- cross-posted to:
- chronicillness@lemmy.world
- cross-posted to:
- chronicillness@lemmy.world
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Thankfully I don’t live with chronic pain, but living with tinnitus has a very similar cycle
It’s chronic, and it’s a nuisance; so it certainly counts.
I’ve had mine since I was probably a teenager. My 9-year-old has it too. He and I are not sure how he got it, and I feel bad for him having to deal with it so young.
Some days are better than others, in so far maybe I’m busy enough to not think about it. Other days, it’s front and center (like right now) and feels louder than usual. It’s the same feeling as with my chronic pain (broken elbow never quite healed right and constantly hurts).
This is like when someone tells a depressed person ‘just dont be sad’ but I’ve had tinnitus for over a decade, mine could potentially be minor.
Dedicating a good amount of time to telling myself over and over that the noise didn’t exist in my head really helped my ability to deal with it. I don’t ever think about it or notice it unless someone says the word tinnitus and my brain keys in on it. If you haven’t heard about it before, the drumming on the back of your skill trick is also a real (if very temporary) fix for me and a lot of other people I’ve talked to.
I’m so grateful mine is minor. I only notice it when it’s very quiet and even then i don’t always notice.
That’s how mine is. I’m just so used to it I can tune it out. It also helps that it’s a symptom of something far more frustrating in my case: my hearing loss
I’m lucky to have both.
The pain gets worse every year, but I’ve been dealing with it for closing in on 50 years so… meh I’m mostly used to it.
The tinnitus has a similar timeframe but seems to be getting worse MUCH faster. And is so much more distracting and ruinous to quality of life.
They may be related: https://www.vice.com/en/article/vvb99x/now-we-know-what-causes-tinnitus-that-never-ending-ringing-in-your-ears
Chronic pain and tinnitus, the incessant ear ringing that affects up to 30 percent of the adult population, may share a common source, new research shows. The finding may bring millions of people who suffer from both conditions a step closer to finding relief.
Wow, thanks for that link.
Prefrontal cortex - IIRC that’s also the area associated with ADHD isn’t it?
Double-checked, yep, PFC malformation or dysregulation is the core of ADHD.
I suppose people with ADHD are more susceptible to chronic pain.
Here’s a great read on PFC dysfunction in ADHD, seems really much the same problem.
And then there’s the people who tell me I can’t have arthritis I’m too young, I shouldn’t get it in my early 20s. My goodness what an idea I can’t believe I didn’t think of that
Most people don’t really understand arthritis and how many types there are. I sure didn’t at first. I dealt with the same thing in my early 20’s when diagnosed as well.
Oh 100% I can’t remember what type I have off the top of my head
As a 17 year old, I unfortunately can relate.
I feel you so much. I have migraines since I’m around 8 years old. Back then, in the late 1980’s many doctors were of the opinion that children do not have “Headaches”. And they told us so repeatedly.
Today sience has caught up on this fortunately and when my niece started to have bad headaches at around 9 years old, there were whole protocols of diagnostics and treatments available.
I was just lucky that my mom had awful headaches as a kid as well that went away with her first prefancy (typically for migraines to start or end with a big hormone change) and she never got diagnosed with migraines, but she still knew how it feels and that I wasn’t faking for more attention as the doctors said.
I’m still unconsciously scared that doctors won’t believe me and I make a plan before every appointment of what to say, so they will believe me. Its not rational, but I still can’t shake the feeling.
Aw man I got a few chronic illnesses (not just pain, stuff like adhd and type 1 diabetes) but I could not imagine being in your shoes. You’re a real one
my response to that would be “Well then you better go take it up with god, because the bitch done fucked up then, cause I’m in fucking agony every waking moment of every day, and just cause I mask well doesnt mean entitled cunts like you can come up and question me as if you are some appointed arbitrator on the matter”
It has a large effect on mental health and depression, too. The pain becomes sort of like being trapped under a too heavy blanket or something, and you’re always fighting with it. Good things feel less good because you’re hurting, and bad things feel worse because you’re hurting. Pain meds help a little, but it sort of numbs everything else along with the pain. The only time you can get a bit of respite is when you’re sleeping, and you better hope nothing wakes you up because then you’re laying in pain trying to go back to sleep for an hour. Awful.
