chronic long term pain and coping suggestions

shamrock2004

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

Did you go to your gp and get an assessment to rule out any serious health problems? What was diagnosed?

livemusic4life

shamrock2004 wrote: »

Did you go to your gp and get an assessment to rule out any serious health problems? What was diagnosed?

I certainly have. He seems to think that they may have accidentally damaged a nerve when they were doing the radiofrequency on the facet joints. There are no serious health issues as i regularly get blood tests and blood pressure done. As far as long term diagnosis, its three curves in the spine, DDD, Facet Joint Disfunction, SI joint disfunction and a possibility of arthritis.

lilmissprincess

Sorry to be digging up an old thread but I just came across this and felt relief that it isn't just me.

I was involved in an RTA as a pedestrian two years ago next month, I was pregnant at the time so any damage attained wasn't really fixable until I popped Baba (thankfully healthy) out. I've been attending Dr Hegarty who is absolutely lovely (if prices are eyewatering) and another mental health consultant because I've been left with what is being labelled facet joint syndrome but translates roughly as "can't sit for more than 15 minutes without my back seizing up, and quite a lot of pain despite the ridiculous amount of pain medication I'm on".

I've been out of work since the first nerve block was done to try fix this (I was just gone back to work 3 months previous after maternity leave) and its looking like I may not be getting back until at least the new year, if then, and that will be after a second nerve block (and a block into the muscles around them). Finding it hard to keep up with my very active toddler while balancing my mind with the fact that I've been out of work so long. It's funny, I never realised how much of my identity I tied up with what I do and my job, and now that it feels like it's another world it's quite the adjustment.

Going to look into some of the things mentioned here but would appreciate any others - again, if its a zombie thread, I apologise.

livemusic4life

lilmissprincess wrote: »

Sorry to be digging up an old thread but I just came across this and felt relief that it isn't just me.

I was involved in an RTA as a pedestrian two years ago next month, I was pregnant at the time so any damage attained wasn't really fixable until I popped Baba (thankfully healthy) out. I've been attending Dr Hegarty who is absolutely lovely (if prices are eyewatering) and another mental health consultant because I've been left with what is being labelled facet joint syndrome but translates roughly as "can't sit for more than 15 minutes without my back seizing up, and quite a lot of pain despite the ridiculous amount of pain medication I'm on".

I've been out of work since the first nerve block was done to try fix this (I was just gone back to work 3 months previous after maternity leave) and its looking like I may not be getting back until at least the new year, if then, and that will be after a second nerve block (and a block into the muscles around them). Finding it hard to keep up with my very active toddler while balancing my mind with the fact that I've been out of work so long. It's funny, I never realised how much of my identity I tied up with what I do and my job, and now that it feels like it's another world it's quite the adjustment.

Going to look into some of the things mentioned here but would appreciate any others - again, if its a zombie thread, I apologise.

there are quite a few support groups available which help a lot especially on FB. You lose a lot of your identity when you stop working for any amount of time. It really is a big adjustment. Mr Hegarty is the best and most understanding doctor that i have met throughout my journey. If the nerve blocks gave any relief, then getting the nerves in the facet joints burned might help.

acceptance is possibly the most important thing i've learned since i wrote this thread. Actipatch from boots has given me some kind of pain relief and i'm no where near as frazzled as i was at the start of the year. Keep your chin up. It will eventually get better, or you'll cope differently with it, but either way, you will get there. Feel free to message me if you need any support or just to have a rant. You are not alone

lilmissprincess

Thank you for your reply - I am very much so alone with this in my immediate friend and family group and am sick of hearing doctors saying how this is "not the norm for one so young" - even down to people giving me looks when I don't immediately bend to pick up something for someone older than me, to people doubting the reasons I'm not working, to my kid not understanding (because how could he?) that Mammy can't pick him up all the time. So finding others online in this ****ty situation is, for lack of a better word, a comfort (even though I wouldn't wish this on anybody else). It's good to know there are others, doing better, out there.

livemusic4life

lilmissprincess wrote: »

Thank you for your reply - I am very much so alone with this in my immediate friend and family group and am sick of hearing doctors saying how this is "not the norm for one so young" - even down to people giving me looks when I don't immediately bend to pick up something for someone older than me, to people doubting the reasons I'm not working, to my kid not understanding (because how could he?) that Mammy can't pick him up all the time. So finding others online in this ****ty situation is, for lack of a better word, a comfort (even though I wouldn't wish this on anybody else). It's good to know there are others, doing better, out there.

