chronicpain

What a terrible concept that my brain brings up from time to time.

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.

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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?

Flying home for Thanksgiving will be the first time I've flown since things got really bad. I'm 26 and I set up wheelchair service for the airport. Never in my life did I think so much could go wrong so fast.

I'm scared to see my brother and mom. They haven't seen me since April and stuff just has gotten worse. The pain from flying is going to be so bad. 3 hours in a plane seat. Not only that but parking, the bus ride to the airport, even being on the wheel chair will be so exhausting. I'm going to be in so much pain. It's really hard to handle that this is happening.

When I originally went to my pain management doctor she said her goal is to get her patients to participate in life. But due to my age she is reluctant. I take 30mg of hydrocodone a day and 50mg of tapentadol xr and it allows me to do chores some days. Some days I can shower. I know I metabolize oxycodone way better than hydrocodone from when I got it at hospitals. I don't know how but I need to get her to understand I'm miserable. I've tried.

I'm just having a really hard day today. I'm so scared of flying home and back. I'm scared of my future. I don't know if I'll get my leg function back to how it was. I don't know if the IVIG infusions will help. There are so many unknowns and I'm stuck. My pain management doctor could help me more but she doesn't. I'm grateful for what I have but it's not enough.

In just over a year my entire life flipped upside down. I moved to Denver to hike, mountain bike, snowboard, play sports, etc. I wanted a new life and now I can't do any of that. I try to not think about the future and just go day by day. I don't know. Simple things are so hard for me. I was so active, I did so many physical activities. I just walked from my apartment to the amazon locker to pick up a package which is a 3 minute walk each way and that hurt and got worse.

I don't know how I'm going to live the rest of my life like this if the IVIG doesn't work and my pain management keeps on being reluctant on my pain meds. I can't live life like this. I'm so embarrassed. Why did this happen to me. Every simple thing is so hard like unloading the dishwasher or laundry. I keep my clothes in the dryer and just take them out as I need them instead of folding because I dread it. It can cause so much pain. I just don't understand. I can get complete paralysis of my legs just by walking up or down a small hill where they seize uncontrollably. Or even laying on my back and lifting them up will do it.

I'm having such a hard time today. Everything I once knew and did is gone. My entire life. It's even affected my lungs. Some days I simply can never catchy breathe. It's hard to breathe some times.

I just don't know if I'll be able to hold it together when I see my mom. I've barely been holding it together recently in general. So much has gone wrong and it makes no sense. I just want to go outside. I want to go make new friends. But I can't. It's so embarrassing that this is happening to me. I just don't get it. Some days i can barely even watch TV it's so bad. I just want to be normal again. I want to have my life back but I don't know if I ever will

During my apt Wednesday with my neurologist he mentioned starting me on IVIG infusions. He also referred me to a rheumatologist and I thought I had seen him first but I don't. He wants to get me going ASAP to get my insurance to accept it along with scheduling cause that can take a bit.

Im excited. The solumedrol 500mg infusions are starting to kick in on the 3rd day. I actually woke up in the least amount of pain than I have in a long time. I've only gotten mehtylprednisone once prior in March and other than that only Prednisone. The original methylprednisone helped me but the normal Prednisone never did with my normal pain. Today was my last day of it.

I'm not sure what that implies that mehtylprednisone helps my entire body pain but normal Prednisone doesn't but I'm sure it means something! Maybe it's simply the dosage. Because originally I got 125mg of methylprednisone and the Prednisone pills were only 40. This methylprednisone is 500mg. So maybe my body just requires a high dose to help it. It's definitely helping my lower spine and nerve pain in my legs thank God.

Anyway, I'm excited for the IVIG infusions. I hope they help. I also see a neuromuscular neurologist day before Thanksgiving, rheumo my neurologist referred me to on the 13th of December, and my PCP referred me to the university of Colorado for a rheumatologist. So I still am going to see a lot of people coming up but I hope that the IVIG does something.

Also, something that I find interesting with this mehtylprednisone is that I feel my body weight on my muscles. Idk if muscles have gone completely numb and I never noticed but yesterday when I woke up it's like I could actually feel my body weight on my legs and upper body. Previously I realized I felt weightless and it was super weird. Woke up again this morning and the same thing. Like it was hard to walk and I could feel my muscles contracting. I have a rubber tape thing my PT gave me for arm workouts and whenever I used that I could not feel any type of burn in my muscles. I felt nothing. Although, I still get a lot of muscular pain but everything is technically "nerve" pain. That could be due to some muscles not working so other muscles have to compensate so there's an imbalance from my EMG results.

So he has officially gave me a diagnoses of CIDP

Wow. I have never had someone actually truly believe me and give me something I need right away. First off I should say my neurologist is convinced I have CIDP and my reactions from my spinal tap and blood patch 3 months could be a cause to my reaction

So I went yesterday to my neurologist to go over my muscle biopsy report along with my nerve pain from my blood patch. My muscle biopsy shows denervation a long with other tests supporting CIDP.

So, when I told my neurologist about my nerve pain he thinks it could be my body just reacting poorly to any sort of trauma. Not only that, but where I got my muscle biopsy is still a tiny bit swollen 6 weeks later which he thinks is also a reaction of my body being in overdrive. His clinic is connected to a infusion clinic. They work together. So, he told me he is sending in an emergency solumedrol 500mg infusion for right then and there at the apt so I got it then for an hour, then I'm going in today, and tomorrow for more infusions.

I should feel amazing about this but you know, pain messes with your mind and I am happy but it doesn't last long. Regardless, my neurologist truly believes me, didn't question it, and acted right away. I'm really hoping this helps because my nerve pain and low back pain can be unbearable

So he basically put me on the emergency arachnoiditis protocol.

I'm getting an MRI on Sunday to see what damage has been done to my lumbar spine from a blood patch. Long story short, got lumbar puncture, CSF leak, blood patch = lumbar electric shocks + muscles around lumbar cramping + from soles of feet to lumbar spine feeling like I'm being stung by bees + sensation of ants crawling all over legs + feeling of something swollen in my lower back.

Like, I know something is really wrong with my lumbar spine. The dude who did my blood patch royally fucked up because during it I got bad nerve pain and it hasn't gone away 2 1/2 months later, got worse. Nerve pain and spine stuff isn't anything to mess around with especially when it's combined. I want to know what's wrong but at the same time I don't. Because, if I find out what's wrong then I can learn whether it's treatable or not (I doubt this) along with getting a diagnoses and then I can learn how bad all my symptoms will progress + what else is to come.

My neurologist thinks I still have spinal fluid leaking, inflammation, and a mass forming in my spine. So in short, arachnoiditis. No bueno! It don't feel good. What upsets me the most about this is what if we can get my other pain figured out but now I'm left with permanent damage in my spine? I've gotten Prednisone twice for this and it's helped both times.

Do you think I can go to the store and upgrade or buy a new spine? Sounds good to me!