Lol sorry to my folks with chronic pain. Im the only mod and lost my account info for a really long time. Im back now! Thankfully it doesn't seem like too much has gone on. Its grown though.

Life has been shitty. Still in pain everyday. Pain isn't necessarily getting worse but my overall health and wellbeing is. Im glad I'm back here again. I hope everyone who has been here in this community is doing okay today. Life sucks, but what can ya do. Been losing weight for a while cause if I'm having a flare for a couple weeks, I eat like once a day the whole time. Seems to be happening more frequently. Idk how much more weight I have left to lose. Quite stressed about life.

After my wife made me leave home, the first few days went well enough. Almost got a job once, but then, the pain started up, and just kept up. One gal at the Kansasworks place saw how bad it got, and just told me straight up that I should go back to my home town and keep working with the group that's trying to help me.

From the NSAIDs that I took in 21, plus my 51 years, I'm not a safe driver any more. Also, I have a fear of women. When I talk to those gals who are trying to help me, I get so freaked out. Sitting, standing, walking, it doesn't fucking matter. It all hurts so much. So much that I can't think, nor concentrate. How the hell am I going to learn a new kind of job if I can't think? I drop things. I forget things. I can't concentrate...Shit!

And to make matters worse, the fucking MRI, that I've been trying to get for so many years, that my ex just would not let me save money for, showed fucking nothing,. AAAAAAAAAAaaaaaaaargh!

Eh, my NSAID stomach issues let me drink a little drink, so I'm kind of tipsy right now. Living in my little niece's house...Fuck me! So sore...So tired...Fucking hell.

Eh, I got a meeting coming up with voc rehab at the social security place on Friday, so fingers crossed...I can find a way to live like this...Because if I can't cook, and I can't clean...I am going to go absolutely batshit insane.

End really really really piss poor rant, heh. This would be so fucking long if I were to get any more detailed...O_o.

I am so sorry, but I need to vent, and the only person I manage to talk to has disappeared with no notice (probably just overwhelmed with life stuff but I hope they're okay. I'm worried.) I may end up deleting this, idk. Any comments and niceness would be appreciated because I'm alone and scared and in too much pain and it's too much!!!

I am in overwhelming pain. My chronic intractable pain has been so much worse lately. Probably at least partially due to stress because everything is fucked. I can't afford my next pain medicine refill, and I'm nearly out, and the friend that disappeared usually helps me cover it. I'm disabled and can't work and have literally no money. So I'm just fucked. Even WITH the meds, I've been struggling to handle the pain and it's scary. I genuinely don't know how I'm going to survive without any kind of pain control. Not to mention the withdrawal. I am scared. I am scared I am going to get overstimulated and overwhelmed from the pain that I go all stereotypical autistic meltdown and shutdown and bash my fists into my head and hurt myself, and I feel ashamed and weak that I can't just deal with it like a normal person. I don't know what to do. I'm so stressed and in pain and anxious I'm dealing with dissociation, depersonalization, derealization way more often than usual. I don't know what to do. I don't know how I'm going to survive. I don't know. I'm fucking scared, I can't take this pain. I'm sorry for whining and being weak especially when so many have it so much worse than me. I don't even know if this makes sense. I can't think 'cause I'm in too much fucking pain!!!! I am scared and I am so fucked AAAAAAAAAAAA.

Been experimenting with my pains and the dizzy spells, (as I need to move out as soon as possible), and it turns out how many mistakes I make when the pains and dizziness hit is pretty damn high.

It doesn't matter what I do...well, it is definitely worsened if I bend over. Which can be about two days worth of work or just once. Very very erratic.

Anyway, when the pains hit, speaking will become incoherent. I'll drop things regularly. I'll definitely forget cleanliness, safety measures, and necessary conversation skills that'd be required for any kind of work.

Oof! This doesn't look good, but my wife is really getting pissed that I'm still here.

I really wish I would have thought of affordable apartments back in 2017. I was still in a lot of pain back then, but not this much. Son of a @!#$...🙄

I live with pain and agonizing sensations all day. As if my pain is not enough because "I got used to it", I get new kinds of pain every once in a while. I don't have health insurance, am unemployed (I'm trying the best I can, 2 days ago I went to job interview in agonizing pain), free healthcare doesn't care about me and were unethical towards me multiple times, family members are angry about me and one of my parents did beat me because I was correcting them that my pain is actually physical and not psychological and that I'm trying to get a job even is so much pain. Everyone hates me and I hate everything.

