argh everything hurts

[Misery]

No seriously, I'm tired of this blasted pain.

I dont mean depression or some sort of emotional or mental torment. I mean actual physical pain. The sort that you might take Advil for... or something much stronger. The sort that can render you inactive simply due to its sheer intensity.

Chronic pain is something that many people go through, and what I want to know is: for those of you who have it in some form, or have an understanding of it in some way... what do YOU do about it? What actions do you take to fight back against it, both physically and mentally? How do you deal with it?

A big part of why I'm making this topic is that I'm well aware I'm not the only one here who has to go through this nonsense, and I figure, maybe it could be good to have a bit of conversation about the topic. Maybe it could help someone. Or even give a bit more awareness of this sort of thing, which is something that those who dont suffer from it can often struggle to fully understand (for instance, someone telling you that you're just being "lazy" when you cant do something because of this pain, or someone telling you that "you just complain too much", that sort of thing... comes from a lack of understanding, I think).

On top of that, I know that being on the spectrum makes this stuff even harder to deal with... it's a sensory thing, after all, and that can lead to additional problems like meltdowns. Even more reason to talk about it a bit, I think.

So yeah, I'm interested to hear anything you guys might have to say about this one.

 

[Atrapa Almas]

I will share a very interesting article on the subjet with links to scientific papers.

You just need to translate it from spanish to english. The scientific papers linkes are in english, so no translation needed for that.

Entendiendo el dolor y herramientas para superarlo ⋆ Fitness Revolucionario

Ocho herramientas para tratar el dolor ⋆ Fitness Revolucionario

Enjoy.

 

[Luca]

I'm sorry you're dealing with this, Misery
I have chronic pain and chronic illnesses too. And I do get called "lazy" sometimes when I stay in bed all day because I'm nauseous and dizzy and everything hurts. It definitely does come from a lack of understanding on their part.

There isn't a foolproof way that I've discovered to help me deal with it, but self-care at least makes me feel a bit better, even though it doesn't get rid of the pain. Taking a hot shower or watching a funny or stupid TV show or doing an extra skincare routine kind of makes me feel slightly better.

I've been feeling pretty miserable lately too, physically and mentally, and the physical stuff is probably giving me a shorter fuse when it comes to irritability. I'm usually in a really good mood, but lately... yeah, nope.
Which is probably contributing to other issues in my life right now, like my dogs underperforming at things that I thought they had mastered.

A lot of times, with chronic illness and pain, we get told to "suck it up" or "stop being negative." It's not that simple with illness, pain, or depression or anxiety.

Here's a relatable meme that I often show people when they're telling me to stop complaining about my medical issues:

And a similar one for mental health issues:

 

[Darkkin]

I have had medication resistant angina from cardiac and valvular EDS. Basically my arteries try to crush the life out of me on a recurrent basis. It is one of the few things that can make me truly upset and unreasonable because it hurts and nothing can touch it.

It will crush amd release and crush and release...and just when you think it's done, another wave hits, worse than before. It starts in the neck, creeps down your arms and you can feel it tracing along the aorta, the vessels in the lungs, and it gets tighter, like a spring winding too tight, but it doesn't snap and releave the pressure. It just keeps crushing.

And you're helpless to do anything, scared someone might see the weakness, and too tired to fight. But you cannot sleep, cannot escape. You're mad at yourself for being angry and unreasonable when people do try and help, but all you want to do is hide in the dark where no one can see you cry. Not even the dog...

Although it is better since my mitral valve replacement and IV port surgeries (with my EDS diagnosis we've figured out that I respond to IV medication, but not to orals because I don't absorb them effectively.) the pain, when it does occur is colossal. If you've ever had a migraine multiple it by a factor of five. It is a pain I wouldn't wish on anyone. I've had migraines, I've broken bones, neither touches the sheer ferocity of angina.

But it is a weakness, so I hide it...I don't speak of it and I am almost too effective with masking through the pain.

