Constant pain

Hi, my name is Sarah. I live with 3 of my 4 children (eldest finally moved out) :-) I have lived in constant pain from a low back injury for 31 years.  I fell backwards over my mums dog and every day since then, my life has been a struggle. I'm now on high dose morphine,  pregabalin,  diazepam and baclofen daily,  sometimes hourly. I then suffered a miner car accident, February 2014 and had cerviogenic headaches,  cluster headaches, migraine, nerve pain,fibromyalgia, cfs and probably a few other things I've forgotten, almost every day since that day. My entire life is consumed by pain. Does anyone else live like this? Any feedback would be greatly appreciated :-) 

144 Replies

  • Hi sarah u need to go and see u gp and get them to refer u to see a pain specialist they will help u find the right treatment for u 

    Hope everything goes well best wishes from peter

  • Hiya,  thanks for your reply.  I think i have been to ever pain specialist possible.  My last "specialist " damaged me so bad that I've suffered fibromyalgia, cfs and cluster headaches since my last procedure with him.  That was over two years ago now and I rue the day I even let him touch me.

  • Hi Sarah,I have read your post and we seem to live the same kind of lifestyle,I'm in pain 24/7 and taking lyrica,cocodamol,meloxicam,BuTran patch 20mmg,diazipam but still not much relief,so frustrating and not much hope of my condition getting any better but I still have the will to live,I reckon if it wasn't for my 2 young grand daughters I'd probably be in a different place.Take care Sarah and chin up.x

  • Hiya,  thanks for your reply.  We do have similar situations and yes I to live for my children and grandchild but not for myself.  Is living for others enough?  Or should our gp's do more to help "us" more to live for ourselves?  31 years of pain takes its toll but I'm glad it's me that's in pain and not my family :-) 

  • You take much the same as I do but for Lyrica. I take Gabepentin. I am in pai n 24/7 and like you it is my four grandchildren that bring joy into my life. 

  • Hi,lyrica  and gab are exactly the same because my chemist  has given me both and I inquired and apparently they have all the same  ingredients and treat the same effect's. Take care m8.

  • You are totally right.  I'm in the middle of a migraine and forgot to write half of what I was meant to say.  I was on a very high dose of gabapentin that gave me bone pain so I stopped them. A few years later, I asked to go back on the drug and they gave me pregabalin on a lower dose which gave me no side effects.  Blimey,  I don't know how I got that email so mess up :-S 

    Sorry, my mistake.  Can we blame it on my swollen face and punchbag headache?  

    Sarah x 

  • Hello derk28,

    I am on Lyrica and Dilaudid for pain from Gastroparesis. I wanted to know if you could tell me how Lyrica actually works and does the dose have to be raised in increments until you reach the amount that helps your pain?

    Thank You

  • Pregabalin works by calming the nerves and you definitely have to up the amount you take slowly to lesson the side effects ( plus it's dangerous to start on a high dose) 

    Sarah x 

  • Thank you Sarahk 1000,!

  • Hi ya Bell,yes the Dr had me on a high dose but that seemed to make me very groggy in the morning's so lowered the dose and I now only take 2 in the morning and 1 at bedtime,he told me that they help with the nerve end pains,they are only 1 of many I'm on so l can't really tell you much else although if I have missed out on them for a couple of day's my body let's me know,I hope this was of some help to you.Oh one of the side effect's would be you might put on a few pound's but if it help's the pain then so what.Let me know how you get on.Take care.Derek

  • Thank you Derek,

    Right now I'm taking 25mg of Lyrica 3 times a day with 2mg of Dilaudid 3 times a day as needed for breakthrough pain. For the last 3 days I haven't had pain relief so the the pain management Dr. told me to up the night dose of Lyrica to 50mg I hope it works.

    Take Care

  • Hi Bell,yeh hopefully it will that's still quite low so you still have plenty of room for more movement but see how the 50 work's, I'm now taking 100 I take two in the morning and 1 at night,I used to be on much higher and more often but I'm OK on these for a while.Take care.

  • Hi bell, can't you take the pregabalin at Amy higher of a dose? That seems very low 

    Sarah x 

  • Sarah K,

    I am on Pain Management and I have to follow their dosing instructions until. They usually make me stay at a certain dose for a week wether it's working or not. They only told me yesterday I could raise the dose to 50mg at night and if after 3 days  it doesn't work I could raise the dose to 50mg in the morning.


  • Hi Bell,  

    Yes follow their directions. Slow and steady 

    Sarah x 

  • You are always meant to start on a low dose and work your way up to maximum your body can handle 

    Sarah x 

  • Hi Bell,lyrica is a slow release pain relief,i got it for damaged nerve ends after an operation on my lumber spine and yes it can be upped in dose although it does have some side effects like weight gain so its really the lesser of the evil if you know what i mean because they do seem to help with the pains,ask your Dr to explain the ups and downs of taking them,i take 2 in the morning and 1 at night although i was on a much higher dose for a while,hope this was helpful.Take care Bell.x

  • Hi Sarah I'm so sorry to hear about your pain and yes, most of us on this site have suffered with chronic pain, amongst other things, over a long period of time so can empathise with your situation, your not alone. I have suffered with chronic pain after an injury at work initially which was further complicated buy a consultant that didn't know what he was doing which resulted in nerve damage as well as leaving me in agony due to his handy work and a lifetime of chronic pain. I'm in my 32nd yr of constant chronic pain as well as a myriad of drugs which I take; fitted with 2 neuromed stimulators to easy the pain and; arachnoiditus to name but a few of my conditions. If you want to know more please ask but the one thing that you will find is that your not alone on this site. Is there anything in particular that you need to know? Please ask as a loteam of us experienced similar things and do understand your situation unlike others, whether it be family, friends and colleagues. The usual comment, when asked how you are is, "fine thanks or ok!" Which isn't how you really want to respond but if you said exactly how you're feeling they would never ask again!!!

    Anyway, don't feel alone, as I said there are many others on this site who feel the same way and are familiar with and have had chronic pain over many years. It's not a badge of honour but one we can understand. Inbox me or get in touch again on here if you want to ask anything else or have any concerns as we do understand. 


  • Hi K, out of all my fantastic replies to my post,  yours stood out the most.  pain aside, my surgeon to, made my life unbearable.  I only went in for nerve blocks,  corticosteroids injections and an ablasion and left with fibromyalgia,  cfs and nerve damage.  Thanks surgeon,  on £150,000 a year. You just make my life worse whilst you go holiday 5 times a year and drive your posh car, leaving me unable to get out of bed half of the week and the other half my daughter gets me up. I totally understand your troubles.  Thanks again for your reply 

    Sarah x

  • My unit is a neuromed stimulator and I have to say I don't think I'd be here if hadn't have it fitted as it's been a life saver for me. It sounds like youhave a similar one 7437 but there are so many different types out there at the moment all doing similar stuff. I had my 1st one fitted in 1995 which was pioneering surgery at the time but I have to say that I wouldn't be without it now. It doesn't get rid of the pain but masks it (it's like a tens machine but it bigger and better than those). 

