Pregabalin : Hi I wonder if anyone out there... - Pain Concern

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Pregabalin

Rusty8 profile image
21 Replies

Hi I wonder if anyone out there can help

I have cut down pregabalin by half the amount as I was having bad side effects but I’m finding now I’m in a lot of inflammation pain but I won’t give in just yet

Could it be pmr flaring up or just inflammation rearing it’s ugly head or is it telling me to go back to the amount of pregabalin I was on and put up with the side effects I was having NO I can’t do that

Is there anyone out there had or having same problems thank you june

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Rusty8 profile image
Rusty8
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21 Replies

I discovered it did nothing for me after forgetting it so I stopped it all together however you should not do this without talking to your gp and coming up with an alternative plan. Good luck

Rusty8 profile image
Rusty8 in reply to

Yes that was what I was thinking mark yes I have spoken to doc and chemist about this so will soldier on lol

I’m presuming you live in Somerset where the cider apples come from lol

I’m in Plymouth Devon so not to far away

O to be able to walk again shut up moaning june ha ha

Did you change pregabalin for anything else if so do you mind me asking what

johnsmith profile image
johnsmith

have a look at

april.org.uk

HighsandLows81 profile image
HighsandLows81

Hi there!

Gotta be honest with you, pregabalin is one of the biggest issues I have in my life right now. I find it helps but I just can’t cope with the side effects.

I’m currently on 300mg and can just about function. I was in hospital last year and the pain team came to see me and suggest that my pregabalin be upped to 900mg!! I looked at her and said “are you crazy, that will kill me”. I explained that I live alone and if upped to 900mg, put it this way, I can’t begin to explain how dangerous it would be for me to be on that amount and living alone. It would be dangerous for anyone.

She scoffed and I said “unless you have taken these tablets yourself and know the horrendous side effects it causes us, please do not mock me regarding something you have no idea about.”

It’s a horrible position to be stuck in because the tablets do actually help but it’s at the cost of a lot of things in your life. Well mine anyway. From not being able to walk in a straight line to cooking to not being able to drive. I’m completely housebound.

I don’t want to be on it but it also helps with my anxiety. I’m wondering what mg you are on? Obviously enough for you to not be able to cope with the side effects.

I’m sorry I can’t be more helpful because I’m in the same position as you. I genuinely don’t know what to do for the best. Put up with the side effects and live in a zombie type state or come off it and try to cope with the pain. The Drs are bringing me down on my dihydrocodeine so what do I use for pain relief??

And the only reason they’re bringing my pain relief down is because of the “opioid epidemic”. Which pisses me off so much. In ten years I have never been known to have an issue with it regarding overuse etc and the most bizarre thing was that I was allowed to choose between my pain relief or my sleeping tablets to start to bring down?? I’m a lifelong insomniac and it took me 30 years to find a sleeping tablet that works so it’s like gold dust to me which is why I had to pick pain relief. It’s disgusting.

I just hope whichever you decide is the best option for you. Always remember, it’s your body and you know what is best for it and also know what it’s not compatible with.

All my best N x

One other quick thing is that pregabalin is quickly becoming a street drug. I’ve been gobsmacked at the things I’ve read where ppl use it to get high.

One guy was making a suppository with the pregabalin because apart from injecting, that’s the next quickest way for the drug to enter the bloodstream and get high quicker than taking it orally. It’s a dangerous drug but because it turns us into a bumbling zombie where you can just about remember you’re own name, the Drs want us on this drug because we cause less problems for them. Disgusting.

Sorry this is so long but having someone else to discuss it with who knows exactly what I’m talking about is such a relief.

Take care 🙂

Rusty8 profile image
Rusty8 in reply to HighsandLows81

Hi I was on 600mg pain wise doing ok zombie like don’t know where to start horrible so if I went saw doc he told me to have a go at what I thought would help so what did I do cut it down by half 10days after I’m nearly crying with pain on trying to get pants up ok once I have settled down but the pain is unbelievable when I have to take skirt or trousers of

Nearly ended up crying 😢 today so sorry can’t go on will go back to 550 tomorrow and see how that works

Thanks for reading my comments and trying to help

HighsandLows81 profile image
HighsandLows81 in reply to Rusty8

Hi Rusty,

600mg??! My god hon that’s a massive dose. And then your dr tells you to “have a go”?? I’m completely disgusted by that.

