I have suffered with chronic pain, fibromyalgia for over 30yrs but the past few years have taken me down a very dark journey ive lived with pain for many years and can cope with the pain but of late the pain knocks me to me feet and im not good to anyone.
All i get told now is that its all about learning to live with it but what none of them are understanding that the pain is that bad that i cant cope with it and i know one day i will take pills and fall asleep and never wake up again and never be in pain again.
Why do they not understand just how bad this is everyday living with this amount of pain its too much to cope with as often as it is.
I know this is going to happen because they dont listen they dont actually know what its like to be dealing with so much opinion a daily basis its draining and brings your life down. Ive spoken to all my children and i have explained how i feel and the situation im now in and that i cant carry on like this.
They obviously dont want to hear this and dont want me to do this but they also understand ehat im saying and how i feel. Ive tried to go private but the cost id £5200 and thats just to speak to someone and have mri and xray done not even spoken to them about what they can or cant do either. I cant afford this so what can i do now because i know its just time ...
Lee
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jaffa75
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I completed hear what your saying. It’s really rough being in so much pain EVERY day and trying to cope with it, over the years I’ve been getting less and less able to do anything let alone the things I used to enjoy, I’m not sure what the answer is! Some days I don’t know how I reach the end of them….. I suppose my girls keep me going! I watch a lot of tv to try and distract myself, sometimes play games on my phone, and just take it minute by minute if I have too! I know it’s no way to live……. Pacing is all I’ve been told?! Not great advice really, the emotional welling support has been good for someone to talk to if you have something like that in your area? Is there any other GP’s you can talk to at your surgery that know more about chronic pain/fibromyalgia?? Worth asking, sometimes it’s nice to be heard if you can find someone who at least tries to understand! I know most people have no clue! And why would they?! But know you’re not alone! Which does feel like it! Sorry I’ve not been much help! But nice to be heard ☺️
Hi thank you for your reply yes it sure is nice to be heard but I'm not getting that from my GP or the pain clinic. I only found out yesterday that the pain clinic after 30yrs have decided to put me on this side group not discharged thru say but if I didn't call them within a yr to day I wanted to be seen then I was taken off the list. Bearing mind the last time I went to pain clinic I see a different person as my person had retired nothing was said to me though so I see a different person and this is what they did.. so now I've gone back sayingI'm so bad now and I can't cope with it they take me off so clearly not bring listened to... I'm at the point that the pain is so so bad that I don't want to carry on like this in so much pain I can't do it, when I'm using a good day it's a good day but don't get many of them. I've told my children I can't cope with this anymore and it's not a life to live in this much pain. If I'm getting worse already how the hell am I going to be in the future I've got this bag in less than 6 months I don't want to have worse pain is just too much to go through this often I'm drained knackered all the time and fibbing it hard to pick myself up after being so crap for so long. I do watch tv documentaries and I play games on my phone but when I'm in this much pain I can't even do those two simple things. I'm so bad I'm a state I'm crying in pain all day and for days lost time I was in chronic pain for e half weeks not one day did it give in or settle...i doubt want to cardio on like this and this is what they need to understand why would I want to be like this they just beast is day the weird I'm in pain and that's it... thanks for taking the time out too reply lime I said, how your having a good day.....
Can you speak to someone else in your gp surgery? Can they adjust your medication to help with the pain? But I don’t feel heard either at my gps but I’m hoping one day I will find someone who sort of understands or I feel like they are listening even just a little bit those doctors are out there?! No one can really understand as your pain is personal to you! But I can understand as I live with my pain which is rubbish! Most the time I’m indoors trying to get comfy! And riding it out……. I’ve started doing little meditation …. Although small bits it is helping as I find it very hard to relax …..
it would be nice for a Dr to listen and to actually understand how it must be to be i this much pain all the time, i don't go out im inside most of the time because of how i feel, ive tried and tried for many yrs but im just getting worse and i know im not going to be able to cope with this pain when it gets worse. i was on fentnyl patches and oramorph but ive come of them now because they didn't want me on it they have changed it to oxycontin 120mg twice a day and this isn't even helping the pain..i do get good days but not many of them and the minute's just take ages to pass a whole day is a long day when all your feeling is pain...nice to have a ;little chat with you though thank you for replying 😀👍
It’s just nice to know ur not alone! Gp mainly do phone calls so u don’t have to leave the house and worth asking for different pain killers! I get really low and cry a lot ….. cos there’s no end and yes you slowly get worse and it’s so hard!!
Do you like music? As sometimes i find that really helpful to help me feel more uplifting 🙂
Yes very frustrating surely they can see how much pain I'm in everyone else can see by my face but not the pain clinic. I understand that they may not have the answer but they should at least give a bit of empathy if nothing else...yes everyday is all about coping with tbe pains and getting through the day and yes I do do it yes I get through the day but for how long I don't know because I just c a nt keep going through my life like this is so much pain....I. guess all we can do is hope that one day we will be listened to and fi gers crossed one d a y they could inject us with summin that makes our body numb how nice would that be..
