Skip to main content

Living with physical pain and worsening mental health

Living with physical pain and worsening mental health

T

Terry dactyl

Joined
Mar 5, 2012
Messages
1,362
Location
macclesfield
Hi there . I’ve been looking around this thread for a while and just wanted to discuss this topic .

I am an avid poster on here . Especially in the last 2 years .

My history starts 15 years ago when I had a back problem which needed surgery ( laminectomy) , and a shaved disk . Due to nerves being compressed which was affecting my legs .

Unfortunately in the next year . Things worsened significantly.

The disk that was shaved basically disintegrated over time, and what was left of it was entwined with scar tissue from the surgery . At this point I was still having quite rigorous physio as I was still in a lot of pain . But the physio wasn’t happy with how I was getting on . So they sent me for another scan.

I ended up being rushed to the spinal unit at Salford with cauda equina syndrome , a bladder that wasn’t emptying and loss of power in my legs . I needed emergency surgery and a spinal fusion and that disk removed . During surgery the found that I had a fractured vertabrae which had healed slightly out of sync . This wasn’t picked up on any mri .

Oh and by the way between the 2 surgeries I was still going on pne games non the wiser of the damage that was happening .

So at this point we are in 2013 .

After 3 years I was strong enough to return to work . I worked in the construction industry as a self employed Subbie .

Things were on the up and I managed around 6 years without any real problems . Yes had to do things slightly different but I was back living a normal life.

2020 . Covid year and just at the start of the year I was getting some back ache again and a few pains in my legs nothing like what I had . But enough to need some medication to get me through.

Carried on working . Well , I had too . Or the bills didn’t get paid.

Pains where becoming more frequent and prolonged so had to be referred again to see what was going on .

The disk below the fusion has now ‘ slipped’ .

Obviously covid brought a lot of issues with waiting lists and so on . So I was on the waiting list for 2 injections in my back . A facet injection and a steroid . Which wasn’t pleasant. But I did get a few months of relief from it .

The next 2 years at work was in and off having to have boughts of rest and recovery and the. Would work again . But I could tell things where gradually becoming too much .

And eventually in July 2023 I had to stop work completely. The disk was getting worse and had narrowed the spinal cord . ( stenosis)

Painkillers overtime have been increased gradually to the present day .

Unfortunately I’m now on benefits which I hate . But I suppose they are there for that reason .

So I’ve been living with pain for around 2 years now . I had another injection but I’ve been told I need to use them sparingly as they will stop working eventually and they just aren’t healthy for the body .

Surgery is out of the question unless it’s an emergency . As you can’t just keep taking bits out of the spine . It’s not jenga !!! As the surgeon says .

Now Ive always bee. A happy go lucky sort . Don’t take anything too seriously and just go with the flow .

But for the last few months . The physical pain has started to really affect me mentally .

I’m not sure what triggered it but I just have an overwhelming feeling of hopelessness and thinking about my future as in . ‘ is this my life now going forward’

I get intrusive thoughts a lot . Wanting to end it . But then thinking about my loved ones really upsets me . I can’t do that to them . I had a health check 2 weeks ago and something was flagged up that they set up an appointment with a mental health team . Well they referred me to a joint pain program that was with the Nuffield gym which is over 6 months . I was really looking forward to it . So I applied to it. But recieved a phone call back saying my condition was too complex for them to help me . They were worried about risk of injury . So that has set me back again .

They have changed my medication to see if the painkillers will help with the low mood and stupid thoughts . But all they have done is made my pain worse . They said try them for a month but I can’t do another 2 weeks of this .

I’ve gone from a physically active person to well the opposite. Put weight on. High cholesterol. Just everythjng has gone to pot .

I’m struggling doing the most basic of tasks . My wife is amazing she works full time . And I’m this mess at home who can’t even do some basic chores at the moment. Just constantly want to be in bed . She doesn’t deserve this .

Don’t know what has happened but I’ve just hit a wall and not sure what to do or where to turn .

And now I have my pip review. To see how my condition affects me . I just can’t think about that at the minute . But I know I need to .

So yeah that’s my story and having to live with chronic pain and how it’s affecting me mentally .

Thank you for giving me the opportunity to write this

Oh and UTW!!!
 
As Raefil says, get referred to pain management if you haven’t already referred. They can’t cure anything, but can help with ways of managing the pain. Tens machines can give you a little relief and things like meditation.
Also, have you tried medicinal cannabis. That can help dull the pain. Speak to your doc or whoever at the hospital.
It’s all about putting together a package of things to help ease you through the pain.
Do plenty of your own research into all the different things that are available and what may help you. Join forums that are specifically about your conditions and ask others for their stories of coping with pain.
Literally make it your 9-5 job to gain all the information you can.
Also don’t be afraid to ask for anti depression medication to help you through this sticky patch.

