surgery. Or food wise I found fresh figs and weetabix were also good. I didn’t find any use in the peppermint capsules that you said you are going to try but I hope they help you. Amitryptiline Causes constipation also. Good luck

Lamly profile image
Lamly in reply to MyStar86

I have been on Amitryptiline for years I am only on 2.05mg,a day, they used to help my pain but my body became tolerant to them, they don’t help at all, I am getting side affects only, I am going for it after new year and coming off, I will take your advice and try milk of magnesium I have nothing to lose if my pain becomes unbearable I will try a different anti depressant If I have to, I sympathise with you concerning your unbearable pain believe me I have been there, if my pain gets to bad I take zapain, for about three days at a time, but everything that does work is always addictive and causes constipation or diarrhoea, we can’t win can we, all the very best to you in the coming New Year.

MyStar86 profile image
MyStar86 in reply to Lamly

Ah I see I had to Google Zapain that’s codeine and paracetamol so yes they do cause constipation. How did you get on with the gabapentin did you get side effects from that? Did it help at all?

Milk of magnesia works really well for me I just have a cap full at bedtime but I think it says on the bottle what dose is for constipation and it’s a lot higher than what I take but we are all different. I’m just sick of this burning nerve pain it too much I want to scream help me but there is no pain I just have to wait till the pain man is back and pray he can help as the gp is useless. I hope it goes ok in the new year and you cope ok stopping the meds but we will all always be here if you need support as the world of drugs I’m learning is a nightmare what helps one thing makes something else worse we just can’t win and the doctors never truly understand what we have to go through xx

Lamly profile image
Lamly in reply to MyStar86

Gabapentin made my nerve pain much worse, I have just found out for the last two weeks I have had a bladder infection, my doctor has put me antibiotics and within two days my pain is easing a bit, my plan then is to get off Amitryptiline which stopped working years ago, when my infection has gone I will try milk of magnesium I have heard good reports about it improving the pain a bit and is good for constipation. A happy new year to you let’s hope we have some improvement in the coming year.xx

Pedrof1976 profile image
Pedrof1976

The electronic medical compendium lists diarrhoea as a common potential side effect. The emc is where companies store all their data so incredibly accurate. You could ask to switch to gabapentin or duloxetine instead. Gabapentin is the same drug group, but often people will tolerate one not the other

MyStar86 profile image
MyStar86 in reply to Pedrof1976

Thank you my pain specialist is away till the 8th January so I’m left on my own at the moment I will try to call the doctors when they reopen and just see how I survive today I will try just taking one pregabalin as I know you are not meant to stop it all of a sudden so if I try just one I’m hoping the effects won’t be so bad as this is awful. My bowels feel abused I’m burning up dry mouth and so sick but my nerve pain in my tummy is worse than ever is just burning like crazy I’ve never felt like this before. Thank you for the advice

Pedrof1976 profile image
Pedrof1976 in reply to MyStar86

What dose arr you on and how long have you been on it for?I work as a palliative care specialist nurse and prescribe pregabalin a lot. If you're on a low dose and not been on it long you can just stop it

MyStar86 profile image
MyStar86 in reply to Pedrof1976

Oh really I didn’t realise I was as on 50mg for over 2 weeks so I’m dropping it down to 25mg just for a couple of days till I can speak to the gp. Have you heard about the diarrhoea side effect? It’s really bad I have an ileostomy so I was up all night emptying my bag to the point it was nearly exploding. Thank you

Pedrof1976 profile image
Pedrof1976 in reply to MyStar86

To be honest. 50mgs is still a tiny dose so you could get away with just stopping it. Some Capsules meds don't always breakdown with an ileostomy. I've not seen loose stool before (wouldn't take much to do with an ileostomy) but your other symptoms are something I would instantly associate. If you need to slow you ileostomy then try marshmallows or jellies, so long as they're not sugar free and they have to contain gelatin as the gelatin will help bind you up again

MyStar86 profile image
MyStar86 in reply to Pedrof1976

Thank you the pregabalin just seems to of given me such terrible tummy pain and the rapid output has been since I started the pregabalin so I can only think it’s that as I haven’t changed my diet I’m still on the low fibre all white diet and I didn’t change that even on Xmas day I ate my own food. I have take one 25mg pill today and will call the gp tomorrow to see if they can prescribe some more codeine till I can speak to the pain specialist again as that does help slow it does as I’m not absorbing anything now and I’ve had a hysterectomy so I’m on hrt and one part of it is a pill so without that I will start to lose my mind and I need to be strong to cope as I’m all over thr place the pain and sickness from the rapid output is killing me. Thank you again xx

Pedrof1976 profile image
Pedrof1976 in reply to MyStar86

No worries.The gelatin trick does on binding things up whilst you're waiting for your GP or if you have buscopan that could help slow it down and help with the pain.

