Lyrica Tablets pain control : Hi everyone, from SOUTH... - NRAS

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Lyrica Tablets pain control

GlynisMcgee profile image
17 Replies

Hi everyone, from SOUTH AFRICA, I was recently prescribed Lyrica tabs for pain management. I have quite secure RA, only recently diagnosed. My phych put me on Lyrica, last week, mind you.

My legs swelled, my breathing was laborious, and generally felt very low. I wouldn't say I felt suicidal, but I was really flat and low. I'm not a depressed person, but do have PTSD. and treated for accordingly.

I have never felt so awful. As I would, I did some research on the drug, and was mortified. I stopped taking it after 5 days.

Has anyone out there been prescribed this? Reading up on the tablet, made me quite angry and keft me feeling hopeless.

Pain is a large part of RA, this I know. It's a continuous battle between my mind and body. So I find myself reclusive, irritated and generally out of sorts.

I love this platform, thank you. We battle on, and unless you suffer from this, nobody has any idea of tge continuous up hill climb we endure.

Stay safe and warm, as we get to out summer months. I think of you all with fondness.

Kindest

Glynis

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17 Replies
Runrig01 profile image
Runrig01

So here in the U.K., most know it as Pregabalin. It’s used for nerve related pain. I’m on amitriptyline which is prescribed for similar pain. Personally I cope ok with mine, and I sleep better with it.

Have you been referred to a rheumatologist, who will be able to prescribe meds, to control the disease. Sorry you’ve had to join our club, hopefully things settle soon for you.

GlynisMcgee profile image
GlynisMcgee in reply toRunrig01

Hi thank you for your response. Yes I do have a rheumatologist, I was really only diagnosed in March this year, after seeing her. Prior I was told arthritic Palin was associated to UC. After 10 years, mind you.Xx

G

medway-lady profile image
medway-lady

Pain should not be a part of RA once diagnosed and medicated. I don't know why you've been put on Pregabalin but your doctor should have perhaps explained why. I had it for Shingles pain but never for RA it worked really well for me but Shingles affects the nerves so that is different. I don't battle on as my RA is well controlled, and hopefully once your medication is prescribed for RA then so should you be able to live a normal life albeit knowing RA is incurable but definitely treatable. I'd urge you to go back to your doctor and find out what the treatment plan is as the quicker the RA is controlled then the better your life maybe. I have to say for some it's an uphill battle but RA is a long journey and its better to travel with hope than angst as stress can affect it. I wish you well. x

GlynisMcgee profile image
GlynisMcgee in reply tomedway-lady

Thanks, but yes, I am clinically managed by rheumatologist, gastroenteroligist, so yes. I journey on.

doctorwho1 profile image
doctorwho1

Hi Glynis yes in in Lyrica a massive 300ml 2x daily since 2020 my legs swollen and feet I've gained a hell of a lot of weight ,your memory vanishes and you do feel low on it ,the good side is my pain is controlled and it's only thing that does control it with a cocktail of other still as I've prolapsed discs in my lower back L1 and L2 I've got Achilles tendonitis and riddled with osteoporosis if I knew back then what I know about the drug now I never would have started taking it all those years ago

GlynisMcgee profile image
GlynisMcgee in reply todoctorwho1

Gee, you see they never tell of the down side. I research everything, I mean everything. And pay attention to my psychological state too.

Fruitandnutcase profile image
Fruitandnutcase

I was prescribed Lyrica when I developed CRPS after I broke my wrist and when the plaster was removed. It was during covid and there was no chance of seeing anyone face to face - I really needed physio.

I wasn’t on a terribly high dose - in fact I was on a starter dose. I felt really peculiar, it didn’t do much for the pain and I had an unbelievable urge to take more - I have no idea how that came about.

All that was at the start of covid and like you I didn’t feel suicidal but I didn’t care if I got covid and died - I felt very odd - and during our daily hour of outdoor exercise I found myself looking for suitable places to scatter my ashes, it was a very odd and unpleasant feeling.

