chronic long term pain and coping suggestions

Gremlinertia wrote: »

They've decided I have something called complex regional pain syndrome, so I'm basically stuck here.. There may be a spinal cord stimulator somewhere in the future.. I've beentreated on and off for twelve years. The meditation/mind over matter thing only started to give any relief when I'd exhausted every other possible route. Can't take opiates as I'm also on anti-depressants and I continue to work, both those would complicate taking stronger medication.. I'm aware that within the next few years I'll have to wave the white flag and stop working but I'm not ready yet.

Hi, I almost cried when I read your post today. The first thought that came to me was "It's not just me"!!

I was diagnosed with this condition just over a year ago and like you, I've been through the mill ever since. How you've coped for 12 years is just mind boggling. The amount of pain meds, anti-depressants, nerve blockers etc. that I take has become ridiculous and - at this point - very scary. I've had Stellate Ganglion Blocks, Nerve Blocks, you name it - I've been through it. My consultant has also now referred me for a spinal cord stimulator

Because of the type of work I do, I've had to stop working and this has been very hard to deal with.
If I had a fiver for every time someone has said "Never heard of it" I'd be rich, and I'm including many nurses and doctors in this. Although my own GP and Physiotherapist are wonderful, one of the worst things about this horrible illness is the awful feeling of being so very alone. If you ever feel like a chat or just a good rant, I'm happy for you to PM me. (MODS- not sure if that's ok?)

I'd also love to hear more experiences of acupuncture etc., as I'm considering such treatments too.
Thankyou for sharing your struggle.
ms h

Man I feel your pain suffered hip and knee pain since my early teens now 37 .
Pain in hips and knees is constant, my shins feel like snapping when I walk .
I'm living off 4 hours of sleep a night and have done for the the last 7 years ,
gone from working 100 hour weeks to barely able to walk for more than 20 minutes at a time ,
Done hours and hours of physio, hydro ,pain meds , anti arthritic' s , steroids ,
And regularly suffer bad depressions all while looking after 2 kids while my OH is in college .

While I can't offer much advice your not alone in your situation .

For the last 6yrs I have chronic pain in my right wrist after an accident can't go in to it as legal matter are on going.
I have done every nerve block from here to Mars at this stage my pain specialist does not recommended the spinal cord operation so any one thinking about it make sure you do you're research as a lot of them are taking out after a number of months yrs.

This will probably be of no help to anyone but I have been meaning to put it up here for a long time , no idea why I didn't maybe I felt it was irrelevant .

I'm out of work 10 years this month and it feels everyday of it . Reading the above makes me feel lucky tbh , same goes for visits to the pain management clinic . You realise that there is a lot worse out there and also that, no matter how bad you are feeling, you are not alone . My main problem is myofascial pain syndrome in my back which radiates around to the front and feels like there is a hot crowbar running right through me , add in some sciatica,vertigo and elevated heart rate and shur tis all fun and games . Did the whole lot at the start, traditional and alternative, tried loads of different types of pain killers but the only family of pain killers that seemed to work were the ones that had me sleeping most of the day away and with three growing teenagers I wasn't game for that . That left me to just try and manage it myself and at first I found I wasn't able to do anything without suffering more than was bearable . Even trying to watch TV became a chore as after a bit my brain would start fixating on the pain and I couldn't concentrate enough to follow what ever I was watching . Same would happen with sleeping , I would have to wait until I was completely exhausted before going to bed and then try and get a few hours sleep and as soon as I woke up the pain would start to take over again , so I learned to sleep in stages . A few years into it I met a company doctor who while chatting to me after the official examination said to me that this was going to be my life from now on . He said I should prioritise certain things that I really wanted to do and just suffer the consequences otherwise my life would eek away without me doing anything . I have to a certain degree followed this advice with things like , do nothing today because I am going to cut the grass tomorrow and split up cutting the grass into cutting one week strimming the next week . Or go to a concert knowing that I won't be able to do anything for a few days afterwards .

Anyways.......... the one thing that I did find relieved the pain ( it didn't actually but it distracted me enough ) was getting immersed in my sons video games ! , yeah , I know , this is not going to appeal to most people and it's a bit difficult explaining to my peers but it worked for me , for the time that I was playing, it sometimes completely took my mind off the pain . I was lucky enough in so far as fairly early on I met other men my own age online and have since become great friends with some of them so that kind of kept me involved . The kind of games that worked for me were obviously immersive ones and not the slower paced FB kind of games . It's a bit of a long shot I know and I only ended up doing it because I was at home and it was a bit of father son time, but it might work for someone else .

Jeeese , that was a whole lot of typing and I can feel my middle back solidifying as I get to here

TL:DR Version , try video games for brain distraction .

jonski wrote: »

This will probably be of no help to anyone but I have been meaning to put it up here for a long time , no idea why I didn't maybe I felt it was irrelevant .

