I was getting a bit depressed on finding neither pregablin or gabapentin combated the symptoms caused by what's diagnosed by a MRI scan as spinal stenosis. But fact is that the symptoms,except for ones affecting my legs. move about that much you are baffled as to what the tabs are supposed to do. Not like those of my usual backaches. Anyway i thought learning more about my actual condition would give me more understanding why its difficult to treat, after all the medication might be fantastic for epilepsy patients. Well i guess i know anough now on how to sit and stand to relieve pressure on the spinal cord through reading what doctors like Dr.Sergio Gonzalez-Arias and Dr, John Toerge have to say about Spinal Stenosis. I do believe that learning exactly what is happening to me has given me the confidence to be more eccepting or pragmatic if you like and get on with what i can still do. Of course it will be done with bit of moaning, a saint i'm not.
I do agree that trying to get an understanding of what is happening does psychologically help one cope better. Doctors may/may not moan about patients fishing around the internet trying to find better procedures, more modern types of operation, better medications etc., but it does also give you a bit of tutorial about, e.g. your back, discs and what's probably happened to them. You can also better research the potential side effects of medicines prescribed and decide whether you actually want to take them or not. It's a difficult question: you're in pain but, persoanlly, I hate the idea of becoming a bit of a "junkie" on medication. Nothing is without certain side effects. The individual has to decide whether he/she is prepared to poke up with that.
I am totally exhausted and fed up with the pain that I amin ...there's never any respite...in fact it's impossible to lie down so I now have to try to sleep sitting up.I was diagnosed with spinal stenosis ,not bad enough for surgery thank goodness.I had an epidural lumbar injection...no difference.Yet ANOTHER physiotherapist I saw diagnosed the PSOAS muscle as being to blame...physio for that ...all for nothing..A new neurosurgeon suggested Piriformis muscle syndrome since it mimics sciatica but can only really be diagnosed by eliminating everything else...MORE NSAIDS and more physio.The physiotherapist couldn't understand why I had so much pain from my left buttock to left groin,knee and ankle and suggested I see an osteopath..Where is it all going to end? I have seen physiotherapists,chiropractors,orthopedic surgeons,neurosurgeons,anaesthetists,I have had c.t scans,xrays,MRIs and I feel quite desperate.Last night I could hardly walk so I went to a chemist's and they gave meACROXIA 90mg...supposed to be new wonder drug.They said take one a day and 1000mg paracetamol 3 times a day...Started this morning...no relief so far.I didn't want to take stuff to mask the pain,I wanted to find out what was wrong with me but now I don't care...I desperately need some hours in the day when I am not in pain.I don't want to do anything or go anywhere...I just want to NOT BE IN PAIN.I would lie in bed all day if that would help but it's worse than ever when I lie down..Have you got any suggestions fromyour own experience?.Has anybody got any ideas or advice? Jennifer.
Jennifer, I am not convinced that you don't need surgery by the sound of things. Perhaps you need to start asking what type of surgery they recommend. If things are as bad as that, then the spinal stenosis sounds as though it's getting to an operative level.
I think accepting your limitations is very hard especially if you have been having problems for some time. however I agree I do what I can and im grateful for what I can do. Hopefully my situation will gradually improve but only time will tell.
I was never prescribed the gaped in but I have a friend who says it does wonders for her, keep smiling😁😁
I feel for you and ive been there with my own situation, thankfully there is some improvement since my op but there is still so much of time when it's horrid. I've been on Tramadol for mine since the beginning and it does help.
have you not had an MRI recently?
Physiotherapy for neuropathic pain? I would question that. I had a couple of episodes with a prolapsed disc and trapped nerve, the pain was more severe and localised than my central canal stenosis symptoms. Physiotherapy was helpful then as was tabs to reduce inflammation and others to combat pain. muscles tighten in response to pain increasing pressure on trapped nerve. You should try tabs Gabapentin or Pregabalin, they might work for you, i certainly hope so.