And I don’t want to scare you or anything but cutting it in half was a massive drop so I’m amazed you’re still even functioning. Let alone the dangers that come with such a huge drop.

Obviously I don’t know your dr but I’m really not impressed. He should have given you a reduction programme at the very least because you can’t mess about with this drug.

How are you doing today? I think you definitely made the right decision to back to 550mg for now. Do you mind me asking what mg’s your pregabalin comes in? Mine come in 150mg twice a day which makes it impossible to try and take just 75mg because it’s powder and can’t be cut in half like a pill.

For personal reasons, I could only take half my usual dose the last two days and the withdrawals kick in straightaway. Feel like hell today.

Not going to lie, I had a good cry today because I just reached my limit. I’m so sick of taking it but the fact that it helps with certain things, for me that would be pain and anxiety, it’s so damn hard to decide what to do.

I’ve also piled on the weight and when I read the leaflet, it says “unexplained weight gain”. Unexplained? I’ve never seen that before.

I hope you’re feeling better now that you’ve taken 550mg. I’m always here if you want to talk or ask anything. I just hope you’re ok. But the reduction has to be slow. Please believe me because I learnt the hard way and tried cold turkey. Please don’t be stupid like I was!

Take care ok x

Rusty8 profile image
Rusty8 in reply to HighsandLows81

Hi how are you ok I hope If your anything like me you won't be ok

As you know I cut down on pregabalin didn't work pain came back doc came up to give me flu jab as I don't know if you know I now can't walk anyway while he was here I asked his advice and you will love this got told (what do you want to do ) I didn't know what to say to that so it ended up with please yourself so now I'm at the same place as I was before pain and more pain yes I'm 72 years old and I have gone through a lot over the years and never had this problem I have a transplanted kidney of 27 years and there is no way I want to loose it because of pills but I just don't know what to do I start my months pills on Tuesday so I will sit down and think of the best way to goi have been told by spinal pain specialist that there are 20 percent of people like me who they can't make the pain any better that might the reason go isint interested I don't know what do you think

in reply to Rusty8

A big e hug. I know the pain only to well and the fear the pain brings. Ask you Doctor about introducing a drug called Rivitril 2mg x 2 daily. You need to take it in combination with pain meds and the Lyrica. It worked for me. Anna

Rusty8 profile image
Rusty8 in reply to

Thanks for your comments but problem being because of transplant have to very careful but thanks hope you are doing ok

mikewilliams profile image
mikewilliams in reply to HighsandLows81

Hello HighsandLows81,

Your post has made a lot of sense to me, i also am on Pregabalin 300mg x twice a day plus Tramadol x4 my Dr has deemed that i need to reduce my meds ...why? now that its working for me, she say`s painkillers don't really work. (yep, that's what she said) now she wants me to start reducing. After all this time (15 yrs) and now me being able to work and sleep ok for the first time in ages, she says painkillers don't really work, so now it all starts kicking off again.

Not Happy...Mike

HighsandLows81 profile image
HighsandLows81 in reply to mikewilliams

Hey Mike,

Apart from the difference in amount of pregabalin you take and swap tramadol for dihydrocodeine and we’re in exactly the same position. I’m so sorry to hear that because if you feel anything like I do, I’m scared, I’m angry and now, I don’t know where I stand.

It’s disgusting how we’re being treated because we’re basically getting tarred with the same brush as people who abuse these drugs. WE DON’T. We take them for pain. I’ve had the same crap, that the painkillers don’t really work. How do they know?? That makes my blood boil.

I feel that they genuinely don’t care or understand how these meds do help us.