If you ever want to meet up for a coffee or just want to message me to have someone to talk to, feel free to give me a shout. I can highly recommend chronic pain international support group on fb. They have given me a lot of support.

shamrock2004

livemusic4life wrote: »

If you ever want to meet up for a coffee or just want to message me to have someone to talk to, feel free to give me a shout. I can highly recommend chronic pain international support group on fb. They have given me a lot of support.

Ditto that. PM me if you need to talk. I suffered for 3 years with chronic back and sciatica and am now pain free - all of which happened in my late 20s. Was told the same thing, people telling me "you're too young to have this..". Best of luck with everything.

fro9etb8j5qsl2

I'm another young sufferer littlemiss, had an accident at 24 and still suffering with chronic pain now 5 years on. Same as livemusic4life, I found acceptance to be the key. I spent a lot of time medicated to my eyeballs, moping around and depressed about all of the things I couldn't do. My outlook changed hugely once I accepted my injury and limitations. My specialist referred me on to a physio/cognitive behavioural program which has been brilliant in shifting my beliefs about what chronic pain is and how to cope with it. I'm looking at a rhizotomy now but I'm on the fence about whether I'll have it or not, I know it will not cure the pain altogether and there are risks attached. I can tolerate the pain, it's the fact that it is there constantly that limits me so unless the rhizotomy will cure it completely, I cannot see the point of having it. Also, if I had a penny for the amount of times someone said 'oh but you're such a young woman' blah blah, I would be rich. As if I need reminding that I potentially have a long life of pain ahead of me :rolleyes:

cerise

I know what u are suffering. chronic pain is so tough and tiring. The invisible disease! Accept what u can do and can't. I have good and bad times. Tens machine and lidocaine patches helping me at the moment. sitting, sleeping using pc a problem again. (lap top easier)

livemusic4life

Andrew Calm Dropout wrote: »

I'm another young sufferer littlemiss, had an accident at 24 and still suffering with chronic pain now 5 years on. Same as livemusic4life, I found acceptance to be the key. I spent a lot of time medicated to my eyeballs, moping around and depressed about all of the things I couldn't do. My outlook changed hugely once I accepted my injury and limitations. My specialist referred me on to a physio/cognitive behavioural program which has been brilliant in shifting my beliefs about what chronic pain is and how to cope with it. I'm looking at a rhizotomy now but I'm on the fence about whether I'll have it or not, I know it will not cure the pain altogether and there are risks attached. I can tolerate the pain, it's the fact that it is there constantly that limits me so unless the rhizotomy will cure it completely, I cannot see the point of having it. Also, if I had a penny for the amount of times someone said 'oh but you're such a young woman' blah blah, I would be rich. As if I need reminding that I potentially have a long life of pain ahead of me :rolleyes:

Someone else recommended CBT to me recently, to help me with managing with my pain. How exactly does it help. i thought it was for obsessive compulsive thoughts. or are our pain thoughts turning obsessive compulsive! hmmmmm

shamrock2004

livemusic4life wrote: »

Someone else recommended CBT to me recently, to help me with managing with my pain. How exactly does it help. i thought it was for obsessive compulsive thoughts. or are our pain thoughts turning obsessive compulsive! hmmmmm

Yeh I think some people have the propensity to obsess about their back pain and the idea is to try and address peoples perception about their pain. In fact, this is how good physios will now treat back pain - by talking to people and educating them about pain as opposed to giving them back exercises. We have been lead to believe that our backs are weak structures which couldn't be further from the truth.

This guy is leading the way:

https://www.youtube.com/watch?v=dlSQLUE4brQ

livemusic4life

shamrock2004 wrote: »

Yeh I think some people have the propensity to obsess about their back pain and the idea is to try and address peoples perception about their pain. In fact, this is how good physios will now treat back pain - by talking to people and educating them about pain as opposed to giving them back exercises. We have been lead to believe that our backs are weak structures which couldn't be further from the truth.

