Peripheral neuropathy

[foxglove]

I have peripheral neuropathy - taking 50mg pregabalin in morning, 50mg pregabalin in afternoon and 100 pregbalin in evening, still in a lot of discmfort and pain and cramp Anyone else on this dose of pregabalin (or perhahs more?)....does it help? Should I ask doc. to increase dose ? Thank you

[rabbits65]

Why do you want to ask doctor to increase the dose . I believe that once you start taking this medicine it’s difficult to come back off it again sorry your in so much discomfort . Give it time to work , it already sounds like a large enough dose. I was offered this drug but refused it due to the side affects. Make sure you read all about it in the enclosed leaflet.

[foxglove in reply to rabbits65]

I was told by the consultant (neurologist ) who first prescibed it that it was in order t increase dose till I got relief. I was taking up to 200 mg before and gave up because it did not appear to be effective. I just stopped taking it and had no problems with that. I feel I need good talk with gp before I rashly give up again!

[rabbits65 in reply to foxglove]

Yes that sounds like the best bet, to talk with your gp. . I don’t of course know your lifestyle but maybe there is also another way of handling your pain. Like A pain clinic or physio therapy or even counselling . I personally have found myself that medication is in itself a nuisance with awful side affects . I have horrible sciatica pain and awful feet pain and just try and manage without . I exercise my poodles and then have to rest a lot too. I suffer severe tinnitus , I’m 69. I hope you manage to get a personal face to face appointment and get yourself sorted out soon 😊

[foxglove in reply to rabbits65]

Thanks for advice and concern, hope you too get relief in the way that siuts you. Had bloods done this morning for annual health check and nurse next week, I think surgery sort of "normal" now so if ness. ahould be able to get direct appt. with gp, but I must admit I am, ok with phone apps.

[rabbits65 in reply to foxglove]

Thanks for your reply . Yes I don’t mind telephone apps they are better than no appointment at all. However I do think occasionally we do need to see our doctor . Let’s hope things get back to normal one day. 😊 xxx

[foxglove in reply to rabbits65]

I don't think it's that I need to see dotor but that she needs to see me! and I confess I'm fightened of what might be seen!!! I'm optimistic that normal is on the horizon

[stenosis49]

Hi there just to let you know I have nerve damage from prolapse surgury back in 2012. Still today I am not completly pain free and never will be but I have been taking 300mg pregabalin in the morning and the same in the evening. 600mg is the max anyway. Plus I take 75mg amitriptyline in the evening before bed. I found that at this dose I do have a quality of life. Something I never thought I could .if I am late taking the pregabalin either in the morning or in the evening my pain starts to creep in so I keep the same time each day. Hope this has helped in some way

[EmeraldH]

I had L5/S1 fusion and was prescribed Gabapentin..........took that for a while but no help, just gained weight. Switched to Pregabalin (Lyrica) and quite honestly I don't like taking any medication so I just quit. I seem to have better outcome with Advil. Sorry I can't offer any help beyond this.All the best

Doug

[foxglove in reply to EmeraldH]

Thanks for reply, sometimes the "simple" answers are the best even if not what the docs. think!

[francesinpain in reply to EmeraldH]

Doug, I had a trial on Lyrica, didn't help. Pain Doc kept increasing dosage. The result was, no pain relief but I gained 2st in weight.I stopped it cold turkey, woke first morning with frightening anxiety. I read the patient leaflet again and found it's prescribed for major anxiety disorder.

I tapered dosage down over a week, had no problems after that - except having to lose the 2st.!

[hilary1842]

Hi Foxglove, I too have peripheral neuropathy which is linked to the scoliosis in my back. The scoliosis was giving me a lot of pain and was affecting my left leg . It is in some way compressing my nerve root to give my wide spread fantom pain in my leg. I went through Amiltriptaline, Gabapentin , and Tramadol before being offered Pregabalin. I slowly increased my dose up to 600mg perday and waited for my back pain to decrease but it did not, so I slowly decreased . By the time I was down to 200mg I noticed that the tingling in my feet had returned. I had not relised I had a problem until then.