I went and took maternity pictures with my wife yesterday and she was having so much fun. I didn’t complain because I didn’t want to ruin it, but I was so mad at myself because it was all I could focus on.
I’d forget for a second and make a joke to make her laugh and then right back into focusing on the pain.
I’m about burned out with it. I’ll have a good week followed by three months of nonstop misery. I can’t take pain meds because I’m a former addict. I’m terrified to have surgery for that reason.
I don’t know. Sorry to put this here. I wish I were better at suffering in silence. I know I’ve gotta be driving her crazy groaning all the time. I try not to, which makes me super aware of it. It sucks.
It is what it is and we get what we get, but damn I wish I could get some real relief. I’m feeling alright at this moment because I’ve had 4 12% alcohol beers, but when I wake up in the morning I’ll probably spend the first 5 hours of my day wishing I could just be unconscious.
I appreciate that you shared it. It’s nice to know I’m not alone in the challenges I face with pain. I’m sorry that you have to deal with that experience.
I like to think that we’re stronger for having to go through stuff like that, but sometimes it just feels like suffering for no reason lol.
It’d be nice to not suffer from what I do, and therefore not have constant pain, but also that person wouldn’t be me ig? Idk maybe that’s stupid but I think all I can do to keep going is try to be as positive as I can be.
Sorry if I rambled here. I hope things get better for you somehow fr <3
Damn dude, I feel for ya… that sucks. Is there any hope for a solution?
I feel this I’m my bones… and I mean that both figuratively and literally.
My wife has had a chronic neuropathic pain condition since 2008, and this is pretty accurate. One of the interesting aspects of chronic pain is that there’s no way to measure it - no way for a doctor to know how much pain a person is in other than to ask, and the answer is inherently subjective. I’ve seen with my wife that clearly the pain itself can vary, with one day being better or worse than the prior, but also her ability to deal with it varies. If she’s tired, emotional, or cranky, the same amount of pain can be untenable.
They sometimes use antidepressants for neuropathic pain, and as I understand it the thinking is that they influence how pain is proceeded in the brain, but I always wonder if part of the success is simply that people on antidepressants get less derailed by a given level of pain.
Some of the anti-depressant meds affect things like GABA or norepinephrine (so an SNRI as opposed to SSRI), so it’s not just the anti-depressant angle, as they’re often used in much smaller doses than when used for depression.
It’s pretty fascinating stuff - I just learned about the norepinephrine angle recently. The thinking is that chronic pain causes people to become more sensitive to small pain signals - their nervous system is over-sensitized to pain, and these meds help with reducing the signaling/response to signals.
If you’re curious, lookup gabapentin (it’s been around for at least 30 years) or tramadol (an SNRI), which has also been around a long time.
My wife has been on both of those. Neither at the moment.
I have genitofemoral neuropathy. This is a totally accurate description. The location of the pain sometimes causes me to kick into fight or flight without awareness. I take Neurontin just to keep the edge off and reduce the reaction to the pain. Sometimes I think my pain is only a 4 or 5, but my blood pressure reading will prove otherwise. It’s oddly tolerable at times, and “lock myself away from the world so I’m not a total asshole” other times.
I have genitofemoral neuropathy.
Oh, man, that’s a tough one - sorry to hear it.
It is. Thanks. It’s improved over the years. Either it’s healing or I’m becoming more tolerant. My neurologist said either is possible, so I’m optimistic.
Wouldn’t it be cool if there was some sort of gauge they could use to see which of those it was?
There was a while when I thought my wife was getting better. Then one night she took off her socks and one of her toes was black and swollen. It turned out that she had stumbled on the stairs earlier in that day, and apparently had broken her toe, but she didn’t realize because the constant pain in the other leg and foot was enough that the broken toe didn’t really stand out.
I do think she’s gotten a bit better over the last year or so, but it’s so hard to know if it’s that or she’s acclimated to the pain.
