Life of pain

[khughes66]

Hi I am Karen,I live in chronic pain.and I hate it.

[luckyjim]

K

As do we all. It's a large boat.

Jim

[JeffMett]

One of the worse things about chronic pain you can appear normal as you try live with it so people think there's nothing wrong with you.

[khughes66 in reply to JeffMett]

True lot of us that look normal are ones that have lot of pain.

[bettyfl in reply to JeffMett]

Exactly.

[Cindy1967nov in reply to JeffMett]

You're so right Jim an it sucks,I don't know about you but I can't always keep up with my family especially during this holiday season they seem to understand but yet they dont get it,their response is take your pain meds an I tell them the pain meds takes the edge off but I'll NEVER be pain free,suffering from spinal stenosis ,Fibromyalgia ,AS,I'm 48 but good Lord I feel 90 some days.I wish life wasnt this painful.Happy Holidays,Be courageous Be blessed

[Cindy1967nov in reply to Cindy1967nov]

Lol I'm in so much pain I 4got how old I was

[MH1984 in reply to Cindy1967nov]

Please, try to check the level of vitamin D3 in your blood,

[Hermes123 in reply to JeffMett]

Hermes123. Common sense at work! Don;t assume because one does not see it that it is not there, which also brings me to the point because some body refer to one problem on our site does not mean there are not suffering from many more, assumption is a very bad thing especially for people who are suffering from things they rather not talk about, as to them this is their coping mechanism. Have a good Christmas one and all.

[Hermes123]

Hermws123. Sorry love you're not a loan? you and at least 10,000 others live with this unseen condition in all it's various forms, in most cases unseen by the general public, life suck's but that is the hand we have been dealt, all we can do is remember there lots far worse than us and struggle though life's pain the best we can, have a very happy Christmas.

[khughes66 in reply to Hermes123]

Have a.nice day

[Ilovemychildren1]

They can't fix shit

[khughes66 in reply to Ilovemychildren1]

Agree

[Foxy07 in reply to Ilovemychildren1]

So funny but sadly so true ☃

[Shawnie]

A simple message, one that so many of us can identify with. Hang in there. You are not alone. x

[Hermes123 in reply to Shawnie]

Hermes123. mine started in 1969. when the the first man walked on the moon, I spent three months laying on a board down stairs on the floor, watching all the news from space on a tiny black and white TV. three dispersed disc in my lower back, every move made them pinch a nerve, it was 1982. before I had an operation for trapped sciatic nerve, then it was very risky very few had ever been done in those days, but I blame that long wait for all the ongoing pain problems I had over the years, nearly 79. and still hanging in there with pain and recovering from yet two more operations. the early days were some very dark days I would never like to face again, never had the strength or effort back then. But now I am still hanging in there, so I guess it a case of never say never.

[clairehope]

Hi Karen,

As others have said, you're not alone. You don't say if the pain affects a particular part of your body? I don't want to patronise, but have you pushed for all possible treatments/pain management support? The latter seems to vary enormously in its availability and quality. I suffered more than I needed to for years because I was just prescribed drugs that left me incapable of functioning normally and didn't even manage the pain properly.

It looks like you posted because you'd got to a really negative point. I hope you usually feel more cheerful than that, if not, good pain management is the key. Sometimes therapies for depression can help. Different things work well for each of us - things that help me are (genuinely) thinking that billions of people have lives far worse than I do and lots of them are children. I focus on all the things I did before pain left me unable to do much - I have done loads of things I am grateful to have had chance to enjoy. I set myself challenges, do all kind of things to take my mind off it.

There's lots of kindness, help and support here, I hope some of it is useful to you and that you get to a better place quickly x

[khughes66 in reply to clairehope]

Best way I can describe polycystic kidney disease is close to the pain of cancer.

[Hermes123 in reply to clairehope]

Hi clairehope. with a tag like you'res you give us all hope, life is a bitch, but if one worries about it, one only adds to the misery, yes it's hard to put pain behind one there are times when one can hit the roof with the severity of the pain, once come back down to earth yet again one has to pick one self up and put one's self back into a positive place. just think of all the wonderful Service people who have lost limbs, with the wonderful help they have received have re-built a positive attitude.

[khughes66 in reply to clairehope]

Ty for the reply.yes I have tried all avenues.I have genetic terminal disease with no cure.and yes are people worse off .but same thing be for me tomorrow. I pray for illnesses in the world.do u know how it feels have tumors on both kidneys like 100 of them.carry around 60 lbs on your kidneys.do u know how painful to only sleep on one side.hafe to sleep in a recliner. I have a terminal illness am fighting for everyday. I have 60% brain aruysm on any given day.or heart attack besides knowing am losing my kidneys.plus small tumors on my liver.not counting have lupus scleroderma fibromalgia.am not negative am fighting terminal disease.my grands died with 25....hope u have a great xmad

[K1mccannlowe]

Hi take each day as come find same that you love to do and you are not alone . Stop beating yourself up start relaxing and just so you know I'm better than this

[khughes66 in reply to K1mccannlowe]

🐱

[khughes66 in reply to K1mccannlowe]

Will try ty

[Steve_inpaintoolong]

I agree with you fully.

If only we could all get motivated and bombard our government into realising how this debilitating condition is so irratic, unforgiving, uncontrollable both physically and mentally.

