chronic pain: I am thinking of trying... - Pain Concern

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chronic pain

Bett50 profile image
24 Replies

I am thinking of trying pregabalin for the chronic pain I have from osteoarthritis in my back & most other joints but I am wary as I have heard horrifying reports from people trying to come off it. I’d be interested to hear people’s opinions please .

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Bett50 profile image
Bett50
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24 Replies
Hazel_Angelstar profile image
Hazel_Angelstar

I've been on Pregabalin for 10+years for fibromyalgia. Other than being a bit spacey at the start and putting on some weight I've had no issues with it. Doesn't take pain away but reduces the intensity enough to allow me to function and live my life including work part time

etheral profile image
etheral

Pregabilin can be very effective for some people with neurological pain and fibromyalgia but is very difficult to wean off from if used regularly. A typical starting dose may be 150mg twice daily and increased to 300 MG twice daily. f effective and used regularly it could take months to withdraw from with withdrawal symptoms similar to opiods Best etheral

Jackiemerritt22 profile image
Jackiemerritt22

Don't try it it's Horrible. Do you want too be a Zombie

Rockelburger profile image
Rockelburger in reply toJackiemerritt22

do you have any other suggestions? don't they all make you a zombie?

lupus_01 profile image
lupus_01

Unless you have bad nerve pain I wouldn't bother. I have had gabapentin,Lyrica pregabalin in the past. They didn't stop pain but took the edge off. It took me two months to come off them and I had some nightmares. There are other pain meds you could try plus tens machines, hot/cold compresses that will help

cyberbarn profile image
cyberbarn

As others have said, pregabalin is usually taken for neuropathic pain, rather than the sort of pain that comes with osteoarthritis. Although problems from osteoarthritis can cause neuropathic pain.

However, it may help, but you have to remember that everyone reacts differently to drugs. There is something called the Number Needed to Treat (NNT) it is how many people need to take a drug for one person to have a benefit.

For pregabalin the NNT is 11, that means for every 11 people who take pregabalin only one person will have a benefit.

The opposite is number needed to harm, and for pregabalin it is also 11. for every 11 people that take pregabalin one person will stop due to adverse side effects.

The problem of course is that you won't know which group you are in until you try it. This is also why when people ask on forums for experiences, there is a very mixed response. Some will have had adverse experiences, some will have done well on it, and for some there will be little effect either way.

If you try it and it doesn't work for you, there are other alternatives for neuropathic pain.

Imagine1 profile image
Imagine1

Hi Bett50, I have been trying to get Pregabalin from my doctor but he won't prescribe it because of the many side effects. I don't know whether it is because I have Complex Regional Pain Syndrome, if it is because of that surely he should give it me to help me cope with my excessive pain. I have recently been diagnosed with Sciatica and it is absolutely killing me, I can't walk, the doctor knows this and he asked me what do you want me to do about it. He knew the pain I was in, I was nearly crying and still he wouldn't give me anything. It is getting ridiculous how a doctor doesn't help someone who is seriously ill. This isn't the only pain I have and still I get no help from anyone. Take care.

Konagirl60 profile image
Konagirl60 in reply toImagine1

Have you tried Robaxin? It contains Acetaminophen for pain and Methocarbinol for muscle spasms. It might help.

Pregabilin made me have brain zaps, I gained weight rapidly and it did not help my pinched nerve at all.

It IS a medicine that has severe side effects and it’s hard to wean off of. I quit taking it after two weeks. I lost my wits. I don’t recommend it as others have stated.

Imagine1 profile image
Imagine1 in reply toKonagirl60

Aww thank you for your advice. I am currently taking Nurofen express and at the moment it is helping me to be able to walk a bit better, as soon as I put my feet down on the floor when I get up out of bed I am in terrible pain probably from the sciatica that I have now developed, as soon as I take Nurofen it seems to settle the pain after an hour. It would be a nightmare if I was to put on weight because I have lost 2 stone in weight and feel a lot slimmer, I went from a 14 to a size 8. xx

Bett50 profile image
Bett50

Thank you everyone for your replies . It seems that it’s not a drug that will help much with the sort of pain I have .

I think we all feel cast adrift by a lot of our drs at the moment too.

I also have osteoporosis & i am pretty sure I have another fracture in my spine but the dr will not send me for an X-ray as there is no treatment for a compression fracture so we just carry on with no support or help.

Emma2017 profile image
Emma2017

I was put on pregabalin for extreme nerve pain. I quickly was on the highest dose allowed. It only took the edge off and after a while my body responded in a way that sounded similar to drug withdrawel as in if I did not take it the nerve pain got worse. I decided in the end to come off it as I did not like the dependancy. I slowly reduced the amount but it took me ages to get off it completely. I gained weight while on it which was not beneficial to my leg and back problems. I now have the odd dihydrocodeine if absolutely necessary. I will never go back on pregabalin or its sister drug.

However I do appreciate that for some people its a life saver.

LancashireLad1 profile image
LancashireLad1 in reply toEmma2017

Hi , the problem i found is that pregabalin helps at the beginning but then i think your body gets used to them like everything else , over the years i have been able to come of a lot of medication for my illness and just put up with what i have to with flare ups ...

