How do you not end it all when it's so relent... - Pain Concern

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How do you not end it all when it's so relentless???????????????????????

hbpencil28 profile image
37 Replies

Seriously; how? I cannot see any point. I can't do it. There's no point in people saying 'you're strong' blah blah blah. Nope. not any more. I don't know how any of you cope. It's too much. How are you supposed to bother and survive when every second is agony in all of your body and your body continues to deteriorate and nobody will even take you seriously let alone diagnose you or treat you????? How are you supposed to carry on when people dismiss you and are cruel to you and even when they try to understand they say dumbass stuff like 'well I was really busy today' etc when SORRY I was in too much agony to move, I WISH I could have worked hard and been busy... how how how and why why why when everything gets taken away from you> all the potential you had, all the things I could have achieved that I Will never never never do now. Nothing. That's what I can do. So what's the point of me laying around being useless- no, worse than that, a BURDEN to everybody, what's the point? i can't do it any more. 6 years of being ignored and suffering is too much for me. I know some of you have 20, 30, 40 years of this but i can't do it any more. I literally pray and pray and pray and beg that i will die in my sleep or something so i can do everyone including myself a bloody favour. maybe i am selfish and pathetic but maybe the pain is too much. I don't know who I am any more. I am not me. not who i could have and should have been and i want it to be over. I'll probably be criticised for seeking attention but no i am not, i am going mad from agony and loneliness and lack of sleep and losing myself. Sorry.

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hbpencil28 profile image
hbpencil28
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37 Replies
belle623 profile image
belle623

Hbpencil

You are not sad nor pathetic. Your feels and thoughts are completely just. This SUCKS. Yes it is hard. And your fight can never be fully put into words. BUT, I believe you are here for a reason. And this horrific "storm" has an end. There is literally no one in this earth like you, and that is a good thing. You bring a special perspective. Call me selfish, but the world/ we need you.

How can we share your burden? May I ask what causes your pain? Please we are here for are, as are others.

Thank you for reaching out

hbpencil28 profile image
hbpencil28 in reply to belle623

Thank you. As to your question, I wish I knew. I have no diagnosis and am dismissed by every doctor even though i am suicidal from the agony, and have been for over 6 years :( thank you for your kindness.

Rusty8 profile image
Rusty8

Hi I can assure you you are not alone

I think the same at times yes I am 71 years of age and what a lot of people would say is I have had my time but that time has been in a lot of pain over the last at least 10 years and a black out in January didn't help completely messed spine up

I'm thinking of you as I do feel that way a lot of the time but is it fair to family too be thinking this way I don't know and what do we want I just want to be out of pain for awhile don't know what that feels like

It's another day today so shall we smile and get on with it and hope some one will come up with some pain relief

You take care and you are not the only one who feels like this

katieoxo60 profile image
katieoxo60

Hello Hbpencil, don't apologies for being low, you did the right thing told us all how you feel. We are all unigue both in our abilities and feelings. However one things for sure we all get taken over by our pain on occassions and feel as you express a bit useless. Other peoples approach to us often does not help either. You are obviously going through the loss stage just like bereavement, but it is the loss of health and future enjoyment in your case, we have to learn to accept our problems which takes more than six years, it is about constant changing to meet your health problem. One thing I found was being able to go online and visit all the world to chat or share your experience and skills. It is fine to have days when you don't want to cope with constant pain anymore or the big world outside,don't feel you must quantify your feelings to others. We used to have a saying to keep us going scream it from the roof tops and it works to release your tension that builds up.I have found new ways now I play my music loud, what ever helps is OK . So scream if it helps or smile if thats the way for you and a shot of whiskey is a brilliant pain killer if all else fails. Try and get some sleep now as tiredness makes pain worse. Speak again soon hopefully.

greens42 profile image
greens42

writing down how you do feel is a good start..Read what you have written down here back to yourself. Does it help to get your feelings sorted out on paper. Facing the really negative feelings and bein g honest about how crap it all is is a good start. Hit rock bottom and then climb back up again. Try and find just one or two people who believe in you and who you can really talk to. And use this site as well. People here do understand..Nobody can see or feel your pain which doesn't help. Take care your life is still important and can be joyful.