The fact that you say why now? Why now when you’re finally getting back on your feet? They’re basically screwing with our lives because Drs in this country now seem to have one goal in my mind, and that’s to get people off painkillers. And from what I can make of it is because of the USA and the opioid epidemic that is happening over there.

What is that going to achieve except more problems and they’ll also be much worse problems?

I’m really not exaggerating but I’ve never been in as much pain as I am now in 15 years of this shite and just like you feel, why now?

Why now when we need them the most??

They aren’t treating us like human beings, I’ve spoken to quite a few ppl where this is happening to them too. A few talk about suicide because they’re so scared about how they’re going to manage with no pain relief. I know exactly how they feel.

I really hope that it gets sorted out for you. I really do because I’m genuinely scared because I don’t know what’s going to happen to me now.

It’s not like I’m a hypochondriac! I wish I was because I wouldn’t be in pain then!

I’ve been diagnosed with an incurable disease along with other issues which means I have had to learn how to just live with it and try to manage it. Which includes pain relief. Your tramadol, is it 200mg altogether daily? Or more?

I just don’t know what to say anymore because I’m so tired of trying to figure out what I’m going to do.

One thing I refuse to do is basically go back to the start and be forced to go back and forth my a&e simply to be accused of drug seeking.

I could be reckless and buy them online but I’m not that stupid. But I am going to tell my dr that it seems like my only option. Just so I can try and get through to her the stress and misery they’re causing.

Best of luck and sorry if I’m rambling but I’m literally stuck and don’t know what to do. 😐

mikewilliams profile image
mikewilliams in reply to HighsandLows81

Hi HighsandLows81

Yes i am on 200mg Tramadol (plus 600mg pregabalin) i was a little bit stupid for a while and bought meds on the Net (DF118) but change of law said suppliers had to notify Doctors , i didn't want that to happen it makes life more complicated, so that was that.

I really do think that Doctors care more about reducing opiates than whats best for their patients.

Stick with it,, life will get better i Promise.

Mike

Jayjay46today profile image
Jayjay46today in reply to HighsandLows81

Hi there yes this pregablin is a major issue I was on it for anxiety but I was also self medicating as the Dr suddenly stopped my 10mg of diazepam for no reason other than I don't think you need it, well if only he f...in new. Anyway I sympathise with u as u need it for pain relief that must be so confusing I won't elaborate ok. I chose it as it was ready available to me from a pal and it replaced Valium it made my appetite great, sleep awesome and energy 100 now I feel dead with over 20 side effects after 1 week I'm off it now but withdrawing badly, noises, sweat's and my fear levels are out the window but I will carry on and I hope you will too ok e are all different but the same

lb003 profile image
lb003

I totally agree about Pregabalin as I came off it too, as I also couldn't cope with the side effects and I was only on 300mg. It took ages to get up to 300mg as it just didn't agree with me. I decided I'd rather have some ability to think clearly than be a staggering zombie. Interestingly I don't think it did anything for my neuropathic pain, but it just stopped me caring , about everything.

To help with inflammation, I've always found Devils claw helpful. I used it to get off NSAIDS after an L4/5 prolapse. I'm now using it to help me manage arthritis without NSAIDS. They are cheap and easy to find online, so it might be worth a go.

HighsandLows81 profile image
HighsandLows81 in reply to lb003

Thanks for the tip. I’m definitely going to check out Devils Claw.

To be honest, why were they so insistent on giving you a drug that blatantly did not suit you.

It’s because turning us into uncaring, zombies where you literally can’t think straight or care about anything is preferable to prescribing pain relief.

Yeah. Great idea doc.

Thanks again for the tip and I hope it’s helping you. N x

ExproSi profile image
ExproSi

I have scoliosis in the base of the spine and in the neck (not so much) and am on Morphine tabs. Started on 10ml twice a daily but its now up to 80ml twice a day. After a while I get used to the dosage and then they have to up it. Last time the doc said he'd try 45ml twice a day Pregabalin as well as the Morphine. It's just done the same job basically. Only side affects I get is a really bad stomach if I forget to take my meds but that's with all not just Pregabalin which I've never had any side affects really.

flamenca1 profile image
flamenca1

Hi Rusty8

I stopped my 2 x 75mg Pregablin in the morning, still took 2 at night. I felt OK apart from I had pains and cramps in my legs daily. I had a flare up of Osteoarthritis and couldn't walk for 2 days. Rang GP and he advised me to start the Pregablin again, so back to square one. Leg pain has stopped at present. Good luck.