Oof. That sounds awful. I also understand how that would happen. My damaged nerve services the lower portion of my abdominal cavity, groin, and upper thighs, so I tend to have problems dismissing gastrointestinal issues. A couple years ago, I suddenly became super distended. Like a skinny guy with a basketball under his shirt. It turned out that I had an intestinal intususpeption that basically closed off my tract and inflated me like a balloon. I would’ve noticed the pain way earlier if I didn’t have jumper cables on my nuts. Lol
It’s amazing how little neurologists are willing to commit to certainty of any kind. I’ve gone to several, and all I get is speculation and hope. Has your wife had the same experience?
Yeah, similar. She has CRPS, and they just don’t understand that very well. Since it’s neuropathic, most drugs don’t do much and she doesn’t like the side effects anyway. They used to call it the suicide disease because so many people would just kill themselves rather than deal with the unending, untreatable pain. Treatments have gotten somewhat better though. Still, most doctors don’t know what to do with her.
I just looked it up. It sounds awful. I’m sorry she has to deal with that, especially having so little information. I’m frustrated with the level of support I get for my trauma, but at least they can give me some definitive understanding of the mechanics. I really hope they learn more about her condition.
Chronic Chest pains here and heart rate issues.
Every day, multiple times a day, I clutch my chest and gasp for breath/double over.
Its become such a common occurence I dont even have the “OH MY GOD IS THIS IT” response anymore.
I usually just angrily scream “god DAMNIT” through gritted teeth as my heart rate goes through the roof for the next 10 minutes to 7 hours.
Took me laying in the ER hooked up to a heart monitor and having one infront of a nurse that I was even remotely taken seriously, and even then it was just a "uh huh, uh huh, uh huh, okay take these beta blockers, bye "
when i asked what it was, they just shruged and said “its normal, weird you act like it hurts so much, but oh well”
20+ years later, i still got it, and it gets worse every passing year. yet i’m in perfect health according to the doctors and tests
Panic attacks? Too much caffeine? This happens to me when I’m going to sleep, it’s really frightening. If you have any insight let me know.
They wanted to insist it was panic attacks for a long time, but that kinda died off after they tried twice to give me a big ol’ dose of ativan with absolutely zero effect (Other than me experiencing a moment of pure, drug induced happiness, of course)
They tried to blame caffeine, too. Telling them I hadnt had caffeine in 10 years visibly took the wind out of the sails on that, too.
Current theories are that I somehow accidentally offended some elder god, or that I earned a witches ire in a past life
Since everybody is guessing, let me throw my hat into the ring.
Oh.
Thats… Thats just what i needed today.
😱
edit
I have tachy, headaches, heat intolerance, nausea, Dizziness from getting up to fast, tremors and more.
Today is fun
New fear
The ancient gods are vengeful.
That doesn’t seem right. Sorry you have to deal with that.
Yup! Ehlers Danlos Syndrome is a BITCH. I was diagnosed in 2014 and I wish I could go back in time and scream at younger Shelby to quit gymnastics, quit cheerleading, and quit my job as a contortionist… on the outside, I look healthy and even do boudoir for a living, but my doctor says my ligaments are similar to someone in their late seventies. It’s hard when you look “normal” because everyone assumes you’re faking it.
I suspect that I have Ehlers Danols. I have an appointment with a new doctor next month to look into a possible diagnosis. When my wife first found out about EDS and said she thought I might have it I was just like “whatever”, but then the more we looked into it the more my entire life made sense. I’m not saying I hope I have EDS but it would be really nice to actually have an explanation for the constant pain and unstable joints.
You’re in luck! I volunteer as a Disability advocate for EDS and Rising Voices of Narcolepsy.There’s a test for EDS called the Beighton Scale. If you have all 9, it’s a guarantee for the hypermobile type of it called hEDS. Even if you’ve got 5-6 on the scale, you probably have it. 9 is the worst, what I have. I’ve needed multiple surgeries and was designated as fully disabled by a judge in my early 20s.
Having answers brings peace of mind, but what’s even more important is that your treatments will change. People with Ehlers Danlos Syndrome ABSOLUTELY CANNOT use the antibiotics in the Cipro family. It causes vein collapse, circulatory system leakage, and aortic aneurysms. It can kill you. You also can’t do most stretches, so Yoga is a no go and physical therapy can only focus on strengthening your injured areas.
