Gabapentin use

[Claire Robinson]

Hi. New member first time poster. I was diagnosed with ME 25.ir so years ago and fibro a year after that. I've struggled with poor medical care throughout, not. Being believed etc. Went to another GP today to be told that the gabapentin I was put on 12 years ago may be causing some of rhe pain. And that it's very addictive. Got.to wean myself off over 20 months. I've since looked up about gabapentin, use misuse and withdrawal and I'm terrifed! Wonder if anyone else has used/ uses it and what they feel about this. Not offered any alternative at all or any help apart from wait till thriufh menopause, lose weight and keep active. Never felt so disillusioned with health care. Thanks and apologies for rant!

 

[sunkacola]

Hi Claire, and welcome to the forum.
Gabapentin has been known to help some people with fibromyalgia pain, but often is not effective. I tried it years ago when I was first diagnosed, and it did nothing at all for me. Whether or not the gabapentin is actually causing your pain is another matter, and I don't think that a doctor can know that with any accuracy; they can only surmise, which doesn't help you much. However, if it is not actually helping you, it's right to stop taking it.

I took it three times a day for several months, and then just stopped, and had no problem with that at all. I think that whether or not you experience any kind of withdrawal is a very individual thing. You may not have any problems with that at all, so I highly recommend that you not stress yourself about it, especially as heightened stress is guaranteed to increase your pain. If you stress out about going off the gabapentin, and your pain increases because you are stressed, you may misinterpret this as "withdrawal" and stress more, and it can be a vicious circle. Don't go there.

Also, don't go doom-scrolling about things. It won't help.

Definitely wean yourself off slowly and follow your doctor's directions. But don't anticipate bad things.

there are a LOT of things you can do besides wait through menopause, lose weight, etc.

If you are actually overweight to an unhealthy degree or to the point that it inhibits your being active, then yes it might help to lose weight. But we do not all have to be thin! And there's an attitude that if you are not thin you are not healthy, and this is not true. You can be hefty, plump, fluffy, whatever you want to call it, and carrying "extra" weight simply because that is how your body genetically wants to be, and you can still be healthy and strong and active. Only you know whether or not you really need to lose weight to be healthy, but I advise against buying into the "thinner is better" attitude that is so pervasive (and harmful) in the modern world.

The important thing is: Are you eating a healthy diet? Are you keeping as active on a day-to-day basis as you can without causing yourself more pain than is reasonable? Have you identified the things that trigger your pain so that you can avoid them? Are you maintaining, to the best of your ability, a positive attitude, and doing the things that will assist you with this? If not, then those things need work.

I wrote an advice post that you might want to read. See what you can find in there that you can work on. We are here to support you and to offer our advice on whatever might help you.

And by the way, you can rant all you want here. We even have a section of the forum for that, but you can rant in any section you want to. We won't mind.

My advice for managing fibromyalgia (especially for newcomers)

I am not a doctor or anything, just a person who has lived with fibromyalgia for several years now and has done a lot of research and trial and error experimentation. What follows is just basics. There are a lot of variations. You will find your own versions of everything I say, as this is not a...

www.fibromyalgiaforums.org

 

[Claire Robinson]

Thanks for that. My fear is that I was put on a narcotic and have seen multiple doctors and no one until now, has identified a problem. I'm not sure it's working. How do you know? I'm happy.to come off it, but worried about how else I can manage my pain. I'm very much a boom or bust pattern, the busts being more.prevalent these days. I walk twice a day thanks to an active dog and do as much as I'm able. Having had both diseases so long I feel I can ID what helps and doesn't. Just so frustrated with attitude of medics more around ME than fibro. I'm an ex nurse so have insight into health care but it saddens me so much that people are treated like this. And yes I do need to.lose about 2 kg and am working on that ! Not about skinny....was never that. But its for health and peace of mind.

 

[sunkacola]

Gabapentin is not a narcotic.
Some states in the US do control its use, but nowhere is it classified as a narcotic.

As for whether something is working or not....if your pain is decreased then it may be because of the medication. If your pain is increasing or is not decreasing, then the opposite. Maybe I don't understand your question "how do you know?" It should be easy to tell(?)

How else you can manage pain is detailed in that post of mine. But you have to do your own experimentation to find out what works for you. No one can tell you or do it for you, unfortunately. It takes time and dedication, but for most people it yields results that make it well worth it.

About being frustrated with the medical profession around fibromyalgia and ME.....join the club. Almost all of us have experienced this frustration.

What really helped me tremendously with this, and made me stop feeling this kind of painful and aggravating emotion, is to keep in mind that doctors are only people. They are just like me, the only difference being they had a certain kind of education and experience I didn't want to get and so I don't have. They can have bad days or just be unpleasant people. They may be in it for the money and actually not really care if they help people or they may be highly altruistic. They also don't know everything, and cannot be responsible for curing or even necessarily helping someone who has a disorder, disease, or syndrome that simply is not well understood by anyone yet.

