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Fibromyalgia Action UK
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Terrified of starting Gabapentin

Hi there.

First post here and have never joined a forum like this so please be gentle.

Long story short, after a lifetime of pain and misdiagnosis of arthritis, on Monday the clinical lead in rheumatology diagnosed me with Hypermobility and Fibromyalgia. I have so many thoughts and emotions about that right now from surprise ( thought I had arthritis) to validation (years of being told I was clumsy and lazy knowing there must be something wrong)

I’m married to a police sergeant and so he works long shifts, we have 5 children and I also have s full time job. Not working is not an option for me.

The doctor has prescribed Gabapentin and wants me to start tomorrow.

Firstly she didn’t quite explain the titration properly. And secondly, I’m terrified of starting it. Everyone I’ve spoken to about this drug has got a horror story to tell me.

I really don’t know what to do. I’ve been in pain for so long that it’s just part of my life. I’m so scared of taking something that will render me even more useless to my family.

Any advice? X

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Emma. I was terrified as you are. I have now been on Gabapentin for a year after very slow titration. It’s improved my health so much.

Follow the info on link below and seek other internet advice on how to titrate.

Other meds can interact with Gabapentin so take care.

Let me know how you get on x

sheffieldachesandpains.com/...

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Thank you so much. First one tonight. Fingers crossed. Xx

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I was on its cousin Lyrica (Pregabalin). I wouldn’t wish it on my worst enemy. Took me 1.5 years to wean off and was going out of my mind, suicidal thoughts, pure rages. Sorry but I wouldn’t recommend those drugs. I’m not against medication and have been on many types. But those ones are from the devil, I wouldn’t take if you paid me £20 million. Sorry :(

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drugs in the same family do not affect people in the same way all the time in relation to positive or negative effects. People try amitryptaline and do not tolerate it at all but then try noritryptaline and find it works well. Its the same with gabapentin and pregabalin. They may work or they may not but you need to try them first and then see if they do.

It may be the best thing for you or it may not but you will not know until you try.

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Pregabalin is a much stronger version so has more adverse effects. I loved it to begin but quickly my tolerance grew. I got addicted to it. I had to take more and more to not feel withdrawal effects (rage). It changed my personality. I was prescribed it for anxiety. Now all the GP surgeries where I live are aware of the addictive dangers and taking people off this drug. I was on it for 5 years in total including 1.5 years to taper off extremely slowly. Any more than dropping tiny titrated amounts a week and my body would go into withdrawals. It was truly awful for me and my family and I almost lost my life like many others. This is my story and I share it to highlight the dangers of this drug. It can turn on you. Please be careful everyone taking it. I’m much better now and so thankful to get through it. I now take Duloxetine for depression and pain and that is working really well for both. I wish you all well on your journey. I know how hard having chronic health conditions are. God bless.

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Appreciate your journey and your experience but everyone reacts differently to meds. And different meds are different from each other.

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Absolutely. Take care <3

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Pregabalin isn’t ‘version’ of Gabapentin. It’s a completely different drug, just as aspirin and codeine both kill pain but are different drugs.

I’m sorry to hear of your bad experience on Pregabalin. I was warned off it by the Rheumatologist I saw and I am so glad I was.

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Hi EmmaLouise5

😊🌿🌸🦋

Welcome. I’m sorry you are suffering so much.

We are all individuals and experiences with meds is not the same for everyone.

I’ve been In Gabapentin now 1200mg every 12 hours or twice daily for 5 years.

It has worked wonders for me. It has kept my pain level tolerable. I have multiple overlapping conditions that all produce pain.

For the first 2 weeks it made me sleepy but that was because I didn’t sleep well or very long due to the severe intensity of my pains.

Once the adjustment period was over I started to feel much better and could function again.

There is a period where you are to monitor your side effects and suicidal thoughts have been reported in the group study. However if you are prone to mental issues then this would be a concern.

If you are suffering so much you could always titrate off of it if you felt it necessary but you may be like myself and really have great benefits from taking it.

With having to work outside of your home and all the duties of 5 children to raise wouldn’t it be worth trying to see if it helps at all???

I’m on 2400mg daily and I can still increase if needed.

If you need antidepressants you can add a mild one if necessary.

Check all your meds you currently use with the Pharmacist and make sure they won’t badly interact with Gabapentin.

It’s really up to you your choice.

I know the horror stories about Gabapentin but there are good experiences like mine too and you won’t know until you try it if you’ll get the pain relief you’re seeking unless you use it.

You can start out on the lowest amount like one capsule and see if it doesn’t agree with you that way you could stop It easily.

I wish you well with your decision and relief.