Here’s the test. Hope it helps!
https://www.ehlers-danlos.com/assessing-joint-hypermobility/
Thanks for the info. The Brighton test is actually what led us to start looking into EDS. I easily get 4 points with the pinkies and thumbs. I’m not sure on the knees and elbows, I go past straight but I didn’t know how to properly measure what angle I get to. I cannot even come close to touching my toes because my spine does not curve the way it is supposed to.
I did not know about the antibiotic, that is good info to have. I did know people with EDS need to be particularly careful with stretches and yoga but had not really thought about physical therapy. Last time I was in PT for my spine I ripped my collar bone most of the way off of my sternum so that makes sense.
Again, thank you for the info.
Ouch! I’m so sorry!
For the bending backwards scale on the knees and elbows, anything past 180° counts. My knees and elbows curve back pretty far. The more severe the degree, the more severe the EDS, normally. Also, get checked for Cardiac EDS. It’s the most deadly. It’s basically EDS for veins and arteries. EDS also leads to the conditions where POTS forms and that’s its own can of worms
I don’t have chronic pain but it’s the same with tinnitus.
Yeah when I first started hearing the ringing, I thought my life was gonna be awful from that point on and I just wanted to give up. Now I hardly notice it most of the time but it’s still pretty annoying when I do notice it and I’d love to hear silence again.
It’s amazing how well the brain can adapt to this stuff. Now I only notice it when my blood pressure is high, which is kinda useful.
I was born with this shit, idk what silence really sounds like :(
Same, every now and then I’ll get hopeful and do some research on the latest attempts to find a cure. Usually just end up more bummed about the situation haha
I’m sure the constant “noise” grinds down on your nerves just as much as constant pain.
Im sorry you are going through this.
This but with loneliness
¿¡Por Qué No Los Dos!?
My life right here. Good god. I know I’m annoying and I hate it.
Incredibly accurate. I’ve had migraines since at least high school that have evolved into a migraine that hasn’t stopped for a second for at least 4 years now. Most of the time I can soldier on, but I’m having an all caps night tonight.
I’m so sorry. My wife has migraines and they’re terrible but they don’t last more than a week at most. I can’t imagine one lasting 4 years. I wish you happiness and relief friend.
So sorry to everyone who deals with this. Awful!
Meh. I’m used to it.
💪 that’s the best option from the OP
Right there with you, my friend.
chronic pain leads to chronic pain meds. its the real doorway drug that ruins lives.
Absolutely agree. I find that marijuana helps. It’s not actually a good painkiller per se. Like at all. But when you’re more relaxed and chillin, it makes it a bit easier to live with the pain. Not for everyone though, but beats the risk of opiate addiction.
I was really excited when marijuana was legalized in my state because I thought it would work like a quick-acting, more-potent ibuprofen. Nope, I still have pain and now I have vertigo with the munchies. It’s a miracle sleep aid at least.
Yea, no. It’s a shitty painkiller rofl. It’s more of an indirect effect. For me at least, it releases muscle tension and that extra relaxation is often enough to decrease the pain. But it can also work against you in that if you’re anxious about the pain, it can amplify it and make it worse. So it really depends on the situation and the individual. Medical marijuana as an industry is kind of a fucking joke though. People shill it as curing cancer and straight make up bullshit.
Meh, everything I’ve read says that people dealing with chronic pain really don’t get the high like someone without chronic pain.
Having dealt with significant chronic pain for 30+ years, even the stronger drugs (like the oxy family) don’t do anything other than let me go about my day (though those do make me tired when they wear off).
When my friends or family without chronic pain take similar meds for something like post-op, they’re all kinds of wonked out - they get sleepy, disoriented, goofy, etc, at smaller doses than I take.
I don’t feel like that from the meds, just reduced pain, same with the people in my pain management group.
I’d say the greater risk is in these people, who only need it for a short time, so they do experience that “everything is alright” effect.
There’s some fascinating research these days, into how GABA works, and the interactions with dopamine and norepinephrine. Should help us understand these things better.
Way too fucking accurate. I feel that my prescriptions don’t do shit or make me miserable anyway with side effects.
