Sensitive to side effects anyone?

I have just had what turned out to be my final visit to a consultant neurologist. I have been investigated for the last 2 years for what turns out to be small fibre neuropathy. The side effects from the drugs I have been given - amitriptyline, gabapentin, pregabalin - were so severe I could hardly function let alone work! I had a lidocaine infusion but that did nothing, so no more were given. I told the doc that if I was lying on the sofa all day long and not working then I could probably take these drugs, but I work, so I can't. I have now been told to take Tramadol for the pain. The consultant has said that all tests have come back negative, that I have a small fibre neuropathy and that the pain is greater than the condition I suffer from. I have 95% nerve function in my feet, apparently. I felt in a huff and unbelieved but my hubby, who was present at the appointment, said he was trying to show that I had an ailment whose pain is worse than the condition itself. Nothing can be done to cure it, no prognosis was given - I don't think they know - and he didn't bat an eylid when I told him my next appointment with the Pain Clinic was April! Sorry for rambling on, but does anyone else suffer horribly with drug side effects or am I the only one for whom 10mg of amitrip leave me zombie-like for 16 hours! Thank you. Maggie

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  • Hi Maggie

    No your not ,I have just come off Tramadol having been on them for two years you need to Google Tramadol and see the side effect of them. It has been the worst two months of my life coming off them only to be put on to amitriptyline and like you could not think straight .I think it is a shame these consultant can not Experience pain I have given up with the doctors and the most I take is panadol but am Seeking the help of a holistic therapist and have Massage weekly it is the best thing I have ever done .i broke my back in a car accident 20years ago and have been fighting with doctors ever since. Try and keep mobile as much as possible if you can I find swimming very good.

  • Hi Jodie - thank you for replying to my query. When the doc said that most people are ok on a small dose of amitriptyline, I nearly lost the plot and asked him if he had ever taken it AND tried to function as well! I have tried swimming but before I did my other consultant warned me that even the pressure of the water against my skin could set the nerves off. And sure enough it did! I spent a day and a half in bed and the rest of the weekend hobbling pitifully! I'm glad you get some relief from massage and hope you continue to get benefit from it. x x

  • I tried gabapentin for 9 weeks, back in 2004. I gained 12 kg and spent the whole time on my sofa before finally giving up - gave up just as much because of the weight issue as because I was dozing my life away. Was offered pregabalin but declined since weight increase was just as likely. Have tried amitriptyline in the past too, did absolutely nothing for me. I have been medically retired since I was 30 years old, 18 years ago.

  • Hi Helene - I think Gabapentin and its 'sister', pregabalin have awful side effects. I think amitriptyline helped but only because I was comatose for most of the time! I'm sorry to hear that you had to be medically retired at such a young age. I work part time at the moment but that may change in the future. My boss is very understanding and I very rarely show the pain - apart from the odd wince or three! Best wishes, Maggie x x

  • My husband tried both gabapentin and its sister pregabalin with dreadful; side effects. Couldn't remember where he lived when we went out. He is now on morphine patches topped up with paracetamol. He also has acupuncture every 6 weeks in his upper and lower back. It all helps but never pain free.

    Like you - the injury to his back has long healed but the nerves didn't read the book.

    Self management does help. Stop before you start hurting rather than the hurt is so bad you have to stop. Good philosophy but harder to do.

    We do have an excellent Pain Clinic and consultant who are so supportuve.

    Paton

  • Hi Paton - sorry to hear your hubby had such awful side effects - I wish these docs would try the drugs themselves and try to function before they are given to us! In common with your husband, my nerves do not know how to switch off and it was described by the Pain Clinic as white noise that is normally filtered out by the spinal chord, getting through and then it is just a vicious circle - sigh! I am better at pacing myself than I was, but I still have a lot to learn! My Pain Clinic is good, but my next appointment isn't till the end of April and I have been told to take Tramadol in the menatime. Maggie

  • I have been using Gabapentin for 2 years along with OxyContin and have had no problems. I sleep better at night, but I consider this an advantage. I have been left with peripheral neuropathic pain after chemo 2 years ago. Has anyone heard of using vitamin b12 to help with nerve pain?

  • Yes, a private GP suggested that I take vitamin B12 to help with pain but I haven't tried it yes as I am waiting for it to arrive.

  • Thanks to everyone who has replied. I have read up a bit about this as well. As you get older this is one of the vitamins you don't retain as well in your body so supplements can make a difference. I am trying it and will let you know what happens - only two days so far. Even if I can reduce the pain killers I'm taking this would be an achievement. I have to say that having read these blogs I feel a bit better as I don't have the side effects from these drugs. What I would like is to reduce the affect of the flare ups which mean I have to stay in bed.

