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How to deal with extreme physical pain

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Re: How to deal with extreme physical pain

#121

Post by Waterluvian »

rpdillon wrote: post #100
Waterluvian wrote: post #42

Earlier quoted context omitted.

What would you hope people do if you did tell them? My guess is "Damn that sounds awful. Let me know if I can help" and then dropping it entirely?

My employer had me go through training that had this video as part of the curriculum. Though I already understood the ideas, the video was still useful for me. It's less than 3 minutes long. https://www.youtube.com/watch?v=1Evwgu369Jw In short, sometimes people need connection to others; problem-solving mode isn't always the most useful path.

My wife once said to me, "I don't need an engineer I need my husband." And it clicked. She doesn't want a fix. She just wants a hand to hold and for me to hear her frustrations.

Re: How to deal with extreme physical pain

#122

Post by kortilla »

darkerside wrote: post #108
banana_giraffe wrote: post #56

Earlier quoted context omitted.

And perhaps this is a thing everyone deals with to some extent for one thing or another: I have a very strictly controlled diet. It's the result of a lot of testing, and discussions with my doctors. Most people that are around me enough get a sense of this. Most don't know the depth of it. What gets old is when I deviate from the diet, by say having a glass of beer at a social function, it's a big deal. Everyone's co…

Just so you know, you're effectively complaining that people care about you too much. People can't put themselves in your shoes, but they try, and when they see you having a beer, knowing it could be bad for you, they try to support you in keeping away from it. I can see how it would get annoying. If you view it as love, instead of nagging, it might get a little less annoying.

That’s not “caring about you too much”. It’s not knowing what’s appropriate.

As someone who had to follow a strict diet for a while, I know for a fact that the people who stuck their nose into my allowed indulgences did not care about me nearly as much as the people who actually cared and knew I was capable of managing my own diet.

Re: How to deal with extreme physical pain

#123

Post by sterlind »

s5300 wrote: post #120
sterlind wrote: post #106

Earlier quoted context omitted.

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.

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!

Re: How to deal with extreme physical pain

#124

Post by shakna »

Ralfp wrote: post #88

As migraine sufferer, I find relief in only two thoughts: - my migraines last 4 hours and happen once every 3-6 months, and there are people who have 72hs long migraines, or migraine every few days - I could've had cluster headache instead. People suffering from those call them "suicide headache" and are known to hit their head against different objects, because losing consciousness or felling other pain is preferabl…

I get cluster headaches (as part of a larger pain condition). The easiest way I can think of describing it is that it starts out feeling sort of like a painful headache on one side of your head, that rapidly becomes more painful and _never stops_. The attacks can last literally months (My attacks tend to be 2-months long, two or three times a year).

The nickname of "suicide headache" is absolutely earned. Your face contains some of the most painful nerves in your body. Light them all up like a christmas tree, and keep it lit for months. Drive an icepick into your eye and keep that pain there for months. There is no escape. The pain can and will drive you from sleep, and there is basically no pain medication that will do anything noticeable.

I would never wish this upon anyone. Friend or foe.

---

All that being said, pain is a deeply personal thing. If your migraines are putting you in the worst pain that you know, then that's the very worst thing that you know. Coping with it means that you're dealing, and deserve sympathy, and understanding.

I don't get migraines, never have, so I don't understand what it's like. You have my sympathy for it. I am sorry that you suffer is this way, and I wish that it wasn't something that you consider part of your normal. I wish there was something I could do to ease your pain. Your living with it, is something to be proud of.

Re: How to deal with extreme physical pain

#125

Post by tejtm »

christiansakai wrote: post #38
hnruss wrote: post #32

I am also recovering from a frozen shoulder, but thankfully it was not nearly as bad as the author. This is also my second time having it. Both times have required months of PT, mostly stretching and some strength training. As for the pain during PT, I found it helpful to talk to the physical therapist, which distracted my mind from lower-level pain. When the pain increased, I’d temporarily stop talking and free my m…

How do you recover from this? Isn’t this a genetic disease?

Unknown. Most common in post menopausal women with an autoimmune disorder such as diabetes or thyroid problem. i.e. not me but I got it anyway.

