Chronic pain with so much to live for but so ... - Pain Concern

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Chronic pain with so much to live for but so little feelings of wanting to.

Jluke profile image
22 Replies

I'm so fed up with chronic pain everyday myself. I had a spine injury from a spinal cord stimulator trial about a year-and-a-half ago. I lost most of the use of my left leg and live a life of chronic pain. I can get around with a cane but the pain is so bad I find it hard to do anything. Even sitting upright hurts I spend most of my time laying on our sectional. I have a wife and a 11 year old son and I know my wife has totally had it with my problem. I want to end my life and have decided how with an exit bag but the when is a problem because I know it will be devastating to my son who loves me very much. But I just can't go on like this, everyday and night is such a struggle and I know it makes it tougher for the few people close me. You really can't understand the life of chronic pain without living it. It just destroys you emotionally and you just don't care about things anymore. Even the people you love. I have tried everything possible to end this pain but nothing works I keep waiting each day for it to get better but it never does. Pain meds do help a great deal when I nI had a spine injury from a spinal cord stimulator trial about a year-and-a-half ago. I lost most of the use of my left leg and live a life of chronic pain. I can get around with a cane but the pain is so bad I find it hard to do anything. Even sitting upright hurts I spend most of my time laying on our sectional. I have a wife and a 11 year old son and I know my wife has totally had it with my problem. I want to end my life and have decided how with an exit bag but the when is a problem because I know it will be devastating to my son who loves me very much. But I just can't go on like this, everyday and night is such a struggle and I know it makes it tougher for the few people close me. You really can't understand the life of chronic pain without living it. It just destroys you emotionally and you just don't care about things anymore. Even the people you love. Pain meds help a great deal when I have to or need to to go somewhere with my family but with the government issues and the crackdown on opiates I had to cut back on taking those. Just another thing to make my days much more difficult. I still have some hopes that this pain will ease up but I really doubt it will happen and I don't take the tragic step of ending my life. To all out there who suffer like I do I wish you the best. Wow this was a very long post.

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Jluke
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22 Replies
cyberbarn profile image
cyberbarn

I am really glad to see that you know how much your son loves you, and I bet your wife does too. Have you tried talking to the Samaritans? Does your GP know you feel this way?

Keep talking, there will be a way though. And keep remembering your son and how much he l loves you, and how much you love him.

Dawn5718 profile image
Dawn5718

I do know your pain. I am a single mum of a beautiful six yr old. And after having steroid injs into the spine to stop severe sciatica and chronic pain. Before this, from the age of 18, nine yrs later no one believed me, so by time they operated, disc was that bad i couldn't walk, i have a hump in back where i couldn't stand up straight, walking mostly on hands and knees. But that is just my story. I feel like giving up too, but then i look at my son and think this little person I've produced, is the most perfect, loving boy I've ever met. And couldn't dream of leaving him now. This little guy had two strokes at birth and nearly lost him. And i think if a little baby can get thru that, then there's gotta be hope for people who suffer with chronic pain. I'm on the waiting list for a mini epidural. Have you asked about this with your consultant? It only affects the muscles and nerves close to the injury site hopefully blocking pain from that area but doesn't stop you walking. I watched on TV also, an anti venom that is being trailed and tested in America.Would it be worth you asking about trails if you have ran out of options. i know your in pain, but please try these options. I know its miserable, believe me i do. But there has to be hope out there. Your son and wife would be devastated if you took it further. And there could be other ways of reducing the pain. Please don't give up. ✋ xx

Alljaxedup profile image
Alljaxedup in reply toDawn5718

Just want to help !!! Don't get a epidural they don't work Dr. just make lots of money giving you them over & over again get Radio frequency it really works !!! Hope your better soon !😊

alimac39 profile image
alimac39 in reply toAlljaxedup

Can I ask if you got radio frequency nerve block on the NHS?

misty14 profile image
misty14 in reply toalimac39

Hi slim ac

Yes you can have Radiofrequency nerve injections on NHS thru a pain clinic. I can also attest they work. Been helpful for me. X

Jluke profile image
Jluke in reply toDawn5718

Thank you for the reply. It's wonderful that you have such a positive attitude. I do my best to keep up a positive attitude around my wife and son. My pain gets bad in the evenings and it makes it so hard to concentrate when my son is trying to talk to me or make me laugh. What do you do when your child wants to talk to you but you're in so much pain it's very difficult to concentrate? Sorry for the late reply.

