I have pain in lower back SI area ,pelvis and thighs that feels like lightning bolts for over 3 years now ,i am finding it very difficult to take in that i have chronic pain syndrome as they told me 24th of december at the pain clinic , i find that the painkillers are not working (sr tramadol 150 mg and tramadol 50mg ) most of the time and i'm about to use gabapentin but have concerns about the effects and after effects in using them, i have just come off amitriptyline because of problems with them, any advice would be greatly received , just about cling on to my job

20 Replies

  • hello knoonan

    gabapentin and its sister pregabalin get raised more thn jus abut any other topic1But a good question to ask .

    these 2 drugs have a love hate relationship with CP suferers. thre never seems to be a jappy medium.

    If you can get along with them good but remember their main pprupose in life is as an epileptic drug whih stops messages getting to brain. pbviously pain fpr you.

    usually started on a lowish dose and increased to a managable level as prescribed. you must nEvER just stop taking them. If you can't agree with them then come off as slowly.

    Main side effects seem to be unaware of surroundings, lethargy and in David's case - he forgot where he lived and who I was.

    Don't be put off and have a go.

    Good Luck. oh yes cP sufferers here a re a god bunch!! And we all try to support each other.

    Pat x

  • Thanks for the reply , i had a very difficult time taking and coming off amitriptyline from night terrors, difficulty waking up, passing water ,sweating and so on. but it did help with the lightning bolts down my legs and back and the basic pain day to day i managed ok most of the time with tramadol and this is making me feel very unsure about gabapentin but the pain is starting to become unbearable again with the lightning bolts ,i can't think straight every time i start to consider starting them and almost feel sick/anxious just considering them, but what is the my alternative i have put off taking them for a week now, the flare up are happening more frequently and i'm having to try the avoid people at work , i keep going to talk things out with my doctor but i feel he is out of options and i don't start my pain management until the end of april , its taking it out of me just dealing with the anxious and sleep deprivation let alone the pain itself. anyway i feel that was a rant , glad i found this place and just this has helped , thanks

  • Always here for a rant. Don't have the answers but might offer ssome altenatives.

    Lack of sleep is almost as bad a s the pain. alwyas at night of course.

    Have you tried tens machine? heat? or heat and cold? there are othe drugs and alternative therapy - acupuncture, relaxation, some find meditatiom works.

    2 things found over many years and pain clinic will tell you. Don't wait until pain is too bad that it takes far more to get ut under ssome sort of control. And most important - pacing yourself. this goes a long way to preventing flair ups. think back to what you were doing prior to flair up. Keep a diary of necessary.

    don't get to that stage where you will try anything - try it now and don't be too critical on yourself.


    pat x

  • Hi knoonan I take pregabalin I'm only on low dose and haven't had to bad side affects however could not tolerate Gabapentin but everyone is different . Lighting bolts pain sounds like nerve pain and both of theses drugs are supposed to help with this . Good luck with whatever you decide .

  • Keep mind as busy as possible with anything positive. Difficult I know, but I know when a 'lightening bolt's' coming on, and try to outrun it by heel down, toe up on affected side. leaning over table, chairback eases out the joint spaces.(My lowest joints have hardly anything between them so get trapped at any old time. Fortunately I had started TaiChi at my ladies gym when previous extra violent episode erupted. At this moment I've only got Tramadol, Codridomol & Amitryptiline, + occasional Syndol, mix them to fool brain so up at night two or three times, only now I don't panic, I lay everything out last thing so can get tabs easily, use my intrasound belt just to hold ice-pack or hotwater bottle, alternating again as above. Tea or hot water drink, book on cooker or laptop on box on table so at right height, w' pen/pencil in case of note making. also have list of pals I can write to so not to worry about how long I'm up. The Tai Chi meditation,exercises & foundation form can take quite a time (I've counted 4 different cats, foxes and badger in our garden at night!) Yes I'm tired in day so if chance I catnap even 15 mins. helps. I have invested in another Novasonic intrasound hand-held machines also, one in kitchen, one in bedroom, ready for my 'friend' to wake up. I really hope your episodes quieten a bit, but above all, keep in touch, so many people have told me of their painful backs, it's a sad fact of modern life. Tesco's walking poles are great, the have shock-absorbing shafts & are held in an easier grip than older walking sticks, plus it looks 'sweet'. not old fogeyish ;) <

    Best wishes, dolynbyw

  • Hi Knoonan,

    I now take Pregabalin which helps my chronic nerve pain which is same areas and sensation as you describe. Like a bolt of lightening/hot poker/electric shock/firework..

    I previously took Gabapentin which didn't agree with me. Amitriptyline gave me restless legs all night, only managed to tolerate it for 3 nights then gave up.

    I also take Tramadol and paracetamol and use an Actipatch. It's a trial and error thing with pain control. After almost 2 years of chronic daily pain which has followed almost 20yrs of intermittent "sciatica", I have been referred to the Chronic Pain Clinic. I've had physio, acupuncture, private massage and spine manipulation (which almost made me vomit!)

    Hope you give your meds a try. Fingers crossed they give you some relief.


  • They may suit you but be prepared for some pretty un-nerving side effects. Good luck.