Shawnie profile image
Shawnie

Your words are familiar to me....and I know that they will be to many people who suffer chronic pain. I too have been there, longing to just fade away into death, six years of frustration, pain, isolation poor doctors.....but behind it all there was a determination to keep going for my children......and hope that one day things would improve. One year ago I got a new medication which improved things. I still have a lot of pain but now I can breathe and feel more like me again. I send you my best wishes and hope that you will also find the help you need to find some relief and reclaim your life. Hang in there.... You will hear from many people on this site who do really understand.

Wulfen1329 profile image
Wulfen1329 in reply to Shawnie

What medication are you on, could you please share. My husband has been through so many medications and nothing has worked. We have four kids and they really want daddy back.

hbpencil28 profile image
hbpencil28 in reply to Wulfen1329

I have no medication. Nothing to help as no one will take me seriously. I rely on heat and ice which is doing my skin no good of course. And I am sorry to hear that, it must be so hard for you all Xx

shooter profile image
shooter

Don't you say sorry you have nothing to be sorry for you are in a dark place at the moment and it's NOT YOUR FAULT seek help and keep pushing I found that it can be difficult to get into the system but once your in all changes but if you don't they (the consultants/specialist doctors etc) won't come looking for you please keep trying and keep us all on here informed of how you get on even a few words will do you take care steve b

DISC profile image
DISC

Sad as it is, this is it, this is what you have and you have a choice always.... deal with it ot don't. `its cold and hard, but its the truth. So you don;t have a diagnosis. THAT IS YOUR JOB NOW.... to get one! It'll be hard, it will mean surfing the net day in and day out, pushing your Gp to refer you, dealing with medical folk who shake you off, make you cry, make you feel worthless, but somehwree, somehow, along the way YOU WILL meet someone who WIULL help, who WILL offer an answer, who WILL make you feel like you havent been making it up, moaning, or going through life as a person with a ??????? problem. You HAVE got this far, you CAN go further. It wont be easy, far from it. Even if you write every day on this site, do it. Do whatever helps, but DO IT.... start planning, get into actioning your plan and get that diagnossi, Even then you will hace to deal wityh what you have, BUT it'll be another step. I wish you so much luck and hope that others will support you along the way, as we do on this site, You are NOT alone.

hbpencil28 profile image
hbpencil28 in reply to DISC

I understand your point, but I have truly have been desperately trying for 6 years to no avail :( I hope you're right though!

Catmag profile image
Catmag

Hi,

As the others have said, please don't feel alone. We have all experienced those feelings and lows at one time or another. Sometimes I get low for no apparent reason (other than the constant daily pain, migraine etc,etc,) So no apologies needed, I quite often put up a post, 'cos I need a rant, I don't always expect a response.

The first thing you need to do is be kind to yourself. Then get a proper diagnosis, knowing what is wrong can take stress out of it. People respond better when you have a name for what ails you. A proper diagnosis may also provide you with meds or treatments that may reduce your pain, make it a bit less commanding. I do hope you can feel a bit better and find an appropriate specialist.

Take care, Catmag.

Blakejess profile image
Blakejess

Sound s like u just need some one to listen and the right support. Have u had counciling of any sort and what's causing yr pain or what are yr symptoms s . Trying to battle this mentally is yr first stop .

Della30 profile image
Della30

Hbpencil28, anything that needs saying others have said. Do you want to talk, please am here and promise to LISTEN and I may not have the answers but together we can. I can contact you if you would like that. Please let me know. We all love you and believe you are very strong and definetly not alone.

BigBadBack profile image
BigBadBack

I have found alternative pain solutions to work best for me. All pharmaceuticals are based on plants. I make tinctures and they have a purpose to take your mind off of the pain.

birdie90 profile image
birdie90

I have days when I feel the same and sometimes I think it might be the worst thing, when you feel like this hell has control of your mind as much as your body. I try to remind myself of the better days but they feel so unreal when you feel like that, so then I imagine, in as much detail as possible, the reactions and emotions of the people I care about if I was to act on any of those thoughts until that is worse than staying here. See if you can get yourself referred for mental health support, there are some that take self-referral if you don't want to go through your GP. I am seeing a therapist at the moment and I still get those days but it is giving me hope of a different way out. I was really nervous of it to start with, even just about what I was admitting about myself, but I'm glad I'm going. Also, call Samaritans, again something I was really scared about doing but when I was eventually brave enough it did help. There is also a book I read " Reasons to Stay Alive" by Matt Haig. It is not about pain, but his experiences of depression described so exactly some of what I was feeling.