Dawn5718 profile image
Dawn5718 in reply toJluke

I completely understand, it is very difficult to help a child understand why daddy, or mummy, are in pain. My little boy has realised now that mummy can't sit on the floor with him or run around because of pain. So I sit with him and try to put it into a child's perspective. Sometimes, it's so difficult not to cry or get upset around him. But I keep telling myself, I want to see my child grow up happy, but realise people do unfortunately surfer with long term pain. If your feeling a bit down, ask them to come sit with you and ask them about your day. Maybe they might be at the age of understanding. You would be very surprised how much they do take in. Just let them know if you could, you would, and maybe on a better day, spend that precious time with them. That's what they need and want. Whether it is just sitting outside, watching them bounce on a trampoline. Or even just a cuddle up and watch a film. I really do feel for you, please don't give up x

mwalker23 profile image
mwalker23

Hi please don't give up hope. I know how you feel as I am also living with chronic pain and a lung condition. People don't know how it feels unless they have it, I too feel like giving up every day but have a son to consider, it is wasn't for him I would not be here. Can you speak to a therapist they have this service available to us. It is really tough but you can speak to people here every day as they know what it's like. Don't give up. I know every day is very difficult you are not alone.

coolpolitealex profile image
coolpolitealex

I've lived with "Chronic Pain practically for 30 odd years since 1985 after breaking my back, so I think I know a thing or two about pain and coping and there is many things that are invisible that make living and coping with it more difficult like worrying about what people think, but unless you start with dismissing all the thing's in your mind about thing's that are causing more stress on your body and mind, then you won't be able to accept that managing pain is a full time job and you will make those around you more irritated with you, because you can't make people understand fully about your pain, only you know that.

So feeling sorry for yourself is making it more difficult for you and those around you and so the first thing to do is try and rid yourself of the extra stress on your body because that makes the pain worse.

There is no use me going into all the different things you can do to mitigate the pain, that's up to you , but pain is the best teacher so listen to it and get on with managing it in a way that will give you and your family a break from the stress, there are good pain meds out there and use them to find a way to move your body so that you don't get worse because the pain will get worse unless you get into the frame of mind about managing it in a way that gives you some life.

Your a man so get in touch with you muscles, find a position that is comfortable like lying on the floor ,and then get to work on the muscles that you can move and find out what muscles you can move without making your pain worse then go to it , it's your body your mind your life and only you can manage it.

Sorry if I'm blunt, but I'm trying to help you not make the mistakes I made...So all the best Alex

Jluke profile image
Jluke in reply tocoolpolitealex

I'm very happy for you that you found a way to manage your pain. I started out living on the spinal ward of one of the best rehab places in the country that just happened to be near me in Detroit. The pain was excruciating learning how to walk again and by the time I went home six months later I was on fentanyl patches and taking oxy, the stuff typically prescribed for people who are dying. the pain meds allowed me to have some semblance of a life outside of my house, although I have never been away from my home for more than 4 hours for the last 18 months. Throughout this entire time the pain has never changed, and now with the government regulations for opioids I have been forced to reduce the meds and the pain is so much worse. Besides medications there is very little I have not tried to overcome the feelings of this excruciating pain every time I try and do something or sleep (sleep brings on a very bad burning like sensation in both legs after a couple hours, every time) but nothing has helped. There are a few things left to try but my neurologist tells me it is very unlikely they will have any effect, but I still have to try. So many different therapists, exercises, books, etc., it's tough to remember all the places and people. I haven't stopped trying yet but nothing has changed except for my ability to not use a wheelchair or Walker. But I just don't want to live with this pain 24 hours a day every day for the rest of my life, or even another year. I know it's hard to understand, everybody's different, but thanks for taking the time to read all this. It's not like I just tried a few things and decided to give up, I have actually tried just about everything that is known around my area of the world.

coolpolitealex profile image
coolpolitealex in reply toJluke

I was wondering how heavy you are, because weight will be making managing it more difficult, and don't be fooled into thinking that managing it better makes less pain or less discomfort, just because I get on with it without bothering others on a daily basis doesn't mean I suffer any less than those who might rage at the world or those around them, it's just that I realised that with this level of pain it has to be managed and lived with, or (and yes I've been driven to the wall with it too) I give up my life, well today I'm managing, tomorrow I may think differently, you see I did not like what I'd become, thinking that if I convinced other people that somehow it would help my condition , but sadly it only alienates you, because who wants to be around or help someone who is moaning all the time, and that includes the doctors..

You think that after a year and a half you know , well let me tell you that is nothing , you will come to realise in the end that only you know your pain and only you can find a way to go on, it's bloody hard and some days are worse than others, you see my friend it's getting into a psychological state where you can live with yourself and the meds (understanding side-effects and what they may be doing to your behaviour that may be adding to the pain due to the tensing up) no amount of psychological counselling will help if your not ready to help yourself .

Drug addiction is another point that is important as you mentioned the anti-opiate blitz, and I suspect this is adding to your distress, well that's another whole ball game too and a whole other subject, best Alex

Alljaxedup profile image
Alljaxedup

Why don't you sue the Dr. that did the spinal cord stimulated trial ??? I suffer daily from chronic pain also but have never heard of someone receiving and injury from the trial ??? What did you originally go to the Dr. for the stimulator for ??? Keep your chin up some days are harder then others !! 😊

Jluke profile image
Jluke in reply toAlljaxedup

I did start a lawsuit with one of the biggest firms in the country that handles the stimulator implants (suing in 17 states). But after many months of waiting The Firm decided to drop the case because no hard evidence of trauma could be found. I put apackage together with all the records and everything that happened, summaries of my experience in that pain clinic and what they had written up, all medical records and fluoroscopy scans. I contacted dozens and dozens of firms and very big-name ones (even Jeffrey Fieger), all came to the same conclusion that they did not want to take the time or money to pursue a malpractice. A few firms said this procedure falls under an acceptable risk without any evidence of malpractice. So adding two all this fun mess I've gotten myself into is no lawsuit money to help compensate for the problems this has caused. Actually there is still one from looking at it but I think the conclusions will be the same.