MyStar86 profile image
MyStar86 in reply to Pedrof1976

Thank you I am so confused I’ll explain the whole story I was on codeine post ileostomy surgery which was helping keep output under control as it went mad post op and I was in agony so I was on the codeine but it was really giving me a painful tummy so I turned to a pain management specialist as I have so many issues from my bowels, nerve and back pain so he prescribed buprenorphine 10mcg patches and pregabalin started both over 2 weeks ago and to start with I didn’t notice much effect at all and was still having to take the codeine but my tummy was getting worse my bowels were awful painful and output was bad that’s why I carried on with the codeine only 2x daily to help but I knew something wasn’t right so I stopped the pregabalin and my tummy did calm down for a few days but then the side effects from the patches kicked in with the sickness anxiety and it was just awful so I stopped the patches but couldn’t cope with nothing so I decided to try the pregabalin again and straight away my guts went vicious again with the output and burning pain so I’m very lost and confused but it seems like they were both causing issues but I was in a better state than this however I need a doctor to tell me what to do so for now I’ve gone back to the codeine in the hope that I can calm things down as I’m in agony the output going made and cramping guts is awful I can’t even rest as it’s burning so much I’m burning up then freezing cold so sick I don’t know if it’s the pregabalin or side effects of coming off the patches so should I just ride it out and see what the gp says but I don’t even know if I’ll be able to get hold of them tomorrow as I know it will be so busy. I just feel so scared it’s making me suicidal from the pain and burning I was bad before but I wish I never started all these drugs now I’m a mess I just can’t stop crying and being doubled over in pain then burning up. Sorry for all the info but it better explains the situation as I can’t think clearly I’m so confused xx

Pedrof1976 profile image
Pedrof1976 in reply to MyStar86

Sorry to hear it has got so bad. Starting 2 drugs so close together is never the best thing to do for the exact reason you're experiencing. Butrans won't help nerve pain, and if you have a burning pain more.in keeping with nerve pain. Pregab and the likes of are better for that; duloxetine has the most evidence for nerve pains and it's an antidepressant so can help.with mood simultaneously.

The other issue with BuTrans is it takes up to 24 hours to load in and can take 24 hours or more to go out. You probably would've been better with oramorph or oxycodone as a quick acting painkiller to replace the codeine.

Codeine slows the gut down the most, which is why it's good for ileostomies, but if you can not tolerate it, then you need other solutions. Meds like loperamide melts, buscopan or even ondansetron (antisickness which constipation is a side effect) may be helpful, but give it time and you'll learn what foods make you active and what food bungs you up and then you can use them to control things. I used to have a lady on my caseload and she used an satsuma if she was binged up and marshmallows if she was to loose and had done for years. The gelatin trick is something I've learned from the patients I visit.

It sounds like coming off pregab and BT and seeing your GP tomorrow as an urgent appointment is the best thing; also ask if you can speak with a stoma nurse specialist as they will be able to advise.

Please, try to keep strong, its horrid now but with some adjustments things can get better. As I mentioned I am a palliative care nurse by trade (macmillan nurse to most) and in my role I do a lot of complex symptom management for people with complex needs and when I 1st meet them things can seem hopeless to them and when I'm finished doing what I can do pain etc . Becomes something they control. It can sometimes take time and patience all round, but it is achievable.

Oli hope you get sorted xx

MyStar86 profile image
MyStar86 in reply to Pedrof1976

Thank you so much it’s amazing to get some proper advice from someone that really understands as I’ve just been all over the place and as you said having two drugs at the same time was always my worry because then you never know which one is causing problems but the pain man said that they work together with the pregabalin helping the nerve pain and the butec helping my back as I have osteoporosis and I’ve really struggled with my back post op. After a week I did have a follow up with him and thought nothing was really happening from either drug I knew I had an upset tummy but as it’s always up and down at the moment I didn’t mention it but literally the next day all the side effects came out with me waking in the night to chronic nausea that never went away and my tummy pain was just too bad to tolerate so I thought it would be easier to stop the pregabalin as I had only just put on a new patch, which worked to start with my tummy did calm down and as the butec was in my system I didn’t get such bad pain plus I was still able to rest but then a couple of days later without the pregabalin I started getting anxiety and terrors plus more bad tummy pain so that’s why I thought the patches were a bad idea and went back to the pregabalin which was ok for a day (now you have said the butec was still in my system it makes sense) I was so dozy having the pregabalin back I slept through a lot of Xmas day but did know something was going really wrong with my tummy then I had the vicious night with all the high output which in turn stimulates the nerve pain and burning so I thought if I just went back on the pregabalin it would be ok as I would still be able to rest but without the butec and high output I wasn’t absorbing anything so I went from strong patches and pregabalin to nothing and my body was in shock.