I've tried everything that's in my reach. I don't get the support that I need. So I don't see other options... I really didn't want to die. But at this point... it's so much chaos. I carry it in my body.

Because I get all kinds of crazy symptoms in my body, the thought of death is all time in my head. I don't have the money to do exams, like what even. I got so stressed that I almost collapsed.

Rest of thread:

That can leave those suffering & grieving without the answers they desperately need.

As a person in the chronic pain community, I have watched that lead to immense suffering, unending grief and so much loss…and as a result increased self medicating, recklessness, suicides, requests for MAiD.

I understand how it gets there, because I live with #ChronicPain too. (Several types.)

And I struggle to hang on most days.

Especially in the face of the additional minimization/gaslighting we face in healthcare/society due to poor quality research and a serious lack of understanding of CP.

So what do we do about it?

First, HOW we talk about these issues matter.

We need to stop referring to “lifestyle choices” (places fault with patient) and start recognizing and addressing the real systemic barriers to healthy living that exist (where the faults actually are).

Misogyny, ableism, racism, financial insecurity, food insecurity, housing insecurity, lack of disability supports, and more are very prevalent barriers to healthy living.

The people creating this language in healthcare and research are some of the MOST privileged among us.

#Inclusion of our patient community means choosing a variety of backgrounds and experiences, and creating safer spaces for real discussions to happen about the realities and needs of those living with #ChronicPain.

But also the opportunities. And there are so many.

We could start respectfully tracking #ChronicPain in healthcare.

Acknowledging and believing it, counting it correctly, creating new tools to measure it…all respectful, inclusive and co-designed with patients.

No more shame, blame, neglect. Compassion and respect.

#Doctors could display #humility and #curiosity when they don’t understand the chronic illness-fuelled chronic pain they see.

They could read up on things like #hypermobility, #mastcells, #glial cells, neuro #inflammation research, etc.

They could believe us when we say it’s a 9-10 today.

[…]

https://bsky.app/profile/sabrinapoirier.bsky.social/post/3lcxcph4iec2l

cross-posted from: https://sh.itjust.works/post/28619185

Mastodon.

Mother of Popocatepetl. From Oct. 2021 til about Oct. 2023, the meds a doctor put me on for two weeks in 21 messed me up so bad that my tired pains were extremely masked by severe dizziness, but they came back last year, and damn, I still prefer the pains over what those meds did (and I still have some problems...Though, thank the Aztec gods I can eat some cheese again. That pissed me off, heh).

I am kind of seriously pissed off at the doctors. I spent so god damn much money trying to fix the shit their meds did to me, that I could have attempted to find a decent chair to help with these pains...or even a fucking cheap shed to have a place to work (to try and make more money)...God damn, so much fucking time and money wasted...Grrr!

End rant...Now try to relax and be very careful shoving my back buddy into my knee as hard as I can.

Knock, knock!

German Fairy Tale Ending

#chronicillness #autoimmune #chronicallyill #chronicillnesshumor #chronicillnessmemes #autoimmune #fibromemes #fibromyalgia #spoonie #mecfs #longcovid #chronicillnessmemes @chronicpain

#chronicillness #autoimmune #chronicillness #chronicillnesshumor #chronicillnessmemes #autoimmune #fibromemes #fibromyalgia #spoonie #mecfs #longcovid #chronicillnessmemes @chronicpain

I'm almost 50, and my knee kept me awake all night long. I have a son going in for a colonoscopy, so I tell my wife I may not be able to stay awake...I got yelled at for it.

God damn I wish I could find a job my broken body could do and get the fuck out of this house. Just leave.

End rant.

now I put this yoga mat wrapped under my back when it hurts too much

it doesn't really reduce the physical pain

only financial suck cost

Not as I envisioned, but still not too bad.

About four years ago I had come up with this kind of design for a dandelion as a representation of pain. Which, this one gives a sense of loneliness, too (at least for me. My wife is beginning to show her anger and hatered towards me again. So it's definitely how I have been feeling today).