After discussing it with my GP he suggested incresing the pregabalin until the peripheral nuropathy had gone. I found this was at 300mg - in 2 doses one morning and one evening.

Since this time I have not been completly free. There have been nights when I have lain with my feet tingling and ask my self why. I have done some research and come up with some suggestions:

1) simplest reason - I have for gotten to take my pregabalin.

2) I have irritated my spinal nerves by spending too much time on my feet, this in turn has irritated the nerves involved in the pheriphal neurophay - they are all connected

3) I have eaten or drunk something which has caused my digestive system to become a ball of fire and this is irritated the nerves.

4) I have not drunk enough and have become slightly dehydrated, this also affects nerves.

I don't believe the doctors have all the answers. Those of us with chronic pain need to help ourselves as much as we can by observing our bodies and how they react to food, drink , activitiy, drugs etc. I have learnt I cannot afford to miss tablets and I must watch my diet for inflamatory

triggers . I hope this helps you to get the pain relief you seek.

[rabbits65 in reply to hilary1842]

Read your post with interest Hilary. I agree the doctors don’t have all the answers . I don’t actually think the doctors know much at all. I agree with you we have to help ourselves. I have very nasty sciatica pain in my right side, it wears me out . So what I do is this , I try to take “ nothing” I use hot water bottles when resting. I walk my two poodles as far as my body allows , this gives my back the stretching and exercise to keep the blood circulating properly. I eat plenty of fruit and vegetables . I rest/sleep if I need to . I take warm baths too. But I absolutely hate drugs and yes I have to take paracetamol , in my top drawer I have lots of prescribed meds from my doctor , I have tried them before but I am not going back to those horrible dangerous drugs that just upset the digestion . My opinion . Sorry rattled on !!!!!!! 😂 😂 😂

[foxglove in reply to hilary1842]

Appreciated this considered reply a lot ofcommon sense points points to ponder!!! . It is kind of you to be so understanding, wishing you all good wishes

[jonnyb in reply to hilary1842]

Nice to see someone looking at other angles. Keeping a diary of what helps or makes things worse is sometimes worth a go.

[Cb1963]

Hi foxglove my sympathy is with you on this one, as I also suffer with this complaint, and yes,I take pregabalin, 2 ×300mg daily but,unfortunately I don't really know if it actually works 🤷‍♂️ anymore, as I feel I have ended up with a 'double' dose of problems if that's at all possible, I already had neuropathy, and then ended up with B12 problems, which gave me even more pins and needles, and burning sensations in my legs but I also have it in my hands these days, as for your cramps, have you tried drinking tonic water? It contains quinine and maybe that could relieve some of your discomfort, but no Gin,lol,I take mirtrazapine at night which helps with my sleep, otherwise I'd be awake until the sunrise, and the dawn chorus, they also do ralvo patches which numb your calf muscles, or whatever area is giving you the most problematic part of your body, and stay on for 12 hours, but, unfortunately nerve damage is very difficult to treat, and I'm still feeling the same symptoms after nearly years, and it's not a pleasant condition to put up with, so I understand how you feel, I hope this gives you a bit of help,warmest regards, thanks.

[foxglove in reply to Cb1963]

Thank you very much for your kind and detailed reply. Yes I get the same feeling about pregabalin - ie- not sure if it's working or not and I realise nerve damage is difficult if not impossible to treat. I have tried tonic water but just cant stand the taste, I have recently bought a foot massager not one of the expensive ones ,just a cheapie dont know if that is helping either. Oh dear I'm in a right sorry for myself mood!. I take a sleepy type anti-histamine which helps sleep but another prob I have is a weak bladder so all night I'm up and down to the loo, am on med for that too but no joy. I had bloods done for annual health check today so perhahs something will show which can be sorted. Appt. with nurse next week to discuss results ....poor soul I've got a lot of moans to off load It is good of you to sympathise and I also do so with you, it's a case of chin up, keep going (ha-ha) All the best