My vision also felt blurred and everything around me seemed ‘grey’. I didn’t like how I felt at all plus it wasn’t helping with the CRPS so I spoke to my doctor and stopped it, I didn’t take it for very long . Funnily enough once I stopped taking it, it was as if colour came back into my life - I wondered if it affected whatever allows your eyes to see colour. It was very odd.

I’ve had amitryptiline in the past and was fine with that but my doctor didn’t want to prescribe it this time for some reason.

Eventually I got online hand physiotherapy for the CRPS and the therapist suggested trying gabapentin which I did but it didn’t feel any better so I stopped that too.

I came to the conclusion that ‘gaba’ drugs just didn’t agree with my system. Like you I also have osteoporosis and prolapsed discs etc. my lower back is a bit of a mess really. Then I had a bit of an accident and fractured my sacrum which was agony. Again I didn’t get on with the painkillers I was prescribed and ended up taking either paracetamol or ibuprofen at two hour intervals, I started with paracetamol then two hours later I took ibuprofen, then two hours later paracetamol etc so that there was actually four hours between each different painkiller until evening by which time I had reached the maximum daily dose.

You could speak to your rheumatologist about pain control or perhaps get them to refer you to a pain clinic.

I discovered a thing called a PEMF mat - it was half the price it is now but using it I went from all those painkillers to just taking the odd couple of paracetamol newmedltd.co.uk/collections...

Unfortunately last time I looked the price of it had rocketed 🙁 There are a few contraindications to using one but fortunately I was ok. It certainly helped with the pain. It is supposed to help your bones but I’m not sure if it does or not.

GlynisMcgee profile image
GlynisMcgee in reply toFruitandnutcase

Thanks you. Thank you. Thank you 🙏I thought I was going crazy. Anyway I have stopped it and, yes, indeed the colors came back. As you described your thought oatter, I saw myself.

At least we're more in control.

I have a follow up appointment in Jan with my physician, and she's amazing.

Bright African sunshine to you.

G

Reeceregan profile image
Reeceregan

Hi from Australia👋 I was prescribed Lyrica for post hepatic neuralgia, or nerve pain, post Shingles. I have been on it since mid September. I attempted to get off it, slowly reducing by 75mg a week, my dosage being 150mg at night and 75mg mornings. I was going in for an angiogram so thought I’d try to be med free, apart from my Plaquenil for my RA. I didn’t realise it builds up in the system, and even after stopping it, there is a delay before you realise your lyrica free. BAD MOVE. I knew I still had neuralgia, the pain and numbness is still there, in a very large area from mid back, around the hip, into the groin and down the thigh, but the pain was now bearable, or so I thought. Fast forward to two weeks Lyriva free and I was at the ED with excruciating pain down the leg and into the knee , and pins and needles in the toes. Back on the lyrica again but it’s not nice. Head is mush, no memory , can’t see, can’t drive, can bearly stand upright without falling over. Not sure if the neuralgia, which starts in my mid back, has affected my bulging discs, or I’ve pinched a nerve as well as having the neuralgia but I don’t like Lyrica at all. It’s a depressing medication and I’m a very upbeat person, even with RA..This is testing me though and I want to go off it but can’t at the moment.

Fruitandnutcase profile image
Fruitandnutcase in reply toReeceregan

That sounds awful Reeceregan and I’m really sorry to hear you are having difficulty stopping Lyrica and you haven’t even been taking it for that long, interestingly I also take plaquenil for inflammatory arthritis and I had also started alendronic acid for osteoporosis which I stopped after four months - the side effects were just awful. I did wonder later if it was all just too many powerful drugs. I’m still on the plaquenil though.

Interesting too that your vision is affected and you’ve just reminded me that I had to hang onto my husband because I couldn’t walk straight - how could I forget that!

Have you had an MRI to try and find the source of your back and leg pain? If you could fix that it might help

I also was a very lively positive 70 year old until I started on Lyrica and I very quickly went from that to feeling like one of those very elderly, frail old ladies you see being taken out for the day by their family and clinging on to their son or daughter’s arm and I actually felt very, very unsafe when I was walking. So unlike me.