I just said a special prayer for you dear.

Take care and abundant blessings.

EJ 😊🌿🌸🦋🙏🤗💗😘😇🕊

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Thank you I appreciate that.

I did say to a friend today that I may just start on the lowest and see how I go. I’d be greatful even to just have the edge taken off of things so hopefully even the lowest dose is all I’ll need. X

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You’re welcome dear.

Best wishes for a good outcome and the relief you seek.

EJ 😊🌿🌸🦋🙏🤗💗😘😇🕊

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Excellent reply xx

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Thank you Dizzy

Came from the heart.

Sending you healing prayers hugs and love my friend.

EJ 🙏🤗💗😊xxx

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🤗🤗🤗

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Hi Emmalouise, I’ve had a recent fibro diagnosis. It was good to finally know what is wrong with me yet it’s overwhelming.

Personally, gabapentine works great for me and I’m on a low dosage 100 mg up to 3 times daily.My 14 yr. old chocolate lab takes it as well.

I hope it works as well for you. Worst case there are other options.

Wishing you all the best.

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Thanks for your reply. Did you have any side effects to begin with?

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I'm a 28-year old male, I've been an athlete all my life and fractured my spine repeatedly before I was 20. I have spinal stenosis causing debilitating neuropathic pain throughout my whole body. I avoided medication the whole time I was an undergraduate because of fear of side effects but when I got to grad school, the pain became unbearable and I started on Gabapentin 2 and a half years ago. I didn't think I would make it past the first day. I started on a tiny dose (300mg) and was so stoned I remember going to the gym to work out, and spending and hour in the locker room playing with the combination lock. I forgot to work out at all! Nor did things improve quickly. During the titration period I didn't notice any change in my pain, but I did have severe mood changes, becoming uncharacteristically emotional. However, I persisted through these things until reaching my current dose of 1800mg a day, and I can say now that the medication is literally life-saving. The mood effects and all other side effects disappeared completely as my body got used to the drug, but now it's the only thing that keeps my pain in tolerable ranges. It's also allowed me to go back to sports, and without that I would have become suicidal. Believe in your body, don't read the horror stories, and take heart in the fact that for many people, Gabapentin is extremely effective, well-tolerated, and safe.

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Thank you for sharing your experience. Very helpful :)

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Hi I have been on 2700mg daily for 12 months I was on a lower dose for another 12 months before the hospital increased it as others have said it works for some and not for others one thing to remember is no pain meds will ever remove all of the pain but can reduce pain you could start on a low dose for a couple of months and see how you go it will take a few weeks for your system to get used to it to see if you benefit from being on the medication it is addictive and when you have been on it a while you do need to be weened off it but I believe that is the same with most things give it a try see how you go good luck

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I, like yourself, was very nervous about taking a medication for which so many horror stories existed. Then I reasoned, there are horror stories to be found with all medications, and reactions and tolerance are as varied as medicines themselves. A co-worker if mine started Gabapentin, 300 ml, and said he slept for three days and refused to take it again! That added to my anxiety about taking it, because I’d been prescribed the exact same starting dose for severe migraines.

300 ml... nothing. Got some of the best sleep I’d had in years, but nothing excessive — just a good night’s sleep. I did notice that it would make my dreams more vivid, initially. Again, nothing unpleasant, just noticeable. That lasted for about a week.

I never experienced adverse side effects, and slowly increased to 600 ml, 3 times a day, with the ability to increase up to 2400 ml daily, if needed. Yes, I’ve heard and read the horror stories, and my body tends to react very quickly to things. Gabapentin has been absolutely trouble free for me.

With all that you have going on in your life, and limited options in certain areas, I would think the benefit of trying it would far outweigh the risks of doing so. You should know pretty quickly if it is helping you, and you can decide what to do based on your experience — not someone else’s negative one. Let us know how you do.

Wishing you all the best. ❤️❤️

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Hiya!

Like all things in life, you only really hear the negative side of things. As others have said here, we all react to medications differently. I used to take gabapentin, but at the highest dose, it had no effect on my pain, so I am now on Pregabalin, which is helping a bit.

As others have suggested, would it be worth starting on the smallest dose, just to see how you react & you can then titrate the dose increase if needed? If you are worried, could you perhaps book a couple of days off work, so that if it does make you feel sleepy, you’ll be at home? Long story short - if you don’t try it, you won’t know how it will affect you.

Whatever you decide, I wish you the best x

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I was on this drug and it didn’tt Suit me, I would try it and if you have any unwanted symptoms come off it there are others you can take. I went on a pain management course at our hospital. That really helped and they give lots of help and advise

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Good morning to you.