[Cb1963]

Keep plodding on,and there's nothing wrong with having a moan,that's what makes the world go round, take care,and stay healthy, best wishes 👍

[foxglove in reply to Cb1963]

Thanks!!!....you too xx

[Hidden]

Hi there,

Pregabalin takes a good few weeks to work - or it did for me and everyone is different. I still have neuropathic pain and I take the maximum dose you can. Its brutal to come off and if you miss a dose you will soon go into withdrawal so be careful. In my opinion its the best drug for nerve pain - I have stuck with it because nothing else compares. I still suffer but not as much.

Good luck

[foxglove in reply to Hidden]

Thanks for reply and advice. I have taken pregagalin before and had no probs stopping (cold turkey) but I am on 200 mg taken in 3 doses, I understand one can take upto 600 mg so maybe it's the higher doses that hurt when missing a dose or coming off. I also find codeine helps nerve pain and to me that is harder to give up but as usual all different. Nerve pain is the most difficult thing to describe and I wouldn't wish it on my worst enemy. Good luck to you too. I have a health check with nurse next week so will ask her advice re. increasing pregabalin....agree that nothing else compares, not even my beloved codeine!

[Babaika]

U.S. Brand name : Lyrica. I tried it for a very short time not long enough to see if it works, I had a reaction, started swelling really bad. So had to stop it. I’ve tried neuratin (sp) at a low dose it seemed to help a little, which I would take. But Dr. up it to twice the dose, it made me flip out. I use a power chair I destroyed a night stand that was 70 yrs old ran into walls slurred speech like when I used to drink a lot so stopped that wife was going nuts. Give your med a chance if you can take it and always talk to gp before changing dose on any med. best of luck hope it works for you. Be safe and take care. Hope you feel better.

[foxglove in reply to Babaika]

Thanks for your good wishes,(also me to you!) I always check with gp. re meds. got too any way as it's NHS here - UK, Keep well

[Millie09]

Hi foxglove, I am on pregabalin ,my dose has been increased gradually over 12 months I'm now taking 150mg on a morning and 150 mg around late pm and 150mg at night. Pain clinic management adjusted the dose I still suffer but not as much compared to my lower dose of 150mg x 2 per day

[Katerina1]

Hello, my GP and the Pain Clinic encouraged me to try different amounts of Pregabalin to find out what, if any, helped my peripheral neuropathy. Not going over the maximum. I have settled on an amount taken mid evening which helps without being constantly sleepy the next day. It's not perfect, but I was in agony before. An occasional top up with a little (prescribed) codeine usually does the trick when things get really bad. Neuropathy pain is really horrible and not everyone is helped by the treatments. I sometimes use cool gel pads to help the burning and have a 'cradle' to lift my sheets of the bed at night. Hope you can find things to help. Oh, and I stay out of the sun too.

[foxglove in reply to Katerina1]

Interesting reply and positive, I too use prescribed codeine to help. The neuropatyy pain is indeed horrible and I find impossible to descibe to anyone who isn't a sufferer I also avoid the sun but recent blood test have showed I am low in vit D so more tablets. Good luck to you, hope you are helped

[Glenkerry40]

I have just been prescribed Pregablin 75 mg did you get any side affects ?

[foxglove in reply to Glenkerry40]

Not really apart from feeling tired and it helped with the pain (a bit!) was it neuropathy you were prescribed pregab for? I think it's worth giving it a try! Good luck anyway.

[Glenkerry40 in reply to foxglove]

I don’t like taking meds yes I was prescribed pregrab for my neuropathy I will only take them when my pain is bad I had several sessions of acupuncture which completely cured it and will have more acupuncture.

[foxglove in reply to Glenkerry40]

Accupuncture sounds a better bet,and I too tend to take pregab as I need though I think it's meant to be taken continually for desired effect Will maybe see if I can afford accupuncture sometime. Pleased you found something that worked!