It really can be a terrible drug although perhaps it affects some people more than others. Can your doctor help you reduce then stop or if you look online is there any other agency that could help you come off it? Are there any groups of people (Facebook or that sort of thing) who have weaned themselves off who could advise you? I hope you can work something out.

Reeceregan profile image
Reeceregan in reply toFruitandnutcase

Because I was taking it specifically for the neuralgia and had gotten to a point where I had what I considered a tolerable pain level, I thought I was ok to reduce. I knew to take it very slowly, and I knew if the pain increased again to stop reducing. What happened was, the pain didn’t come back until I had been totally off it for nearly 2 weeks as it cleared my system. Then it started in the lower back, then down the thigh where the neuralgia was dominant. But it was the knee throbbing with pain and the pins and needles in the toes that frightened me enough to go to the ED. I just read that that can also be side effects of Lyrica. Joy. 🤦‍♀️

Your paragraph about being a lively 70,year old, and now feeling like an elderly family member dependent on someone to take out now and then really resonates with me. ,My poor husband is now my chauffeur, my carer and my brain. It’s a big ask. And like you, I feel very unsafe walking. I take Prolia bi annually for severe osteoporosis so the thought of falling is front and centre all the time. Just how long I am gojng to need Lyrica is frightening, and the dr didn’t give me much hope when he mentioned some people never get over the neuralgia from shingles. It’s been 3.5 months now and my body is still dealing with it along with RA flares and not improving. Hopefully, better days ahead. There better be. 🙏🏼

Reeceregan profile image
Reeceregan in reply toReeceregan

Sorry ,meant to say, I’ve had an X-ray of both knees last Tuesday, not an MRI though. Just waiting on the results. I’ve had lower back issues for years, and have a lot going on in the right hip, I’m under an orthopaedic specialist for that but this is affecting the left leg where the neuralgia is. If I could get that under control I”d give it another red hot crack of reducing Lyrica.

Fruitandnutcase profile image
Fruitandnutcase in reply toReeceregan

Sounds like you've got such a lot going on that you maybe need to go slowly tackle one thing at a time.

It was that horrible ‘very old lady’ feeling that got to me. Your husband and mine were in exactly the same boat. It’s bad enough having the initial problem, in your case agonising shingles, in mine a nasty wrist fracture but it was followed by CRPS which was worse than the break - at least the fracture healed, CRPS lingers on, it’s a very weird sort of thing and it’s not easy to get rid of - hence the Lyrica.

So best wishes to you and I hope you eventually manage to reduce or even get off the Lyrica.

GlynisMcgee profile image
GlynisMcgee in reply toReeceregan

So sorry, that sounds awful. I'm 65 and usually strong and have done yoga for eons. No can do. My breathing is laborious, and my movements are hindered. I do work a full day but at least it's not a hectic job .

So when I rest...I rest.

OSTEOARTHRITISRA profile image
OSTEOARTHRITISRA

Hi I've been on it for years max dose 600mg a day ,been fine like any drugs you do get some side effects can reduce over time everyone different though, it is for the nerve pain ,for lots your ra can cause nerve pain my rumatologist told me a high percentage, there is a good chance of this ,Unfortunately for lots ,they are in pain long term ,appropriate pain meds

May reduce your pain to your acceptable level

PCStrawberry profile image
PCStrawberry

My wife was placed on it years ago. Within 2 days it was highly apparent, it wasn't possible to continue. The side effects were terrible. I've never seen her so incredibly miserable. Once we returned to the MD, she was prescribed Cymbalta instead. What a game changer! Wonderful results, long term, without any noticed side effects. Might very well be worth asking about on your next visit.

L8kside profile image
L8kside

I took Lyrica years ago. I lasted about 4 days. I felt like I was drunk! I even had to call off work one day. I’m glad you stopped it. Some if us just don’t tolerate it I hope you find something for your pain

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