So I was prescribed 15mg MSContin on top of my 4 7.5mg Percocets daily. Oh my God. I had SO MANY SIDE EFFECTS. It made me violently ill. The first week I was actually happy because it worked very well for the pain but the longer I took the more it wrecked me.

Once the side effects hit I was puking like every 3 days with an incredibly sensitive stomach daily so I had to be careful even drinking water. Then I realized I hadn't shit in like 6 days. On Tuesday morning I ended up projectile vomiting all over my bathroom trying to make it to the toilet at 8am. That wasn't the first time it happened.

I decided at that moment I'm done with this pill. Can't keep putting myself through this.

I had my pain apt yesterday and he is gonna switch me to oxycontin because I have no side effects from Percocets. I'm either a no side effects or I'm dying side effects person. No in-between. I've always been like this.

So I just gave up on taking my morphine. I've been putting myself through withdrawals. Yesterday night I ended up just cutting one in half because I didn't think I'd be able to sleep and needed to work today and it helped enough I was able to sleep but still felt like shit and same with this morning. But, in that time frame I should've taken 3 but I only took a half so I did good. I also completely cleared out my system because of diarrhea due to withdrawals and I've never welcomed it so much in my life lmao.

But man, what a horrible experience. The side effects were awful. I'm still in withdrawals but it's better than taking that pill everyday. I'm hypermobile so I have a lot of muscular pain and this obviously is just exasperating it but I'll make it through. I get the new med this next Wednesday. I told him though if I get side effects I'm done with extended releases because I've had issues with multiple. He agreed and told me he'd just up my Percocets to 10mg if that happens.

What an awful 3 weeks though. I can't wait until this is over. I feel like I've been shit out of luck with issues this year so far and I just need to bring back some stability into my life (pun intended cause get it? Hypermobility?)

This is my first experience with withdrawals to this extent. I've experienced a bit before like 7 months ago when my pharmacy decided to wait until like 6pm to fill my meds and I get refilled when I'm out. I know it's just a glimpse of withdrawal but I can see where it's horrible

I went to pick up a package this morning and wanted to go to the store after and after I got the package I just mindlessly went back to my apartment and realized it. So then I went to the store and for whatever reason grabbed a Gatorade and opened it immediately and just zombie walked through the store for like 5 minutes drinking it before I realized what I was doing lol. I obv paid for it but I thought it was pretty funny. I haven't had such a "what the fuck am I doing" moment in quite a while

Seen it's been rather quiet here, I figure a new off the wall message might be helpful to break the silence, 😉

Anyway, on top of the many chronic pains, and the medicinally induced GERD thanks to the chronic pains and the paranoia over opioids (Yay, to being a guinea pig...👿 ). Now I get the old man stuff. A pulled muscle where I never knew a pulled muscle could be. Hairs, tickling the side of my nose...GROWING FROM INSIDE OF MY NOSE. Long hairs on the sides of my ears..."Look, Ma! I'm a linx" 🙄 .

Then there's the brain drain...Hoo boy, the number of times I almost cut myself or have to be extremely...I mean extremely careful when using my power saws...Yeeeeeeesh!

And, to make this circus even more fun, I really really should see a doctor...And I have decided to just say screw it and go into deep debt...Me thinks the medicinally induced GERD has gone into a new phase. The first year was extreme dizziness, difficulty breathing, plastic smelling sweat, and bad chest pains. 2nd year, it got better, and the dizziness wasn't that bad. Going on the third year now, and hoo boy, the discomfort I had in my belly just below my ribs (both sides) are now pains...Holy halibuts can they hurt. Then there's some new pains in the middle of my back (New? Maybe? I don't have a bloody clue...It's hard to remember what's old and what's new...🤨 ). That's not all, but that's not the embarrassing stuff...Also, the plastic smelling sweat has come back pretty bloody strong, too. (And there goes a sharp stabbing pain just under my ribs about three inches from my right-most side...Yeesh).

Oh yeah, then there's my lungs being used as a damn kidney...WTH is that all about? If I eat too much salt, tums, alka seltzer I'll hack sodium/salt out of my lungs. Too much sugar? That'll come hork up, too...Hell, I made some shrimp with some lemon juice and was hacking up citrus flavored phlegm...Holy Mother of Zeus...

