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Chronic Pain MEGA Thread

Where is everyone? This thread barely moves lately.

So, some of you, older members particularly, might remember I found out a couple of years ago I have limited kidney function.

Last week I saw my specialist after hvng more tests done, all he really said was that I "have lots & lots & lots of white cells", in the urine test.

So sends me off with slip in hand to go to my pathology clinic, where I get more bloods done.

At 5pm that day, he, himself called & asked me to come back in the morning.he'd make time to see me.

(Far out, atm I have not been breathing properly for 1/2hr or so, truly hope it's just a bit of anxiety).

I have a malignancy

Add more later

Rtp
 
^That was just over a week ago. In the meantime I've been poked, prodded, scanned, had imaging with contrast, & finally had biopsies taken from each kidney. Not just by Karl the Kidney dr,- a whole team from the oncology department.

It's called bilateral renal transitional cell carcinoma.
My pre-existing issue is bilateral medullary calcinosis,-calcum build up in both kidneys leaving hard blocks, with no safe way to remove it.

It's currently at a stage called T-2a, both tumors are 7cm or less, & it hasn't had time to spread. (Though my last U/S was only a few months back,-& no sign then of cancerous cells. The main vein from the kidney goes to the heart,- well, if course it could spread anywhere.

I have approx 3wks to act, & make a humungous decision. Ive been informed, (I sought another expert opinion), I really am only faced with two realistic options, have one & half of the second kidney removed, chemo, & rely on dialysis four sessions each week. Forever.

Or there is one place left in a clinical trial that apparently appears to be very successful over in Perth. However, if that doesn't happen to go well for me...

If I do nothing, it can be fatal in as little as three weeks. Hence my time frame.

Rtp
 
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Rtp: I am so sorry to hear of your serious health issues. Please know that I am sending out thoughts of healing and wellness to you over there in Oz.
 
That's very sweet of you POkemama, thank you.

Long time no see, (may owe u a PM sorry), on this thread, how're u doin yourself lovely lady?

Rtp xx
 
Just lost my post. Was saying huge hugs to the darlings who've PMd me.

Was explaining my treatment, but v complicated. Ha, I now have a 'Team' of my very own.

I'll stay in touch as I can, luckily I'm not too far from home to participate in this phase 3 trial.

Packing now, case lol, will be going by chopper in the a.m.

Pls keep talking friends. I want to see how u guys are travelling, & if I can post I will.

Don't wanna be in the BL shrine. No one wld know if I was I guess,- pray to your own god for me?

Runtoparadise?☀️?
 
My friend RTP, jeez I'm so very sorry darling. Seems you cannot catch a break. Ill PM you but till then we've never met but you've been an inspiration to me you are resilient as hell thru your health stuff. I've tried to be too it's hard. Please continue to be strong and I'll be praying for you for guidance in your tough decision.
 
My body feels so heavy as I'm in this bed. Not sleepy heavy, just as If there's a weight sinking me down. Holding me down from my shoulders down.
Lol, I don't think I cld get up if I wanted to.
I came online earlier to umm, delete myself. A PM in particular has haha, it's like I'm being pulled thru the bed. Sorry. Reminded me I'm loved by many on BL do for now I'll go day by bay.

Rtp xx
 
Each pill Is numbers &' letters. Together the aim is to see if both work, as one.
I cld tell u, but like myself it'd mean little.

I'm so lucky my family cld travel, I have times when I want to be alone.... But then others when I love to be adored by sweetchildofmine !!

I've been weaned off of some meds. Even tho I feel the same as two wks ago. Apparently lll expect some pain so m back on oxy.

This narrow single bed still feels that I've no way out. Of course the bars are up. I'm sinking, it's deep & i'll be in in it as a life sentence. Hana, I know just to adapt to the 'click',, but at this time of night there aren't many options to go to xx
 
Love u guys PM ing, some of u from way back,- sorry I forgot we have a solid but small OZ BL fam. ❤️
No one posting on here though, well, cept for myself who can't just yet hv time to respond.
Ha, I used to say "I'll not be anyone's guinea pig", usually in regard to pain mngmt.
Turns out I am....
I started a blog, as this isn't really the right place to post, but hey, I'm happy to turn it into my own if I'm only receiving PMs, group responses.
Uh oh feeling sucker, sicker brb
Pls don't affect my heart xx
 
Hi Everyone, I found this place after searching high and low for some help and advice, understanding and maybe even some relief from my pain problems. This is my first post so please let me know if I'm on the right track.


