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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

30 Replies

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  • STD
    STD frank24438

    Posted

    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.
  • jennifer1946
    jennifer1946 frank24438

    Posted

    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.
    • dawnylou68
      dawnylou68 jennifer1946

      Posted

      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? 

    • frank24438
      frank24438 jennifer1946

      Posted

      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.
    • jennifer1946
      jennifer1946 frank24438

      Posted

      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!!!!!!!!
  • STD
    STD frank24438

    Posted

    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.  
  • dawnylou68
    dawnylou68 frank24438

    Posted

    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😁😁

  • Rob777
    Rob777 frank24438

    Posted

    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!
    • STD
      STD Rob777

      Posted

      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.

    • jennifer1946
      jennifer1946 Rob777

      Posted

      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
    • Rob777
      Rob777 jennifer1946

      Posted

      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
    • frank24438
      frank24438 jennifer1946

      Posted

      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.
    • jennifer1946
      jennifer1946 Rob777

      Posted

      Hello again....I followed your system and kept the last email so I found you easily today..I have to report an interestin? experience yesterday...BIODYNAMIC ENERGY HEALING..I won't go into details and waste eveyone's time but I am sitting here waiting for the miracle to happen and if it does,then I will describe the therapy session.The physiotherapist isn't getting anywhere so he asked me to se an  acquaintance (that's the dodgy bit!!!) of his...an osteopath who specialises in this biodynamic stuff.I don't hold out ANY hope of improvement.I saw the professor at the hospital and he  confirmed osteoarthritis of the hip and said to go back in 10 years' time for the replacement surgery.O.K that suits me but since I cannot find a cure anywhere for the nerve pain and an operation is out of the question I will just have to go on limping through life and widening my education watching middle of the night documentaries! My son has persuaded me to go with him tonight to Olympiakos v Juventus so that may be a laugh!!!(I don't mean that!  I hope we aren't totally thrashed by them!).I have 24 hours left waiting for the miracle so watch this space...but don't hold your breath!  Take care.
    • Rob777
      Rob777 jennifer1946

      Posted

      Yes well it's just gone 5am here and I am awake as anything - slept through til half four (half five if you include the clocks going back). I feel these meds, gaba and amitrip, dissolve the natural sleep rhythm and I don't know what to do about it except roll with the punches, in your 60s if you're not in top health I find this is a sage approach.

      You don't seem to be at a loss for offers, Jennifer, Greece certainly sounds to have a wide variety of doctors, therapist and quacks, like anywhere else.  I think, though I am not sure, that your biodynamic healing thingy goes right back to Wilhelm Reich, donkeys years ago, all a bit off the wall, but no doubt of some help to some people.

      Why do you have to wait so long for a hip replacement?  This could surely be the cause of a lot of your pain - must it go on getting worse for another decade?

      I am starting a new thread soon for surgery outcomes for what I have, this stenosis business.  There are a few older posts on here about it, but I am going to look for some more up to date ones.  Problem is, of course, these sites tend to attract ongoing problems rather than people who have been sorted out.

      Hope you won the match and that you are sanguine.  Rob777

    • jennifer1946
      jennifer1946 Rob777

      Posted

      Hello!  Yes,I know what you mean about the middle of the night thing..it's horrible..I hardly even dare say this to myself but since that therapy I have slept through the night.....I really can't believe it's due to that but then what else can have happened.. Honestly,I was not convinced that any improvement could possibly come fromwhat they did...one of them with his hands under my spine,palms down so knuckles against my two affected vertebrae,the other ,eyes closed,holding my feet and then touching my ankles,knees etc...most odd..At one point one said to the other "Did you feel that?">>??? I wanted to laugh ...I was thinking that my friend and I could make a lot of money from this game!

      So now I don't know what to think.I can't afford to keep paying 50eu to them just in the hope that this sleeping all night is thanks to them and there may be more improvement..

      As for the hip thing....he asked me if I can put socks on! abd when I said yes he said lose 5 kilos,exercise,swim and come back in 10 years' time for the op.!We have a wonderful surgeon in Manchester,he has operated on nearly everyone I know and he is a very understanding man as well as an excellent surgeon so I will hopefully get to see him through choose and book when I come home and see what he says.I will bring my fat dossier of tests,MRIs,CT scans,Xrays etc!!

      Yes ..we BEAT Juventus...I really enjoyed it!I don't usually go to football matches,despite being a Mancunian! but my little grandson wanted me to go and I'm glad I did. It was pouring down when we came out so the 30 minute ride home on the back of my son's motorbike wasn't so enjoyable but at least I didn't have to WALK....it's so painful and slows me down so much.Still,I do get outand about so I mustn't complain.I hoe YOU are managing too.Take care.Jennifer.

       

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