In pain all the time

[Ipanoptic]

I'm in pain all the time. It only changes by how much I can tolerate that day. I'm on lots of medication.

Is it just me or are these forums depressing? Everyone here, more or less is in pain, why put up with it? Surely something can be done without spacing people out?

I'm permanently gritting my teeth against the pain, but refuse to take opiate based painkillers because they make me feel distant.

This isn't really a question and it not a criticism either, but referring to your symptoms, pain or medication and comparing how you feel versus how others feel surely can't do anything for you, can it?

[Bananas5]

Welcome to our pain concern forum.

It is a place where you can ask questions if you have short term, acute, pain or long term, chronic, pain. It could be for you, a family member or friend.

You could be a carer like myself although I do have my own chronic pain.

It is a place where we can swap ideas about drugs or alternative therapy.

Some members have a wealth of experience but all try to answer truthfully usually based on their own experiences.

Have you been referred to a pain management clinic? Have you tried alternatives to drugs? Acupuncture? Physio? Pacing yourself?

It is up to you whether you say what your conditions are but I did notice ankylosing spondylitis was listed. A condition I am very familiar with.

x

[Ipanoptic in reply to Bananas5]

Good name. Yes I've got AS. I've had it for 34 years now. It's still active. I thinks it's pinching my sciatic nerve, but I'm on a fairly high dose of NSAIDS and analgesic. If I come off the the pain is off the scale. 30 out of 10.

They're just two meds of around 30 I take everyday.

I've also had a stroke and have broken my back at L2 and L3 and have a rod fixation there.

I also have stage 3 lymphedema of the right lower quadrant with hip, groin and abdomen involvement.

All of this adds up to a lot of pain. I've asked for a referral to a pain clinic cause I'm really struggling with the constant agony. This can take a long time where I am. My mobility is getting worse, I'm looking at a wheelchair. But I'm conscious that I need to move.

I'm getting multiple cellulitis infections more frequently, with the result that my kidneys are starting to get hammered and I'm pre-diabetic... I'm sure there's more but my brain hurts now... LOL. I'm a crock...

[Bananas5 in reply to Ipanoptic]

My name reflects where I live...The Canary Islands...home of bananas

You have very similar conditions to my husband. AS for 35 yrs. Broke his back and learned to walk again around same time. AS has melted his spine together. Caused sciatica. Numerous other conditions to do with spinal trauma.

One kidney deciding not to work any more.

He has been on just about every opiate over the years...last one Oxycontin which he came off over 2 yr period. Now just Oxynorm as and when. They didn't help and although pain is excruciating...it is no worse without meds.

Has spinal blocks every 6 months...some better than others. Has weekly acupuncture which we don't think helps any more.

Took NSAIDs for too long and shredded insides.

Gets really really depressed but super GP and pain consultant starting him on something different.

It's hard...damned hard to see him like he is but the sun shines every day!

x

[Ipanoptic in reply to Bananas5]

Have you always lived in the Canaries, or did you move, in part for your husband? I'm only asking because hot weather makes the pain easier to cope with...for me I mean

[Bananas5 in reply to Ipanoptic]

We moved here 3 years ago for the better weather. So yes...it does help him. I think most people feel better when the sun shines!!!! Not wearing heavy boots, coats and thick jumpers too.

And the pain clinics are brilliant too.

x

[Hidden]

Hi, I've been in pain since August 1995 and am on a pile of painkillers, including opioids. Whilst I don't like taking them they do help with coping. My pain is constant and goes between 8 and way off the scale.

This is not a comparison website but one that supports those on it. In order to understand each other it is easier to explain the reason you have come to the website. It is up to you how much you choose to share, but there may be others who relate and can share what helps them.

I find spending time in nature, particularly by water allows me to focus on the better aspects of my life.

What, if anything, makes you feel good?

[Ipanoptic in reply to Hidden]

Hi RT66,

Since I had the stroke in 2005, I have little passion for anything. I like things, but nothing really gets me going.

Maybe I am depressed, but I don't feel like I am.

Everything is a struggle. Everything. I need to work because I can't afford not to, and because my job needs a clear head I can't take anything that alters my perception, and opiods do that. Therefore I'm in pain most of the time.. My partner reckons that I complain about it too much, so it's a lonely place.

[Hidden in reply to Ipanoptic]

Hi Ipanoptic,

I'm truly sorry that you haven't got a passion for anything. I do understand how hard it is and it is worse if your partner is not wholly supportive .

I'm not a medical person but can you remember the last time you laughed out loud? My understanding of depression is exactly what you describe but I don't know you or your circumstances so please don't be offended. If you can't remember the last time you really laughed I would suggest talking to your doctor about depression. There are many ways to help, especially as mental health is now recognised for what it is.

I get the struggles, it's hard dealing with any long term condition, especially one that isn't visible. I struggle also, and suspect that most people here do.

What was your passion before the stroke? Has the stroke left you unable to do it or is there another reason why? I'm not prying, you don't have to respond to this but do hope that you see you have found us and that sharing and caring can help.

Be kind to yourself

[Hidden]

Im in pain 24/7.Alot of the time unbearable.Ive been suffering over 20 years like this.I found HU when desperation, loneliness n etc was too much.No one understood n they still dont.

Here..everyone gets it n reaches out an ear to listen or shoulder to cry on.Some posts can be downers,but others r uplifting.Good majority of mine r just plain nuts,but I try to help the next suffering.

Read others posts n u will see we r one big family suffering together trying to get thru our days.

It does get better...

[Mand0508]

I have tried all opiodes over the course of 15yrs for DDDisease & at one time my stomach was in so much pain, I felt like I'd been kicked in it 20 times! Tried pain management, physio & accupuncter. But soon as it was over within a day or two back to chronic pain or no affect at all.It is hard to pace yourself when the dogs need walking,housework needs doing & working full time. Have been taking CBD oil for 2 & a half yrs now as I'd had enough of not being on this planet!! Dont get me wrong the pain never goes away but more so in the background rather than the foreground. I've had 1 bad episode in that time but wasn't as bad as it used to be on all those drugs! It's just makes your mood so much better to be able to have a conversation without babbling on. Yes days I still get down but not half as much. Good luck. I can sympathise with you xx

[Ipanoptic in reply to Mand0508]

I have been really busy with work stuff lately. I'm not sure we can get CBS oil here. I have thought about it, or start eating a few "loaded" scones or brownies.. 🤔😋