Hello, I’m Isobel from the UK and I have chronic pain too. I have been diagnosed with FQAD which is Fluoroquinolone Associated Disability. I tell everyone about this as it’s caused by one of a family of Fluoroquinolone antibiotics, the one I was prescribed, for sinusitis, was called Ciprofloxacin. All these have a similar sounding name, ie Levofloxacin, Moxifloxacin. I have not picked up on where your pain is, so I’m thinking it’s all over your body. Mine is too. I have peripheral neuropathy in my lower legs and feet 24/7, tinnitus, dizziness, and rheumatoid arthritis triggered by Ciprofloxacin, to name but a few things. Some people could be wrongly diagnosed with fibromyalgia when they present with a number of things going on in their body. Hope this has not happened to you. I’m in the UK. With my best wishes, xx
Hi my pain had slowly moved to my coccyx is can't sit or lay down without pain instant pain i go all red burn up and it hurts so much... I've been telling the pain clinic for the past 10 yrs that this pain is going to my coccyx but just get told yeah it's all about living with it and learning how to live with it. I'm sick of hearing it it's all they say don't they think we have dealt with it if I've been ill for 30yrs plus.....
hi yes i love to listen to music but honestly when im on my bed rolling around kicking my feet up in the air i cant do anything but ride it out. the issue i have now is ho the heck am i going to deal with this when it worse than it is now. ive got fibrom, complex regional pain syndrome, emphasima,copd, restless leg,raynaurds. i feel like they just say the same to me now eveytime i go its the dsame thing but they not getting just how bad and how much it takes over your life, i also look after my grandson fulltime so obviously at times that i need to rest up i cant as hes ony 10 and still needs me....again thanks for the little chat................
jaffa75, it is heartbreaking reading your post and I feel at a loss as to what to say to help you but you are definetly not alone. I too suffer with chronic pain and have tried lots of different medications - the only one that actually helped my pain was tramadol, youve probably tried this?
Epsom salt baths really help me and some breathing meditations on my ipod. Also distracting myseIf with TV and music like others have said. I am totally isolated because my pain and mobility issues prevent me from going out - being stuck at home all the time is hard to cope with.
I have appointment with a different pain specialist who offers lidocaine infusions, not sure if youve tried these and I recently got a lidocaine spray from online and it helps, pm me if youd like the details. Wishing the best for you.
Hi thank you for your read, yes I've been on those b4 but they where changed as i was getting worse and they didn't help. Oxycontin did help me without that pill I can't get out of bed without being in pain..i do try breathing techniques the thing is i can go from 0 to 100 in matey of minutes and when I'm rolling around in pain crying my eyes out taking me to a vet farm place nothing helps just got to ride it out and I do we do but I'm at a point where I can't do it i drip with swet go all cold then hit I shake i go sit pale my legs go or cold and white and nothing helps I've been seen in a&e like this they said its my pain my body can't handle it...But when I'm that bad can't call ambulance because I can't wait on hospital bed for 14hrs in that much pain cut then to day no one in s&e desks with chronic pain and the still make me appointment to go back to pain clinic.... but what do we do when your told there is nothing the can do i just got to live with it because I know i can't do this for much longer
I know exactly how you feel, as I’ve also suffered with extreme pain for 36yrs with a computerised pump internal pumping Hydramorphine into a catheter in my back which constantly into my spinal cord. Also I take 18 pills a day. Now I’m sort of immune to the medication and at 71yrs I can’t cope with the daily pain of 7 major back ops and 2 failed ones.
This all started 36yrs ago when I only had a prolapsed disc but the surgeon nipped the spinal chord by mistake and the rest is history.
Like yourself you spend years trying to cope with the pain, then it comes to a time when it’s unmanageable. I know this doesn’t make you feel better, it’s just nice in a strange way, knowing there are so many others that are in a similar situation.
Take care the best you can and live a day at a time!
Wow yes i know they're are others but what do we do i just know I'll be on my own in so much pain one day I'll just dry to myself I can't do this anymore.... this is where my brain is at because I've done it for so long and now I'm 50 this yr and I'm just getting worse.. sorry to hear your story though it's so sad they see have to go through this.... I've gad lidocaine infusion but if didn't help......
Hi, I have only been in pain since 2018 what I find and what annoys me is when you visit a doctor they say or write in your notes looking good or ok. Even though you sit there grimacing. See if they do social prescribing in your area they had one here and although the first session there was only me and my wife the second there were about 20 people turned up on one occasion over 100 people turned up all suffering with pain. I found it good speaking with others who suffer. Our SP has stopped now but was good while it lasted (sorry it was for people with pain they have other groups) . I have been referred to pain clinic yet again told 17 weeks wait, I find you end up teaching them about pain , hopefully I will find the one doctor who knows about pain! Hope you get the help you deserve. Kevin
Hi their Kevin for your reply also yeah waiting times are so long all i get told is I'm so very lucky that he could see so soon as he had a very long list and coccyx injection done and see me in above 6 months.....
Hi jaffa75 they don’t know what to do for us so we just keep getting past around different departments very frustrating if they had a few week of what we go through every day things would change I went to a pain clinic a couple of years ago he took the Micky in front of a traineee doctor and a nurse he sad because I was riddled all over with pain nothing he could do only for localised pain he I have just seen another doctor that basically said he lied he could have done something so I’m in again in a couple of weeks with different doctor one of only two that can inject into me so last chance down this road hope you find something to help keep asking and good luck
Hi thanks for your reply, yes i feel they don't know what to day out do and that's fine but doesn't mean they just dismiss how much pain I'm in is hard to live s life like this but we have no choice. ....i just know with his much pain I'm in i won't continue to live like this.. I'm not going back to see a different person let's hope they want to help me out even listen to me would be a start.......i do hope you find summin to help you with your pain fingers crossed. I just don't think they know just how painful being on constant pain all the time...
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