  • I stay away from medication of any sort unless its absolutely necessary.

    Unfortunately it is very common for an acute pain signal not to switch off after the problem has improved. And there is nothing that can be done about this.

    At best, you can analyse your life, and change your environment and activities to accommodate it. I go to a sports physio when I have flare ups. They have a great talent for finding the source of pain and treating your whole body. They will also show you how to treat yourself, advise you on how to go about your daily tasks, by mixing activity and rest periods. That means for every x minutes you are sitting at work, you have x minutes walking, standing, stretching etc.

    Your body does a thing called compensation - hurt your right ankle, you weight bear more on the left, you start limping. Your spine is out of line so you get a bit of back ache. The brain senses something is wrong so sends pain messages to your neck, and so on. It does this to slow you down so your body can heal. But before long, the brain becomes accustomed to sending out these messages and they become the new default.

    Your work should ensure that your work place is adapted for your needs and occupational health can do an assessment and report of suggested changes. You can look at the work flow and make changes to mske things easier to do. You can also ask your work for flexitime, shorter hours, or work from home options if the type of work allows. Even if its just temporary, it will give you some breathing space.

    I left employment and became self employed working from home, just to be able to manage my work within my activity schedule.

    The Pain clinic will have various therapies for you to try, some will work and some will aggravate. They show you how to pace your day so that you function at your optimum. They will also show you techniques that intefere with the pain message pathways which may result in short periods of pain relief.

    I use meditation. I see the pain as a colour and change the colour to turn it off. I practice mindfulness - focusing on the moment and activity using all senses. I vary my activities during the day balancing activity and rest in ratios that suit me.I have aromatherapy and massages. I do diversion - getting lost in an activity, mainly crafts. I have an exercise/stretch regime I do 2-3 times a day. I've changed my kitchen and bathroom to make it more acessable and user friendly. I have memory foam insoles and use walking poles when I go out walking. The extra stability means I can walk faster and further without injuring myself.

    Yes, I still have pain ranging from 6 -8 and I can read it well now (11 yrs) but its not the first thing I think about when I wake up. My various aches and pains have names, making friends with them goes along way to accepting it. I have to plan my day quite carefully, and my week even more so if going away.

    Theres nothing drs can do, but there is plenty you can do yourself little by little. Small changes can make a huge difference. Try them one at a time so you can monitor the effect for at least 3 weeks. I doubt it will take the pain away but it should lessen it.

  • Hi Zanna. thank you very much for your informative message. You are quite right in that my brain has forgotten how to turn the pain signals off and then it is just a vicious circle. I, too, have been thinking about meditation and will look into it further.They are really good at work with me and know I cannot walk without causing extra pain so don't ask me to go trudging off somewhere! There are lifts at work and as I have a Blue Badge, I can park right by the entrance - so I have no complaints there at all. I will also try the colour idea - I realise that I need to do more myself to cope with this nerve pain - after all, I'm going to have it forever! Thanks again Maggie

  • Thanks. Your message confirms what I am doing to help myself.Pain is very wearing and you have to keep it at bay ! Drugs through time become inafective

    I too found Mindfullness Meditation helpful I learned it through the pain clinic ,but you have to use it like a tool .and it's amazing how it can change the pain message to the brain, but takes a lot of practise and worth it in the long term

  • Have you considered Complex Regional Pain Syndrome? I have this condition it won't help with your meds and I don't know all your symptoms but it may well be worth you looking it up, there are published guidelines for GP's etc for people diagnosed with this. Do a search and let us know how you get on. I think from my point of view being believed was the most important thing.

  • Hi there - thank you for the info and I will look it up. The consultant says it is small fibre neuropathy, but as he dosen't know what causes it and cannot cure it, then how can he give this diagnosis?! I do understand that they have done every test that they can think of and I'm glad they have and that I haven't got a 'nasty', perhaps it's just human nature to want a 'cure'. Thanks again

  • I've had so many bad side-effects from medication that I don't take any meds at all apart from Levothyroxine and it took me about 6 months to get used to that! Even my GP said I managed better without the meds... just hope the ESA decision makers agree :/

  • I'm on Levo too! My first consultant said that I was 'side effect sensitive' and really understood the problem as one of her other patients was in the same position. I hope you get on well at your ESA review - it's bad enough being in constant pain without the stress of ESA. Good luck x x

  • Thanks xxx

  • Painclinics will assist you in general pain control environment. One of the main problems with chronic pain is that you become sensified to pain, then it becomes a negative feeling that makes the pain worse, The contr indication then makes need stronger pain medication that makes you take more medications to control your pain, hence making you feel like crap because of the contra indications of medications hence the circle becomes a self fullfilling problem. When you try and reduce your meds after say a flareup you then get the contra indications from the medication that causes the symptoms of withdrawel.