    I think the results for some people aren't as good but I think that's down to the person who put them in as a posed to the unit themselves. They don't always work for everyone but it really has been a god send for me and wouldn't be without it. 

    My battery pack is on my side aunlike some who have it in their glutes & mine is fixed. My surgeon was the one who invented the whole thing so was lucky to be in the right time and place to have it fitted.

    As for gabepentin stay off it if it doesn't work as there are more side effects, for me that's is, than it was worth. Plus the weight gain just made everything worse. I now take pregablin which is better and no where near as bad. 


  • Gabepentin helps me but I hate the weight gain. My sweet tooth is out of control and my husband hides sweet things from me but I find them. It's desperate and I feel so miserable because of it. I used to be slim and cared about the way I looked. I still do inside! 

  • Hi letmein 

    I tried gabapentin a few years ago.  It gave me bone pain, I'm now on pregabalin at a lower dose and it helps a little but not enough. My high dose of morphine and diazepam seems to work best for me but I'm still in agony and the cluster headaches are exhausting :-(

    Sarah x  

  • Thank you im so glad it works for you, im too scared to have another fitted incase it moves like the other one. I dont have any faith in the surgeon either so that doesnnt help. I will try the gabapentin and see how that goes.

    All  the best. X

  • Hi K

    Can you tell me what the neuromed stimulator is I had what's called in NZ a spinal colomn stimulator which is 2 wires up through the back with a box situated above the butt cheek is this the same as I found mine moved and didn't work properly, the pain clinic suggested putting another in but I have said no as there were to many problems when it was put in with spinal fluid leak its put me off, I also don't have the confidence with the surgeon that's in charge he was so rough.


  • Hi Costa,I've read your post and wondered if you would be kind enough to give me some more info on neursomed stimulator's, I see you have read a post from me so no need for me to fill you in,I'd be interested if they have helped and how you went about getting them.Looking forward to your reply.Cheer's Derek

  • Yes, we are all .in the same boat and I am very happy to talk to you Sarah if you feel desperate. Constant pain is so swful and although I know my family care, I hate burdening them, so apart from my wonderful dear husband I pretend I am ok. He gets the really bad days!!  I have Arachnoiditis plus other things. Remember you are not alone. I know you may feel it but there are so many of us here feeling desperate.  I nderstand! Sxx

  • Hi sarah i also suffer from chronic pain due to an accident 28 yrs ago i fell off a ladder the height of a boat mast onto my leg and coccyx .

    I have had many drugs over the years and put in slow release morohune and fast acting morphine for past 2yrs it helped for awhile but caused other probkems one was soaking the bed everynight with sweating , i found that after awhile they werent working the body gets used to it and it doesnt have any affect so i have weaned myself of them it wasnt easy but at least i feel abit more normal , i am now just taking 1/2 an ativan when needed  armitriptyline to help me sleep a bit and venlafaxine for depression im now under a pain clinic and go to wellness meetings once a week that helps plus seeing a physio to do a few exercises has helped, i also use a doctor ho belt at night i dont know if youve heard of that its a belt you punm up when around your waist and it lifts the vertabrae it seems to help me.

    I also take vit d3 with k2 and b12 plus magnesium which also has helped no more sweats and a bit happier in myself.

    Hang in there Sarah its not easy but keep on this forum i have found it very helpful. X

  • Hi 7437, sounds like you are in the same boat as me. Never heard of a ho belt. Have I spelt that right?  I sleep on an adjustable bed with head up quarter of the way and the legs up fully. I need to keep my spine curved at all times.  Even when shopping,  I lean over the trolley.  Speaking to people in the street is agony.  I find standing still and completely upright is the worst position for me. Can you tell me about the belt you use please? 

    Many thanks, Sarah 

  • Hi Sarah its called DR-HO'S BACK BELT its a decompression belt it was actually advertised on a shopping channel over here (New Zealand) that  is .

    I also sleep most nights with my knees up as itvtakes the pressure off the lower spine , i find sittin worse for me and riding in the care just makes iteven worse the vibrations are excrutiating so i dont travel unless i have to go to apt or hospital.

    I have just started wearing the belt at night in bed as i found 1night i was so exhuasted from pain i left it on then the next morning i woke feeling the pain was easier usually i found waking the pain was always the worst.

    Go on line and see if you can find the belt as over here we could try it for 30 days 1st there is a small cost but well worth it if it works for you.

    Good luck Sarahx

  • I'm just looking up the ho belt now, vitamin d3, k2,  b12 + magnesium and the neuormed stimulator. Some really fantastic comments and useful information on here. Thank you and everyone else for your input. My poor doctor is going to get a rundown of all the info I've gathered here. I particularly like the idea of the back belt and neuormed.  Just going to do some online shopping :-) thanks everyone!! 

    Sarah x 

  • I have been reading about the Ho Belt and watching the video. How can the chap put it and get instant relief. Not possible for anyone with bad back pain. At first I was interested and even hopeful. Ha ha! No, I am not totally convinced. xx

  • Yes chuck you is it alone. That won't help at all I know. However I don't have the extra burden of many headaches. Nast jobs those.

    Sometimes you search and search and there is really no answer.,For me even pain killer fail to do thier job. I am always on the trawl for ways to add a bit of feel good into my life. Tis the only way. Looking out for the small things. 

    My small thing at the moment is a bird feeder hanging outside my bedroom window. And a few seeds growing that I chat up of a morning.

    Throwing you a pinch of star dust to light a dark corner.

    Here catch.💫

  • Caught it!! Thank you :-) 

  • nice watching the birds i love animals and watching them and stroking my cats can really calm me down and relax me.

  • Re cats scientifically proven to Lowe stress levels. Still pondering wether to replace black cat or not. I expect one will come my way of its ment, have a good day,

  • Yep! Constant pain! I get some relief for a week, maybe two! You think it goes away! 

    And then it comes back again!

    It's really annoying as no one , not even the doctors seem to care?

    If it wasn't for the pain relief pills i take at night, I wouldn't get through the night!

    I even waited 6 years for a MRI scan!

    You have to keep nagging the docs to do something or go private?

    I was given gabapentin! I also take amithrimpline as well as fluoxetine! I also take ibuprofen at night! So many pills, that I wonder if I will wake up in the morning!

    I've been resting for 4 months with these new pills, so have put on weight, and know I need exercise? So I started going for walks, as I felt up for it! I felt OK again?

    But walking has started it again , as it never really goes away!

    And so the pain started again afterwards!

    So I wonder if these pill are doing anything?

    I wish I could be of more help? 

