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my biggest problem,as to, living with chronic pain. non-sufferers dont understand its impact.

Posted , 12 users are following.

adamspain
adamspain

I spend most of my time at home and only go out on better days. Problem being is that people i know only see me at those times so they assume that my condition is not to serious. I could stay at home for days and no one would come by to see how i was doing. I find it very frustating the lack of understanding people have of neuropathic pain. Its no wonder so many of us become isolated.

5 likes, 25 replies

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  • matt66
    matt66 adamspain

    Posted

    I agree Adam. I end up the same as you, staying in, using Sainsbury deliveries and not knowing when I'll go out again. I've even given up with the doctors because they just look at the leg & 1/2 (amputee) and say they can't do anything. Even get neuropathic type phantom pains which nobody understands. It's so hard for others to get that it hurts to move, stay still, even to get to sleep because of it. 

    good luck.

    • adamspain
      adamspain matt66

      Posted

      Our nerves are a complicated machine which is very capable of sending the wrong information to our Brain, sadly, wrong signal or not, the pain our brain makes us feel is very real. In your case, i wouldnt give up looking for some kind of treatment. wish u well.
  • matt66
    matt66 adamspain

    Posted

    Unfortunately I'm 40 now and lived in LA for four years ('09 - '13) and been to see the top neurologists over there as well...final diagnosis was intractable neuropathy. Not the best thing to hear, but hey, you learn to fit it into life!!
  • Kersey
    Kersey adamspain

    Posted

    I am the same Adam  I am fairly housebound during the week though I do get out at weekends.  Sometimes I use a wheelchair as it is too painful to walk and I always feel like people look at me and think why is she in that.  The night is the worst when you cant sleep.  do you often feel like me that even the doctors dont understand sometimes I think the doctors think I am exaggerating.  at least on here Adam you will know you can talk to people who do understand.  I occupy myself with knitting and crochet, reading, watching the tv, and do some easy Yoga for arthritis on Youtube!!!  When I have had a bad night I fall asleep in my armchair and then wake up and think What an old granny you are becoming!!!!  Seriously trying to laugh at yourself a bit helps.  I take 5htp to stave off getting depressed (I dont want to take antidepressants etc).  Just remember adam we are all here when you feel bad. Take care
  • lindie_lu
    lindie_lu adamspain

    Posted

    Its brilliant to find this forum.  I agree with all the comments.  I have osteo arthuritus besides nerve damage to my spine thru and accident at work 25 years ago,

    I finally got to see a pain specialist over a year ago, had some spinal injections last February (painful) and was put on gabapentin in April.  Am now on 21,000 a day plus co-codomol.  My best pain killer seems to be my hot water bottle !

    I stay in 90 % of the time but I try to get out in the afternoons to walk up the village to chemist and newsagents. The assistants know me well and often they are the only people I talk to.  I think my best friend is the TV.

    Today I am going to an induction course for Pain Management.  Has anyone else been on one ?eek

    • Kersey
      Kersey lindie_lu

      Posted

      I am waiting to go on a pain management course so would really like to hear how you found it.  Also how do you find gabapentin as I am not sure whether to pursue this with my doctor - I dont want to end up feeling dozy all day.  I def. cant take co-codomol as it makes me vomit blood - strips my stomach lining. Yuck.   I spend a lot of time in front of the tv and crocheting to keep my mind off things.

       

    • lindie_lu
      lindie_lu Kersey

      Posted

      I only had my assessment today for the course, am hoping to hear on Monday I can start it.    Ive been on Gabapentin since April,  its a low dose

      at the start to get your body used to it.  I found no bad side effects al ittle dopey but I was desperate for some relief.  After a couple of months I didnt feel any benefit so my doctor uppped my dosage and I had to gradually increase by stages. Am now on 700mg x 3 a day, and I feel it is definately helping esp with early morning pain.  I do have nerve damage to my spine and gabapentin is supposed to be beneficial for this.

      I do take co-codomal but I have alternated with paraceptamol.  Also if ive had a few bad days Ive taken tramadol.  

      I too  have become a tv addict and I am a knitter and crochet person !

      Ive actually not done any for a while - thinking it might make my fingers worse but I really need a fresh hot water bottle cover! Its my best friend first thing, lovely warmth.  I would try the gabapentin, I feel its helped.

    • Kersey
      Kersey lindie_lu

      Posted

      The doctor has put me on amytryptiline low dose for the moment and is going to review it in a month - she is holding off on the gabapentin as I am very sensitive to medication.  

      I use a wrist brace overnight and then my wrists and fingers are OK to knit and crochet during the day - I also use Piroxicam gel on my hands to help them.  I use Capsaicum cream + socks on my feet at night to help with the sensitivity to bed clothes.

      I agree a hot water bottle is fantastic.  Keep in touch and take care pet.  We are each others best supports.

    • lindie_lu
      lindie_lu Kersey

      Posted

      lovely to hear from another person in the same boat.  My specialist gave me some Capsaicum gel, I didnt realise one should use it 3 times a day.

      I too use bedsocks.  But since Ive been on the higher dose of gaba I havent had as much pain and stiffness on waking.  Although once I start

      moving around the lower back pain kicks in.  I too bought some pure cotton sheets etc, as I developed a skin complaint after a visit to my daughter in New Zealand where I got bitten badly by mosquitos.  This seemed to flasre up a type of exema.   I did find a great website for knitters etc.  But I will have to find it again as I had my lap top fixed and Ive lost it !Thanks for the reply and I shall make a note of Piroxicam for my hands also - its my first joint on fingers that have gone out of shape.  I must admit having just retired at 62 I am very annoyed at this

      developement of my arthuritus and nerve damage.  How about you ?

      Must admit my hot water bottle and the tv are my best friends...

    • Kersey
      Kersey lindie_lu

      Posted

      I retired at 62 as well and am 66 now.  It is so annoying to get all this pain etc when I was looking forward to a nice retirement..
    • lindie_lu
      lindie_lu Kersey

      Posted

      I totally agree.

      Another weekend looms,  If the weather is fine

      I am determined to get on the bus and go for a

      ride around and just be out and about.

      I get so fed up of four walls.

       

    • lindie_lu
      lindie_lu

      Posted

      Well I didnt make the bus cos of the rain.  But have done sessions of the Living with Pain class.  Its interesting cos a lot of the things discussed, I have tried.

      It seems diff, in a group. It is a good feeling to be among others with

      chronic pain probs.

      Its given me a boost to remove myself from my flat and just get OUT !

      It may take me 3 or 4 hours to get ready but I have gotton more determination from my classes.

      xx

    • lindie_lu
      lindie_lu

      Posted

      Had to stop going to the living with pain class, Kersey,

      2 things really

      my transport didnt turn up.

      and then the 4th class was about feelings and moods.

      after an hour I had to go out.

      couldnt face it. 

      also cant face xmas alone again but hey

      am not alone.

      surprisedlol

    • lindie_lu
      lindie_lu

      Posted

      Have just got an appt. for an injection -- a caudal epididural ? anybody else had one ?  Have been waiting more than 9ths for it.  Will it do any good

      I ask myself.

       

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