Take care, message me if you'd like to xxxx

WestSussexGuy profile image
WestSussexGuy

I totally get where you are at, I was there a few years ago. All the pain, the loss, feeling hopeless and helpless, it was miserable and I just felt totally stuck and that nothing would ever change and what the hell was the point. Others really didn't help - they would say, 'it could be worse, look at that person etc' well that really didn't help me. Others would go on about 'Have you tried this or that', I know they thought they were being helpful but it wasn't.

I found a really good GP who believed me and said 'I just don't know why you are in pain but you are in pain, so lets work on that together'. He was a star! I also went and got a lot of therapy, my GP got me into group therapy, which I was suspect about, but it became my rock for a number of years.

There is no easy answer and you don't want or need them really, but I do totally get where you are at.

XXX

Hi I find trawling the suicide sites helpful for me when I feel like this. I look for the painless methods of doing it, and by the time I have realised there aren't any, and read other peoples stories, I have gone right off the idea.

I know this sounds a bit strange but it helps me. I hope you find some answers soon as you are going through far too much.

RibvanRey profile image
RibvanRey

If you cannot get your GP to get you referred, can you afford to pay for a private scan at the Nutfield etc. At least you would then know if there is something wrong with your spine.

Regards Rib

Petreep profile image
Petreep

I can understand where you are coming from. Along my cancer journey I've been alone and felt at times felt like I couldn't go on. Our lives are a rollercoaster. Please try to look for one small thing each day to be thankful for. You are special and important. Please use us and talk to us each day. If we can help we will.

Danabaci profile image
Danabaci

What's the point? I honestly don't know. I am too a chronic pain patient who suffers terribly. What I do know, is that you matter. I empathize with your suffering and share a lot of your thoughts so you're not alone in this. And yes, the constant pain does change us, to the core perhaps, but your innate spirit can never be stolen by time lost or unrelenting pain. I must also remind myself of this from time to time. You obviously are in desperate need of better, more compassionate medical care. I desperately hope you find it. Please don't give up because you have a lot of fellow chronic pain warriors holding your hand! I respect you so much for reaching out. Good luck and I hope you can find even an inkling of peace, Dana

Mintychristine profile image
Mintychristine

I can totally get where you are coming from BUT you ow yourself more yes the pain is defeating its never ending the appointments the looks of sympathetic yet vacant faces of Drs they're always putting off it's the " lets wait and see" you feel pushed to the limit If it was cancer you'd give it your best shot loads of support then if your lucky you put it behind you and at least you feel brave to have survived. These illnesses are unbearable they strip you of everything mentally push you and nobody knows anything of them Silent demons But we know this is where this forum is at its best because it's our fight Please please just try to indulge yourself try to distract your despair find somebody who you can open up to I wish you loads of love xxxx

This sounds so like me too 😢

debsreed profile image
debsreed

I am a Christian who has been treated abysmally by nhs, for 12 years told all in my head, l found out 2 weeks ago l have had CRPS untreated for all this time oh n also l was told l had no ovaries 2005 all in my medical records yet scan 4 weeks ago shows l have both ovaries but need a hysterectomy. So..... Im 45 no kids, cant drive anymore, and having to wait for a complicated adjusted place to live. I never married due to living in chronic pain. We have life groups and prayer mtgs and l attend 2 churches when l'm able. Yet it was only 2 months ago l prayed to my Father God to please stop my heart before my brain and bodily functions failed anymore. He has my life in his hands and l do feel bad as l know what Jesus went through and gave His life for us...... However when you are watching life pass you by and you can't be part of it, it is so sad as l feel like l'm in a prison for pain looking through the bars at everybody taking life and their capabilities for granted and lm not feeling sorry for myself as by the Grace of God l keep trying to look on the bright side of life and keep grateful for what l do have in my life. A lot of people do pray when in despair Religious or not. Remember....Matthew 17:20 "lf you have faith as much as a mustard seed, you can say to this mountain, 'move from here to there', and it will move. Nothing will be impossible for you" Sometimes l'm in so much pain l can't find the words to pray but l know my Father God can hear and know through my groans and tears. Unfortunately God didn't make us with switches to turn the pain off. I was always told not to judge others too? Prayers will be said for everyone on this site at my prayer group tonight (that's the only thing l can do on my own these days so l have loads of practice🙏) Remember when suicidal thoughts get into our head and pain is beyond endurance just think.....I don't really want to die, l just want the pain to stop.....not my heart!!

kazmoonpepper profile image
kazmoonpepper

Bless you xx I know how you feel I often think what's the point. Now I know when I'm sinking and I go to doctors and he gives me a form to fill in about how you feel. I've had to be on high dose of anti depressants for year's that's the only thing that keeps me going. I feel I'm a burden as I'm virtually house bound and I'm only 50! Please ask for help I know how hard it is as I've had to do it several times. I'm in constant pain and the only reason I'm still here is pills and my son. Every day is a struggle I know so please ask for help and change your doctor if you feel they don't understand you need a doctor that listens.

