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How to deal with extreme physical pain

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Re: How to deal with extreme physical pain

#111

Post by 6stringmerc »

forgotmypw17 wrote: post #107
banana_giraffe wrote: post #12

I have a chronic condition that causes pain. One of the things I've learned, in as much as I can, is I don't tell anyone. I'd rather be rude than explain I'm in pain. Not because I don't appreciate sympathy. Not because I'm ashamed. It's because I don't want your advice on how to make the pain go away or to deal with it. I'm tired of advice. I've got too much advice. I try things, I research issues. I talk to doctors…

I think you're being unnecessarily dismissive of good, reliable information coming your way. Anecdotal advice is some of the most reliable, trustworthy advice that we come across. All those studies are affected by agendas from dozens of individuals and organizations, not to mention potentially poor procedure and general incompetence. You're being gifted information which was transported to you graciously from an actu…

The only way to fix my ankle arthritis is to have the joint replaced, which is not ideal nor a consideration. Anything otherwise is not good, nor reliable information. It's kind of like me saying to you, "Hey, your advice is stupid, maybe you should go take some smart pills so you don't infect others" in seriousness, instead of as an off-hand reply gifting you with information graciously.

Re: How to deal with extreme physical pain

#112

Post by eric_b »

I had chronic, severe, debilitating pain for years until I read the book: The Mindbody Prescription by Dr. Sarno [1]

Someone on HN suggested it in a "carpal tunnel" thread. I didn't have carpal tunnel. I had a completely destroyed knee. No more cartilage. Bone on bone with every step I took (confirmed by MRI). Cortisone didn't make a bit of difference. I couldn't walk 20 feet without mind boggling pain.

That book changed my life. I can walk 10 miles (mostly) pain free now. I still don't have any cartilage. I never had surgery or did PT. The book explains it all, but the TLDR is that it's the brain that's causing the issue. You can have incredible structural issues. Herniated discs in the back. Zero cartilage in the knee. And the reason you feel pain isn't the structural issue, but your brain's response to it.

I wager that book would be life changing for 90 percent of chronic pain sufferers if they gave it a chance.

(Yeah, a lot of people are going to chime in and say that their pain is different or an MRI confirmed their structural issue or whatever. Yeah, I get it. I was there too. Frozen shoulder is almost certainly a manifestation of TMS, at least for some large number of people. For those who understand the mechanism, it's clear that 2020 is going to be a bad year for people in terms of chronic pain. It doesn't need to be.)

[1] https://www.amazon.com/dp/B00FOTRPJQ/ref=dp-kindle-redirect?...

Re: How to deal with extreme physical pain

#113

Post by edgyquant »

distantsounds wrote: post #71

okay, so smoke some weed and go about your day? why is this even posted here?

Weed isn’t a magical drug no matter how much it’s advocates want it to be. Also I’m glad this was posted, as someone who suffers from more than one chronic pain condition, as it’s been eye opening to see how much of HN is suffering as well. Sometimes it’s comforting just to know you’re not alone.

Re: How to deal with extreme physical pain

#114

Post by S_A_P »

Frozen shoulder is no joke. I didn’t see the domain name when I clicked on the heading. I have dealt with frozen shoulder off and on for about 2 years. Fortunately I think I’m on the downside of the pain but it can be a mind####. I was otherwise healthy but I couldn’t raise my right arm over my shoulder. It can cause a spin out of worry which I’m sure makes it worse. Thanks Scott for sharing your story.

Re: How to deal with extreme physical pain

#115

Post by ianai »

renewiltord wrote: post #87
ianai wrote: post #53

Earlier quoted context omitted.

Care by simply expressing someone wasn’t in pain is enough. No need to try to be the fixer.

Right, right. Just explaining. Not justifying.

And it’s not always wrong to try to help like that. But just want to give people another option.

Re: How to deal with extreme physical pain

#116

Post by shakna »

zdragnar wrote: post #5

I was diagnosed with fibromyalgia ~15 years ago. Since then, having started an immunosuppressive for something else and it seemed to help with the pain- now the doctors think it is psoriatic arthritis. I am in constant, mild pain. Some days it is nearly, but not quite debilitating. Some people think I am making it up, exaggerating, or that it is all in my head. There is no certain test for either condition- in partic…

> There is no certain test for either condition- in particular, fibromyalgia is basically a bucket you get tossed into if nothing else makes sense.

FM is young (around 1990 it got its name), so a lot of what we know has changed, especially in fifteen years, but it is no longer the case that there isn't a test for it (there's multiple), and it should not be the diagnosis of last resort when nothing else makes sense. There are specific diagnostic criteria.

For testing, we have things like the FM/a blood test (since 2012), and for diagnosis you need to fulfill "The American College of Rheumatology preliminary diagnostic criteria for fibromyalgia and measurement of symptom severity" (2010), or similar.

FM also falls into four categories:

+ Extreme sensitivity to pain but no associated psychiatric conditions (usually treated by attempting to de-sensitise the nervous system)

+ Fibromyalgia and comorbid, pain-related depression (usually treated as the above, whilst also utilising an anti-depression regime)

+ Depression with concomitant fibromyalgia syndrome (usually treated as the above)

+ Fibromyalgia due to somatization (usually treated with psychotherapy)

The fourth category is sort of what everyone assumes the entire illness is like, at least in my experience. It also happens to be the least common form of the illness since we began standardised diagnosis.