Weirdly enough, I would rather deal with my angina than a migraine or sinus headache because at least with my angina, I've learned how to function between waves. Headaches, I don't have access to my full cognitive function. I can't read or write and my mask becomes fragile. (Hello, my name is Darkkin and I know I'm a control freak.)

It is one of those things I've had so long it has just become a habit you're used to. Earliest memory: I was about three, my cat was asleep on my chest, (and I adored this cat like favourite thing on the planet adored), and I pushed him off because it hurt. My mom looked at me and asked what was wrong. I told her my chest hurt. That was the first time.

 

[Callistemon]

I'm sorry you're feeling eccchhhh, @Misery. I'm not sure what sort of physical pain you have, but a while back I was listening to a very interesting podcast on pelvic pain in females - which has traditionally gotten a "grin and bear it" prescription from the medical establishment (give or take a bit of paracetamol). There's a pain specialist talking about that issue in this podcast, and it's interesting for every woman, plus it cross-applies to other kinds of chronic pain management in how pain can create its own feedback loop etc. Here's a link: Dr Susan Evans – The rage in my pelvis

Really good Australian podcast series, BTW. No-nonsense presenter and no beating around the bush. That's all for now but I'll check in again later to read more here.

 

[Slim Jim]

I' m sorry to hear that. All my pain is mental. I'm fairly healthy. All though I'm sure I'll be falling apart any minute now. I can be hypochondriacal.

 

[Darkkin]

As much as pain sucks it is a universally experienced issue. I have a couple of close friends who deal with fibromyalgia and from conversations, they've described it as almost a chronic fevered muscle ache. Look at it and it hurts. Touch it and it is agony. Just an immense level of ish.

My specific type of pain is rooted in cardiac and smooth muscle, which is completely different than skeletal muscle. I guess the closest I can describe it beyond the crushing and pressure is akin to running really fast on a bitter cold day. That short winded, icy burning. Totally different that deep muscle pain. And while it is intense, it goes in spells, (hours, never days or weeks).

I can at least function pretty normally because it doesn't hurt to walk or move. It makes it easy to understand why chronic pain is a major contributing factor to things like depression. Recent studies are showing that those with diagnosed NDs, primarily ASD and ADHD, report chronic pain at huge rates averaging between 65 - 75.2%.

 

[Luca]

As much as pain sucks it is a universally experienced issue. I have a couple of close friends who deal with fibromyalgia and from conversations, they've described it as almost a chronic fevered muscle ache. Look at it and it hurts. Touch it and it is agony. Just an immense level of ish.

My specific type of pain is rooted in cardiac and smooth muscle, which is completely different than skeletal muscle. I guess the closest I can describe it beyond the crushing and pressure is akin to running really fast on a bitter cold day. That short winded, icy burning. Totally different that deep muscle pain. And while it is intense, it goes in spells, (hours, never days or weeks).

I can at least function pretty normally because it doesn't hurt to walk or move. It makes it easy to understand why chronic pain is a major contributing factor to things like depression.

Yup. I have fibro. That is exactly what it feels like. It kind of feels like the pain you experience when you have the flu or have had a vaccine.
It took lots of unnecessary tests and lots of being gaslit by doctors to figure out that it was fibromyalgia.

 

[SusanLR]

I'm going through so many tests currently to find the reason/reasons for my pain.
It is skeletal muscle and dying nerves (chronic large nerve neuropathy) in my feet and ankles.
I've had fibro also for years, but, it is nothing compared to what ever this is now.

Most of the things that can cause it have no good endings. Only one that can be treated
and I've heard the medicine is rough.
Very difficult to walk. Tiny, shuffling steps. And painful lumbar and thoracic spine when I stand
more than 15 mins.
The doctors are so slow in tests, then say come back in three months for results.
It could all be done in 3 weeks if they would just push it.
A lot has been ruled out and it's looking more like either Ankylosing Spondylitis
or Parkinson's than anything.
Anyone have any experience with these?

