Neuropathic pain

hi, im also trying pregabalin for neuropathic pain, i was started at 25mg after changing from gabapentin, i felt like she was trying to kill me, i soon upped it to 50mg and waiting to go back to higher it again, my only worry with keep upping the dosage is if i feel no pain i do much more then i'll get used to the dosage and will need to higher it again and again. such a worry as we still dont know what made the pain start,

Hi, I've found Pregabalin to be a life saver for me. It's helped enormously with ME/fibro symptoms for the past year. I increased slowly from 25mg daily, to 2oo mg daily. I've now started to get severe pains in my arms, and have been told by GP that I can increase to as much as 600mg. Yes, 600mg!! I definitely don't feel comfortable with that, as the rheumatology consultant only advised to go up to 150mg.

I've tried 3 times before to increase by 50mg to 250mg, and felt quite unwell, mostly dizzy, fuzzy headed, feeling of being 'spacey' and unsteady on my feet. Not safe to be outside unaided. But I will persevere this time because the pains mean my everyday life (which is limited at best), is becoming more limited.

I find hearing from people who are actually taking the drug, more beneficial than glib advice from a GP.

I try to remain positive!!

I've been suffering from peripheral neuropathy for just under 6 years now and was originally on 600mg of pregabilin which wasn't enough, the pain was still excruciating. They then put me on 75mg of amitriptyline and sent me to the pain clinic which prescribed me lacosamide.

The doctors then guilt tripped me into changing from the pregabilin to Gabapentin because of the massive difference in price. I'm now on the maximum dose of gabapentin which is 3600mg.

Luckily i haven't noticed much of a difference between the two, my pain is still there although with all the medication im on it's nowhere near as bad.

I've now got really bad back pain that has spread to other areas and have to go for an MRI scan. I first thought this was sciatica, but im concerned that it isnt because none of my medication helps.

Doctors will not give me anything stronger than diclofenac because of all the other medication im on.

I try to stay positive but its extremely hard when to do that when i've had so little sleep because of the pain.

Hello Lulu

I know where you're coming from when you describe your pain. I too have been on numerous (it seems endless!!) different meds, including maximum gaberpentin, amitriptyline, fentanyl patches etc etc...far too many to remember over the years.

I know everyone's 'pain journey' is different, and I wish you luck with MRI. All tests should be done to rule out any of the 'nasties'. I feel that's vital so you know in your mind it's only pain and it's not going to kill you. I'm not being demeaning in any way when I say that...but rather just having the right mindset. If you know it's not going to shorten/end your life then it's a question of dealing with it on a daily basis.

Of course that's easier said than done. I don't think anyone who hasn't experienced a chronic condition can possibly know how hard it is to live with it. Even if family and friends say they undersand...if you're like me...YOU feel bad at cancelling stuff because yet again you're too ill to attend even a short outing.

Anyway, maybe that's just me!! Yours might not affect you like that. But either way, pain is pain, and it's hard to cope with. I'm finding lately that a really hot deep soak in the bath helps for a short while. Oh, and Diazapam to ease with the anxiety tht the pain causes.

Don't know if this helps you, but having a forum like this is better than nothing, and at least you'll get to hear from people who are experiencing the same as you. I know there's pain clinics etc, but at the end of the day, they get to go home...pain free. You don't!!

Good luck with it all. Keep us posted with your progress if you can. Love H

I am quiite horrified about the side effects of gabapentin and have requested to be changed on to pregabalin. I also have had problems with amitriptyline, together these meds turn me into a cabbage and cognitively I am of little use. I am advised to exercise as much as possible concentrating on the core. This is all due to a grade III isthmic spondy at l4/5 which was plifed last august with pretty much instant relief. Except post op epidural failed on my right side. This caused me such extreme pain as no one was authourised to give me anything stronger than a paracetamol drip. By 6 am my my bedding was drenched in sweat and my pulse had gone to 130. The pain relief given was sweet relief, I felt like I was going to die that night and I do not know how long a body can withstand that  intensity. My left side was fine and remained nice and numb through out the night. In the hospital I tried the gabapentin, but I found it too disorientating, so refused the prescription. I went home with the usual tramadol diclofenac and baclofen. I had to fight to get top up codiene which I need to top up tramadol for being active in any respect. At 6 weeks started physio, all good but felt more pain after- like a delayed reaction. All fine and dandy until November, when a little chancer tried to rip my bag off as I was going shopping in dusk (4.30 ish). They got nothing, but I fell sideways landing awkwardly on left butt. Refused immediate xray as all seemed fine, but a few days later felt more pain and got xray which showed I only had a grade1 and no action needed as it was as far as it could be straightened I think!! Anyway I have been getting worse since that esp at night. About 3 months ago relented and went on gaba. I was shocked by first dose and wondered how it was legal. Subsequent doses not so bad but still get blurred vision and slightly swollen feet! Unhappy about weight gain also, plus combi with amytrip, I have stopped amytriptilline. Advised by pain clinic to exercise as much as poss everyday. Which is fine when warmed up but as soon as movement ceases, again delayed reaction. No one tells you about the relapse a few weeks down the line or that exercise is fine at the time but vastly increases pain when resting. I guess resting is a bad idea then?? at all! Itry to take as few meds as poss especially diclofenac as I have been on it for too long as have osteo arthritis in both knees, some of spine and right thumb and feet. I need to get back to some kind of work, but on these appalling meds I know I would not cope. Also forward bending is the worst thing I can do, not on the down bend, but coming back up and thereafter- it feels like a ratchet, but still automatically do it as it is pretty unavoidable, It was that action that caused the massive slip in the first place as I could feel something going badly wrong but put it down to cystitis! I had no idea my spine was unstable, with bi- lateral stress fracs on l4. 12 hr shifts on run up to xmas in retail was not a good idea, nor was staying working for another 13 months. I am not sure what else I can do though as it was my life for too many years. But I disagree that pain will not kill you. The stress it causes will take its toll on the body, and I am always in two minds whether to 'push through' the pain (I used to refer to it as 'discomfort' at work as I had performance related disiplinary investiations shortly before I finally went off sick, and felt deeply ashamed I could not cope with it as everyone asumes it is a put up job) or rest. But I am sure we can have some rest days, but no more than 1 or 2 at a time. I went to pain clinic to ask for a nerve block on the bi lateral sciatica, but refused. I will ask my consultant next week if I could have one, and if it could work as I feel it is the only way forward. I cannot believe some people take these drugs for fun, as I absolutely hate them- so there