---

I fall into the first category. I am not intending to provide any advice whatsoever, because that's one of the most infuriating things about living with the illness. I've been learning to deal with this for half my life, the person talking to me may be frustrated and want to help... But the chances of you coming up with anything I'm not aware of are practically zero. And an insult to my intelligence and determination.

However, fibromyalgia shouldn't get the stigma of being the "random disease" anymore. It isn't. Unless you fall into the fourth category, there are neural structures unique to sufferers, and blood markers that are unique to sufferers. This is a condition, not a wastepaper basket for people that are just too hard to diagnose.

The illness can already ruin you, don't let the stigma burn you as well.

Re: How to deal with extreme physical pain

#117

Post by s5300 »

curiousDog wrote: post #97

Wonder if he's able to code. I have Thoracic Outlet Syndrome (TOS) and work at a FANG. Everyday and every line of code is a challenge. Planning to push through for a few more years before I can find a new career where I don't haave to type as much but I don't know what yet. Really sucks.

Haha, I actually just sent him an email about TOS just in case he'd never heard about it. Large amount of people with TOS also having frozen shoulder as a down the chain issue.

Have you been seen by a good TOS doc yet/considered surgery? I have bilateral NTOS + left sided VTOS. I'll soon be having a first rib resection (FRRS) and scalenectomy, possibly a pec minor resection down the line, with Dr. Dean Donahue at Boston Massachusetts General Hospital. Donahue is arguably the best surgeon in the US, taking in a large amount of cases that have already had a botched surgery and being able to give them nearly total/total recovery.

There's around 5-10 great surgeons within the US though, and this unfortunately seems to be a condition it which surgery is mostly the best option. As much as I absolutely despise Facebook, here's two really great groups for TOS info/resources/top surgeons if you're not yet aware.

https://m.facebook.com/groups/15231937182

https://m.facebook.com/groups/205345126171314

Re: How to deal with extreme physical pain

#118

Post by autarch »

post_break wrote: post #76
autarch wrote: post #14

About ten years ago I had around 9 months (maybe a little more) of chronic testicular pain. It felt like someone had kicked me in the crotch about 10 minutes ago, all day every day. I've been in more pain from some injuries I've had (bike accident), but this lasted for much, much longer. It also made sleeping difficult, as for some reason lying down was extremely uncomfortable. I ended up sleeping in a chair for seve…

You're describing exactly what I went through! Two rounds of antibiotics, pain meds. Finally gabapentin was the only thing that worked and now I'm slowly weening myself off of it. It's been hell. I had to sleep on the couch elevated. I could barely walk. Everything looked fine down there physically, two ultrasounds, MRI, nothing looked odd. I'm really hoping it never comes back because it was like either someone was…

Yeah, I did consider some surgeries like an epidydymectomy (the doctors though that was where my pain was coming from). Fortunately it did slowly resolve itself and I didn't have to do that.

I hope your pain resolves itself soon. It just sucks so much to have to deal with this.

Re: How to deal with extreme physical pain

#119

Post by Dahoon »

centimeter wrote: post #50
gwbas1c wrote: post #22

Earlier quoted context omitted.

> It's because I don't want your advice on how to make the pain go away or to deal with it Banana_giraffe isn't alone. I had chronic obstructive sleep apnea and I quickly got tired of unsolicited woo-woo illogical suggestions to treat it. Exercise and meditation doesn't fix problems with bone structure.

Exercise can help fix excessive body fat, which contributed to my apnea. It’s actually pretty fascinating how many common and sometimes serious medical problems are known to be fixable with “woo-woo” advice like “don’t eat like shit” (advice that 95% of people don’t follow). E.g. type 2 diabetes and refractory epilepsy now have purely dietary interventions as front-line treatments. We have weak evidence that this wil…

In that case it is modern medicine that is woo-woo since we had dietary treatments for serval things before we had medications for it, like for epilepsy.

Re: How to deal with extreme physical pain

#120

Post by s5300 »

sterlind wrote: post #106
banana_giraffe wrote: post #12

I have a chronic condition that causes pain. One of the things I've learned, in as much as I can, is I don't tell anyone. I'd rather be rude than explain I'm in pain. Not because I don't appreciate sympathy. Not because I'm ashamed. It's because I don't want your advice on how to make the pain go away or to deal with it. I'm tired of advice. I've got too much advice. I try things, I research issues. I talk to doctors…

I'm in a fair bit of constant pain from Ehlers-Danlos syndrome, and what's helped me is finding support groups of the "life hacks" variety. Everyone in the group has EDS or is a caretaker, so they "get" it. It's consent-oriented because people won't give you advice unless you post asking for it. It doesn't turn into a pity party because the forum is about asking questions and getting answers. The post history has eve…

EDS outright fucking sucks. I have EDS and Thoracic Outlet Syndrome likely caused by it. Also being treated for a recurring visualizable CSF leak.

Literally have to drive 3+ hours/fly for the majority of my major treatments so far.

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