    You then feel drained or that you want to climb the living room walls, so you need to come of them slowly and not be in any form of hurry.

    It is strange that they say you will not be addicted although you will get the contra indications

    of opiate type drugs. You need also realise that the body becomes sensitised to pain that is why possibly then becomes a very personal feeling hence the reason they try and use a numbering system to explain your pain levels, where a level 1 pain in one person can become a level 4 in others.All this in general makes patients want to come of the meds

    Some patients stay on meds on care and matainence dose so it becomes not so bad as withdrawel.

    We all get discharged from hospital, many end up with a appointment say in a years time, you can always ask to go back if it gets worse just ask the GP. There is only so much they can do for you thats why they will send you to pain control as mentioned before pain is a very personal thing

    I know this is very converluted, the main problem is hospitals need too see a positive result so thats why they are sending you to pain control, that in turn is very popular.therefore very busy.

    GOOD LUCK

    BOB

  • Hi Bob - thank you for your reply - and it's absolutely spot on! The Consultant has left me with an 'open appointment' which means if I get worse or any other symptoms I can return to him. I guess I want a cure and not just management of the pain and I know that I am asking far too much and need to get my head round this! I intend to investigate the other avenues that have been recommended in other posts. Thanks again Maggie

  • when i first found this site i wrote a blog saying in pain for 19yrs. ive had many replies and tips for pain management alas very little helps, i now seem to be allergic to a lot of medication that in the past i wasn't. ive found a little relief by calling the different pains names and swearing under my breath at them no pain relief but by eck it makes you feel a little better, at this moment i'm effing and blinding to myself aarrrgh you B-----'s..... take care

  • Good idea to call the pain a name and it has been suggested that I give it a colour and then change the colour in my mind. I do eff and blind at my pain and rail against this bloody condition too! Good luck and take care yourself.

  • No point in railing against the condition. Use that energy to work out how you can live best with it. I have CRPS and I cannot beat it. I can work with it, however - and I can be very kind to myself. Your meditation sounds interesting. I have found self hypnosis to be very effective against pain at night. Good luck with everything xx

  • I have RA, OA, Fibromyalgeaa and osteoporosis, plus coeliacdisease. I was told I was too allergic for th NHS to treat me and to go to complementary mediicne. I did so and onc I was dusted down, I started learning medicine and now have an ND. I am saying this as one of thte best things to do is to learn what is wrong with you that has been diagnosed. Be careful. don't learn anything you have not been disgnosed with else you will suffer from every disease. You will find understanding helps alleviate pains as one can learn to ignore the signals and if all else fails at least you do not have to worry about them cos you know the cause and effect. This is not easy to do,but what I have found best. I teach tai chi and find it really helpful, have massages and aromatherapy and so on. No I cannot have any drugs cos of allergies etc. May help you or might not but it is what I do.

  • Hi Maggie,

    I really feel for you but don't get disheartened. I'm really sorry you're having problems with medication. I'm on pregabalin with duloxetine as the pain is too severe without medication. The pregablin causes short term memory problems and the duloxetine causes increased body heat and both cause drowsiness but I've adapted to them now and continue to work full-time. I used to take amitriptyline but couldn't get past 10mg due to it causing chest pains. How long have you tried the different drugs for? I time my medication around driving so I take some when I get to work. I also have coffee first thing which really helps. I've been on them over a year though.

    I also agree with your husband though I wasn't there so can't really say but there are lots of peripheral neuropathies like yours, and mine (postherpetic neuralgia following shingles) whose pain is worse than the damage i.e. a tiny bit of damage in a nerve can cause massive pain problems. So the pain is the long term condition in a way. Its like a wiring fault in a burglar alarm which has gone off for no reason (i.e. not a burglar or cat!) and now can't be stopped (very easily).

    I recommend you join The Neuropathy Trust (http://www.neurocentre.com/). You can subscribe to their journal which they send to you 3 times a year. They are really friendly and supportive.

  • Pain Management is a 24hr a day thing. As others above have indicated you have to learn about how you function. You have to study yourself. This takes time. Sleep is important. Do you get enough sleep per night? Do you need extra sleep doing the day? How tight are your muscles? Have you a partner who is willing to help you move them with as little effort as you can.