JamesB-007 profile image
JamesB-007

Hi Betto,

I was on Pregabalin for years for chronic back pain. 4 x 150mg per day.

During lockdown I decided to stop all pain medication and stupidly went cold turkey. I'm my case, all I noticed was an increased level of seating for about two weeks. I was ok after that.

Sadly I back on them.....

Everyone will be different and you should not be out off by this. Your GP should give you less dosage so you can come off them sensibly ie taking 75mg etc

Jaff1 profile image
Jaff1

I used to take them for neuralgia after the amitriptyline stopped working. I was on around 160mg daily if I remember right. When they stopped working I went back to amitriptyline although it was double the dose.I can't remember any problems coming off because I just stopped them. I wasn't even thinking about withdrawal symptoms because the amitriptyline was working. I have also read about people struggling to come off. At the end of the day, will it help your pain, if it does, that's great. If it doesn't, you won't have been on them long enough to suffer any withdrawal symptoms. Hope this helps.

hiker2023 profile image
hiker2023

I just got off it - three month gradual tapering off with no issues and while it was effective when my pain level was consistently high it came with side effects I couldn'ty stand - brain fog, weight gain, and general fatigue. Those siede effects are now gone and I have lots more energy. I had been on gabepentin for a few eyars and then chnaged to pregabalin when the gabepentin became less effective.

hiker2023 profile image
hiker2023

meant to mention htat I was taking celebrex with the pregabalin and I continue that supplmented with Cannibas edibles for sleep and to take the edge off pain before sleep and I feel so miuch better now off the preabalin.

Rockelburger profile image
Rockelburger in reply tohiker2023

Where do you get the edibles from please? Will the gp presribe?

hiker2023 profile image
hiker2023 in reply toRockelburger

am in usa You might check out this website levaclinic.com/medical-cann...

Kemptville profile image
Kemptville

Hi Bett50

I have been on lots of different pain killers and have had varying results . I was only on pregabalin for a short time and didn't have any withdrawal symptoms. If possible I would try and get seen by a pain consultant. I am currently on Amitriptyline, Buprenorphine patch , Duloxetine and Etoricoxib and it has given me complete pain relief.

Everyone responds differently and it is a case of finding which combination suits you . Hope this is of some help.

Bett50 profile image
Bett50 in reply toKemptville

thank you for your suggestions , the pain clinic sounds a good idea

Rockelburger profile image
Rockelburger in reply toKemptville

I didn't realise you could take all these things at once, my GP seems to suggest one, then come off that and try another. I am also under a pain consultant who prescribed the capsaicin patch - it did help but NHS have since cancelled all my appointments due to nurse who does it being off sick. not heard of nuprenorphine patch

Kemptville profile image
Kemptville in reply toRockelburger

I think you need to see another pain consultant . As they are dealing with pain killers every day they have a better knowledge of combinations of pain killers than your GP.

1vern0n profile image
1vern0n

My GP suggested Pregabalin when I found Amitriptyline not being as effective for my arthritis in my knees and spine. He started me on the lowest dose and gradually increased it until I felt some benefit. Unfortunately, by the time the dose helped my physical symptoms I was getting forgetful and felt "drunk". I was frightened to lose my independence and the ability to drive safely so, with my GPs support we gradually weaned me off them over a few months. Unfortunately there is no one fit for all with medication and some people benefit more than others. Good luck with finding an effective combination of meds or any holistic treatments available.

Blackknight1989 profile image
Blackknight1989

I’m an addicted personality and with all the surgeries of the last 18 years or so it was the last knee replacement in 2014 that I got hooked on gabapentin…my GP locally took over pain management post-op as I choose to have the knees done at a major metropolitan hospital (my best friend from high school did his residency at Methodist in Memphis TN which is where he recommended) but it’s a 90 mile drive and at the time 1 of the two bridges over the Mississippi River was under emergency repair so an 8:00 AM appointment could turn into 6 hours sitting in traffic and of course 2 hours in the waiting room…long story short I stayed on that poison for almost 4 years…finally after about a 60 lbs weight gain and months of zombie-like daily activity I decided to stop…we’ll post AKI (really about 2001 so more like 5 years post ER room death) I stopped my 1000ml bourbon habit cold-turkey 2 days before my 35th birthday…thought I could do the same with the gabapentin…no way…after 2 weeks of trying to kick it at home, not working etc…I finally had to go to an addiction clinic…I had read about the beneficial results of Suboxone in kicking opioids and while I felt like an inner-city heroin user in that treatment setting (no disparity meant to an inner-city addict just my mental picture and disgust at myself) I was able to kick them completely without the horrible side-effects…I do have a script for gabapentin currently but the new science shows a dose of 100-300mg is just as effective as those mega-1800mg doses that kicked my butt, and I only take them when I have gone 2/3 days unable to sleep longer than an hour or so due to the OA flares…I’ve used many mind-altering substances but the gabapentin (it works on the same area of the brain as benzodiazepines like XANAX but in much higher doses) was the only one I felt that my body needed AFTER my brain won out and told me I had to stop if I didn’t want to die soon! Just my experience…plus the latest guidelines from all the “arthritis societies” say it’s no longer recommended for any type of OA but in the hand…my best to you!

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