    Maybe we should all form action group and demand action and something done by the medical profession?

    And to top it all, to add to your angiush and pain,you have to go through the living hell of constant, constant testing by the DWP!

  • Hi Simon, thanks for your reply.  I'm pleased you occasionally get some pain free time.....I never do.  Mines daily.  Some days are more manageable than the ones where you really can't understand what on earth you done wrong for all thus pain to be put upon you. I have kids to live for, if it wasn't for them I don't think I would be here. Sorry to be morbid but I'm in a 6 months cluster headache at the moment which is also called the "suicide headache", probably because it's one of the worst known pain syndromes.  I'm also meant to have an mri of my spine every two years because of degenerative discs with could it turn cause my spine to collapse (lovely thought).  Last time I asked for an mri I was reminded of the cost to the NHS.  Well yeah of course I know the cost. You remind me every time I see you.  Once my spine has collapsed I'll be dead anyway or paralysed at best so then I won't cost you anything anymore.  Maybe that's what they're waiting for. I maybe 45 and old in medical eyes but I do have 3 kids that still depend on me. Who would pick up the tab for looking after them once I'm gone? Still the government,  so just give me the treatment I need to keep them out of care :-( 

    Thanks, Sarah  

  • what a cheek reminding you of the cost of an m r i. we are keeping them in a job. i tell them i have worked all my life. (big lies) and i say iv paid a national insurance stamp and was never ill for years so i remind them its not free. they are so unbeleivable insensitive and as someone said in a post above that i read they can be so rough also. i have to keep reminding them to be careful.if they were in the pain your in i dont think they would like to be told that money was more important than finding the cause of your pain, im going into hospital on wednesdy 29th and am dreading it as some of them are so incompetant, i always had great beleif in the medical profession and doctors but all that has changed now because of some of the experienc's iv had and also listening to other peoples experience, i know that not all people have had bad experience and that they are run of their feet but thats not our fault and its easy to feel sorry for them but not when you are at the end of their imcompetance and rudeness. i hope you got your m r i. one person said above in a post that they waited 6 years for one. that is disgraceful.

  • Hi Simon

    How do you find gabapentin my pain clinic has suggested i go on it to calm the nerves, i have just weaned myself of some drugs morphine 1 off them im a bit reluctant to try something else.

    Does it work for you.


  • I'll try anything if it works?

    Does it work?

    Put it this way.

    Before i was taking gabapentin,  I sometimes got two weeks of no pain. So I did normal things; like cleaning windows, carrying shopping, normal everyday things.

    And then the pain starts all over again!

    Now I'm taking gabapentin (as I'll try anything if it relieves the pain), along with fluoxin, Amythrimpline, along with ibuprofen at nights..........and I felt ok. I have also been 'resting' for 3 months, which meant I've put on weight as not getting any exercise. 

    This week, I decided I needed to go out and get  some exercise by walking.......and afterwards, I'm back in agony again?

    So! Does it work?

    Right now, as I squirm with the odd stabbing pain which has started again......I want to say no.

    But as I've been on these since Christmas,  so I'll give it more time!

  •  I thing Gabapentin helps with nerve pen in the legs which I have constantly.  However if I do anything in the least to do with exertion I find nothing helps. Best to stay still at all times!! 

  • when we have been inactive for a while and start to exercise again we have to take it really slowly and walking sounds easy but its not as easy as we think if we have been doing a lot of lying around and we are using all our muscles in our legs feet ankles knees butt hips and arms and shouders to name a few. so have a 5 minute walk, i know if sound like nothing but it has to be built up. this has been my experience. i hope this is hepfull,

  • I'm not claiming this will cure you, but it might reduce your pain a little bit :

    I have a thyroid problem. Many of us on the Thyroid UK forum have lots of muscle and joint pain. Many of us get lots of relief from improving our Vitamin D levels to optimal.

    If your doctor won't test it for you, then you can get a test done privately. All you have to do is provide some blood spots (the necessary kit e.g. lancets to prick your fingers is sent to you after you order) and send them back through the post.

    The testing is actually carried out by an NHS laboratory.

    Once you have a result, on the assumption that you are deficient - almost everyone is - you will need to treat yourself. Over the counter Vitamin D3 is fine, there is no need to get a prescription.

    Incidentally, doctors will tell you that you are fine even when your levels are really quite low. In the Thyroid UK forum we have found that getting our levels up to around 100 nmol/L gets most of us feeling a lot more comfortable.

    There are some people who don't tolerate vitamin D supplements but they are rare.

    And you should read this and act on it if you do decide to supplement vitamin D3 :

  • Thanks very much for the information you have provided.  I will look through it now.

    Many thanks, Sarah 

  • Me again Sarah Vit D3 with K2 and Vit B12 it does help go to pheonix nutrition on line in Uk  they sell it.

    You gave nothing to lose its stopped my sweats and i do feel better i also would sooner have gone to sleep and not woken up as the pain and headaches were so bad.

    Do try them.x

  • Hi,  I found phoenix nutrition..  My order is on its way.  I've gotta admit,  I've spent a small fortune since joining this site.  I don't mind though. I will try anything suggested.  Thanks for all your help. 

    Sarah x 

  • Definitely good advice, especially for fibro symptoms. My vit D was tested when I was diagnosed and it was 1 above being deficient so I was prescribed capsules. The next time I was tested it had improved so they tried to stop my prescription, I protested and after reading up doubled the dose and it had improved my muscle aches. Still have joint pain and a whole lot of other things but it has improved things.

  • Just ordered my vitamin D test kit. Thank you for your help x

  • When you get a result I can suggest some sites to check to find out what dosage you need (assuming you are not at optimal levels already). The NHS will often treat people who are deficient in vitamin D with absurdly low doses that would never raise levels for most people before the next century.

  • I will put my results on here and if you think that you can help me further then you're knowledge would be greatly appreciated :-) 

  • I have lived with pain all my life but particularly since my radical Spinal Fusion when I was 26 (now 54) shattered the fusion 5 yrs later and had ground breaking repair anterior/posterior to try & remove broken heads of screws & tap n dye headless screws from Vertabrae + block fused from front.....still have dead screw in Vertabrae and only implemented on right side.  Have used numerous opiate & narcotic medications......we utterly become disassociated from our own body parts.....I am currently having Physio treatment acupuncture under the major heading of Graded Motor Imagery + Antiinflamatory + pain pacing myself.......I've downloaded Recognise Back program ($10) and aim for about an hour each day of Recognise Me exercises which are lots of pictures of backs and you have to recognise right or left movement/discrimination......a mental exercise to tell the body 1 is not in danger and switch off the pain response.....and it bloody well works.....not saying I can do it absolutely every time I feel a pain response but a lot of the time....Google Professor Lorimer Moseley & watch his UTube videos for free......amazing stuff and I hope you can get something from his new science on pain.  Either way you are going to have to see some Pain Clinicians and far better be of your choice .....good luck 😄😄

  • Blimey,  you sound like you've been to hell and back. Thank you for the information.  I will definitely look into it. Thank you again!  

