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How to deal with extreme physical pain

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Re: How to deal with extreme physical pain

#131

Post by strstr »

Zenbit_UX wrote: post #99
strstr wrote: post #25

"A healthy man wants a thousand things, a sick man only wants one". There are so many forms of illness where this is true. I've never experienced anything nearly as persistent and painful as frozen shoulder. The worst thing I've experienced was probably Sciatica as a teen. It was particularly frustrating since the pain was intermittent and invisible to others. Through fairly substantial lifestyle changes, I haven't h…

Someone I know is dealing with sciatica now and it's not going well, do you have any insights on what helped you?

My situation was unusual, so I'm not sure my solutions would generalize. Sciatica in teens is very unusual. The cause, likely, was a series of fairly involved surgeries I had had as a young child combined with overuse. None of the orthopedists I saw were particularly sure about the cause, nor were the physical therapists.

The long term solution was to avoid triggers and increase core strength. The short term solution was NSAIDs and correcting sleep posture (getting an 8-9 hour reprieve from loading the muscles that spasm remains very helpful).

Long-distance running was a trigger for me (particularly running slowly, oddly enough), so I haven't run in basically a decade. I used to run 5 days a week. It was pretty clearly part of my identity.

Years later, I picked up rock climbing (2-3 days a week) and my problems incidentally went away. Whenever I stop climbing for a while, I get periodic minor flare-ups. Fortunately, the short term fixes can nip this in the bud, particularly if I start exercising again.

I don't know the details of their situation, but I would encourage them to seek out a physical therapist. And to change therapists if it doesn't work. It took me a while to find someone that could actually help. I have no idea why the first therapists did not suggest improving sleep posture.

Re: How to deal with extreme physical pain

#132

Post by eric_b »

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…

At the risk of being a jerk: Have you read the book The Mindbody Prescription by Dr. Sarno? [1]

I sound like an infomercial pitchman but that book changed my life. I had a massive structural issue that was either going mean a knee replacement or dealing with "you won't walk right ever again". Well, it turns out there was a third option.

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

It sounds woo, I know. I was so fucking tired of people giving me their quack advice too. This was the one thing that made sense. And it literally changed my life.

Re: How to deal with extreme physical pain

#133

Post by rriepe »

autarch wrote: post #33
qppo wrote: post #28

Earlier quoted context omitted.

Another person with orchialgia here, it sucks. Mine's been on and off for almost 20 months now. After three urologists I found something that worked (and it's like a miracle). Something you touch on here implicitly is how much it changes little things in your life. For me it was long commutes, I can't sit for extended periods of time. What I would add is that doctors can be great for things they recognize and can tre…

Yeah, regarding doctors I'm not sure anything they suggested help. The first one I saw that it was an infection and gave me antibiotics. That didn't seem to do much. Then as it persisted another urologist thought it might be urine backflowing down my vas deferens and I took beta blockers to improve my urinary flow. Finally the urologist basically said that sometimes after you have an infection you can have idiopathic…

I had something like this that landed me in the ER. I got a diagnosis of deferred kidney stone pain at the time. I too was all about which way to sit in a chair. I can't imagine that going on for weeks.

Re: How to deal with extreme physical pain

#135

Post by sigzero »

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 am exactly the same way. When people ask, I just say "I'm doing ok." and that is usually the end of the asking.

Re: How to deal with extreme physical pain

#137

Post by s5300 »

sterlind wrote: post #123
s5300 wrote: post #120

Earlier quoted context omitted.

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.

Yup, I have TOS too. It's not too painful for me, but prevents me from lifting my arms for more than a minute or so. So far I've avoided most of the other common complications besides POTS and nerve stuff, and I've been managing okay with lots of PT and bracing. Hang in there, I hope they can patch your leak!

Just in case you're not aware, a pretty cool dude named Dr. Ian Carroll has been finding that a fairly substantial amount of POTS cases in EDS end up being a CSF leak, even though sometimes quite miniscule and very hard to identify. Not to say that POTS and EDS aren't a thing though. Very much is.