Hi Rusty

Twelve years ago I had an electric shock pain across T6/7. Only after some years did I realise that at that same time I got a rare form of chronic blood cancer MPN ET JAK2+. The high platelet count on my blood results coincided with the pain, that I must say was absolutely incapacitating. I found it hard to crawl out of the black hole a number of times. Horrid pain is so exhausting. I have been on many strong drugs, but I have never given up on is Lyrica 300mg. I started on 75mg. I take it with long acting Tramadol 300. It is a very difficult drug to take in the beginning due to the heavy sedation and side effects. I call it the silent wonder. When I take it daily I don't necessary feel the benefits but if I don't take it I see the stars. I hope that helps. A drug I have found to work exceptionally well for my type of pain is called Rivatril. God sent. Just another to add to the potion of possibilities. When things get real bad I like to go the chiropractor.

Kind regards

Anna

Rusty8 profile image
Rusty8 in reply to

Hi Anna I have only just seen your comments not very good at this getting better lol

I am on lyrics just been cut down to 75 mg 3twice a day at first horrible side effects but once got used to them yes it was better for the pain I’m also on longtec 10mg three twice a day also paracetamol 2four times aday which I haven’t taken for ages but the cut down on lyrics is not working I have gone along with it for 3 weeks at least and don’t know how much longer I can persevere not long me thinks lol

I can’t walk at all have a electric wheelchair to get from a-b but it is the moving from chair or bed to wheelchair that is the painful part now do I increase pain killers and Not be in as much pain or do I leave them as they are and be in more pain but only for about 5 mins any suggestions

I forgot I am also on steroids 8and a half mg a day

I would appreciate any comments thank you

Dear Rusty

What steroids are you using and is it tablet or injection? I think that you would benefit from having a more consistent medicine protocol and it is a case of trial and error. Increase the Lyrica to 150mg and see how the works. I found after much trial and error that rather than taking multiple doses daily one strong dose once a day worked better. I take my drugs once each morning, all together and then take short acting tramadol 100mg about 4 or five hours after my morning dose and then once before bed or in your case I would suggest half an hour before you need to bath or be put to bed. So My morning dose enters the blood stream at a slower rate but lasts longer. I have another post that you might find helpful. I have tried everything and have been on this protocol for seven years. It is not a science. Nothing seemed to work last week.

Rather than the drugs you could try taking Magnesium Forte and

B-12 Extreme™

Sublingual Vitamin B12 Pill. I buy the B12 in the USA from a website called ProHealth. (I live in Australia). It is the strongest oral form of B12 in the world. It is also absorbed under the tongue rather than the gut so less chance of a Gastro Intestinal Bleed.

What injuries do you have and how did it occur? God Bless Rusty.

Anna

Rusty8 profile image
Rusty8 in reply to

Hi Anna I'll try to answer question about injuries I have had but please anyone seeing this don't think I'm moaning as that is the last thing I would do

I might forget some of the things but I'll give it a try😂😂😂 age 15 car accident in Malta broke arm and femur which was pinned sent home had bone graft no good after a few years had tb then had hip replacement which was good lasted about 20 years then kidneys failed and had kidney transplant then knee replacement next a spine op that went wrong so now have spinal stenosis

Fractures o all sorts gone wrong with spine c diff 4times bowel problems the hubby passed away and since then had two falls and a black out which I'm sure didn't help so now not walking pueumonia i sorry spelt that wrong that was last Christmas a few haematoma since . I think that's it Anna but we have to put a brave face on these things there is always someone out there worse off I just wish doc would at least sit down and have a talk still managed this long yes I'm 72 and yes I had my hubby so help you take care

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