    Sarah x 

  • Ooh. Your comments scared me a bit. I have a disc that's disappeared in my lumbar area and another that's herniated. The neurosurgeon I saw was talking about spinal fusion like it wasn't a big deal and referred me on. Another three month wait... Does anyone have positive experience  of spinal fusion? The leg/ankle pain is unbearable and I was hoping it would improve this. I'm on so many drugs, most of which have already been mentioned. 


  • It's prob nothing to be scared of unless you are going in with eyes wide shut.......surgeons don't have to tell you about complications due to scar tissue......yr GP should be upfront with what they think coz it will be yr GP or Pain Therapist explaining it all to you after the fact when you are possibly dealing with Neuromas firing in surgery site & bone graft harvest site....I had a really bad time coz I was so young when I had it and could not tone down my lifestyle to nurse along the fusion......worked like a Trojan.  You probably will follow every instruction to the letter and have a much better outcome 😄😄

  • thank you 8sandylou. I have just watched some of Professor Moseley's stuff, on your recommendation, and have to agree he is brilliant. Wouldn't it be wonderful if every doctor's surgery had a copy of him to talk to pain patients :)

  • Thanks Simon I will try it as I have nothing to lose and I've been told its not addictive  so that helps.


  • Hi Sarah

    I had a spinal colomn stimulator put in 6 years ago it was suppose to confuse the nerves and help with the pain, it helped for a little while then the wires up through the back moved I also found the box that's put in at the top of your butt cheek was very uncomfortable its put in just under the skin.

    I had this removed after 2 years of complaining it wasn't working and they removed it last year, they wanted to put in another but I couldn't go through it all again to have the same problem.

    I'm not sure if this is the same as the stimulator some one else said they had.

    Good luck with your Doctor I hope the doctors one who doesn't object to natural vits

    I've changed my Doctor a few times as they just want to promote the drug companies and give me more drugs but not take any away.

    I find this forum is excellent for getting good advice and information it has given me a lot more hope.

    All the best.x

  • Hi 7437,  I've been looking into this stimulator and although it works for some,  the others do report some horrible stories. I've ordered the Dr ho belt and vitamins recommended on here. Just a few hours pain relief is all I'm asking.  I hope something works.

    Many thanks, Sarah x 

  • Im so glad youve found the belt do let me know what you think.

    I also take votaren suppositries for the headaches they seem to help as it gets into the body quicker than tablets.

    All the best Sarahx

  • Hi 7437,,,,, just read ur reply to Sarah reguardiing ur stimulator implant and was just wondering if it is the same one i have had implanted,,, mine is a scs implant from Medtronic and the layout is just like you descrbed,,,ive had mine in nearly 3years and been in totally more pain since it was put in,,, been trying to get an appointment with my pain management surgeon to get it removed for nearly a year and he wont give me a appointment to even go and see him,,,its like he doesnt want to remove it as it will be a failed implant if he has to,,,, im in pain 24/7 from CRPS and its as if this makes it actually worse and i really want it removed ,,,, glad u were able to get urs out ,,,, Deb

  • Hi Deb .

    Mine was one of the 1st put in over here by my surgeon i think i was his guinea pig . I had to keep on at my doctors then i made an apt with a neuro surgekn who did an op years ago on my neck i had to go private he was the one after a year and a half helped push to get it removed so as he could do an mri, the original surgeon wasnt happy i'd gone private and had a go at me for doing so i told him i wasnt happy with him, it was very stressful.

    Mine was a ANS a St Jude Medical Company MTS system if that makes sense. 

    I am no worse for having it out infact i think if it hadnt come out id be in more pain than i am now.

    Good luck with getting it removed keep badgering your doctor or pain clinic .

    All the best x

  • Hi thanks for ur reply,,, well i think i was my surgeons guinea pig also ,,,, its just i think my device did more harm than good,,, since i got it implanted i have since been diagnosed with 2xbulging discs and 2 degenerating ones,,, they are so bad they cant even get a bolt fitted to them as there is not enough bone there anymore,,,,I honestly think that my scs device has speeded up this with the way it is fitted in my spine and vibrates my nerves 24/7,,,naturally no doc will admit to this,,,,im on that many different tablets and still so much pain plus a constant headache with alot of blurred vision that nobody can explain,,,,, Ive had 4 different docs write to my pain surgeon and still cant get an appointment with him,,, its driving me mad lol

  • Sounds like you get chronic cluster headaches.  I suffer 6 months of every year.  They're called the suicide headache because of obvious reasons. You either need the GON nerve blocks,  oxygen therapy or nerve denervation of the Greater occipital nerve.  Good luck. You'll need it to get any help of that level 

    Sarah x 

  • Ive never heard of any of them ,,, im in N,ireland and we are very low on information reguarding CRPS and anything associated with it ,( including many doctors ) my headaches are to do with my scs because the wires in my spine go to the back of my head and when im in pain it sends signals to my brain to block pain apparently ,, which it doesnt ,, i have these 24/7 as i have the scs device on all the time ,, but im gonna look into ur suggestions thankyou  

    Debs xx

  • Forgot to mention about the bulging discs.... You can heal those yourself by following an exercise programme for your core muscles. As for the degenerative discs..... All my discs of the spine are 70% degenerative. Don't worry too much about that because a huge portion of people have it, only some of them suffer from it. You and me are 2 of them unfortunately x

  • About my discs ,, i can hardly move ,, never mind exercise ,, if u dont mind me asking ,, what meds do u take  and is it crps u have ??


  • I'm on 200ml oramorph,  60mgs morphine,  225mgs pregabalin, 40-60mgs diazepam, baclofen when I need it, and probably lots of others I've forgotten.  I have fibromyalgia,  cfs, 30year+ back injury,  bipolar,  nerve pain, cluster headaches, migraine, and tension headaches. I'm in constant pain from my back and headaches and the fibro affects me 99 days in every 100. I'm not a picture of health lol x

  • i uesd to take 900mg of Lyrica with the diazapan which didnt work ,,, now im on 225 vensir twice aday,, with celecoxib,,duloxotine,,400mg of co-codamol and use lidoaine patches for 12hrs a day 

  • sorry that was supposed to be 4000mg of c0-codamol ,,  still the pain is unbearable 

  • Hi Debs , 

    Unfortunately I'm allergic to most of the drugs you are on. You need stronger than cocodamol.  Ask your gp for morphine or atleast tramadol xx 

  • hi Sarah,,, ive tried the morphine patches and they didnt even work on me,,,, and tramadol didnt do anything either,,,, im now used to my meds at minute so they arent doing anything anymore,,, what other meds have you tried as im for docs on thursday for more suggestions plz 