I can’t take morphine as it sends me mental I really lose it mentally on morphine so that’s why we didn’t take that route and I had already tried oxcy and didn’t get any benefit from it probably due to being capsules so I wasn’t getting the benefits. Pre all of this I did use Imodium when needed to slow things which it just seemed to delay it or stop my stoma being active and I would have terrible tummy pain then it would wear off and I would end up high output again. The stoma nurses were really stumped by it as I stuck to the diet religiously and never had any fibre limited my fluids yet my guts were still vicious like my system hasn’t adjusted to the surgery which was at the end of October that’s why they were keen for me to see the pain man.

I still have some codeine left so I’ve been using that today but this evening I cracked and ended up putting the patch back on as I couldn’t cope I just needed some relief as I know it will be ages before I can speak to the pain man again and my gps have been useless they don’t seem to understand the ileostomy symptoms because after surgery and all the problems without output and pain I phoned my gp in tears and she told me to buy myself some flowers to cheer me up and I didn’t need more pain relief it was awful I cried for days so they have really let me down for years but luckily I have private insurance and had already had a pain referral from my endometriosis consultant so I went down that route and bypassed the gp.

Sorry you don’t need all my history but it’s been hard going through all this alone because pre surgery I survived years and years with no pain meds due to side effects so I really regret the surgery but that’s another story. I think my body is in shock from the surgery as I was so weak before my body wasn’t in a fit state before as they nearly didn’t even do it due to my low bmi but then they did and it was a miracle for about a week then everything started going wrong with the nerve pain and my poor back giving up on me.

Pain management is a lot more complex than I thought as I was a bit naive to it all as I’d never tolerated pain meds well so I just didn’t used to take them but post op I had come to rely on them especially the codeine to help the output and the pain but I had to take a lot which made my stomach hurt so much that’s why I thought patches would be kinder on my system. Anyway that’s enough about my story it’s been a crazy day not being able to think clearly after the night from hell and the worst nerve pain I have ever felt plus being so sick and exhausted from the output.

I will just say thank you so much for helping me get through the day with rational and sensible advice with true understanding it means a lot to me. So sorry for bothering you and I hope you were able to have a nice Boxing Day all whilst keeping me from jumping out the window.

Truly THANK YOU so much xx

Pedrof1976 profile image
Pedrof1976 in reply to MyStar86

It's no bother at all. I hope that you can get sorted out, sounds like a very tiring a testing time you're going through, that no buch of flowers will change. If you're having a tough day, just take stock of how much you have been through and commend yourself for getting this far, it sounds like you've done far better than most would.

MyStar86 profile image
MyStar86 in reply to Pedrof1976

Thank you that means a lot as it has been a battering few years with a lot more to come next year so hopefully I can get appropriate pain relief as I won’t be using the pregabalin again so I can get stronger for what lies ahead next year. There has been lots of times I have wanted to give up, yesterday being one of them but I try to keep hope alive. I hope you have a lovely evening and thank you for taking the time to help me especially over the holidays xx

Lamly profile image
Lamly in reply to MyStar86

I suffered the same symptoms when I came off gabapentin, I had only taken it for twelve days, unbelievable but it is a very strong drug and I have heard that lots of people who where on it for a very short time had terrible burning and pain on getting off it.

MyStar86 profile image
MyStar86 in reply to Lamly

Did the gabapentin help whilst you were on it with your nerve pain? Did you get stomach troubles whilst taking it or only when you came off it? The pregabalin was so evil I could never touch that again and I’m left with the pain but hoping gabapentin will be more helpful as others seem to tolerate it better. Thank you for sharing

xjrs profile image
xjrs

Please don't take up any suggestions up around nutritional therapy. They are not medically trained, they will rob your bank account and could make you worse in the end. This is what happened to me and loads of other people, so please beware.