Well the latest that I've just been to an orthopaedic surgeon who said that I have congenital hip disease which is responsible for the hip pain and suggested stem cell therapy for that(ONLY 1,700 euros!!) but there is also a problem with my back, which he thinks physiotherapy will help.....I know losing a bit of weight will help so soon when I have no money left for food I will be able to go on a very good diet!!!!!!!!
Personally I thank Frith for both mri's and medication, such as it is. I often compare my lot with those who have gone before, for example a Victorian gentleman of my age with lumbar stenosis who I guess would have been on cocaine or heroin but probably have no idea what his excruciating pain was about, open to charlatan therapies and on the way to an early drug addicted death. Threads like this have value too - may I say hi to Jennifer below - we have chatted a bit and I am sorry to hear you are in trouble again, but I think you should say no to stem cell therapy, which has to be sheer expensive rubbish. I am still setting a lot of store on the promise an nhs surgeon has given of probable improvement after an op in the spring (for the moment I don't question it, but before I let them send me to sleep I'll want to do some more research). Today I have got a more nasty nagging localised pain than I have ever known (guess that's why I am writing this) - in a place I know often hurts, and I worry about where it will lead, but I am self medicating on a hot water bottle and some mince pies, and finding some relief!
Rob777, it's an interesting point that you make regarding comparing our lot in the modern world with that of our Victorian forebears. Medicine has improved enormously over the past century and I think that we have two nasty World Wars to thank for that, which forced man to seek medical solutions much quicker than he otherwise would have done. Surgery must be one example of modern medical success, but for those of us who'd rather not, I see the development of modern pain medication as real progress. The thought of surreptitiously taking something like, eg. Opium, because of the sheer pain that someone is in, is awful.
Hello!! I am always pleased to find a comment from you to answer because I still haven't found out how to find you on this forum! I have been so busy this week(and it's only Wed!!) I feel I might be getting somewher at last.I have now seen NINETEEN people about this pain...You will have read ab.the stem cell therapy etc...well ,if the 99.9%cure is surgery I will opt for that at some time in the future and not spend money on things that may not work anyway,,,The stem cell technique is new and they only have one year follow up up to now so I would rather carry on and take pain killers until I can find a good time to have the operation..I have found avery knowledgeable physiotherapist who has alleviated the nerve pain considerably...the nerve pain is separate from the hip dysplasia but probably the two are connected.I've had heat treatment,electrode things,and lots of hands on exercises and tonight,,for the first tikme in 2 years I haven't got that pain from knee to ankle that has driven me mad for over 2 years now..SO>>>I amhopeful again...but you know that I've been hopeful before so I should say' watch this space'...Anyway...hope you aren't too bad and manage anice trip to Sicily now that it's getting cold in UK.It's lovely here...I can still sit out on my verandah until late at night,which is waht I dream of when I'm in Manchester! and the days are hot and sunny...it makes such a difference to see the sun and the cloudless blue sky! Take care..look forward to hearing how you are doing.X
Hello Jennifer, When you make a comment on this thread I get an email to tell me that you have and I can find you easily - that's the way I find you, but I still find the patient.info site a mystery. Yes i've read of stem cells but as far as I know they remain largely magical at this point in time and they are a long way from knowing how to use them apart from bone marrow transplant. Beware of quacks say I. You hardly want to pay for a treatment they only have a year's follow up for. You must look out for approaches tried and tested throughout the world over years. I was also thinking of my discussion STD replied to about how far we've come in medicine (but still have so far to go) - even though I am seeing an nhs surgeon at a respected hospital in Newcastle I still can't help being a bit sceptical, but on the other hand the pain control though welcome is very incomplete and I can't see myself living like this. Though when I look around now, sensitised to people's disabilities, how many people do manage with quite nasty looking problems. Getting a bit philosophical!! My hot water bottle hit the spot today but constant heat makes you a bit dizzy. Chat soon. Bye, Rob
Hello. i agree with Rob777 advice regarding cell therapy, there has been results in the treatment of macular degeneration of the eyes with cell therapy, but thats about all i can find for now. However its early days so we never know. Right now i am going to dig out an old Tens machine i once used for backpain caused by worn discs and give it a go, will try it on my legs where i get cramp like pains (my circulation is ok) when walking, without a cane for support i'm a dead duck, Look after yourselves.