I was initially thought to just be suffering from POTS by some pretty well respected docs at Cleveland Clinic, but there were some outlying symptoms that just didn't add up. Ended up getting to see Dr. Carroll at Stanford and Dr. Wouter Schievink at Cedars-Sinai and they were able to visualize a leak, still in the process of trying to get blood/glue injections to work until I get through TOS surgery. After that it may end up coming to surgery for CSF as well.

Also, I hate to sound pessimistic but just want to try to give advice - from what I've heard anecdotally, TOS will slowly progress, especially in those with EDS. The younger you have surgery, the better the outcome as well. I tried to stick it out with some pretty seriously targeted physical therapy and bracing until I was 20 but shit just kinda hit the fan and I've had to opt for surgery.

There are 5-10 surgeons in the U.S. that are at the point of having really great outcomes, most notably Dr. Dean Donahue at MGH. I waited like 9 months to initially consult with him. As much as I loathe Facebook, here are some great groups with regards to knowledge of good surgeons if you ever decide to pursue that route. A bad surgeon for TOS is definitely a bit of a death sentence.

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

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

P.S., apparently there's been a good amount of POTS cases induced by COVID-19 and not responding well to treatment. Doctor at Cleveland Clinic mentioned it to me, said they were a bit dumbfounded. Will definitely be interesting to see how things play out long-term, will hopefully end up giving POTS some more awareness it deserves. Also, I have great hope in Neuralink for EDS pain in the future. Hopefully.

Re: How to deal with extreme physical pain

#138

Post by will_pseudonym »

stordoff wrote: post #27
schoolornot wrote: post #6

Earlier quoted context omitted.

Had invasive surgery on my humerus that involved drilling & cutting into bone and muscle. The pain following the nerve block wearing off was indescribable. Groaning was about the most I could do. The pills might as well have been made out of sugar. You're right, perspective does change permanently. There weren't "seeing the light" moments but I certainly know now who my friends are. I have an interesting view of life…

> I'm also viciously dismissive now of any legislation or practices that limit controlled substances. I'm not an addict and I shouldn't be punished for other peoples acts. I find myself agreeing with this. Opiate overuse and addiction is certainly a problem, but I also question some of the negativity I see regarding their use (from a UK perspective). I was on tramadol (200mg/day) for about six months, and was told, b…

I've also been similarly able to cold turkey quit opiates taken for chronic pain. I know from listening to medical call-in shows that depending on the dose and frequency, that can be a very bad idea. I feel like there must also be some kind of other variable that factors into whether or not you'll experience adverse effects, or otherwise our experiences wouldn't be possible.

Re: How to deal with extreme physical pain

#139

Post by autarch »

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…

Self reply to add an addendum ... I almost forgot the follow up.

I've also experienced weird GI pain with no cause and reflux without any indication of reflux (throat looks fine, swallowing is fine, etc.).

For the GI pain, my GP prescribed a relatively low dose (20mg) of Amitrypyline, which is an old anti-depressant. Later, the GI specialist I saw recommended I double this to 40mg.

Apparently it's good in treating idiopathic pain like mine, and I it may have helped me. It's really hard to say because a lot of my pain issues have occurred on and off over long periods of time. So maybe the improvement is just a natural resolution of some underlying issue, or maybe it's the medication.

The theoretical mechanism of the drug is that when taken before bed it helps you sleep more deeply, and during good quality sleep your body is better able to repair itself.

Absent any reason not to, I'll just keep taking it.

Re: How to deal with extreme physical pain

#140

Post by ternaryoperator »

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…

Re the reactions to your pain, I think there is a belief deeply embedded in the American psyche that most any problem can be solved. And mentioning a difficult problem brings out this aspect.

In almost all cases, I like this quality and the underlying optimism it implies, but I also understand how it can be annoying and often come across as unconsciously insensitive.

Sometimes, expressions of sympathy are all that's needed or wanted.

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