MyStar86 profile image
MyStar86 in reply to xjrs

Thank you so much xx

userotc profile image
userotc in reply to MyStar86

You know where I am if/when you need and believe in nutritional support. Take care.

userotc profile image
userotc in reply to xjrs

Actually many Nutritional Therapists (NTs) are well qualified and can successfully prevent and/or treat medical conditions. Furthermore they are regulated by BANT (link below).

You have had bad experience(s) with someone that may or may not have been properly qualified and regulated. Others like me (see my profile), many others close to me plus numerous on HU etc have had bad experiences with "medically trained" GPs and/or dieticians and much better ones with NTs.

Care is needed when selecting any practitioners. Sadly that is more difficult with medical practitioners, as Im sure you know. It's much easier for NTs and I was prepared to help MyStar86 to do that, if she was interested, particularly since she appears to have been prescribed drug(s) by a medic that accentuated her problems.

bant.org.uk/our-story/#:~:t...

MyStar86 profile image
MyStar86 in reply to userotc

Are you also an NT? Wow you do have all the helpful skills!! Thank you and yes do send any links or info that you have as it is very difficult with a new ileostomy to get the night nutrition, I have to have prescription shakes due to my low weight and living off the white diet so I like to have as much info as I can and you have helped me a lot. You can always send a direct message as I never know what we can and cannot share on here but thank you for all your help 🙏🏻xx

userotc profile image
userotc in reply to MyStar86

Hers 2 links to some NTs but please only contact if/when NT is an option youre seriously interested in. Whilst I cant recommend any (sadly the one I used is now retired!), you can select based on any preferences you wish.

theanp.co.uk/member-directory/

practitioner-search.bant.or...

MyStar86 profile image
MyStar86 in reply to userotc

Thank you for the advice, I’ve seen plenty of dietitians over the years which haven’t been much help so I think it all depends on the person that you see so I will look into it xx

xjrs profile image
xjrs in reply to MyStar86

MyStar86 , you might also want to see the official line on all of this from IBS Network themselves:

healthunlocked.com/theibsne...

MyStar86 profile image
MyStar86 in reply to xjrs

Thank you as well and I do understand the difference as I’ve seen lots of dietitians which haven’t helped me much either except proving the supplement shakes that I have to have so I think it depends who you see and what you want to get out of it but I have my head screwed on and would do plenty of research but I’m in too much of a state with pain to think clearly about anything at the moment but thank you as I will look into both in the future ☺️

xjrs profile image
xjrs in reply to userotc

We've been here before userotc. We'll need to agree to disagree.

userotc profile image
userotc in reply to xjrs

Indeed. Just presenting another's, opposing experiences for the OP & others.

bungi1961 profile image
bungi1961

I looked this medication up on DR Google it said on there that it's for epilepsy and anxiety and not sure if it will help with IBS if I was you and you are worried I would get in contact with your GP as the saying goes if in doubt check it out sorry I can't be of any more use take care xxx

MyStar86 profile image
MyStar86 in reply to bungi1961

Thanks for looking but it is also used for nerve pain which is what I was prescribed it for by a pain management specialist as I have nerve damage in the bowel due to previous inflammation inside and outside the bowel from way too many abdominal and bowel surgeries. Different medication effects us all differently and I don’t think pregabalin is for me as it causes way too much pain and with cramps and with violent diarrhoea so I will speak to the specialist again to try and get an alternative as my gp is totally useless I avoid at all costs xx

bungi1961 profile image
bungi1961 in reply to MyStar86

Well I think most GP'S are useless when it comes to IBS or Diverticular Disease they do just tend to keep dishing out pills and we more or less has to get on with it I just wish that they could make a pill or something 2 make us better as with my GP I never see the same one and have 2 keep on explaining my problems over& over again and only get a 10 minute appoint and try 2 write as much as I can and even then I forget things when I get out the door or back home ETC then I think of something I could of said I think you know what I mean!!! take care and fingers crossed for 2024 xx

bungi1961

MyStar86 profile image
MyStar86 in reply to bungi1961

I tend to send my gp an email in advance to update her as I always keep to the same gp as all my consultants and surgeries are private so I let her know what’s going on before hand so when I talk to her I don’t have to go over everything. It’s not just IBS and. Diverticulitis that they are clueless on trust me I have many health conditions and they have never been much help only patronising however she did save my life once when I had streptococcus and cavitating pneumonia where she forced them to admit me as she knew I was very ill and had she not done that I would of died so I do have to give her some credit but that was many years ago now and pre Covid I think gps have become a lot of worse since Covid. Anyway I hope you had a nice Christmas and feel better soon xx

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