  • Hi Debs

    Really sorry that I haven't replied. I've been stuck in a migraine on and off for 2 weeks. I hope your gp appointment went well. Have you tried butrans? It works slightly different. Only other option is fentanyl. That's really only saved for cancer patients or people with MS. It's worth an ask anyhow

    Sarah xx

  • Hello Sarah

    hope ur feeling better now,,, the butrans didnt do anything for me at all ,,, ive just got another tablet added to my collection called Maxitram sr,,, so will see how these work along with the rest of the tablets,, feeling like i rattle more haha ,,,

    i did ask for fentanyl as someone already mentioned it but docs wud not give it to me ,,,,


  • Hi Debs

    Amazingly I do feel better, thank you :-). They added propranolol to my mixture and haven't had a headache or migraine of any kind. I've also bought a u neck device. Not sure if you've heard of it? I constantly wear my tens machine on my neck and shoulders along with the u neck and mess and all been well. It may all just be a fluke, but touch wood.... I can get some relief. Anyway, I hope you're new medication help. I was a little reluctant to mention fentanyl to you as it's so difficult to get anyone to give it but hay ho, it's always worth a try :-)

    Sarah xx

  • Hi Sarah

    Glad ur feeling a bit better,,,,well the maxitram does give me a extra hrs sleep at night ,,, but not much pain relief ,, but after 10days the doc said she will up the dosage,, but nothing shifts my headaches ,, ive had them 24/7 for so long now im used to them ,,, and yes fentanyl was a definate No frm my docs ,,,,, Ive never heard of a u neck device but will look it up online and see about them ,,,, hope u keep getting some pain relief and take care

    xx debs

  • Hi Debs

    Pleased the docs will up your dose soon. The u neck device is good but if You get one, make sure you wet the electrodes and your neck with a damp cloth otherwise you will burn and electrocute yourself like I did

    :-o Not many doctors will give you fentanyl so I'm not surprised. Did I mention I also use a tens machine on my neck and shoulders? but please don't put it to near your spine. I've had 3 years now of constant seasonal Headaches. I'm having another ct scan 3rd June but I'm having reconstruction surgery on my nose 27th may so I'm going to be black and blue and unable to breathe. I really won't feel like driving 50 miles to the hospital a week after surgery, but hay ho, it has to be done. Please try the tens machine though. They're very cheap

    Failing that, have you heard of a cafely? I'm in the UK and they cost £250.00. If you're in America, (not sure of currency rates) maybe $350-400. Does that sound about right?

    Sarah xx

  • Sarah

    hope all is well with you,,, not allowed to use the u neck or a tens machine because i have the SCS device implanted and either one cud seriously affect me or electrocute me ,,,, got my meds dosage upped but they are weird tablets ,, i dose off for a bout 2-5mins anytime of the day and dont know where i am when i wake up ,,,, having a real bad pain week ,,,,

    Im in the Uk also ,,, hope ur getting to enjoy this good weather we are getting at moment x

    tc x Debs

  • Hi Debs

    Looks like we're both having a pain flare up. I think mine is due to the stress of my operation tomorrow. I am really scared of having a general anaesthetic. I've never had one before and I'm on such a high dose of morphine, baclofen and diazepam at the moment because of my back pain, I'm scared they'll give me too much anaesthetic and I won't be able to be brought back from it. I'm pleased the gp has up'd your meds, I'm sure the dozing off will be temporary while you're getting used to them. Shame about the tens machine and u neck device. Have you tried diazepam for your headaches? I see a myotherapist to. He is fantastic at deep tissue massage of the trapezium muscles which can halt even my most awful headaches in 2-3 treatments. Maybe you could look up if you have a myotherapist near you. Anything is worth a go. Hope I'm of some help.

    Sarah xx

  • Hope all goes well for you tomorrow Sarah,, i never heard of a myotherapist but will have a look into it ,,, sometimes we all just get used to the pain that we think it is part of life ,,, take care

    xx debs

  • Good morning Debs,

    Thank you for your good wishes.

    I will let you know how it went on Saturday or Sunday. Many thanks,

    Sarah xx

  • Hello sarah,,,,

    hope all is well with you and ur not in too much pain,,,,thinking of you


  • Hi Debs

    The operation went well.. Yesterday the after pain wasn't that bad but today all the swelling has come out and the pain is totally unbearable. Out of all my medication, only paracetamol seems to dull it. I'm looking like quasi modo at the moment and barely slept last night. I'm hoping tomorrow will be a little easier. To top it off, my back pain is absolutely unbelievablely bad. I haven't eaten since Thursday early evening and can only drink through a straw. Apart from all that I'm feeling fantastic....... NOT!! Atleast the operation has helped with me my breathing. The worst part of the whole thing was the pain in my throat from the breathing tube they put down my throat. How have you been since we last spoke?

    Sarah xx

  • Sarah,,

    sorry to hear ur in so much pain,,, hopefully it will all be worth it thou,,eat ice-cream to ease ur throat a little ,,,,, i can sympathize with you in the back pain department thou at the min,,, agony is a light word for me,,, back is hell and my hands, feet and legs are swelling bad ,,, nothing worse than having to stand outside in bare feet at 2 or 3am in the morning to cool the burning down on them ,,,,

    hope ur feeling a bit better tomorrow and get some sleep tonight ,,, take care

    xx Debs

  • Oh Debs, I know exactly about the burning feet in the middle of the night and quite often been standing outside on the back door step to try to cool them off. I'm so sorry to hear that your back is so bad. I've had my tens machine on non stop for over a week now. As for the ice cream, I've sacked a few ice pops since Friday and a tiny bowl of jelly at hospital. I really need to get out to buy some more but I can't face going out and being seen. I had to drive my daughter to the pet shop earlier and hid in the car. I'm no oil painting but I can't be seen like this. People will think I've been fighting or maybe a car accident. I just don't have the energy to explain why I look like this. I'm going to continue to hide for a few days and hope the swelling goes down a little. I've booked 3 weeks off work because I'm not meant to bend forward because of the pressure to my face. I can definitely understand that one. All I can say is that it could of been worse. U have to look on the bright side of things when you're in constant pain daily. Thank crikey I have morphine and diazepam to take the edge off things, not that I find it helps much but I bet I'd be moaning a lot more without it Sarah xx

  • Hi Sarah,  Yes I'm in pain everyday and have had chronic pain for 25 years.  It is exhausting, for sure.  It is one foot forward...sometimes living minute by minute.  I'm so sorry your pain is so consuming.  My heart goes out to you in joining and undrstanding.  Please know that we care about you.  Take gentle care Sarah.