Best wishes Terry, hope you find some help.

Edit: oh, and fuck worrying about benefits, you’ve worked til you dropped and you’re paid your national insurance. You are entitled to, and deserve them.
 
I expect it took a lot of grit & determination to even write about the history of all this trauma.

( I'm lucky that- touch wood at age 70 - I believe that I'm uh, 'okay' - but of course things can soon change ).

Maye you can do some research about - Yoga. Now, Idk much about Yoga - but there are many different forms & mindsets about...Yoga.
Some are more 'macho' and/or more focused on how it helps an athlete develop & maintain their body when they are in competition with people. Imo there's nothing wrong with that outlook, if that helps them with their individual or teamwork goals. Other 'branches' of Yoga are equally as focused on the 'Mind, Body & Spirit' aspects - and I by that, I don't mean (imo) wishy-washy 'Dreamcatchers' & listening to Enya CD's ( again, if that helps to enlighten or simply soothe-away some people's cares & worries- who the heck am I to argue ? ) - rather, I mean some form of 'medication'-in-the-form-of-Yoga , and it also might mean changing your diet, too. Idk how much meat, if any , that you eat ( & btw I DO eat some meat, & dairy products, too , fwiw ) - but as part of a 'package' of gradual changes, it might be worth considering. I wrote gradual, because you're changing what you put into your body, and your body has gotten used to what it gets right now - & "too much, too soon" might stress it ( your body) out. Take advice about what time period is, as Idk.
Perhaps giving up alcohol and nicotine would be a good idea, if you do do either or both of these things. They alter your mind & body, after all, and make them less efficient. (I have an odd pint or two occasionally these days, and packed-in fags some years ago, cos I could tell it was "getting-a-grip" on my chest )

Painkillers. There's a massive, massive world of pain medication. I wouldn't presume to advise anyone on this subject of individual branded chemicals. I do have my opinions though, and one of those opinions is that is hard for any individual to not gradually, gradually raise the regular dose of Any Individual tablet/capsule etc of these chemicals; - due to the body and/or brain developing tolerance. It's SO hard, that I hope you keep an accurate record of your amount and frequency of that dose.
Another point about painkillers is that some of them are very dangerous;- dangerous in combination with other drugs ( including alcohol - which imo is simply another drug ) - and dangerous if exceeding the prescribed dose. The classic example is the drug Fentanyl, a highly addictive synthetic Opiate.
There's been a Fentanyl 'epidemic' in the United States - many have died & many more have become addicted. This, after the manufacturer 's Bare-Faced-Lies about the risks. These makers don't want people to actually get better....

I hope you include discussions about the above - with your wife in any of your plans.
I've no doubt she loves you, & if you seriously consider some of these suggestions, she will hopefully consider changing her diet & exercise behaviour to be more sympathetic & synchronised- with your own requirements.
 
Thank you for your reply . I will digest it a bit . I hardly drink . Only very occasionally like at a social gathering but not at home . I do smoke . I’m on max dose of pregablin and amiltryptylene although this has been lowered recently due to being groggy most of the morning . I also take a statin for high cholesterol.

Diet is vastly improved.

We have tried different things . I’ve tried Keto diet . Calorie counting . But we are sticking to most Mediterranean diet apart from a roast on a Sunday .

Cut out bread , swapped cheddar for feta . . Eat a lot of fish .

the meditation part I haven’t done . I will look into that .

Again thank you for you reply .
 
raefil said:
Have you been referred to a pain management clinic?
Click to expand...
Yes I have . Several . It’s like a constant roundabout of pain management . Gp . Surgeon . That’s what it feels like anyway . Each injection has been the result of a pain management team referring me either for an injection or back to a neurosurgeon .
 
prestonmadhouse said:
As Raefil says, get referred to pain management if you haven’t already referred. They can’t cure anything, but can help with ways of managing the pain. Tens machines can give you a little relief and things like meditation.
Also, have you tried medicinal cannabis. That can help dull the pain. Speak to your doc or whoever at the hospital.
It’s all about putting together a package of things to help ease you through the pain.
Do plenty of your own research into all the different things that are available and what may help you. Join forums that are specifically about your conditions and ask others for their stories of coping with pain.
Literally make it your 9-5 job to gain all the information you can.
Also don’t be afraid to ask for anti depression medication to help you through this sticky patch.

Best wishes Terry, hope you find some help.