This guy is leading the way:

https://m.youtube.com/watch?v=dlSQLUE4brQ

I did the "back to fitness" course in the Cork University Hospital. And i have to say, thats what helped to change my thinking about my chronic pain. it was all about pacing, and tricks to get you through the day, and just because you're in pain, doesn't mean that you're damaging yourself when you do something. And they give you surveys at the start and at the end to do with how you see your life, how much your pain affects you mentally, and by the time the 10 weeks are over, you can see how much you've changed mentally. It was a great course, but i don't think a lot of people get the opportunity to do it. Chronic pain is far more to do with your mental coping skills, than medication. So i guess that course was like a practical CBT course, they taught you it as you went along, you just didn't realise it at the time

shamrock2004

livemusic4life wrote: »

I did the "back to fitness" course in the Cork University Hospital. And i have to say, thats what helped to change my thinking about my chronic pain. it was all about pacing, and tricks to get you through the day, and just because you're in pain, doesn't mean that you're damaging yourself when you do something. And they give you surveys at the start and at the end to do with how you see your life, how much your pain affects you mentally, and by the time the 10 weeks are over, you can see how much you've changed mentally. It was a great course, but i don't think a lot of people get the opportunity to do it. Chronic pain is far more to do with your mental coping skills, than medication. So i guess that course was like a practical CBT course, they taught you it as you went along, you just didn't realise it at the time

That sounds great! With back pain, the good physios will try and "recondition" you to believe that you are not "physically broken" - by encouraging more movement, like the course you mentioned.

fro9etb8j5qsl2

livemusic4life wrote: »

I did the "back to fitness" course in the Cork University Hospital. And i have to say, thats what helped to change my thinking about my chronic pain. it was all about pacing, and tricks to get you through the day, and just because you're in pain, doesn't mean that you're damaging yourself when you do something. And they give you surveys at the start and at the end to do with how you see your life, how much your pain affects you mentally, and by the time the 10 weeks are over, you can see how much you've changed mentally. It was a great course, but i don't think a lot of people get the opportunity to do it. Chronic pain is far more to do with your mental coping skills, than medication. So i guess that course was like a practical CBT course, they taught you it as you went along, you just didn't realise it at the time

This is the course I did! Didn't realise it was considered to be CBT until my gp mentioned it to me. I think a lot of people get into the negative cycle of allowing their pain to become their identity. All the medication and treatments I've had and the thing that has made the biggest difference to me is just accepting the pain and accepting my new limitations.

livemusic4life

Andrew Calm Dropout wrote: »

This is the course I did! Didn't realise it was considered to be CBT until my gp mentioned it to me. I think a lot of people get into the negative cycle of allowing their pain to become their identity. All the medication and treatments I've had and the thing that has made the biggest difference to me is just accepting the pain and accepting my new limitations.

Yes, i didn't realise it either, but once you think about it, it makes a lot of sense. It certainly helped me on my journey. I guess at 33, i still have a long way to go, but its good to know there is support about.

kilp10

livemusic4life wrote: »

I did the "back to fitness" course in the Cork University Hospital.

Any idea are these regular courses in CUH? And where would I find info on it? Also a sufferer of chronic pain after a car accident, it's been a tiring, stressful and draining 15 months. But like a few have said, acceptance of limitations is a changer, I tried going back to my usual sports and trying to pretend nothing was wrong, but was going nowhere so once I decided to drop out of some things and focus more about what I can do rather than what I can do, things got a bit easier to deal with.

livemusic4life

kilp10 wrote: »

Any idea are these regular courses in CUH? And where would I find info on it? Also a sufferer of chronic pain after a car accident, it's been a tiring, stressful and draining 15 months. But like a few have said, acceptance of limitations is a changer, I tried going back to my usual sports and trying to pretend nothing was wrong, but was going nowhere so once I decided to drop out of some things and focus more about what I can do rather than what I can do, things got a bit easier to deal with.

Its not for any type of chronic pain, it is purely for back pain. I'd imagine you need a gp referral for the physio department in the cuh and then you could ask them about the back to fitness course.

fro9etb8j5qsl2

I went to St John's in limerick and it was the consultant who was treating me that referred me. They don't take gp referrals in limerick.