  • Hi karenkaye, thanks for your reply.  Sorry to hear of your constant pain to. It is very exhausting.  I slept most of yesterday and today.  I work full time and care for a disabled child so catch up on the zzzz's whenever I can. Woken with a blinding headache though,  which is nothing unusual but I can't sleep until it's gone.. Many thanks and take care!  Sarah x

  • Thank you for posting this Thread Sarah and stimulating such an incredible lot of replies. I had thought that this was what Profiles were for but so few members seem to provide those.

    These detailed replies really are so gratefully received as they show us all just what levels of living hell so many of us are enduring. I find them informative but I also find them inspiring. 

    Anything that helps us get through another day has to be something to be applauded.  Thank you to all who have contributed.


  • Hi Rib, it's been truly amazing the amount of care and knowledge everyone has given me. Unfortunately I've woken this morning with the worst headache I've ever had.  I'm crying with a bag of peas on my head.  I might have to go to hospital with this one.  I'm so dehydrated because I've slept the best part of Friday and Saturday. I've taken 4 diazepam in 2 hours and still no relief.  The only trouble is, the hospital doesn't even take cluster headaches as serious.  I'd like to see one of them cope. This is my last email of the day.  I need to get off to hospital now. I'll be in touch once I've been left in the corridor for 5 hours with "a hangover " I don't even drink. But they won't believe that. I need some good luck guys! I know you all wish me well.  Thank you in advance. 

    Love Sarah x

  • Try Chelated magnesium .Ask your Dr to check serum & active b12 folate,ferritin,iron,MMA,Vitamin D .Too many folks suffer unnecessary from simple vitamin deficiencies which Drs are not trained in nutrition .Google" Diagnosing & treating Vitamin B12 Deficiency "to see devastating facts .

  • Hi marylyn, 

    Thanks for your reply.  I have noted your advice and will ask my gp on my next visit. 

    Many thanks, Sarah x 

  • Chelated magnesium should be taken only under a doctor's supervision because of the potential risks and side effects. Potential risks include overdose caused by taking other medicines containing magnesium, allergic reactions and possible harm to unborn or nursing babies. Regular blood and kidney function tests can indicate if a patient is being harmed by taking chelated magnesium.


  • Hi Rib,

    I'm very careful with what I take because of the amount of meds I'm already on. Wouldn't take anything extra unless I'd fully researched it myself on top of doctors approval.  I don't trust all gp's in the first place. 

    Many thanks, Sarah x  

  • Hi Sarah 

    I hope your cluster headaches have eased. I get migraines rather than cluster but either way not pleasant. 

    A friend of mine who has cluster headaches is having treatment for hers in the form of botox. They have helped her no end although not stopped them completely but have made life more bearable. She only had them around her face at the moment which is why they've eased but she's going to get the back of her head done soon which is close to the optic nerve. I'm not sure if this will help you but it's worth asking your Dr about them and if there's a possibility of discussing your situation and to see if it'll help. Another question to add to the list I'm afraid, oops! 


  • Hi k  I'm having the GON nerve blocks done 11th may by my neurologist.  Never had them before but watched it being done on YouTube.  Wish I hadn't though, it's pretty disgusting.  I will let you know how I get on. 

    Sarah x 

  • Hi K, I forgot to mention that my headache has gone down from 100+ to about 10 pain score.  I put my tens machine on my neck and shoulders which seems to have taken my mind off the pain a bit :-) 

    Many thanks, Sarah x 

  • Hello.   Yes I have had nerve pain now for 36 years nearly 37. Also low back injury from car crash. I was given a dose of the drug Myodil into my spine to have a Mylogram in 1979 and my normal life changed from that day on.  I try so hard to do things and be a normal person but sadly am loosing the battle. I the medical Profession and The company who made this drug. They knew it caused problems when they gave it to me. I was a guineapig.  Me and many others and now we live in  sometimes unbearable pain. I am so sorry you have pain too and understand how you must feel. 

  • hello - just seen your post. i go to a clinic (they are amazing) for shockwave therapy but they offer a new very efective treatment for all sorts of back pain - its called IDD therapy and i think some health sinruance companies are now doing it - meant to be amazing and work wonders you shoud read up on it, good luck and hope the pain goes away.

  • Hi Dave, just read your post.  Never heard of shockwave therapy or IDD therapy.  I'm definitely going to look into this!  

    Thank you, Sarah x

  • Sarahk1000 I am sorry I meant to respond to your post some days ago but see that I didn't and apologise for that.

    Have you ever come across feverfew?  It is a natural but quite powerful form of pain relief for certain predicaments.  In your case, I cannot predict what influence it might have on your main source of pain but believe that it could go a long way to resolving, if not totally abate, the issue you have with cluster headaches.

    Although I used it as a treatment for migraine (debilitating and almost constant 5 to 6 days a week) it is proven to be effective for suicide headaches - search in here for cluster headache rather than suicide

    The article above discusses the benefits derived from using feverfew in pill/capsule form.  I have only used it as a dried herb because, at the time I needed it, the prepared OTC treatments had a possible side-effect of mouth ulcers - and if something can have a side-effect you can bet your bottom dollar that I would suffer it!  I had no side-effects despite using the herb for a number of years.  If you want any more info about how I used it let me know.

    For your other problems have you ever tried, or do you have access to facilities in order to try, regular use of a sauna?  Or have you ever seen a chiropractor?

  • Hi linlow

    Sorry for not replying sooner but I'm in a crazy cluster headache at the mo. I will look into feverfew but I have to be careful with interactions and my stupid allergies. Thanks for the information and I will definitely look it up now

    Sarah xx

  • from my days of near constant migraine I can connect with that. I don't think you will have an issue with feverfew but I understand that issue too. An alternative, if you do, might be curcumin - another powerful natural painkiller.

    Have you come across hyperbaric oxygen therapy? That might be worth investigating.

  • Hi linlow

    I've just ordered curcumin and feverfew. I asked my neurologist yesterday if I could try oxygen. She said that I'm being fast tracked for emergency GON nerve blocks and another ct scan before she's willing to consider oxygen. I've got an operation on 27th may (2 weeks) so I hope it doesn't all coincide 😔

    Sarah x x

  • Well I hope that one or other gives you the relief that you need.

    Did you ask about oxygen or hyperbaric oxygen therapy - not the same thing. With the therapy you are sitting in an oxygen enriched atmosphere inside chamber like they put divers in when they suffer 'the bends'. It can help with all sorts of conditions

    Would it be a silly question to ask if you have ever tried an elimination diet?

  • I just asked for oxygen. I didn't know about the chamber tank. I will look into it, thanks.

    About an elimination diet.....I rarely eat due to having no appetite due to the amount of morphine I'm on 😔

    Sarah x x

  • No guarantee that you aren't allergic to one of the foods you do eat though :( cheese causes migraines for some folks, so you'd only need a nibble if that was you. But that sparks another thought. Do you take probiotics of any description. I'd normally recommend kefir but if histamine is causing your migraines it would be no good to you. Only a lot of problems stem from the gut and if your diet is so poor your microbiome is likely to be out of sorts too.