Frank, may I ask what medications you take and whether you've been offered surgery?
Hi Rob, when first diagnosed as having stenosis of the central canal of my spine i was prescribed gabapentin at 300mg, one three times a day. it didn't have any affect on my symptoms but made me feel drowsy which i didn't like. With my GPs ok i stopped taking the gabapentin, but about a year later my condition got worse, i have learnt its progressive, and now i am on pregabalin 75mg one twice a day as needed, its not working either so i might increase the dosage.
I was informed by a consultant that surgery, scraping the thickened bone around the spinal cord, would give very limited relief. It sounded dangerous to me and at 75 the last thing i need is a spell in hospital so i will hope the tabs start start working. Take care now.
Hello Frank...I felt the same as you on Gabapentin,,,I took 100mg three times a day at first,it was increased to 300mg 3 times a day and had no effect on the pain but made me drowsy after the morning one so I only took the midday one if I wasn't going out...I;ve now beengiven a new drug called ACROXIA...I've only been taking it for a week and I take 1000mg dispersible paracetamol3 times a dayI and I THINK there is some improvement but it seems that nerve pain doesn't respond to anything!! I have tried eveything,even had a spinal epidural and got no relief even from that. friend of mine took NIFLAMOL for toothache and found her sciatica improved!! so that will be my next move!!I'm glad we all have the chance to chat about this nuisance pain at least.With a 'hello' to Rob and to yourself I will now wait for Acroxia to work its miracle and get back to you all,Take care.Jennifer.
This is a friendly warning to all users of this forum. Prescribed pregabalin after failure of gabapentin, taking pregabalin 75mg one twice a day, first at aprox' 8am, second at 6pm, but having no result decided to up the dosage and took another at about 1am. It was like being sandbagged, kept falling asleep, didnt dare drive. Quite shocked, didn't think reducing gap between dosage would do this,of course i didn't take the 6pm dose. So be careful of experimenting with medication. look after yourseves now.
Thanks for the advice!
Yes, Frank, I know it's progressive
Why else would it have started with just one tiny patch of numbness on my right thigh years ago now spreading to my back/bum/thighs/knees/ankles at times? Sometimes there's virtually no pain at all, for a while, though walking or standing more than a few minutes brings it on. So I know it's progressive. But the mind is a funny thing, and I persuade myself at times it won't go any further. But thanks for reminding me it's progressive, even though I often pretend otherwise.
Sorry neither gaba nor pregab worked for you. GP started me on amitryptiline and I felt I couldn't go beyond 25mg at night, so he added in gaba 200mg 3times daily. These have given some relief, but the past week has been unfun. My sleep routine has got well out of hand, but I manage to keep perspective and not get emotional about all this and enjoy being awake all night (thank god for uk telly through the night when you can't sleep and you're too knackered to do anything else). I see the max doses for gaba and ami are higher than for pregabalin, so this may explain why you got hammered.
I'm interested too at what you say about your consultant's view of surgery, that it would bring just limited relief. Mine said they can get 80 - 85% success, and he actually spoke the word 'cure'. The physios I spoke to were also upbeat. You have lumbar stenosis, yes? I wasn't quick enough to ask what op they plan, but will find out well before and do research. How I'd love to hear someone saying they haven't looked back since their spinal surgery, but one only hears of regrets or very partial impact. And hello to Jennifer
Rob we seem to be getting conflicting medical advice for the same condition. i have read a lot online what orthopedic surgeons say about our condition and share my consultant's view of the op, also at 75 i don't think it the wisest action to take, for me that is. Sitting and leaning forward slightly opens the central canal taking pressure off spinal cord, obviously can't spend all day like that though.
I occasionally take Boots Sleepeaze, 25mg diphenhydramine hydrochloride, they work for me.
Sorry can't offer any more help,