    Alexander Technique is helpful as a method to help you to use the body the way the body is designed to be used. You need to find an Alexander Teacher for this. Unfortunately NICE insists that it does not look at individual therapies. I also use T'ai Chi.

    I use Chiropractic treatment to help in my own pain control. I have a session every six weeks. It will not cure what I have, but it helps keep my discomfort within manageable limits.

    I also do Mindfulness and meditation. Both these help. Both these techniques take a long time to learn to do effectively. They are not techniques you can learn on a short Pain Clinic course. Many Buddhist groups have a history of having practised this for over 2000 years and know how to understand the side effects of this sort of practice.

    I do not take pain medication. I occassionly find that I need to take antibiotics.

    A diagnosis does not help with the pain. It just enables the medical practitioner to give you a whole list of drugs which always seem to have side effects of one sort or another.

    When you have an injury whether caused by an illness or mechanical impact you are often left with reduced ability to tolerate stress. It becomes easy to go over your stress breakdown point. When you go over your stress breakdown point you ability to function statrs to fall apart. Self study will help you determine what your functioning limits are and will enable you by trial and error learn methods to keep stress below your stress breakdown point.

    Good luck with your studies into the way your body functions.

  • Thank you to everyone for your replies - you are all stars! You have given me so many different ideas to cope with the pain. Good luck to you all and I hope you have less pain in 2013 :-) x x

  • Good to hear your enthused. Its a long and never ending journey, but it does get easier the more you discover about yourself.

    I hate walking and I have to walk a couple of times a day. I used to cycle and miss it very much. I take my camera with me and take random photos. Computer editing gives me a distraction to do when I need to sit, and I print a few to sell in local shops. I would never have developed an interest in photography past the snapshot stage if I didn't have to walk.

  • Hi Zanna - I really agree with you on the distraction theory. At the moment I'm baking bread as it's my day off work - though the eating of it is a distraction from my Weight Watcher efforts! I used to run, cycle and walk and now that I can't do any of those, I need to find something else to lift the mood and therefore lessen the pain. Thank again Maggie

  • hi Maggie

    Seems like you're not alone from the number of responses to your question. I too can add tales of woe from side effects from pain medication, ranging from drowsiness, dizziness, nausea, liver function tests up the creek, problems concentrating to hallucinations. The best bit of advice I was given came from a pharmacist who told me that there was no point taking a medication if the side effects outweighed any benefits. Sometimes you have to weigh up the pros and cons and do what feels right for you -if something makes you feel horrible and doesn't help your pain, why do it? I haven't taken any regular pain medication for 2 years but am now thinking I may need to try it again. Whether or not it will work remains to be seen, but I at least feel more in control about making decisions about the pain management, and that is half the battle.

    I'm sorry about your experience with the neurologist. I've come to learn that if you have an appointment with a specialist about a particular problem they will focus on that problem, and not necessarily look at other conditions or any pain you have. I too have a problem where the pain is far greater than people think it should be, and I've had plenty of experiences where I've felt that people don't believe me, but we are not text book cases, we are people, with all sorts of variations. Don't take the neurologist's comments too much to heart - I think that when we're sick of being in pain any comment can be taken negatively. The fact is, it's your pain and it's very real to you.

    So now you have a long wait for your pain clinic appointment. This can seem intolerably long, but the pain clinic is just one aspect of managing your pain. The other things that you're doing, such as baking, are all about you getting back on top of things, and can be just as useful to you as a hospital appointment.

    By the way, if you don't want to eat your goodies yourself, what about selling them for the Comic Relief Great british Bake Off?

  • Hi teadrinker. Thank you very much for your insightful and empathic reply. Only those of us with pain on a daily basis know what it is like. I have decided, now that I have come to the end of the road with the consultants and tests, that it is my body and only I will decide what, if any, drugs I take to ease the pain. I will take Tramadol as and when required, but I certainly, at this stage anyway, do not want to be on 2 a day whether or not I hurt. As to the baking, what a good idea and I will do that. At the moment the colleagues at work and my doctors receptionists (who are all stars) are benefitting from my diversionary tactics to ease the pain!!

  • I have had a few side-effects from Gabapentin and Amatriptiline in the past but the biggest problem is coming off Pregabalin. The withdrawal symptoms are awful and I am still taking 25 mg a day as I can't face any more withdrawal symptoms. I also have problems telling what is a withdrawal symptom and what is a deterioration of my pain. I would be interested in other people's thoughts on this. Also, I now find that almost every medication I am given makes me itch unbearably. This is a new thing and means that I can no longer take any medication to help with my pain. Has anyone else experienced this?