I have had this condition now for years and still I don't have access to any proper medication.

Wouldn't it be nice to at least have a day off.

Better stop now. ... it doesn't get any better.

[khughes66 in reply to Steve_inpaintoolong]

Agree

[Rosepetal60 in reply to Steve_inpaintoolong]

A day off would be wonderful

[Steve_inpaintoolong in reply to Rosepetal60]

Wouldn't it just. I've tried alsorts of tablets buprmorphine patches, antinflamatory creams even years of exercise.... the exercise made me feel better and I was fitter but still sore.

A mate once gave me some canabis once. ... . blimey I was sooo relaxed, best nights sleep ever.

But I hate smoking.

I did read years ago that ecstasy tablets were very good for the twitching tremors and muscle spasams..... but I can't see the government allowing us to be happy on prescription....

[khughes66 in reply to Steve_inpaintoolong]

I think government trying to stop chronic patients getting help we need.I think should be up to the patient and Dr.not fda

[khughes66 in reply to Steve_inpaintoolong]

Sure day off would be nice but it doesn't happen.most meds been on don't really help.

[Cindy1967nov in reply to Steve_inpaintoolong]

All I wish for is 7hours of no pain that way i can sleep like a baby,getting no sleep an being in constant pain makes your brain feel foggy like a zombie.

[Foxy07 in reply to Cindy1967nov]

The pain is bad I agree but no sleep is a nightmare I average 4 hours a night n that really is getting me down

[khughes66 in reply to Cindy1967nov]

Ya I know I never sleep 💤 all night. Right with you. Would help our muscle 💪

[Bambamsnan]

Hi hun just remember you are not in your own there's people in the same boat we all support each other xx

[khughes66 in reply to Bambamsnan]

Ty

[RibvanRey]

Hi Karen, over the last 34 years of living in chronic pain I have found various things have helped. Nothing that has removed the pain though.

I have been lucky enough to have had the best medical care going and as time has passed I have been prescribed a very wide cocktail of pain relief. Some wonderful nurses too. Never the less, the one thing that really has helped is distraction. Anything that diverted my mind was my instant friend.

I noticed that you had written a Profile and found a few things that I could relate to. Although I don't have the same conditions as you Karen, I have ruptured a kidney so I know how kidney pain feels like. Also like yourself I suffer with pain from a whole range of sources.

Another great help has been this Community. By being able to share tips on coping with life and the difficulties that living in constant unremitting pain. Only we lucky ones know what this truly feels like. How hard it becomes to do even simple things. How lonely it can be because family and friends just have no way of relating to the world that we share. "Oh but you did that years ago" being a frequent quip. "You should get out more and take up xyz activities." Yer right! If only I could get on a bus I would take up chasing them down the Freeway for fun.

Don't forget Karen, this is always a great place to let off steam and have a good whinge.

Kind regards, Rib

[khughes66 in reply to RibvanRey]

Tyvm,words are so true! I hope the holidays are good for you.karen

[clairehope in reply to RibvanRey]

Rib, I don't know if you were being ironic when you said "only we lucky ones know what this truly feels like". I read it as genuine and I want to thank you. You made me think about how I could be described as lucky to live each day with all this pain. I distract myself from it, I try to focus on the positives in my life but I never stopped to think that the pain itself could be a positive. Now I realise that my life doesn't have to be seen as impaired, just different. Life seen from a different point of view. Maybe I wouldn't be so thankful for all the amazing things if it weren't for the pain, maybe I would take more for granted, never spend hours looking at the birds in my garden and all the little things that make me happy. My condition isn't life limiting so I can obviously see that it would be much harder to take that view if it were. From my perspective though, from the bottom of my heart, thank you.

Claire xxx

[RibvanRey in reply to clairehope]

Thank you Claire. To me being able to have helped you and taken your mind off of your torment has made that day another day of success for me.

Regards, Rib

[Hermes123]

Hermes123. Said beautifully we could all write a book on our pain problems but who would read it only the morbid, So a very merry Christmas to you and a Happy New Year, from another pain hatter.xxx

[CtKathleenUSA]

Hi Karen, I would just like to stop and say thank you for starting this conversation. I had bad news at the doctor (nothing more they can do... we've heard this before!). The gentle and kind remarks have made me smile. I feel my whole day has shifted! Thank you all!

[khughes66 in reply to CtKathleenUSA]

Yes I have been told "nothing else we can do for you.really just live with it.we have each other. I had a sister at 26 that killed herself.know we hafe to keep fighting.when I first got dx with pkd.like my world had ended. I think that was the first day of learning how hard is to struggle with a terminal illness.and know we hafe to keep fight and lean on each other.

[khughes66 in reply to CtKathleenUSA]

Hang in there

[khughes66]

Hope 🙏 today is a pain free day 🐴🐱 even though I know not many of those. Extra hugs to you Flower

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[Steve_inpaintoolong]

Ahhhhh..... its a flower....▲▲... just me being Fik...

[NFDK]

Hello, Karen. I'm Wendy and I live with Complex Regional Pain Syndrome, so can relate to pain all the time. Beautiful kitty, by the way!

[khughes66 in reply to NFDK]

Ty Wendy 🐱wishing u a good day and I hope 🙏 u have less pain. Karen