I first became a chronic pain sufferer 2 years ago (god I hate that phrase) after a workplace injury saw me almost essentially bedridden due to pain for weeks, while being tossed from one pain specialist to another like a hot potato. After being poked, prodded, asked embarrassing and frankly unnecessary questions, eventually, all my many doctors could agree on was that I had chronic back pain (Thoracic region) that was not responding to conventional treatments such as nerve blocks and ablations, physio, acupuncture etc. and that to have any quality of life I would have to take Pregabalin, Gabapentin, Amitriptyline and Oxycodone in varying dosages and combinations for the foreseeable future.

After years of searching for another way to treat my pain and still live a life worth living, I've stumbled across this community and I think I may have found my tribe. As much as the pain is crippling, I do everything in my power to continue my life as close to as it used to be. I still practice yoga and pilates, play sports- but spend more time off the field cheering than on playing. I cannot jog my usual 10km a day but I still lace up the shoes every morning and do the best I can- I don't think you could call it jogging anymore, more 'a fast hobble'. I can't seem to continue relationships as my pain makes me snappy and I feel as if no body could understand how I'm feeling unless they walk a mile in my shoes. It gets to the point that I wonder if it's worth fighting- day in, day out, with no relief in sight.


Anyway, enough about me. I just wanted to say thank you for sharing your stories. For the first time in a very long time I felt hope and a sense belonging. I hope you will allow me to tag along for awhile. Peace xx
 
Welcome!
You've found the place to nestle. Rest your head. We get it. We have all been to dr after dr. We all have a life with pain- some better managed than others. As much as everyone on this forum is respected, (to some degree), we all vent here so we aren't so horrible to those that don't understand.

What was your injury?

Rtp xx
 
Thank you, Rtp. It feels good to find a place that I might be able to relax a little. It gets a little tiring having to hold it all in all the time. I don't know if anyone else gets it too- but I know it's time shut up and change the subject after even my family's eyes glaze over when I tell them how I've been. They are as sick of hearing it as I am of saying it.

I am/was an ambo and while my partner and I were loading a particularly rowdy drunk into the bus one night, the stretcher didn't engage the track properly and he struggled/bucked at just the right time to flip himself and the stretcher on top of me in an awkward position. I fell and hit my head and back on the road. I don't remember much after that.

The CT's and MRI's only showed a L) dislocated shoulder, #scapula and some soft tissue injuries initially and now nothing long term, I've tried nerve blocks and ablations with varying degrees of success. They worked a little at first but do nothing now and aren't worth the time or my limited money. I'm just feeling defeated and forgotten by the medical fraternity. I'm hoping someone here has been through something similar and can give me some hope.
I don't think I'll ever be pain free but my god I'd love to just be able to function like a normal human! xx
 
Ads, has any pain dr, (or other), suggested that your CNS has a pain "memory"?

Enough time of acute pain can "rewire" your brain. It's similar to phantom limb pain. Very hard to treat.

There's actually a BL wanker who used to moan about his thoracic, . Damn u autocorrect, he still lurks.

Has the subject of ketamine ever arisen? It works on the NMDA receptors to 'open' brain & spinal cord to allow the pain pathway to be anaesthetised. Dampen down the pain signals. Can last months for some. Subcut I'm talking about, in a nutshell.

Have you been through the pain programs? Tried a different opiate to oxy?

Rtp xx
 
I've been seeing a chronic pain clinic where I live for about a year and we've had numerous discussions about rewiring my brain and pain receptors etc. As hard as I've tried to stick to the program. It's so bloody difficult to keep nodding and smiling when they are essentially telling me I can think my pain away. I've read the literature and I understand what they are saying but i just can't seem to connect the dots in practice.
I'm loathe to take any more medication especially opiates. I don't want to be a martyr, and I certainly don't think less of anyone that needs stronger medications to get on with life (I understand my pain isn't as bad as others in here), but I don't want to get stuck on the opiate tolerance/dependence round about if I can help it. I cycle off and on Oxy because I'm scared of it, tbh.
I haven't tried any other opiates, or been offered. But did take part in a lignocaine infusion trial a while back- didn't help at all. I'm familiar with ketamine, i think it's time I bit the bullet and had a chat to my Docs about it. Thanks for the suggestion.
I'm not sure who you're referring to with thoracic pain but I'll take a bit of time to read back through, lol.
 