  • Yes I do take probiotics. I don't eat cheese so that's OK. I've woke with a migraine today instead of my usual cluster headache. Lucky me 😭. Nauseous to die for. I've got work for 2 hours now. I'm a cleaner, lucky me again 😖. Thanks so much for all your help 😃

    Sarah x x

  • pleasure :)

    you could try ginger or mint tea if you have any herbs/spices in or lemon water if you haven't.

  • I drink warm lemon water first thing in the morning. Apparently it helps with inflammation and detox's the liver x

  • I actually meant for the nausea but, yes, lemon water is good. Don't just limit yourself to drinking it in the morning. Ginger, as well as aiding digestion, is also anti-inflammatory so you could always add a grating of that too.

  • Probably most of us do on this site. I do get relief from my meds but believe me, they wear off early and I get a hint of the severe pain returning and I consider leaving the world. Except I have too many "dependents" and too much work to do before that day.

  • Hi,  thanks for your reply.  Can I ask what disabilities you have? Leaving this world is something I think we all think about, some more than others,  but it's who you leave behind is the crutch for us all I guess 😔

    Sarah x 

  • Yes, it began with FMS in 84, a mystery then. I later developed Lupus and RA, but also had severe accident in 98 with 3 fractures in pelvis, injured neck, spine, etc and a brain injury from impacts to head worsened by loss of blood and collapsed lung. i have scoliosis, spine issues, discs etc, joint problems everywhere.  I am a beautiful person in a house of pain. I still manage to have a life & I try not to tell people much because long ago I learned they don't want to hear it, or sometimes they think they relate to it because of some ache or pain they once had! 

  • Wow!!! You've been through so much. I applaud you for being so brave and carrying on. I also had a horrendous car accident when I was 19.  Mainly facial/brain damage. Ive had many accidents resulting in damage to different areas of my body every time. I get where you're coming from when you say you don't tell people about your problems,. There's always someone out there that measure their pain to ours when they have no idea what real pain and disability is all about.  And also the ones that are "so tired ". Try cfs/me and insomnia and your family have to physically get you out of bed and wipe your back side because you're so stiff that you can't get your arm behind you to clean yourself.  Thank the Lord my daughter works on a dementia ward and is used to it. I feel some of your pain, I doubt I feel it all. I hope you have the odd day that's not so unbearable, I truly do 

    Sarah xx

  • Hi to everyone! This is just a general "thank you " to all of your help, advice and support.

    If I've not replied to everyone, then my apologies. It's not that I have ignored you, it's because I have been in and out of migraines and clusters the last 6 weeks. I feel quite a lot better now so hopefully I won't miss out on replying to all my lovely new friends on here

    Many thanks

    Sarah xx

  • Sarah try CBD for your pain. I have stage 4 prostate cancer with bone metastasis. I can't guarantee it will work for you but it really helps me. If your interested check this Web address. ( ) . There is almost no THC in hemp so there is no high. It's legal in all 50 states. If you try it let me know how it works for you.



  • Hi Dennis

    I'm really sorry to hear that you have cancer. I hope you have love and support at home

    You certainly do have here on the site. I do smoke just one at night. It helps with my night time pain and morning headaches. I've asked for medical Marijuana and the gp's are discussing it at their weekly meeting. I will hear by next Monday of their decision. I would rather have medical than street drugs as I need the pain.relieving effects of the drug during the day. I can't smoke what I've got during the day because I'd never get anything done ( being too stoned) . I will look up the website now.

    Many thanks, Sarah x

  • CBD is legal and is not marijuana. HTC is what causes the high and CBD lacks that. It takes away the pain without after effects. You can't OD on it like you can on any opioid. Give it a try. I know pain and how much it has helped me.


  • Ooops, sorry Dennis, I got the wrong end of the stick there, sorry. I will certainly ask about CBD when I next see my gp. I'll try anything if I'm honest. I'm.usually very careful when taking my meds and write everything down as I take it and at what time. I've done that for 3 years due to the amount of meds I'm on. That being said, I have still accidently OD'd a few times. I will definitely ask about it :-)

    Sarah xx

  • I hope your gp has even heard of CBD. It is not a prescribed drug. They really don't know how to classify it so their calling it a supplement. You can't OD using CBD. Since it's a natural product it can't be patented and the pharmaceutical industry doesn't like that. A lot of doctors only believe in man made drugs.


  • Morning Dennis, I will have to do my own research and see if I can get hold of it. Anything is worth a go.

    Thanks Dennis

    Sarah xx

  • Sarah

    Have you looked into CBD yet? It has really helped me without more opioids.

    ( ) if they can't send CBD to you at least you can find some information about it. I am sorry if I bug you about this but I hate to see you in pain.


  • Hi Dennis Firstly, you don't have to worry about bothering me. I'm on this site for help and ideas so all messages are welcome, as many times as you want to. I still have CBD on my list of things to look up. I'm a bit behind this week because I've got surgery tomorrow which will put me out of action for a little while so I'm trying to fit in 5 days work into 4 days and stocking up on shopping etc for the children in case I'm out of action for a while. After my operation I will have up to 9 weeks free from work to go through everything you lovely guys have suggested. I will definitely look into the CBD.

    Many thanks, Sarah xx

  • Thanks Sarah

    Good luck with the surgery I will be thinking of you in a prayer.


  • Thank you so much Dennis. I will let you know how it went, probably Saturday or Sunday.

    Sarah xx

  • Hello Sarah. I am in a similar situation. Can't go into huge detail because of all the drugs, opiods mostly that leave me constantly whacked out. I am only 37 and I have been like this for 5 years. It has been so much worse after I had lumbar spinal surgery 2 years ago. Now we find out that it was mucked up and will have to be revised. I'm more or less bed bound due to the pain and depression. so tired and scared. If it wasn't for my beautiful Daughter who is 6 I would have ODd by now. I just don't know how you manage being in constant pain for all those years. I'm so sorry for you, and for all of us. It seems so unfair. I worked hard and helped people all my life and I end up like this??



  • Hi Emma

    I'm really sorry that your surgery failed. I expect the surgeons who ruined your life still got paid and went on holiday 5 times a year paid by our NHS (don't get me started on the "professionals " of this insane world). Anyway, less about them, more about you. I agree with Jay (I think thats who's also replied to your email. Fentanyl is the only choice you have drugs wise. Forget all the other rubbish you're pumping into your system. Fentanyl is the best round the clock drug for the kind of pain you're in. It's usually saved for cancer patients but speak to the best gp at your particular surgery and tell them you want to try it and you DO have the right to try it. You can't be bed bound with a 6 year old. It's not fair on her or you.