  • I am exactly the same. I am now on morphine patches which really help only a low dose but it's better than taking 6 tramadol a day. The best thing they gave me was gabapentine, I too was worried after reading side effects but I find them fantastic, I could hardly get upstairs but after about 5 days on them I was literally running up and down, I did feel a little spaced out at first but persevere and maybe start them at night. Obviously don't work for everyone but I now work 7 days a week. Still in pain but nothing like before, speak to your pain nurse. Good luck x

  • Thanks all for your inputs its so nice to had found this place, makes me feel a lot less isolated and feels good to talk things over with like minded people :) i have decided to give them ago and will start at the weekend to give myself time before work on monday, just to have a better understanding of what and how they may affect me. i know my biggest flaw is pacing myself and listening to my body, i tend to work over the pain even to the point of crying & causing flare ups that floors me before i stop, i`m pig headed and stubborn and also i ignore myself telling myself to stop! and think maybe asking for help or is this going to affect my pain later.. i need to change this behaviour NOW, i was give a book last night "overcoming chronic pain" a self-help guide and started going over the techniques and some self assessments , its funny how something so small can make a BIG difference like owning up to the fact to yourself that how i have been coping through my own stubbornness is one of the biggest problems and affecting my pain a lot , suppose i need to work with it and not against it and not expect instant results like Paton put it "don't get to that stage where you will try anything - try it now and don't be too critical on yourself" its time to put thing in place and except the conclusion the pain clinic said,thats the big one which i have been struggling with and putting off. will let you know how it going over the weekend and thank again for all your inputs :)

  • Hi knoonan

    Reading your post you sound like a double of me so I empathise with you. I tried gabapentin and was on them for about 4 months but I couldn't cope with the side effects. I actually had a crash in my car and then carried on shopping but didn't realise what I had actually done until I got home, not good I know :-( I immediately came off them. Trouble is they did help with the pain a little but not enough to warrant the side effects.

    I find it amazing to think that we can send someone to the moon but they haven't foind something to help with chronic pain without nasty side effects - damn you pain !!!!!!!

    I hope you manage you get your pain under control, it is really really hard to come to terms with the fact that you can't do what you want to do and I am still struggling so if you come up with any tips please let me know and I will do the same.

    Take care



  • I take Nortriptline it does help you sleep

  • You sound exactly like me! I had too leave my job as I had too walk a distance and they would nit believe I was in that mych pain .so I walk out and now on e I for nearly a year now .gad all your symptoms and on all the same meds was up too 3600 gabapentin I have now decreased it too half my secret I went too see a reflexology and after first treatment felt scoop much better I now go once a month too see her. And I think I have had a pain maybe two times in past three months. Not saying this is for everyone but it might be worth a try.

    good luck too you .ivdid have sciatic surgery maybe five years ago also .all the best .alfred

  • I know how u feel I get that feeling in my low back

  • Weight gain. Swelling of feet, lower legs.

  • Hi Knoonan,

    I am late to this thread-but, thought I would add and am interested in how you are getting along. I have just swapped from 5 years of Amitryptiline -varied doses of 10mg-150mg -as my pain levels had massively increased. I started at the end of November and I was VERY reticent! I am now on 600mg-900mg spread in even doses-and I am really impressed with the effects on the levels of pain-and oddly, my energy levels have increased. I really think for me it has a positive effect on my mood. I am still somewhat groggy-but that is decreasing, and the initial swelling of fingers and ankles is virtually gone. I have had some very funny mistakes with word ordering when speaking and I have been feeling a little overwhelmed with organizing my thoughts-but, it is getting better-and for me the pain relief has been worth it-best wishes

  • well started at the weekend and having some" putting words in order problems" when trying to talk, also feeling a bit out of body and my mind is not in focus with tasks and popping all over the place, started to feel a bit uncomfortable around people at work today, i know its early days and i may need to give it more not time to settle down but i'm not feeling i can continue to take them if it stay like this for much longer, also my wife said i kept sitting up in bed last night and talking ( i cannot remember doing this) feeling not myself at all but its take my mind a bit off the pain so thats not to bad :)

  • good for you knoonan. some side effects seem to have kicked in very early.

    hope you can get throughthese and get the relief you need.

    keep us posted please

    pat x

  • Hi, I am new to this site but I may offer some help. I have been suffering with Chronic Pain since 1989, I was prescribed Gabapentin originally for depression but am now taking it for pain. I have been treated with all kinds of Opiates and Narcotics, had two surgeries (Laminectomy and Fusion at s1 - s3 level) and finally have had a drug pump implanted and receiving a continuous drip of morphine. That reduced the pain levels from 9 and 10 down to a 3 to 4, which is very tolerable. I have not suffered any adverse side effects or developed any form of addiction. If properly prescribed there will NOT be any addiction worries as the drugs are used up in treating and controlling pain and NOT being used to affect the brain in other ways. You really must do your research and get referred to the best hospital or surgeon for treatment. Depending on where you live, in England the Walton Neurological Centre Liverpool is the best place togo, in my opinion. Good Luck and hope this helps.

  • Doctor has taken me off gabapentin as they were making me really confused and i kept forgetting things at work and what i was doing ,had a hell of a week with lighting pain , so going to try pregabalin instead ,anyone takes it please advise me what to expect and if they have helped you

    thnaks :)

  • pregabelin is the sister and people generally suffer less side effects. it does have many of the same qualities as gabapentin though. what you experienced on gabapentin was rhe classic side effects.

    tjey didn't work for david sadly but hopefully will for you.

    pat x

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