^I had a "rapid" lignocaine infusion over two hours in the coronary care unit of a hospital that also did nothing.
Saved the ketamine as a 'last resort', for when my PM specialist had no options left to help,- either with pharmaceuticals or interventions such as you have had.
His words, "your pain is not managed, not controlled, or even contained". Id been in a severe flare up of my musculoskeletal pain for an entire month &, (as my brain wasn't wired properly, lol,), was also suffering from central sensitisation.
I was admitted the following morning.

Sorry, am dozing off writing this, will add more later on,

Rtp xx
 
Hello All!

I figure this is a long shot, but it is the only route really left to me at this time.

I am a 33yr old, white (heavily Irish) female, about 1yr postpartum. All my life I have had to deal with the fact that medicines of ALL kinds don't work on me the way they are supposed to, but most notably are pain meds. I have only had ONE of the 5 different general anesthesia surgeries I have been in where I *didn't* wake up during it, or take 3-4 shots to put me under to begin with. Forget OTC pain meds of any kind - I have tried everything up to the maximum dosage per 24hr period for an adult with little more than nausea. Any pain meds given to me have always never been enough to start out with, and had to be bumped up in strength for any relief. I *do* know that Dilaudid works (as that's what they finally gave me in the ER for my bike wreck).

When I was a teen, my periods were so atrocious that I would miss school/life - often. Nothing helped. When I had my wisdom teeth taken out at ~16yrs old, not only did it take 4 total shots to put me under, but I woke up in the middle of the surgery AND the pain meds they gave me afterwards only helped a little. After a motorcycle in ~2013 where I shattered my wrist, I found out in the ambulance ride over that I am completely and utterly immune to morphine (seriously, the poor EMT did a double-take when he realized I was stone cold sober). Simply put, I need stronger pain meds, and more often, than "regular" people to help with pain.

Now, I am ~1yr postpartum with my first child. I've had various chronic aches and pains over the years, but it seems like pregnancy has made them all come out of the woodwork, and much worse. There isn't a day that goes by that I am not in pain. The problem is, before, I could just take a few shots of vodka and go lay down. With a child, that's simply not possible. I need meds that WORK, and work WELL, so I can be a responsible mother.

Here's the catch - I now live in TN (previously, GA), where apparently the gov't has decided to shit itself over pain medicine use and I am having an absolute horrible time finding a doctor that will believe me and give me an Rx that works. I don't smoke weed or cigarettes, and only drink alcohol occasionally during social events. I don't take any other illegal drugs, but I am on a very stable mixture of antidepression/anxiety meds.

Pot and I do NOT mix, so I cannot/will not try that, nor will I come within a mile of heroin. I'm to the point that I am about to start pinging sources on the black market for some pain meds for some damned relief because I'm not sleeping, and doing just regular house chores leaves me feeling like I'm dying by the end of the day. I've heavily considered growing poppies to take tea from, but that doesn't help me at this moment.

Can anyone give me any help on where to find a doctor in the Nashville area that would actually believe that I am NOT "faking it" and is most likely to give me an Rx that will help?

Thanks!
- SPP
 
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Hey SPP & welcome,

I'm sorry I'm nowhere nearby to help you find what dr you need.

I wanted to stop by & let you be aware that you're not the only one out there that feels as though drugs/medicines affect you differently or not at all!

I'm a tricky one with pain meds/anaesthesia also & it is so difficult for others to understand!

Lol, re: morphine, & oral dilaudid, I feel zip, zero, nada, effect. I've also woken up from a general, to discover that I apparently required two spinal epidurals as well during the same operation.

Very recently I was under a general, & later the surgeon remarked, "I knew we had the sweet spot/s, as you not only were quite vocal, but almost jumped off the table several times"! Ffs

Please be careful with OTC meds. (Not limited to),They can cause liver or renal failure in larger than recommended doseages.

When/if you find a doctor who understands your predicament, please don't let them brush you off with a test that is proposed to establish which opiates your body metabolises & processes whilst providing adequate analgesia.

These tests are, at least five years from being reliable, & you certainly don't want a dr to believe in your pain then 'red flag' you as a certain med "should" work for your personal pain.

Have you seen a rheumy, or had blood work up done? I know there's not much spare time as a new mama, but I'm sure you'd agree that a diagnosis & the correct treatment would be preferable to pain meds.

Wishing you well, hope someone from your area comes across your post. Pls continue to talk/post, that's when things start to fall into place I've found.

Rtp xx
 
Hi All,

I have been looking for this thread for over a week now, and am so excited that I found it!