Edit: oh, and fuck worrying about benefits, you’ve worked til you dropped and you’re paid your national insurance. You are entitled to, and deserve them.
Click to expand...
Thank you .
 
I emphasise, pain is a horrible thing to live with, i have an arthritic hip that shoots down into the leg, i can go from doing 12 to 15,000 steps a day working part time & doing 3 Dog walks a Day to when it flares up, hardly being able to put one foot in front of another. Thankfully at the moment the pattern is 2 weeks or so of absolute pain (as it is right now) and then it subsides and is fine for 3 months or so.
It's horrible and bad enough like that, so to have that constantly like yourself would be unbearable.
Currently going through a period, time before was around March, took 5 weeks to get an appointment from the initial assessment, by which time it had subsided & that episode gone,
You eventually see the Doctor when its not too bad, you tell him how much pain you where in and they look at you as if to say 'really, was it really that bad, because you seem to be alright now'.
I get the impression that because most have never really experienced pain they can't really relate.
A bit like a youngish midwife whose never had a Baby not truly understanding what it's like.

I hope you can find a way to manage your pain because if its constant it must totally spoil your quality of life.
It's bad enough being intermittent.
Well done for reaching out, it helps sometimes to 'share' what you are going through, especially if you can off load on this sort of community without feeling that you are burdening your loved ones too much, or too often.
Take care @ Terry dactyl
 
deepdaledreamer said:
I emphasise, pain is a horrible thing to live with, i have an arthritic hip that shoots down into the leg, i can go from doing 12 to 15,000 steps a day working part time & doing 3 Dog walks a Day to when it flares up, hardly being able to put one foot in front of another. Thankfully at the moment the pattern is 2 weeks or so of absolute pain (as it is right now) and then it subsides and is fine for 3 months or so.
It's horrible and bad enough like that, so to have that constantly like yourself would be unbearable.
Currently going through a period, time before was around March, took 5 weeks to get an appointment from the initial assessment, by which time it had subsided & that episode gone,
You eventually see the Doctor when its not too bad, you tell him how much pain you where in and they look at you as if to say 'really, was it really that bad, because you seem to be alright now'.
I get the impression that because most have never really experienced pain they can't really relate.
A bit like a youngish midwife whose never had a Baby not truly understanding what it's like.

I hope you can find a way to manage your pain because if its constant it must totally spoil your quality of life.
It's bad enough being intermittent.
Well done for reaching out, it helps sometimes to 'share' what you are going through, especially if you can off load on this sort of community without feeling that you are burdening your loved ones too much, or too often.
Take care @ Terry dactyl
Click to expand...
Thank you very much . Yes it is pain all day . Everyday . Only way I can describe it, is like toothache, but in your legs with an extra burning and numb dimension to it . And someone holding a knee in your back and pulling you backwards.

I’m at a point that I’m not sure if the pain medication is having any effect . Or if this is the effect with the medication , so I don’t want to come off medication for that reason . They have just changed one painkiller for a month just to see if it helps with my low mood . I’m about 2 weeks in and pain has been a touch more intense . So I will have to go and see the gp about that . As I not sure there’s much point waiting much longer to tell him it’s not worked . And will take it from there.
 
Agree with everyone already wishing you well.

Must be bloody tough living like that and hopefully writing about it on here has helped get some of it off your chest?

When the aches and tears tot up too much I hope to be as resilient as you are. Come on here and have a good moan if you need to as I do think getting shit off your chest every now and then is good in the long run.

I occasionally type out rants and grumbles on a thread on here somewhere but never post them as most of the time getting my head round them while writing them has sorted the issue out.

Best wishes once again, take care👍🏻

I keep expecting each bad back ache to be the one that doesn't clear up but think keeping on moving and busy is best for now?
 
I feel for you Terry, my wife suggests a pain management team , she like yours has been incredible while I slowly recover from this stroke. I’m a bit like you can’t do basic things anymore but I haven’t got the pain. I’m sure pip will be ok , the tightening up of the rules are to prevent able bodied getting on the benefits not taking it away from people who are on it. That’s how I read it anyway. Your wife must love you very much, look after her as best you can. Wishing you well.
 
Chronic pain starts leaking into everything once it’s constant, especially when sleep goes and you’re stuck in your own head.
Had a period with nerve pain and muscle spasms, those sudden involuntary contractions that just hit out of nowhere, not even the pain itself, just the tension building on top of it. That’s what pushed things mentally more than anything.
Standard painkillers dull it but don’t touch that background stress they create over time. Cannabis helped take the edge off both the pain and the spasms enough to get some breathing room during the day
 
Back
Top