I'm out of work 10 years this month and it feels everyday of it . Reading the above makes me feel lucky tbh , same goes for visits to the pain management clinic . You realise that there is a lot worse out there and also that, no matter how bad you are feeling, you are not alone . My main problem is myofascial pain syndrome in my back which radiates around to the front and feels like there is a hot crowbar running right through me , add in some sciatica,vertigo and elevated heart rate and shur tis all fun and games . Did the whole lot at the start, traditional and alternative, tried loads of different types of pain killers but the only family of pain killers that seemed to work were the ones that had me sleeping most of the day away and with three growing teenagers I wasn't game for that . That left me to just try and manage it myself and at first I found I wasn't able to do anything without suffering more than was bearable . Even trying to watch TV became a chore as after a bit my brain would start fixating on the pain and I couldn't concentrate enough to follow what ever I was watching . Same would happen with sleeping , I would have to wait until I was completely exhausted before going to bed and then try and get a few hours sleep and as soon as I woke up the pain would start to take over again , so I learned to sleep in stages . A few years into it I met a company doctor who while chatting to me after the official examination said to me that this was going to be my life from now on . He said I should prioritise certain things that I really wanted to do and just suffer the consequences otherwise my life would eek away without me doing anything . I have to a certain degree followed this advice with things like , do nothing today because I am going to cut the grass tomorrow and split up cutting the grass into cutting one week strimming the next week . Or go to a concert knowing that I won't be able to do anything for a few days afterwards .

Anyways.......... the one thing that I did find relieved the pain ( it didn't actually but it distracted me enough ) was getting immersed in my sons video games ! , yeah , I know , this is not going to appeal to most people and it's a bit difficult explaining to my peers but it worked for me , for the time that I was playing, it sometimes completely took my mind off the pain . I was lucky enough in so far as fairly early on I met other men my own age online and have since become great friends with some of them so that kind of kept me involved . The kind of games that worked for me were obviously immersive ones and not the slower paced FB kind of games . It's a bit of a long shot I know and I only ended up doing it because I was at home and it was a bit of father son time, but it might work for someone else .

Jeeese , that was a whole lot of typing and I can feel my middle back solidifying as I get to here

TL:DR Version , try video games for brain distraction .

What console do you have I have an Xbox one used to play a good bit before my accident not so much now as its to painfull
Plus i have 17 month young lad that takes up my time

livemusic4life wrote: »

Sorry if this is in the wrong forum.

For the last 4+ years I have been suffering with severe chronic back and leg pain from various causes. Usually I am pretty good at getting on with things and doing what I can do. I had facet joint denervation at the start of December and ever since I've been suffering with new types of pain. I don't know why but this seems to be the last straw to my sanity. I'm finding it exceptionally difficult to get out of bed, leave the house, even motivate myself to wash my hair. Usually after a few days I snap out of it or blow off a bit of steam with friends. Because of three different types of pain, instead of the two I'm used to, it feels like I have no control. I know people are going to advise me to see my gp but he just wants to put me on anti depressants without helping me to cope with the added pain and restriction on my life. Anyone have any suggestions for coping mechanisms that have worked for you. Thanks

Hey

What consultants have you seen in cork?

I found out the hard way all the best are in Dublin unfortunately

livemusic4life wrote: »

Mr O'sullivan in the cuh - neurosurgeon - horrible individual. Mr hegarty in the south - pain management. A few others for side effects from pain killers.

O sullivan is exactly what you said-Loves to duck and dive when the **** hits the fan.Dr hegarty is genuine enough ive found,his prices however arent

Pm me if you want an name of a doc in dublin that changed my life to one of misery to one where i have a life

Im from Cork also so i know its a bit of a balls to go to dublin but thats life really

Take care of yourself

OP - Know what you mean about feeling alone. Chronic pain is something I've suffered with for years. Have a disc problem that tends to manifest itself in various guises.

Presently, am going through a bout of muscle cramps in my legs, especially at night. It's gone to the stage where I'm almost afraid to sleep so I can 'catch' the cramp before it starts. Countless combinations of pills aren't stopping it.

This next part sounds wrong, but I'm somewhat 'thankful' that some people I work with have similar issues with their back/spine so I have people to vent with or get advice from.

My dad, who had back issues in the past, but has been pain free of late, said to me that back pain is the worst, as you can't "see" it...yet it affects every part of you. If you break an arm, people see the cast and allow for it...with back pain, you are irritable, down on yourself, sore, and there are no 'visible signs'.

There are good days and bad days. I guess you just have to keep trying to find what's right for you. I tried the nerve burning and it worked for a while. Attempted the surgical route but was persuaded not to go down that route just yet. Right now, I'm trying exercise and Pilates...But everyone is different.

Easier said than done, but don't let it get you down. There's always people on here to support you, and that will be more than willing to listen to you if you need to vent.

I am so sorry for you, I know exactly how you feel, i have chronic pain for 20 years now and i am just 40 years old, you name it i have tryed it, mindfullness is great but only if i listen to Joh Kabit zinn he is the guy who started it , look him up on utube also look up a 10 mintute session with him on it , just relax you will not get it at first,
next ask your pain clinic to find out about MBSR course , its 6 weeks , once a week with one saturday, i know people who swear by it.
check it out in google or the Hse website. if you are like me you will check all suggestions,
accuppunture is great but it only lasts a day or 2 for me,
this is not an easy road but it does get better, i wish you the best and pm me if you like healing and light to you my friend