Can you actually believe this crap? But it is all true. Plus 5 months away from my filing deadline. So any lawsuit money is highly unlikely at this point. It's all very depressing.

astitchintime profile image
astitchintime

Hi jluke, Not much of a life when suffering. Having been very ill and in pain in various formats myself I do sympathise. It is a trial. I do not know what the answer is. Be a friend to yourself. Hang on in there. Keep trying different things. Wait. You are a valuable human being. I am not well, it is a real downer.

Can you go to someone non judgemental to talk things through?

If the NHS was any good you could go to them, but it is 'a hit and miss affair' with so many getting nowhere. I do not know if you're in the Uk.

A lot of people take antidepressants as part of a pain relief regime.

People do know what it is like for treatments making you worse

Tell the pain to go away.

Hope4u profile image
Hope4u

Sorry for your pain. It's definitely miserable to live in chronic pain. I've lived with for over 15yrs. Some days I just want to scream. But, you can't just give up. Find a doctor that hears you. Get moving even it kills you. The more you lay around the worst it will get. Don't be afraid of alternatives like injections and other pain relieving procedures. If you need pain medicine than demand it but, just know you probably will have to learn to live with a certain amount of pain. Even, the best pain medication only works so well and you can end up in a place you don't want to be. Nerve pain is hard to control and standard opiates don't work as well as some other types of pain medicine. Good luck!

Jluke profile image
Jluke

Thanks all for the replies and advice. I do appreciate it.

katelee profile image
katelee

I am glad you felt you could share how you are feeling and to be honest about how low you are feeling, that takes bravery. Finding a counsellor (who knows about chronic pain) could be a start. A good one should be able to help with pain management as well as the emotional pain. Did you know that pain shows itself in the limbic system, this is the part of the brain that deals with emotions? This helped me understand why and how pain directly affect your emotions. Let's be honest living with high levels of pain that interferes with every aspect of your life is shit (understatement of the year!!) but you do still have a life. You have a wife and son who love you and want to support you. That's your starting point. I hope today is better than yesterday. Look after yourself. Kate

Jluke profile image
Jluke in reply tokatelee

Thanks Kate

Mrshellraiser profile image
Mrshellraiser

I know exactly how you feel I feel the same I live with pain in my left leg and lower back and it feels like its taking over my life i can't do anything with my 3 children which is killing me my youngest is 1, ive had so many different types of medication to help and its done nothing my doctors don't listen to me and its so frustrating and to top it off ive had an operation to remove my gallbladder and that doesn't feel half as bad as my leg pain, my husband has been really patient and amazing with me I don't know what id do without him, but I know this pain is putting a strain on us, I don't know what else do

I hope you get it sorted its not nice feeling that way

Jluke profile image
Jluke in reply toMrshellraiser

I sympathize with you. It's a really terrible way to go thru life living it hour by hour because of chronic non-stop pain. I get a few days relief each month with a drop in pain levels. It feels so nice that I just fall into a deep sleep with no pain!

I wish I could get more days like that but it's always the same and nobody can explain why.

Best of luck and I truly hope things improve for you and your family.

sakinah111 profile image
sakinah111

Hi 👋🏾

Jluke

I have read your post and feel saddened that you are going through so much.

But i strongly empathise with you in your situation and would like to set your set your mind to rest by telling you sincerely that you are definitely not alone here in this sure un your fight against chronic paid any kind.

We are all fighting the same fight by dealing with it and trying out all kinds Of coping mechanisms whether bug or small from just swallowing up in a good book to escape the pitfalls we feel to those who would like more to venture further with spontaneous or adventurous hobbies to distract and feel some kind of escape.

Each Person

is unique in their quest for seeking their own coping mechanisms. That the beauty if our individuality as humans.

I sincerely hope you find your own unique individual or personal escapism to deal or learn coping strategies with your afflictions you have to sustain probably for the rest i of you life. I sincerely hope that you have some kind i of support network to aid you on your journey. If not then I'm certain by comming on here you can find inspiration encouragement and enlightenment from many of the post who share their views and personal journey in their own personal quest for healing.

Whatever you choose I you see not alone in seeking encouragement or uplifting or advise here on this site.

Mat God grant you ease with any of your afflictions

Take care on you physical emotional physiological mental and spiritual path to better health and coping journey.

I hope that this had given u some kind of uplifting in your constant quest to stay strong 💪🏾 and balance even at your lowest points. It not easy but you are bit alone.

Peace be with you.

Take care xx

Sakinah 🌹

Jluke profile image
Jluke

Thank you for the very kind reply. I hope all is getting well with you also. Best of luck and all my best wishes with your recoveries.

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