Karen xx

Poppy_Ann profile image
Poppy_Ann

Hi there,

Like you I am in constant pain some days are a little better than others I try to get out of the house any time I can which is 2 or 3 times a month even if it is just to go to shops and struggle round holding myself up with the trolley as I cannot manage much more than 10 yards most days without something to put my weight on also I like to build models or carve wood in my shed as if you can take your mind off the pain for a few minutes it can be good.

Like you I have been in pain for years after an accident whilst in the army in 1976 when my back was broke and all of my joints partly crushed no matter how many doctors you tell it is all of your body they just want to try and fix one problem and ignore the rest.

The person who can help you most is yourself asking doctors to try and sort you out never works they may give you pain relief tablets that can dull the worst pain but they can never remove it all I have found that just trying to do something you like can help the most from reading watching tv or just relaxing in a chair as long as you can take your mind of the pain even for a few minutes each day will help you get threw it.

wishing you all the best finding something that works for you.

Regards Poppy Ann

I've been at the same point as you lately hbpencil and i haven't got any answers my friend. What ur saying is True. I have bipolar as well as a bad spinal injury/chronic pain and I've had enough. I too will never be the same person again before these illnesses ruined my life. 😧😢

Nicnsid profile image
Nicnsid

Hi I have just read your post..I hope you are OK and have some support.

Please don't apologise for being human and having feelings, the frustration and anger that comes with constant pain is hard to deal with and gets you down a yr and a half on I'm still fighting and just getting heard now and many failed things and re arranged appointments. Honestly tho main thing I found to focus on positive side I wana get better get bk to work and be able to pick up my one yr old neice and give her a cuddle just sml things each day is sometimes just enough to keep you going. I truly hope you get the help and support very soon.

Good luckxx

Lanark profile image
Lanark

Don't be sorry. Lots of us on here live in constant pain and suffer from lack of sleep. It is a mind-numbingly, soul-robbing and hope-crushing situation. Please go and insist on speaking to your doctor, get medication adjusted and do not leave the surgery until you have been heard. The isolation and loneliness of constant pain with little hope of relief is crippling. Gently tell those close to you and around you that you haven't been yourself for a while because of the unbearable pain.

Socially, I just can't go out or meet people. I am on some medication which allows me some sleep much of the time now. I keep lots of books by my bedside for when I do wake up. I used to beat myself up about missing sleep when I woke in the night, but it made it even harder to sleep. Now I just read till my eyes drop or it becomes morning. I have to be careful about posture and try not to take anti-inflammatories and pain-killers (I have Scoliosis - the degenerative crumbly kind). I try to remain as ambulent and mobile as possible. I go into work every day, even when I could weep with the discomfort and pain. Small victories are great.

Don't give in or give up. Don't expect others to do much - or anything - for you. But if they understand the situation you are in they might just be a little more understanding or supportive. Also, you don't need to beat yourself up any more, you've mibbe done enough of that already. None of us ever imagined we would end up in our respective situations. I had other plans which I daren't even remember now... I have to get on with where I am... not where I'd like to be. Good luck - be kinder to yourself.

Trulysad-76 profile image
Trulysad-76

I have just read this. First off how are you? What a brace young person you really are, putting this out there for all to read. When I read this, it read as though somebody had read my mind.

I feel for you so very much and I do hope you are ok? Please can you reply if your ok to do so, would like to know how you are?

hbpencil28 profile image
hbpencil28 in reply to Trulysad-76

Thank you for your kindness, and sorry that you are also suffering so much! It is so sad that so many people go through this without any help. And I have to say, unfortunately not had any luck with anything much so the situation is still very much the same :(