A long time ago I was on Gabapentin and Lyrica in connection with my epilepsy. Both did a good job. Last year it was recommended to me to improve my sleep. My fibromyalgia and RLS don’t sleep much. The sides effects that I got now with Gabapentin , first few weeks, were general “slow motion”. It wore off , has helped my sleep. Diet plays a big role. I try to eat Paleo/Keto. healthline.com has Fibromyalgia Diet: Eating to Ease Symptoms. Diet and walks have helped me a lot as well as going to Feldenkrais classes. Hope your symptoms disappear.

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I was on it it is a good pain killer but I put on so much weight might not be the same for you it's worth trying .

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Hi EmmaLouise,

I was prescribed Gabapentin for nerve pain following back fusion (twice). My sciatic nerve was crushed and I was in extreme pain. I have arthritis and also have Chronic Fatigue and my pain can be amplified, an over reaction to a small cut or aching/sore muscles hurt hugely some days. So I have been on Gabapentin around 2 years. My GP gave me a regime to start and build up changing every two days to very slowly increase dosage. I have adjusted the dose according to pain so it varies according to my pain but I am comfortable mostly. I have noticed weight gain but my pain is so great that I am putting up with this for the time being, for me it’s worth it. If I take a lower dose I do notice a difference in my pain, it’s a good check to see if it’s still working. I would say, like others, some drugs are hard to tolerate to begin with but what I do see a lot is people giving up after a few days because of side effects. Like all drugs it does take a while for the body to tolerate a new drug and for me, when I started I did feel a bit odd but I stuck it and it wore off after a week or so, I guess it depends on how badly you feel as to how long you are willing to tolerate introducing a drug and of course it’s not right for everyone but I am one of the lucky ones, it works well enough for me to have a better quality of life. I hope this helps a little. It is scary trying something you have heard a lot of negs about but it’s worth a try if you are in a lot of pain - you can always stop taking it ! Good luck x

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If you decide to try it, do so at a convenient time. After my second tablet there was no way I could drive and was at work and needed to get home!

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Hi I have been taking gabapentin for years and I couldn't manage without it. It has helped me no end. I would recommend it to anyone with this amount of pain on a daily basis. Even though pregablin is part of the same family it is totally different.

They changed me to pregablin and the side effects were horrendous and I had to come off it straight away but I can honestly say I have had no bad side effects with gabapentine

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Hi, I am on it's cousin, Lyrica (Pregabalin) and have been for about 10 years. I have to say that I haven't suffered any side effects from it and I take a high dose (600mg a day). I can see why people suffer from withdrawals from the drug because on the odd occasion that I have forgotten to take it I have suffered from side effects associated with withdrawals and no doubt if I need to come off them in the future I will have problems. I have to say that Lyrica has changed my life though as I was almost bedridden before I started taking it.

All medication carries side effects and of course everyone is affected differently. I hope the medication can help you as much as mine has helped me.

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HI. I'm currently titrating OFF of Gabapentin, having been on it for more than 15 years. I wont give you another horror story, because as has already been said, we are all different, and we all react differently to different medications. Despite my own negative experience with Gabapentin, and because of your own circumstances, I personally would suggest that you give it a go, but take note of any and all side effects that you might have. If after a week or two, you are struggling with it, talk to your GP. You may well be OK on it....some people are. Just please be very aware of anything out of the ordinary. Good luck to you. Xxx PS. Oh, and I must mention....IF you have any problems when taking it, DO NOT just stop taking it, as it can be dangerous. If that happens, contact your GP.

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Hi

Ive been on pregablin similar to gabapentin and was on them for a year with no results at all so i am know coming of them slowly i cant comment on them only my experience with pregabalin they didnt do anything the doctor gave me naproxen and i can honestly say they are helping a little had im like you suffer

But the otherside is my daughter is taking gabapentin and she is fine with them so it really is each individual but why dont you talk to your doctor ask them to explain to you or try a different ine there are so many tablets out there its just trail and era good luck

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Hi,

I’m on Gabapentin 300mg three times a day and I’ve been on them for a few months and they have helped me I know one of the side effects is weight gain which has happened but I think that outweighs the benefits.

It’s not the same for everyone but give it a try it might surprise you.

Hope you feel better soon.