23 years ago I broke T5 (vert in upper back) and for a long time I refused anything but OTC meds. In the past 10 years I have had surgery for one reason or another 6 times. None of these anywhere near T5, and my original (and apparently untreatable?) problem. Around the second or third surgery I found that the pain meds helped me to have a life with normal movement. I also found out that my skeleton is really, really messed up in the way it is formed. Deciding that I like moving, I started taking the medication for my back. It was glorious to be able to move again! I was very young when I broke my back, and I had completely forgotten what type of range of motion my body was capable of when not limited by pain.

Like I said, this was 23 years ago, and I now take some pretty heavy doses of pain medication. However the bone that was broken so long ago still hurts today. It feels like a severe bruise, and when touched the pain is intense despite the time that has passed and the medication that I take. Has anyone heard of something like that before?

Thank you! GRSH
 
I am rewriting this, I'm just really depressed about my back pain. I look at a lot of my life problems and how closely related they are to my back pain. It's insane how this tore apart my life in so many ways/ Yeah I am the one with chronic thoracic pain too. It is hell. I am very young to be disabled as well. Fuck is it bad and it's never going away until lI die. It is ruining my life in more ways than one and I'm just sick and tired of everything. I feel like I'm just done.

For two years I tried everything. Acupuncture, chiro, physio, massage therapy, chinese cupping... and I'm sure a lot of other things I'm missing, but the point is nothing ever worked. Every doctor I talked to seemed like they had something different to say about chronic pain, but they also said the same things over and over to that point that it was just annoying, like how anxiety and chronic pain go hand in hand. Yeah, when your spine is in constant fucking agony and nobody can figure out what to do about it or even seems to be trying that hard, and it's ruining your life, you tend to get pretty fucking anxious as well. It's like they are trying to say anxiety caused the pain from my sports injury and to me that's just insulting. Yeah I had a little mild anxiety before but it wasn't ever a problem enough to see a doctor about. It's because they are too stupid to figure out where the pain is coming from a lot of the time, and don't like to admit that they don't know shit about one of the world's most serious health problems. This shit is debilitating. It has completely ruined my life and it's not fucking cool that I should have to use the world's "hardest drug" to treat it because I can't get any real amount of oxycodone or hydromorphone or morphine scripted. I get what someone might get for a toothache after they get their wisdom teeth pulled, yet the pain is ruining my life. I've heard it loud and clear. I'm not getting any more. I have no idea how to approach my doctor about that either. Like they are not doing shit other than giving me opiates, no other treatments like corisone shots are being attempted. I am given 5 minutes time every 3 months and when I go I'm always the only one who doesn't have white hair and looks like they are 90 years old. It's fucking insane. They need to take this more seriously, it's ruining my life and I've just been abandoned. At least give me some childproof 40's for fucks sake? The dose I'm on is a fucking insult.

They are also too hysteric over opioids to prescribe them or have an open dialogue about them with me. I can't really voice how I'm feeling in a 5 minute appointment. I was getting really frustrated so I started right 4 page notes, 1.5 spaced. They were too long, the doctor wouldn't read them and told me I was writing too much. Well no, not really. The fucking pain is ruining my life, you never listen to me during the appointments, so I figured I'd try writing instead and look, here it is in plain sight. You don't give a fuck enough to even read.

If they can't fix my spine in any way, if they are going to make me feel hopeless then, at least prescribe the right amount of opiates. I am underprescribed to a ridiculous extent. I am on starter doses - the lowest doses it is possible to prescribe - 5 years into this. And if the fucking wait for the pain clinic hadn't been over two years, I highly doubt I'd have a panic disorder. My mental health would be better, it took a massive hit when I was suffering like that. And because they have never given me a dose increase I do heroin now instead and treat myself. If it wasn't for that, I wouldn't have a hope in hell of ever living a normal or happy life again. They really seem to treat people with chronic pain like shit.

I used to feel so alive. I used to wake up in the morning and have a good life. The only way I can feel remotely like my old self before my injury is with opiates, but they won't prescribe them. Anything else they prescribe doesn't work. The situation is totally hopeless and it's making me really depressed. It has really fucked my head up and I don't know how much more I can take. I shouldn't have to do heroin because my tolerance to a medication they fucking prescribed to me got higher and they didn't adjust for it. It's insane, inhumane, and abusive. I guess I just have to accept that it has been over 7 years now. Life is never going to be the same again. I'm always going to suffer from this and I miss the guy I used to be. I was always very active.
 
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