How awful that noone seems to realise what is happening to you, my heart goes, out to you, Yes some of us have been suffering for over 50 yrs and have undergone so many procedures during that time but that doesnt mean that you cant have your say I really feel from your message that you need instant support, both mental and physical. Do you have anyone close to you who will demand further action on your behalf?. I just wish that I could phone you and give you more support as you are in such a vulnerable tate that I dont want to make things worse. I promise that I will put you on my prayer list and I shall be following your progress in the weeks ahead. May God bless you and help you to realise that you are not alone. fondest wishes Catherine

hbpencil28 profile image
hbpencil28 in reply to catherineblakeney

Thank you for your kind wishes, I will pray for you too! Thank you Xx

nevets6rn profile image
nevets6rn

Honestly, my heart bleeds for you. I relate to every nuance of every sentence that you so succintly wrote. I am totally new to this site and have never posted on any pain forum although I have had chronic pain for 17 years and so many problems with worthless doctors. Reading your totally honest post has moved me to venture on this site and I hope to express my own personal nightmare of cascading events which I know will be embarrassingly unique and difficult to believe. I commend you for your honesty and openness. I have cursed God, begged God just as you. I have seen all friends desert as they don't relate or comprehend or believe and go on with their busy lives. I wish you were my neighbor so I could be of comfort to you thereby finding some value in my own shattered existence, but I can only tell you that my heart bleeds for you and I will continually be thinking of you in earnest and wishing I could do more. I send you love and compassion. And I totally understand. God bless you. I am so sorry.

hbpencil28 profile image
hbpencil28 in reply to nevets6rn

Thank you for your kindness, and I am so sorry you are in a horrible situation also. I am glad if this has helped you feel that you can vent on this site, because you really can. I Hope very much that things get better for you too. God bless you also. Xx

cmoon profile image
cmoon

Pencil?..........The way we are treated when we are in such pain and turmoil is blatantly inhuman. None of these quacks can know or understand what we all go through every day, every hour, every minute and every second of each and every day. Personally I have taken one option and that is to join a shooting club, get my firearms licence, buy a shotgun so when I really can't take any more then that is it, I know what to do and I'm not frightened in the tiniest least little bit, ever since I knocked myself out in a slip in a bathroom! Now I don't advise anyone to take these extreme steps because just after I did this, I was offered some hope by a fantastic company (non NHS) who explained to me that why should pharmaceutical companies find a drug that will kill pain. They make too much money out of the total crap painkillers they sell us or our doctors that only half deal with the problem or get you hooked on the drugs they give you and then they have the F***ing GALL to try to wean you off these drugs because they don't want you to become addicted to them...... I almost gave up.

I am trying this 'drug' out to see how it could possibly work when all the drugs thrown at me from the NHS have failed.

I am now just 3 days into this new drug (which I have to pay for) but just yesterday I got through the morning and the afternoon/early evening without taking any painkillers for the first time in 21 years.

Usually I take

1a. 40mG lipitor.....was on 160mG for many years.....have no muscles left.

1. Solpadol (30/500) 12 Per day 4x3pills

2. Tramadol 200mg twice a day

3. Lorazepam 10mg per day

3a. Have had 2 spinal epidurals but they had no effect at all.

4. Fluoxetine.....Lots Ipuprofen lots aspirin lots

5. 4 kinds of Blood pressure tabs incl nitrous spray & tabs

6. Omeprozol to counteract the damge to my stomach

7. Insulin, Diabetic type 2.

8. I weigh 178kG

Plus I use 2 Tens machines and one EMS machine to try to get muscles to work and have some less pain.............Neither work!

So Pencil, Tell me more about you and your ailments.

These are really lovely and caring people on this site and most of them talk a lot of sense, so don't give up............OK?

Simon. I'm not sure if you can pm me as I am also new to this site but I will help in anyway I can.

PS. For the moment I've put the gun away.........See? there is hope!

Davek723 profile image
Davek723

Hi there im so sorrh you feel this way but that doesnt mean any of us need an apology from you . There is no need as we all as a group have or do feel this way at some point in our pain journey.

I took 4 yrs to get diagnosed and it was a horrible diagnosis but also a huge relief. It gave me something to fight as apposed to no idea what was causing the pain.

Your first step is huge, telling us how you feel , and basically baring your sole to us all is a hugely brave and couragous thing to do.

So although your life seems very negative you have enough fight to write to us all here.

I dont have the same life as before, i had a great job plenty money all the trappings in life really, now i live with getting by just about . But i have trained as a tutor for persistant pain

So turned my negative in to a positive

I really cant explain the feelings of helping just one person . And i now think although i had all these nice things while working did i ever feel this much joy. Probably not.

I cant say things have been easy but its about adapting for me.

I really really hope you push through and get yourself the medical help you require

My thoughts are with you.

Dave

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