I have been struggling for the last 4 months with severe pain and today was a really rubbish day (the sort of day where everything goes wrong and you just wanna cry)
My kitchen tap broke and had to call out an emergency plumber so that was an unexpected expense 😕
My pain is particularly bad (multiple slipped discs in my neck and multi-level disc bulges in the rest of my back - lumbar, thoracic and sacral areas all affected)
My fiancé said something today which I took the wrong way and flew off the handle completely. This is not in my nature at all. I’m just concerned that my pain is affecting not just me, but my loved ones around me.
Is anyone else going through the same thing or something similar? How is your pain affecting your mood and general well-being.
Thanks for listening x
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nurseblue
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That's understandable,sometimes when you have a bad day and everything goes wrong, it's your nearest and dearest that normally end up with the short end of the fuse, but remember when you have long term health conditions peoples can't expect you to be like a spring lamb, or be the life and soul of a party,and medication can make you feel miserable,there's many factors that others will seem to forget that you are a trained nurse, and you of all people understand how the human body works, so this will give you an insight to the future, which probably gets you more anxious knowing that you'll be expecting more aches and pains,I definitely don't like arguments, I suffer with neuropathy, and if I get anxious or stressed out my symptoms get worse, so I avoid all those at any expense, I try to keep life simple, and unfortunately its other people can cause the problems, so try and explain how your symptoms can get aggravated if stress makes them worse,I struggle to accept my condition, that's the biggest problem I have, probably because there's no medication to really help with the pain, that's what I have my issues with, they can send man to the moon, but can't solve nerve damage,and then it can affect your sleep patterns, you might be in a similar situation, and I feel sorry for you,hopefully you'll be able to put your case forward to your family and friends.
Sorry for the really late reply. Thank you for your kind words. Or sucks when it’s your nearest and dearest taking the brunt of your bad moods/days due to pain I’ve got an outpatient appointment with Neurosurgery on the 28th of the month, so hopefully get a treatment plan in place x
Hey,good luck,hopefully you can get a little more help towards getting your symptoms sorted out, unfortunately there's no golden fleece in life, but I wish you well,and stay healthy 🤗
Thank you. I’m hoping for positive answers from my Neurologist when I am assessed keeping everything crossed. Thank you for your kind words. Wishing you comfort and good health 🥰
Pain has a big impact on my mood (spinal cord injuries, amputated leg and SCI related osteoporosis) and I'm so sorry your partner doesn't understand this. Do they attend hospital appointments/GP appointments with you? If not, this might be a way to increase their understanding. Wishing you all the best. you are a survivor and are strong.
Sorry for the late reply. Thanks so much for your kind words ☺️ They don’t attend appointments but have access to my discharge letters from hospital (I have given full permission for him to look at them as I have copies at home) I don’t think he quite understands the level of pain I’m actually in, which is frustrating x
Hi I was so sorry to hear your story and I could identify with so much of what you said. There are no easy answers here and your being irritable (or worse) with those closest to you was something I did, almost instantly regretting it because they were in fact suffering with me. The person they once knew had gone, replaced by an ungrateful, irritable, and unpredictable monster who was best left well alone. The one thing that saved me from the pain in my back was a nerve block which I had in hospital and gave almost instant relief, this was recommended and organised by a local pain specialist clinic. It doesn’t last for ever and I had more when needed. I think, though I may be wrong, you can also have an operation to achieve something similar. You don’t mention if you have been referred for specialist help but I did find this most helpful. Other than that I can only empathise with you both in pain and effect on loved ones and promise you that you are not alone my thoughts and best wishes are with you and promise better days are ahead. x
So sorry for the late reply. Thanks so much for your lovely words and I’m glad you could relate to it in some way. I’m glad it’s not just me who’s suffering with this. It’s a co start guilty feeling and feeling like you are being a burden on them. I don’t think my fiancé truly know the amount of pain I’m in. There are some days where I’m left doing the house work, when in reality, I’m genuinely struggling to even wash the dishes, but I do it cos I hate sitting around doing nothing x
There is mounting evidence that the brain is affected by inflammation. It used to be thought that nothing could get by the 'blood brain barrier' but they now realise that many things do cross to the brain, and there is evidence that inflammation can cause depression. And of course pain can be caused by inflammation.
Sometimes when we understand how our bodies are affecting us, it can make it easier for both ourselves and our loved ones to cope.
Do you like reading books? You might be interested in reading The Inflammed Mind by Edward Bullmore. He started out as a physician and remembered noticing that many of his patients with painful conditions also had depression. It wasn't until many years later that he realised that they weren't depressed because they were in pain, it was the inflammation that was causing the pain AND the depression!
That book you mention sounds interesting . Just recovering from a bout of sciatica.. and have now found out due to COVID that we can’t travel to Scotland to see an elderly relative. All this has left me feeling very depressed and worried. I imagine that the book would maybe explain all of these feelings . Why is it so difficult to get feelings like this recognised by doctors these days they seem reluctant to offer any care now ??