Sometimes it is hard to deal with because I can't do the things I want, like walking, housework,
gardening, shopping. Only short periods of time before the pain is too unbearable.

I don't take anything for it except an occasional ibuprofen.
Rest and hot packs help. Thankfully it doesn't keep me awake very much, since rest helps.

I know the remarks can hurt too, emotionally.
The one I live with says I sleep or lay down too much. I don't do 10 mins. of work in a year,
I'm told.
Then he gets angry when I can't move to do more.
I don't think it's because he doesn't understand, it's because he doesn't want to lose
"Cinderella."

 

[Knower of nothing]

My friend has severe tinnitus. From what I can tell, there is no coping method. He just lives his life and sometimes the tinnitus prevents him from doing anything, sometimes it ruins his mood, often it ruins his sleep. In response to these he can have emotional outbursts or become suicidal, the aftermath of both being calmer for a while but that's not really reliable or healthy as it more just the stress getting high enough that a response is forced out.
When you ask around about it, people can't seem to wrap their head around the "severe" part of tinnitus because its lesser counterparts are so common. They believe they have it or know someone that does and because of that they say you just need to distract yourself, don't focus on it, don't think about it. Which isn't applicable to any severe variant.
He's been through some terrible things already, so I'm terrified when he insists the tinnitus is the worst thing that's happened to him and the core of that truth lies very much in its chronic nature.

 

[Misery]

I'm not sure what sort of physical pain you have

It's mostly spinal stuff, sort of. Primarily in my neck, but also in my lower back (though, PT and exercise seem to have mostly canceled that part out). A lot of nerve and tendon pain, and general stiffness and aches. When it gets really nasty (which usually happens as a result of making exactly the wrong kind of movement) I can get all "locked up" and I wont be able to turn my head. This used to happen for lower back too (sciatica)... I still remember the very first time that one happened, which must have been back when I was like... 25? Very abrupt, and I ended up on the floor and it was a good while before I could sort of pull myself up. Not fun.

I also get a lot of pain in my right shoulder & arm; I wear an arm brace most of the time, and with the computer, I use a vertical mouse (which I'm convinced everyone should be using).

And lastly, I get debilitating headaches at times. Which is actually small muscles at the back of my neck acting up and creating a pain that "travels", making for a "headache" where the pain aint where it feels like. My therapist explained it to me, I didnt quite understand entirely.

I take a lot of Advil for this, and I've got cyclobenzaprine (a lot stronger) and Tramadol (too strong!) if it gets bad.

Been to a lot of PT for this, and all that fun stuff. I'm pretty darned sure I know what the initial trigger was, too: FREAKING HIGH SCHOOL. Because school was run entirely by lobotomized monkeys, we had 5 minutes to get from one class to another, and that meant switching the books-we-totally-needed-really-they're-not-a-waste-of-paper every time, and that meant a trip to the locker... which was on the other side of the school for me, all 4 years. Carried EVERYTHING in my bookbag as a result, which I typically just held with my left arm when walking. 4 years of this telescoping and... yeah. Hindsight 20 blah blah. Blasted place. Might not be as frustrating if ANY of that junk had EVER been necessary (hint: it wasnt).

Headaches, I don't have access to my full cognitive function.

Yeah, those are bad, aint they? Doesnt even have to be a particularly bad headache... when it happens, it's like it just takes over. Cant do THIS, headache in the way, cant do THAT either, headache in the way, cant bloody THINK because aaaaaaaaaaaaargh.

I'm going through so many tests currently to find the reason/reasons for my pain.
It is skeletal muscle and dying nerves (chronic large nerve neuropathy) in my feet and ankles.
I've had fibro also for years, but, it is nothing compared to what ever this is now.