  • Hi Marigold. Sorry to hear of your difficulties in coming off Pregabalin. Doctors tell you to take it for a few weeks to get used to the side effects and then when you do, they want to try something different and you have to deal with coming off it! I suffer from itchiness on my scalp and arms and have been told it's the Citalopram that I take for depression that is causing it and was asked 'Have you tried any other anti-depressants?' Noooooooo - cos it took me over 4 weeks to tolerate this one! I really hope you get sorted soon - keep on at the doctors until you have a quality of life that you want, bearing in mind any condition you have. Good luck. Maggie x

  • I too am having difficulty coming off pregabalin I take 75mg 3 times daily. I get irritable panic attacks very emotional whenever I try to cut down and end up taking them again as I cannot cope.

  • Pain sensatiion is v individual, peoples bodies and pain preception. porcessing are all diffrent. pain counselling can help. I Find a tens machine can help ,

  • Hi Summer and thank you for replying. My consultant said that I was sensitive to pain and when I was having my children I was described as having a low pain threshold! I tried a Tens machine, but unfortunately taking the sticky pads off was torture and really set my nerve endings jingling! I am taking 50gm of Tramadol twice a day - it is having no effect whatsoever but at least when I return to the pain clinic at the end of April I can say that I have given them a good go at a low dose!

  • Hi Maggiet I've only just found this site

    I too have been to a neurologist, dermatologist, pain clinic, rheumatologist and tried the amitriptyline, gabapentine, codeine, Nifedipine (Adalat). The drugs made me so tired and drowsy as you said "zombie like" and recently saw the neurophysiologist for tests on my nerves i.e. shocks to test the nerves.

    I totally sympathise and was also a zombie. So we are left with taking the usual paracetamol. Best wishes.

  • Hi fed_up - sorry to have taken so long to reply, but glad that you have found this site! I am taking the Tramadol, like a good girl!, but it's not even touching the pain. I am due back at the pain clinic at the end of April when they will no doubt tell me to increase the dose! Why do these docs think that side effects are ok and that we have to 'work through them'? I would love my latest neuro to take the drugs he prescribes and see how HE likes it! Hope the nerve tests went ok, I have had them and they're not the most pleasant things to go through, but it is over quickly. Keep us posted as to how your diagnosis goes. All the best. Maggie x

  • I couldn't take tramadol nor gabapentin due to awful side effects so was put on pregablin four times a day but had to reduce to 3. I feel permanently ill, have no taste buds, cannot swallow food and am becoming more and more disorientated, but for me the worst thing is the weight gain. I am also on amitriptyline ,4 at night.they do help me to sleep but I have to take them early evening just so that I can function the next day. I suffer with dreadful memory loss too. I have begged the doctors to give me something different but they won't. It wouldn't be so bad if it eased the pain but it doesn't! I now take duloxatine as well, which has taken the edge off the pain, but is it worth it to feel so unwell?

  • My ex husband has peripheral neuropathy through diabetes and alcohol.he is on gabapentin, tramadol and duloxatine, he also uses a tens machine,often several times a day. I don't doubt his pain but his way of managing it is to get his doses raised each time his pain gets worse. He doesn't see that his medication now rules his life! It has also caused a marked personality change in him. He is now gone past the maximum dose of tramadol & gabapentin, he was taken off morphine, so goodness knows where he can go from here.

    Seeing how addicted he is to his meds made me determined that no matter how bad my pain gets I will try to keep my meds as low as I can. I find that tai chi helps as does swimming, but only when I feel strong enough, it's a vicious circle!

    Using oils & meditation helps me get through the day- just

    Incidentally I find that caffeine, sugar and wheat make me feel worse as does any alcohol, so distraction is about all there is left!!!

  • Hi, you are not alone.

    I have similar prob but poss not so bad. I am like a zombie and think? I cover my track most of the time but my memory is shot and I'm tired all the time. It takes me three or four times longer to do work and. I had to go part time as I couldn't cope full time so money very tight. Working increases my pain terribly and brings me to tears but I have had to reduce meds and suffer - some days I wish I could double meds again for a little bit of short relief but I know the withdrawals will be awful so catch 22! Doctor and pain clinic seem to have given up on me and now left to my own devices so in pain and frustrated. Sorry I don't have any answers for you but at least you know there are others who have similar problems.

    I hope you get some relief and if you find something that works for you please share.

    Frame