So sorry for the late reply. Thank you for your reply ☺️ I don’t read but I might have to do some to truly understand what’s going on in my brain. My anxiety is all over the place, and for the most silly little thing aswell 😩 x
Iv horrendous pain everyday as iv lumber spinal stenosis, and just been told after yet another mri, iv got to have both hips replaced.
Being in pain does puts a huge strain on us, mentally and physically
How are we supposed to be "happy" when this has overtook our lives so badly.living with constant 24/7 pain and not being able to do the simplest things without wanting to cry with pain and frustration.
I know ppl say they now your in pain, but I don't think they realise how bad you are suffering.
Your fiancé I'm sure can see how this is effecting you and should understand it's putting a strain on your mood an support you best he can. I hope you can get relief from all this asa possible. Iv been diagnosed since 2005 and all Iv been given is medication hopefully now iv got to have hips done as they are near collapse, I'm preying this will help with the severity of pain in my legs and live a better life.
Hello thanks so much for your reply. Sorry it’s taken me so long to do so. I hate how it’s truly an invisible illness as no one can actually see what’s going on deep down inside. Pain is invisible to a point, and depression and anxiety can appear invisible too. This can make it so difficult for people to truly understand what distress and discomfort I’m going through. I’m trying to live as normal a life as possible x
Pain def affects my mood n i suffer 24/7.
I warn others.This way theres no confusion or others thinking im just being evil.
For me..music,humor n my dog get me through my days
Thank you for your reply. So sorry for the delay in mine. It’s so difficult isn’t it. I try and live a normal life, but it’s so difficult to do so right now due to pain and weight gain x
Chronic pain changes your brain, without a doubt - everything you're experiencing is normal.
Are you getting treatment via a specialist chronic pain clinic? We are lucky in the UK because the NHS provides chronic pain services. Treatment is essential. I tackled my chronic pain in Australia where public services are limited (1-year wait list) and so got into debt funding my own, self directed treatment with private treaters. I got there in the end, but I owe a lot to the work of Lorimer Mosely. His book Explain Pain changed my life - no exaggeration
I don't receive commissions and have no affiliation with him or his team. I just have immense gratitude for the door that his work opened for me, when I was at the depths of a depression caused my by chronic pain and the resulting impacts on my career, social, personal life - I believed my life was over.
His organisation, the Neuro Orthopaedic Institue, have a well established training presence in the UK. Any treater (doctor, physio, osteo - whatever) that has completed one of NOI's courses should be an good ally for you in your recovery. Unfortunately, any treater that has not studied chronic pain can make matters worse. I learnt that the hard way.
Thank you so much for such an in depth reply. So sorry for the delay in mine. I’m waiting on my Neurosurgery outpatient appointment and will hopefully hear some good news from them 🤞🏻 I’m not a reader, but people are recommending reading, and at this point, I’m willing to try everything I possibly can. Your reply has truly given me some hope for recovery, and for that, I’m truly so grateful 🥺 thank you so so much!! X
So sorry for the delay in replying to your comment. Thank you for commenting my anxiety at the moment is sky high, so I’m screwed 😂 you are so right with it being a vicious circle. Genuinely feel like I cannot get out of it x
It’s hard to be nice when you’re in pain, especially if you’ve been dealing with the pain as well as minor inconveniences all day. I can sympathize, I have chronic pain (mostly in my back) myself and some days are worse than others but most days i’m hanging on by a thread doing my best. Im not an angry person but sometimes you just run out of “spoons” and blow up at people. I don’t do it often but it happens sometimes because some days, everything is just too much.
Thanks so much for your comment, and apologies for the delay in my reply. After being in constant pain for 6 months now, my fuse is certainly very short now, and I blow at the smallest thing, and sadly, I don’t my fiancé truly understands how much pain I’m actually in, cos I seem to hide it pretty well (cos I feel like I need to)
Recently, I’ve been sitting not able to do much cos of my pain levels, and you feel like a failure, even though I know I shouldn’t x
no problem and it’s ok, you got other things to do. I often feel I have to hide it too; the times i’ve let people see me at my worst or weakest, most of the time they make me regret it somehow or I overwhelm them because they ‘don’t’ understand or know how to help. not that im blaming them but many times you have to pretend you’re ok to protect yourself or to protect others. Feelings aren’t always rational and they don’t have to be, you’re entitled to feel them rational or not but you didn’t ‘fail’; you’re in pain and you’re doing your best with what you have which is all you ‘can’ do. It helps to forgive yourself for things you didn’t choose/can’t control, take the time you need to take care of yourself, have hobbies and don’t ignore your physical limits and take it one day at a time because if you blame and neglect yourself, it only makes everything worse. not that I still don’t struggle myself but im doing my best as well. I hope you’re getting the help you need or find it soon.
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