You "recover" when your body stops recognizing the soft tissue around your shoulder as the enemy and it has a chance to heal. For most it takes 9-18 months (per shoulder) and stops when it does regardless of physical therapy. The one thing that seems to help is a cortisone shot _early_ which seems to knock about three months off the the disease's course. Shots later do not have the same effect.

Logically it is an auto immune response, to what I have no clue. Starts like any strain you don't quite remember how you got and just keeps getting worse.

If you get it in one shoulder you are very likely to get it in the other. But you are more likely to recognize it early and get that cortisone shot.

Re: How to deal with extreme physical pain

#126

Post by shock »

smabie wrote: post #65
centimeter wrote: post #58

Earlier quoted context omitted.

If your diet plan allows beer it’s probably not very effective. Doctors aren’t going to be very helpful here - 95% are incompetent. You should probably try to come up with a good and efficiently computable a priori dietary strategy (e.g. evolutionary ancestral diet, with the goal of minimizing the chance of running into defective metabolic pathways). I can’t think of any such strategies I’m aware of that would allow…

What's wrong with beer?

Contains gliadin and glutenin which promote the release of zonulin which regulates the tight junction in the intestinal epithelium. Disregulated tight junctions can lead to autoimmune disease.

At least that's the theory.

https://www.mygenefood.com/blog/zonulin-leaky-gut/

Re: How to deal with extreme physical pain

#127

Post by kshacker »

banana_giraffe wrote: post #78
centimeter wrote: post #58

Earlier quoted context omitted.

If your diet plan allows beer it’s probably not very effective. Doctors aren’t going to be very helpful here - 95% are incompetent. You should probably try to come up with a good and efficiently computable a priori dietary strategy (e.g. evolutionary ancestral diet, with the goal of minimizing the chance of running into defective metabolic pathways). I can’t think of any such strategies I’m aware of that would allow…

This is exactly what I'm talking about. One beer every 3 months is proof my diet is a problem? For a condition you know nothing about? Really. Fine, then it's useless, and I've surrounded myself with idiots, all of my careful testing and attempts to understand my condition have failed. This kinda of nonsense, where I debate the very meaning of "me" to some extent is tiring. Even if I'm wrong in all of this, I'm not h…

I think you need to cool down.

We live in a complex world. Some of us know the health side well a lot of us don't. Then we get an issue, like I had a heart attack and stents, and besides what the doctors and the family say, we read and read and read. And then when we see all the healthcare industry is trying to do is to make money from our sickness, when we see a friend in similar or really tangential pain, we try to help based on our experiences. That is life. I have offered my (unsolicited) help and knowing my condition some people have also seemed my help. That is again life.

What you and I need are skills to move on if not interested, but blaming people for trying to help in a social setting is probably not the right way to look at it. Apologies for being blunt.

Re: How to deal with extreme physical pain

#128

Post by ornel »

xzel wrote: post #54
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've had unexplained knee pain for almost a decade. I've done everything people recommend, stretches, PT, rolfing (which is great to be honest) etc. I was and am currently in great shape and stretch for 30-60 minutes a day. The only thing I've ever found to work for bad days is over the counter 8mg Codeine tablets you can get in Canada. I can't get them in the US or even for a doctor to consider it, they're terrified…

I need azulfidine (sulfasalazine, salazopyrine) to control my arthritis flare ups. It suddenly disappeared from pharmacies due to messed up logistics of precursors. It really made me aware of how totally dependent I am on this product of complex globalized industry and how if it was a fun or addictive recreational drug someone would have come up with a way to cook it in your backyard

Re: How to deal with extreme physical pain

#130

Post by yobert »

Waterluvian wrote: post #121
rpdillon wrote: post #100

Earlier quoted context omitted.

My employer had me go through training that had this video as part of the curriculum. Though I already understood the ideas, the video was still useful for me. It's less than 3 minutes long. https://www.youtube.com/watch?v=1Evwgu369Jw In short, sometimes people need connection to others; problem-solving mode isn't always the most useful path.

My wife once said to me, "I don't need an engineer I need my husband." And it clicked. She doesn't want a fix. She just wants a hand to hold and for me to hear her frustrations.

I can tell already that I do this and I should stop. My wife just hasn't said it yet.

I just always default to problem solving....

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