    Sarah xx

  • Ask your gp if fentanyl patches would be possible I need round the clock pain relief and since being put on them my pain is much more bearable if you are not familiar with them they are like nicotine patches they last 72 hours and release a constant dose of fentanyl if you have any questions about them feel free to msg me and I hope you find something that helps soon

  • Hi Jay

    Thanks for your email. Sorry but I thought you were replying to poor Emma on here.

    I have asked for fentanyl but my particular gp surgery say that they only give fentanyl to cancer or MS patients. I've begged them, but they still say no. I do have a supply of it and can get my of the drug because my sister has MS and gets given too many for her needs but I'm scared of taking it because of other meds that I'm on

    Sarah xx

  • Sorry to bother you again Jay but can I ask why you are on fentanyl?

    Sarah xx

  • Hi Sarah, I have always used a cranial osteopath for my back problem and have introduced friends to one also over many years. They really do make a difference. Hope you find an answer and some relief soon Sarah. Regards

  • Hi dtench

    I have looked into the cranial osteopathy. I used one many years ago for my son who was 3 months old at the time due to a very violent birth to which he cried non stop for 3 months. Someone mentioned cranial osteopathy to me so I gave it a try. Even after his first session, he calmed down and almost over night stop crying. I don't know how they did it but it worked. They barely touched or moved him around. Amazing. I will definitely look into having a couple of sessions once I've had my surgery tomorrow. I just need to recover a bit.

    Many thanks, Sarah xx

  • Hi I'm Rachel. I am new to this group. 31/2 years ago after being pulled over by my dog nemourous times and having had problems in the past i suffered from severe sciatic nerve pain. I could not feel my feet. All the pain was in my legs none in my back. After having Mri I was told I would need an emergency back operation. It did not go well. I am now in constant pain. I have put on 2 stone from the pregablin which I have now weened myself off. I am still taking severdol (morphine) codine naproxen and paracetamol. The lady at the pain clinic also wanted me to take amitriptyline but I have held off for now as it makes you very tired and I'm already exhaust as everything is such hard work. Although I have some pain in my legs now it is mostly in my back and hips when walking. I struggle to bend at times. I also have 2 girls aged 14 and 16. They help as much as they can and my husband works away during the week

  • Hi I also suffer pain attacks when driving so am taking flaxamine for that.

  • Im so glad I found this site it helps to know you are not alone. Does anyone receive carers allowance etc. Poor Sarah how have you managed for so many years ? I'm only 42 and I'm not looking forward to my future 😓

  • Hi Rachel

    Sorry for all your pain and suffering. You seem to have suffered as long as me and mine all started by falling backwards over a dog.Chronic pain is no laughing matter but once it sets in you have no choice other than to cope. I'd take the amitripyline as they've been offered to you. They'd start you on a low dose and increase as slowly as you need. It definitely dampens some of the pain. I personally can't take it as I suffer from svt's (superventricular tachycardia) a heart problem and amitripyline is from the deadly nightshade family which can have disastrous consequences on svt's. As for the bending that you find difficult, the best thing you can do for that is to do some bending and stretching when you're in less pain. Also drink plenty of water as if replenishes lost fluid in the spine. Have you heard of capsaicin cream? That heats up the skin and gets the blood flowing better in that area. Also pernaton gel is very good. Ireceive carers allowance for my son with severe adhd but I'm not sure if that's why you are asking? Can you alaborate?

    Sarah xx

  • Sorry Rachel, I've just noticed you said you've been in pain for 3.5 years, not 31 years like myself. Sorry for confusion

    Sarah xx

  • Hi Bell, I read your message with interest, I had decompression operation on my spine 4 weeks ago. I feel that Gaperpentin is really affecting my brain, I keep forgetting words but it helps massively with nerve pain. I also take cocodamol and take zoplicone (been taking that for many years). I felt I coped with pain, but nerve pain on the side of my leg and foot is horrendous. Has anyone else had this survey? I would really like to hear back from anyone. Thanks Fran X oh PS also on Butrans Patch 20mg

  • sat on a rotten chair which collapsed about 3 months ago and its been almost life changing. cant sit comfortable cant bend forward much, what a state, difficulty sitting at table etc, i now kneel on a cushion. its similar to small joint mobility

  • Hi I have just looked on this page for pain and see you have been in pain for a while I had operation in 1997 where a nerve was damaged in spine and it is still a big problem as now got disc trouble and spinal stenosis

    I was wondering if you had any help from the replies and would appreciate it if you would pass any info on or if anyone else is reading this can come up with a miracle cure

    Gp or pain relief clinic hasn't come up with anything

    Thank you

  • Hi Rusty

    Thanks for your email. I've been given lots of ideas for ways to help. Mainly for a healthy body, especially the spine, you need to make sure you're vitamin levels are correct and drink plenty of water to help keep your spine hydrated. Pilates and yoga are good for opening up the spaces between the spine and core stability. I'm on high doses of morphine mainly for my pain. My best advice is to keep active (if possible) if not, then plenty of stretches. Over the years I have been on a lot of meds and out of everything I have ever tried was an anti depressants called duloxentine. It's fantastic for nerve pain and damage. Have you tried it? Unfortunately I had to stop taking it due to it switching me into a bipolar episode. Do you use a tens machine? They don't do anything long term but if I'm in a flare up with my back, I use my tens machine day and night, sometimes for 2 weeks solid. I hope this helps. If you need to chat about anything else, I would always try to help.

    Sarah xx

  • Hi Sarah

    I may be a bit late with reply as I've only just joined this forum

    I have been in pain since I damaged the bottom 3 vertebrae in 1979 and it has slowly gotten worse over the years and it's now almost constant, I'm on co-condo mol gabapentin oramorph amitripiline and fentanyl patches, the last two are the best I've ever had, I honestly believe that if it wasn't for the fentanyl in particular I might well be suicidal by now see your GP and pain clinic for those two drugs and also to them about cognitive behaviour therapy (CBT) it can help with coping mechanisms. Good luck and remember you're not alone there are lots of us out here that understand what you are going through.


  • Hi John

    Thanks for your email. I'm really sorry that you've been in pain for so long. Sounds like you have come to the right place though.

    I have begged my gp for fentanyl, he just won't give it out. as for the amitriptyline, I have a heart condition that amitriptyline could affect. I've had it in the past and it's been quite successful but since my heart problem, I can no longer take it.

    Sarah xx

  • Hi I'm Emma very new to this, but yes I have had chronic pain for 15 yes in my knees and it's getting progressively worse each day, I need 2 new knees but in a constant battle with surgeons with my age (2young) I've been on all pain killers with no help! They have just put me on morphine patches and liquid morphine, it's only been 2 weeks but to be honest it's not helping at all really just making me tired, so I know how you feel I have my next pre-op June 22 to remove screws that have started to come loose in my knee, I just want to wake up and have at least some pain relief, that would be amazing.

    Emma x

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