On a good note, these new things have...erm...dulled? quieted? masked? the majority of my pains. So I've been able to cook & clean more. So...That's...um...well...nice...I guess. 😶 ...

Ok! That's my message for the day...Now wasn't that so much fun? "Not really, my belly hurts", 🤣 🤣 🤣 And now I'm hungry...again...I miss spicy food...😢 and I miss being able to out eat my entire family..."Long live high metabolism"...

The dishes are piling up. My apartment is a mess. I can't stand long enough to make a decent meal. My tasks are falling way behind at work. The physical therapy exercises just stopped helping one day. Ibuprofen makes my stomach cramp, pretty sure I have a hernia, or at least it's warning me it's close. Weed doesn't dull the pain anymore. I miss my good days.

I'm already at a pain mgt clinic but I've never seen a doctor there so I decided to checkout another one. So I asked my neurologist to refer me one and I had the appointment with them today.

They're great and I would actually talk to doctors there which I like but they have a MME requirement which is much lower than the CDC recommend max which is 90MME. This pain clinic has a max of 50MME.

Not only that, but Colorado protects doctors here from lawsuits and says it's okay to go over 90 mme if needed

I currently take 40mg hydrocodone a day so there's only room with 10mg more if I switch to this clinic.

That really sucks because he told me they would rotate meds for tolerance reasons so they would switch me to oxycodone then a few months later morphine and so on so tolerance doesn't build for one medication. But that 50mme is tough because for me to be able to do basic activities and be active in life I'm going to need more than that.

It was so nice to be able to talk to a doctor who understands opiates without feeling stigmatized while asking my questions and saying my thoughts and experiences with certain pills and how one has helped my pain more and etc. compared to talking to a young NP that doesn't understand.

It's tough because it seemed like a great clinic but that limit may be a deal breaker.

I really hate chronic pain lol, obviously. Today's been hard though. Last week I met with a new neuromuscular neurologist and she told me bad news. She disagrees with my previous neurologist on the CIDP diagnoses and thinks that I have an extreme case of small fiber neuropathy.

I can't stand in one spot for more than a few minutes without my legs starting to shake or walk up or down hills. Eventually they'll give out and just tremor. She doesn't think I'll get em normal again. She said I could get some functionality back but that's it. That's also with nonstop water therapy and normal physical therapy.

Same with pain. She thinks I'll be on pain meds forever. Not only that, but the nerve pain in my legs and low spine pain hasn't gone away since the blood patch 4 months ago. I got 500mg methylprednisolone infusions for 3 days a month ago and that helped a lot and I was hoping it would go away but it didn't. Still can't have my legs in certain positions. I got acupuncture today and she did cupping on my back and did it on my hips and lumbar spine and that general area and it made it flare up. Had nerve pain in my legs the entire time. I just got a lumbar pillow and can't even use it because it makes my low spine hurt and nerve pain in my legs.

I got wheelchair assistance for the flight home for Thanksgiving and that was really tough to do mentally. The flight home also caused a lot of pain. Not only that, but I got into a huge fight with my mom and brother because they can't seem to comprehend the fact that I'm not gonna be in a jolly mood when I'm in a lot of pain.

What the new neurologist told me sucked. It has a lot of implications. Been a mentally rough week and a half. I try not to think about my future but I have been. Idk if I'll ever be able to get into a relationship with how my life is currently. I'm just exhausted. All of this is just too much. I wish I'd wake up one day and it would all be gone and I could live the life I had a year and a half ago

I'm a newcomer here, but I would like to raise awareness for people who suffer from severe trauma. The nights of little to no sleep. The tears that are wept for something that happened 15 years ago like it just happened to you. Just here to let you know that you're not alone, and no matter what pain you feel, someone somewhere can help

I've always read mixed things about them and for some reason I always thought they were thousands of dollars. Finally decided to look them up and to my surprise they're not lol. Don't ask how I got that in my head.

I went ahead and ordered one to see if it helps. A lot of my pain is muscular and I will have muscles that will seize up for basically days. Even if this can relieve some of it, I'll be happy.

Any have experiences with them?