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

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.

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.

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.

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!!

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

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

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.

 

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.

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.

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...

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..

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.

 

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

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

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.

 

I have had 5 spine surgeries.no one understands why I won't do things or excuse myself to lay down for a hour or so.

Just a bandaid 

I know exactly how you feel Adam, I stay indoors all the time. I go out once a week for a few hours and can't wait to get back in due to fear of people staring at me.Not sure why they stare though,i'm not ugly! Oh well, best of luck Anne

I'm 24 and suffer from neuropathic pain in my stomach. I work when I can but I know what you mean. I've had to have a lot of time off for the pain but when i go into work I always feel like people are judging because they can't see what is wrong. I'm on gabapentin at the moment and have also been referred for a pain management program.

Yes I agree but people dont tend to disguss this type of pain due to its invisible nature. I have severe IBS and diverticular disease and most certainly not discuss the problems that these combined problems have on my every day life. Now Ihavebeen diagnosed with TN and despite 10 mg amytriptaline daily am continually having breakthrough pain _ not as devastating

as it could be but all other symptoms are most definitely apparent.

My eyesight deteriorates from one day to another and you know the saying , (not firing on all cylinders ) well how about all cylinders are firing but not in the right order ? Does that ring any bells out there ?Sometimes I think I am out of my mind and doubt my ability to do my job!