Most of the things that can cause it have no good endings. Only one that can be treated
and I've heard the medicine is rough.
Very difficult to walk. Tiny, shuffling steps. And painful lumbar and thoracic spine when I stand
more than 15 mins.
The doctors are so slow in tests, then say come back in three months for results.
It could all be done in 3 weeks if they would just push it.
A lot has been ruled out and it's looking more like either Ankylosing Spondylitis
or Parkinson's than anything.
Anyone have any experience with these?

Sometimes it is hard to deal with because I can't do the things I want, like walking, housework,
gardening, shopping. Only short periods of time before the pain is too unbearable.

I don't take anything for it except an occasional ibuprofen.
Rest and hot packs help. Thankfully it doesn't keep me awake very much, since rest helps.

I know the remarks can hurt too, emotionally.
The one I live with says I sleep or lay down too much. I don't do 10 mins. of work in a year,
I'm told.
Then he gets angry when I can't move to do more.
I don't think it's because he doesn't understand, it's because he doesn't want to lose
"Cinderella."
View attachment 78394

Ah geez, that all sounds awful. I'm sorry you have to be going through that right now... is it like a fairly recent thing that just started up?

 

[Darkkin]

If I do too much (e.g. cleaning my room baseboards to ceiling, which included dismantling and reassembling my big bookcase, vacuuming, and remaking the bed), my hip will dislocate and I won't be able to walk.

Weird feature, but it usually pops back once I stop moving for a couple hours. If I don't move it doesn't hurt, but if I try before it clicks...yeah, no.

It freaked the hell out of my best friend when I told her I couldn't walk. She was ready to call 911 thinking it was a major injury, not just a wonky alignment that got stuck. Usually I can get it to click back enough that I can walk (albeit very tentatively) to mask the pain and the problem.

 

[Richelle-H]

This is not necessarily going to apply to everyone, but with every decade of my life after I turned 45 some new pain or physical ailment manifested and necessitated certain adaptive responses to deal with them. Now, at almost 76, pain is a constant companion. It never completely abandons me. It is much like an annoying noise that you can do nothing about, other than put in some ear plugs. Too bad for us if the only response to pain is something that alters brain chemistry enough to dull or mute our pain receptors.

I have peripheral neuropathy as well and that is a constant tingling or numbing in certain areas of the body, mostly extremities, but I also have it in the upper and lower lip on the right corner of my mouth (very annoying if I focus on it, which I try not to do anymore). The neuropathy has been with me for so long that it fades completely when I partake of my pain medication. Unfortunately, I cannot say that is true for the actual pain. It does fade into the background a bit, but never completely goes away. I can function with a dose of my medication. But that is something that is not readily available to everyone so I am not mentioning it here, but if you have read some of my posts, you might be aware of what it is already.

Pain is a constant companion in life, and it becomes more insistent as one grows older. It can affect a wide range of activities and one's quality of life. Nevertheless, even though it is sometimes quite difficult to do the simplest of things, I still manage better than most women or men my age, so I really cannot complain too much, and if those around you do not know how debilitating chronic pain can be, just let them wait a bit, for they too will find out how difficult a flight of stairs can be when they have arthritis in every major joint of their body, if they are lucky enough to live a long and active life.

 

[Rasputin]

I suffered with chronic pain for years due to arthritis, and on top of that I suffered some pretty bad injuries. I used to try to power through the pain, but over time that doesn’t work. If you have serious physical pain, you should try to an orthopedic specialist if you can to get relief. If the issue is inflammation, I have gotten relief from ibuprofen or meloxicam. You didn’t mention the nature of the pain, but you should try to see a medical doctor.

 

[Fino]

I had chronic neck pain that drove me crazy for about a decade and mild chronic wrist pain. Both were fixed completely by an unusual chiropractor family business who used some sort of laser machine combined with massage and chiropractic work twice a week for several months.

 

[Metalhead]

I find that CBD helps with physical pain a lot more than Aleve does, but that's just me. I know how painful gout can get, and whenever I have an outburst, the pain can get quite intense.