Pregabalin - experience of?

[NervousPatient]

For background, I’ve had fibromyalgia and was diagnosed 14 yrs ago. It’s always been relatively mild & manageable. A flare up here and there with good periods inbetween. However after surgery 2 yrs ago it’s become a lot worse, not gone away and now I’ve been diagnosed with hypermobile Ehlers Danlos and POTS too. The nerve pain at night is awful, especially the coat hanger pain at the back of the neck, but symptoms do fluctuate daily from ok/manageable to really bad. Pain is much worse at night. I’ve never felt depressed, just frustrated that I can’t do everything I want to, but I’m fortunate to have the lifestyle to support pacing and a supportive husband.

Anyway, today I saw the Dr for the nerve pain and he’s prescribed Pregabalin, however I’m really reluctant/scared to take it. Other than HRT (Estrogel only) I’m not on any other meds and I’m worried about taking something that I know others have had horrible side effects from and can be addictive. Therefore I’m interested to hear others experiences before I decide if to try it or struggle on with over the counter painkillers at night on bad days instead.

It’s lovely to take……

Harder to get off..

I was prescribed Pregabalin for fibromyalgia and found it great. Don't have fibromyalgia any more but still on Pregabalin (75mg am, 50mg pm) for phantom limb pain since becoming a quadruple amputee. Still really useful. Not noticed any addiction issues; about 6 months after leaving hospital (and around 10 yrs on Pregabalin) I cut down from 3 doses to 2 and subsequently reduced my night dose with no issues.

Id say I'm dependent but not addicted (3 x 50mg daily). I know when I haven't taken a dose, but I can manage if I miss one totally.
It's a pain getting repeats (now it's class C you can only get 28 days at time), so I order a bit early each time so that I have a small stock in case any one repeat gets mucked up, or for eg over bank holidays when GPs/pharmacies aren't open

I'm currently tapering off it having been on for almost a year for vulval pain (for which it didn't work but I don't believe that my pain is neuropathic). When I got to the max dose (600mg a day) I found my balance was affected and given it wasn't working I asked the doctor how to taper off - you can't just stop when you're on a high dose.

The tapering off has been brutal at times, every time I step the dose down I get a migraine and quite bad anxiety for about 2 days and then the body adjusts. They want me to try gabapentin next but I'm not keen given that Pregabalin didn't work and am now looking into whether I am eligible for medical cannabis privately once I am completely off Pregabalin.

I'm a bit surprised they have gone straight to Pregabalin without trying something like amitriptyline first (still a brutal taper off that but much milder side effects for me) or even Duloxetine. That said, I'm told it is pretty effective for neuropathic pain.

I tried it but it gave me vertigo so I could not stand up.

That sort of defeated the point of the drug so I am now on prescription codeine, morphine type weekly pain patch and a muscle relaxant for a condition that affects me like EDS. They all have horrible side effects but don't give me the dizziness

Thanks so much for all your feedback. I’m already feeling really fatigued some days so I don’t fancy something that’s going to make me feel even more drowsy or zonked out. Also I can get dizzy/lightheaded already with the POTS, especially in hot weather atm, so don’t fancy that either. Also as my symptoms fluctuate greatly in severity, it seems a rather severe medicine to take when some days are somewhat manageable. I’ve bought some Panadol night first to try. It’s mainly at night I feel the pain and need the pain relief. The Panadol night have an antihistamine in them too to aid sleep, so hoping that may do the trick. Also got some paracetamol with codeine so can use those occasionally. Really don’t fancy taking this drug. Dr said they don’t really have the answers yet for hEDS/POTS & fibro so this is the drug they use for nerve pain.

I had a close friend who had a very difficult time coming off it and put on a lot of weight when she was on it. Has the GP given you any other options?

I’m on 1,800mg gabapentin daily (split across 4 doses) for neuropathic pain due to multiple conditions. For me, it works really well. Had to go up to 3,600 for a while but tapered down fairly easily over a couple of months. Still take a 100mv boost if pain increases due to my daring to do something!
Take it with care, pregabin & gabapentin are serious drugs, but they do work very well for some people
Best wishes

Not really. He tried me on Naproxen awhile back but that really didn’t agree with me and upset my stomach, even with the extra drugs that were meant to protect the stomach. I’m really sensitive to drugs, codeine knocks me totally out, it’s like a tranquilliser dart, even the low doses. That can be handy occasionally to sleep though.

I have found gentle stretching can help and I do find meditation really helpful to cope with it all. I use to be a regular at yoga when fit as that helped hypermobility discomfort, so hoping some gentle stretching out might relieve this fibro pain. I feel like the Tin Man from the Wizard of Oz at the moment, all siezed up!

@NervousPatientsorry to hear you are struggling. I have a long term chronic pain condition (bladder nerve pain) which is well managed on a low dose of amytripteline. I am also very sensitive to drug side effects but I find them v mild. However, i know some people find amytripteline difficult to take so I guess its trial and error. I hope you find something that works for you.

I was prescribed pregabelin by a neurologist and took it for about 6 months. I found it made me feel sick very suddenly, with several vomitting episodes which were quite dramatic and very unpleasant. I didn’t have any difficulty stopping them and unfortunately it didn’t help me in the way the consultant had hoped.

There’s three pain management pathways apparently:
1 Paracetamol / Codeine / Tramadol / Morphine
2 Ibuprofen / Naproxen / Diclofenac (? Discontinued in UK I think)
3 Nerve & neuropathic pain: Gabapentin & Pregabalin (the same except P is a precursor to G & more expensive!)
They work differently & so are used for different symptoms. The trick is finding the source(s) of your pain and getting an acceptable balance. I can confirm that is is do-able, @NervousPatient it may just take a bit of time.
Id give Pregabalin a go & see if it helps - honestly, in my case it was transformative with my neuropathic limb, hand & foot pain.

Thanks for all the feedback and info. I’ve decided to give it a month or so trying a more natural approach with yoga, meditation and over the counter painkillers. I’m already feeling an improvement from that and it’s been helpful in the past. Although helpful to many, I don’t really feel bad enough to risk the side effects especially as I’m generally so sensitive to things like that and I suppose I’m a little surprised to be given them. Also the last thing I need is to feel more tired or spaced out. Really appreciate the feedback.