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Is knowledge of your illness as helpful as medication

Posted , 4 users are following.

frank24438
frank24438

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.

2 likes, 30 replies

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  • Rob777
    Rob777 frank24438

    Posted

    Frank, may I ask what medications you take and whether you've been offered surgery?
    • frank24438
      frank24438 Rob777

      Posted

      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.

        

  • jennifer1946
    jennifer1946 frank24438

    Posted

    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.
  • frank24438
    frank24438

    Posted

    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.  
    • Rob777
      Rob777 frank24438

      Posted

      Yes, Frank, I know it's progressiveexclaim  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.wink

      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 Jennifercheesygrin

    • frank24438
      frank24438 Rob777

      Posted

      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,

       

    • Rob777
      Rob777 frank24438

      Posted

      That's help enough, Frank, thank you.  I would be very grateful indeed if you'd let me have references for that online info from surgeons, ta.  Rob
  • jennifer1946
    jennifer1946 frank24438

    Posted

    Well....tomorrow I see the nineteenth person regarding this pain and I am hoping he will be able to tell me if it is a nerve or not..I am seeing a very good orthopedic surgeon in the main ortho hospital here in Athens,recommended by the hospital director!I may get a final answer as to whetherit is dysplasia or not and ,if it is,I'm sure he won't suggest stem cell therapy to put the t 4 a.m this morning hip back in its place!Actually I'm not that bothered about the hip pain,,,I want to know why my leg,knee,shin and ankle hurt so much ESPECIALLY when I'm lying down.It HAS to be a nerve.At 4 a.m this morning when I was searching for something to watch on tv I had to laugh to myself despite my usual middleof the night temper...remembering ROB mentioning self diagnosis....I have moved upwards now and started to wonder if MY STOMACH area is to blame!!  WHY do I get this awful throbbing all down my left leg when lying flat and not when half sitting..No position helps..You do go a bit hypochondriacal,it's inevitable,when nobody can tell you what's wrong and no drug works.I'v got a file here with 5 c.t.scans,2 MRIs,4 xrays and god knows how many prescriptions and I wander fro one dr to another,from one country to another with all this stuff...it's really getting me . There are people far worse off than me so I don't complain really(only HERE!!)but I would so like my life back!!  Best wishes to all you fellow sufferers and keep sharing!  x
    • jennifer1946
      jennifer1946

      Posted

      Sorry about the 4 a.m bit appearing out of place...!  This laptop  has  a life of its own and it seems that if I BREATHE whille typing the letters travel around!

       

    • Rob777
      Rob777 jennifer1946

      Posted

      Hello Jennifer, I think I may be repeating myself, sort of...but if you are climbing the wall not having a proper diagnosis leading to advice as to how to proceed, I would recommend stopping this going from dr to dr and country to country, as you say, and find a top bloke in the nhs in your home city here and sticking with him/her, through thick and thin, until you understand.

      As for the nights, jesus, tell me about it.  I am up and down several times, tv, pc, whatever, til sleep finally comes.  You will of course use a pillow between legs, I find using several pillows, though a bit ridiculous, works best - perhaps it helps to flex the back, and of course you want to curl in bed not be flat (assuming it's the stenosis causing this pain).  How many drs told you stenosis was not bad enough for surgery?

      I'm currently chatting with Frank about different outcomes of surgery - he says his consultant was negative, though I am finding positive results for decompression surgery wherever I look on the net, and there is an interesting if a bit stomach churning video with Gonzales-Arias doing the decompressing - one of the medics Frank quoted.

      Keep smiling and remember if you get angry at night you'll go all tense and the pain will worsen.  What a know all I am becoming!! Rob

  • jennifer1946
    jennifer1946 frank24438

    Posted

    Hello again!  Yes,I know what you mean about flitting from one place to another but now I have left Manchester for good and am back here permanently so that's why I am able to go to all these different people,get scans immediately etc and because i want to help with caring for my grandchildren I am anxious to get this sorted as quickley as possible.I am really fed up with the night pain...I've just come in from an  evening sitting outside enjoying the food,wine and music with  not too much pain but Iknow that as soon as lie down it will start and that will be it.I cannot understand how the pain is so bad when I am lying downn and why nobody has been able to tell me WHY.I'veseen 3 neurosurgeons who all told me there is some stenosis but not bad enough for surgery and, it seems ,not bad enough to warrant this pain..Anyway..it does help to have peple to talk to who are having similar problems and who understand  so I will just have to put up with it for now and find sympathy from fellow sufferers and hope that we all get help eventually and get a better quality of life .Goodnight for now,
    • Rob777
      Rob777 jennifer1946

      Posted

      Understood.  Didn't realize you are permanently in Greece.  So it's not like here, that you have a gp who refers you hither and yon?  That way, of course, one can actually sit on front of them and rant about all the specialists seen with no outcome. As for the stenosis, well, they say people's mri's don't predict whether or not they will complain, i.e. it may look bad but the person is happy, suppose it doesn't work the other way, i.e. looks good but person in pain?!? Anyway hope your night isn't too bad and that tomorrow's consult goes well.
    • Rob777
      Rob777 jennifer1946

      Posted

      Understood.  Didn't realize you are permanently in Greece.  So it's not like here, that you have a gp who refers you hither and yon?  That way, of course, one can actually sit on front of them and rant about all the specialists seen with no outcome. As for the stenosis, well, they say people's mri's don't predict whether or not they will complain, i.e. it may look bad but the person is happy, suppose it doesn't work the other way, i.e. looks good but person in pain?!? Anyway hope your night isn't too bad and that tomorrow's consult goes well.
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