Tina

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I’m pretty certain the weight gain is due to increased appetite. I gained a few pounds when I started my 300 mg 3 x a day dose. I’ve cut down and eaten smaller portions and lost a stone since Christmas

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healthunlocked.com/fibromya... hello there and welcome, I can see you have had a lot of advice from members, we say trial and error till you get something that helps or suits you. I’ve been on this journey did try it for a few weeks but played up with my stomach , meds can have side effects sometimes I’m on duloxtene it has really helped me but I’ve put a lot of weight on , but I have to way up do I stay with it and be happier in myself or risk coming off and having to start again on something else. Like I say trial and error, if you do have any questions or worries along the way you can always ask for a booked call back from your gp, I hope it goes okay for you. I’ve posted a link above if you would like to lock your posts, take care xx

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Hi Emma I am on it to be honest it's not addictive that was the plus point for me and it has had a positive effect on me I worked four days a week in maintenance it is good for me but it has enabled me to continue, you will need to find the level which works for you ,it will take time but you are going on the weight track good luck.

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Hello Emma, I’ve suffered with fibromyalgia for years and have hypermobile joints. Now have osteopenia and end stage arthritis in my knees and in my thumb joints! I was prescribed Gabapentin but I read up on it and was too scared to take it! I’ve had amytryptilene for the fibro. Was also prescribed pregabalin (Lyrica in USA); didn’t want that either, so I’m not much help. Think they’re both prescribed off licence as they’re really meant for epilepsy I’ve read.

It’s always interesting to post on here though to see other people’s responses/treatment for different problems though.

Good luck! X

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Hi EmmaLouise, I suffer from fibromyalgia & have suffered with chronic back pain for many years. I was diagnosed with fibromyalgia just under 2 years ago. I was already on gabapentin & tramadol for my chronic back pain, so my doctor couldn't really give me anything else for pain. (A bit of background info that might not be useful, but in case it is, ive put it here). Anyway, like a lot of people have already said, it's not for everyone, due to bad side effects & it has been beneficial to others. I totally agree with what they've said. This is my story... I was put on gabapentin well over 5 years ago for chronic pain as I have a lot of nerve pain. When I first went had it, I was extremely worried & didn't actually start taking it for about a week. After this time, my pain was so bad & my daughters talked me into trying it out. I'm pleased to tell you, I didn't have many side effects. My side effects consisted of feeling quite dizzy about an hour after taking them (which I didn't think was due to the gabapentin, as I already suffered from dizzy spells). Anyway, it worked out it was the pills as the timing was so specific! The dizzy spells lasted about a half hour & I couldn't drive during this time. Any other time, pain permitting, I could drive. This side effect lasted around 2/3 months, but the benefits of having a bit less pain swung my decision to continue with taking them. I have had to up the dose over the years, which has led me to be on the highest dose recommended. This is 600mg 4 times a day. I get fed up & quite depressed being on so many medications that I sometimes stop taking everything I'm on. However, I only last about 6 hours or so, as the pain I have is pretty excruciating & I have to take all medications again. This is where I mostly realise my pain meds do work for me. They make my pain much more tolerable. (I take tramadol too). I did gain a fair few lbs in weight over the years taking medication, but I couldn't say for definite if this is due to the gabapentin or the fact that my previously very active lifestyle has taken a knock, due to living with chronic pain. I know other people that are on gabapentin & some of them can still work & some can't, sadly I'm one that can't!! I wish you all the best Emma, I hope if you are trying it out, it works for you & you are able to be active enough to continue taking care of your children & remain working. Good luck... x

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Hello Emmalouise

I was taking slow release Tramadol for years, and then decided to try alternatives.

April 2018 I started using CBD oil and stopped the Tramadol after dropping the dose best I could. Didn't consult my GP as not easy to get an appt. Just went ahead with it.

I saw the rhuemy last year and both him and the nurse there were pleased to hear about this. I've been taken off the appts list. Not quite sure why.

I haven't taken a pain killer since for my Fibro pain. But the last two weeks I seem to have what they call a flare up and am so weak and can't do much. All I want to do is go to bed and sleep. But even with the Tramadol I still had flare ups. I can't remember if it was Gabapentin I tried once or pregabelin but not many drugs agree with me, and I had horrid side effects.

If you are that scared of taking it , don't. It's your life and body and I would recommend you try CBD oil but get a good quality one, from a recognised supplier.

I joined a wonderful group on Facebook called Nature's CBD Haven, and the advice, support and help on that is incredible. So before you start taking it, if you decide to, it's worth joining the group. There's some issues with taking that and other meds and supplements.

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Hi

All I can say is you need to try this drug for yourself and see how it manages your pain . Each person is different to how we react to drugs . I’ve been on gabapentin before. With no problems but did come off it because it wasn’t helping me . So I’m on pregablin now . So my advice is try it for yourself and if doesn’t help you can always try something else - what’s the alternative just pain which is no fun . So try for yourself . Then you will know if it suits you .

All the best

Helen

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