When I expected doctors to have the answers for me, I was constantly frustrated both with the doctors and with myself. When I turned away from that thinking, and realized that I had to take full responsibility for my own health, things improved. I still have fibro, and maybe ME as well. some things seem to be getting worse with time, but overall I am better off than I was when I was depending on doctors and medications to make it through the day. And I also have found that if I go into a doctor's office with literally no expectation that they will be able to help me, or will even treat me decently, then I am not upset if they don't, and am pleasantly surprised if they do. I prefer that to getting my hopes up and them being crushed over and over.

If you don't like your doctor you can always change that and get a different one. But if you depend on them rather than taking matters into your own hands to do your best to help yourself you will not experience the empowering effects of taking charge of your own health.

Good for you for walking 2X daily. I have dogs, and one of them is young and highly energetic; he gets me out even when I don't want to go. Working towards your health and peace of mind is a multi-factored thing. I wish you all the best in that and am here to encourage and help if I can, as are others here.

 

[Claire Robinson]

Many thanks. Think I just got overwhelmed.

 

[sunkacola]

Many thanks. Think I just got overwhelmed.

Sure....................it's easy to feel overwhelmed and most of us do feel that way, especially at first, or if something changes that scares us.
Don't feel alone, though. Even though we are not actually there, we are with you.

 

[Auriel]

Hi Claire welcome to the forum I've taken gabapentin for more than a year and I have no issues with it (yes there is drowsyness as a side effect for me) but other than that no addiction (it actual helps calm my anxiety too) maybe different people experience different thing's in the case of medication and prescription drugs, but for me no addiction

 

[Claire Robinson]

Thank-you. Just disappointed to know it was possibly adding to pain. And worries about coming off it. But I will follow the advice and take if from there. Take care.

 

[JamieMarc]

I take a low dose of Gabapentin three times a day for my neuropathic pain, and I have not noticed any increase in My overall pain. It does help with my neuropathic pain or I would not take it. Decades ago, it did not help me with my mild foot neuropathy, so I stopped taking it. Recently, I began taking it again for nerve pain in my right arm and hand. As I said, I have no increase in My overall pain after taking it for 2 months now.
And yeah, doom scrolling ... Bad. LOL
Don't believe everything you read, and remember we are all different. Decades ago, I had no problems whatsoever stopping Gabapentin, and it was a rather high dose at that time. Don't make a mountain out of a what could be a molehill. That's only going to increase your stress and cause more pain.
Wishing you all the best.

 

[JAMIEWHITE21]

Hello. I am new as well I’m on gabapentin. I know it and the hydrocodone works bc if I don’t take them I wake up crying in pain. I’m being weaned off gabapentin to lyrics. I was just diagnosed the other day.

 

[sunkacola]

Hello. I am new as well I’m on gabapentin. I know it and the hydrocodone works bc if I don’t take them I wake up crying in pain. I’m being weaned off gabapentin to lyrics. I was just diagnosed the other day.

Hi Jamiewhite, Just to let you know, one of the frustrating and unusual things about fibromyalgia is that there is no one thing that works to reduce pain for everyone who has fibro.

Gabapentin and hydrocodone work to reduce your pain, and your experience is entirely valid and you are welcome always to give account of all of your experiences on this forum, because that is what we are here to do.

But those medications do not work for everyone. Many, including myself, have taken gabapentin with no effect whatever on pain. Hydrocodone often reduces pain for people, but there are people with fibro who will tell you that no opiate has ever helped them. So it is not really accurate to say that these medications work, meaning they work to reduce fibro pain, even though they work for you and for some others.

this is just one of the many things that you will learn as you explore more about this syndrome. We welcome your questions and feedback here. Just be aware that nothing works for everyone.

 

[Auriel]

@JAMIEWHITE21! Welcome to the forum I'm on gabapentin too (I'm not letting them put me on anything else, they've put me on enough in the past)

 

[JamieMarc]

Welcome @JAMIEWHITE21
So glad you found us and joined us.

 

[marymi]

I have had FM for 55 yrs. 10 yrs ago a doc put me on Gabeten for hot flushes?? I took it for 1 yr. I always felt high which was good and all pain disappeared. When I read other patient's complaints which sounded awful I slowly went off it with help of doc. Years later I feel good. Occasional bad FM attack when I do too much. I put my improvement down to drinking 750 mls of water each day which has also helped constipation. I am now 76 years old. Still have brain fog and short term memory probs. No way I would take Gabentin (Lyrica in Australian terms). Hopefully you find your right road to feeling better. Cheers and good luck. Mary

 

[sunkacola]

Hi marymi.
Just to note.......Gabapentin and Lyrica are not the same thing. They are different drugs.
Lyrica is Pregablin, which I think you are mixing up with Gabapentin.
So perhaps you were on Pregablin not gabapentin?


Glad that you have found a way out of the worst symptoms of fibromyalgia. Personally, I doubt that drinking water is what made all the difference, since that doesn't seem to work for anyone else I have heard of. But whatever made the difference........good for you, and it's always great to hear of someone who feels better for any reason.

I wonder if your memory issues have to do with something else, though, and if you have had that checked out. It could be simply a function of aging, or it might be something else and it would be a good idea to find out.