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How to deal with extreme physical pain

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Re: How to deal with extreme physical pain

#101

Post by bigmattystyles »

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…

While we're getting things off chests. I have a condition that's barely a condition; it causes minor, barely pain but it's always there. The problem for me is I am also pre-disposed to catastrophizing and that makes everything worse. My problem is as much (if not more) mental as it is physical. I've received help on both ends (for physical and mental health) but eight months of living with this discomfort and I can't help but think that it's forever, will never go away and in fact will get worse. I fear that the physical activities I love will disappear from life and that I won't be able to play with my kids.

Perhaps it's nothing more than future snakeoil but claims that humans will be able to CRISPR pain signals away in the not too distant future gives me hope. Opiates scare the living sh*t out of me.

I love Scott, I've followed and read him for a long time. From his involvement in the diabetes community and his glucose tracking projects, to advocating for .NET and MS, and just opening doors for others, it's clear he's a wonderful person.

From his posts, he's got an amazing family and I wish him and them all the best.

Re: How to deal with extreme physical pain

#102

Post by seibelj »

internet_user wrote: post #75
seibelj wrote: post #15

I have a legendarily bad back, as does my father. One time at the office it seized up and and floored me for 45 minutes as coworkers walked by. My right leg went completely numb, and didn’t get back to normal for months. Don’t need any suggestions, I have tried them all, lots of doctors, yes yes yes. I manage. But it is a pain in the back to deal with.

whats the actual diagnosis?

I have several discs in my lower back that are impinging on my spine. They are bulging out.

Re: How to deal with extreme physical pain

#103

Post by [deleted] »

CobaltFire wrote: post #35
zdragnar wrote: post #9

Earlier quoted context omitted.

I started Taltz to deal with my psoriasis, and found out what I had thought was something else turned out to probably be psoriatic arthritis, because the pain definitely went down after starting it. It isn't a cure, but perhaps you might find some relief there if you haven't tried it. > It’s hard to describe how much ongoing pain changes who you are This is definitely true. I spent years getting back to being myself,…

Part of the reason they are transferring me is so they have the freedom to try some of the immune suppressing drugs. Being deployed overseas means they can't. I'm terrified, but hoping something will help.

[deleted]

Re: How to deal with extreme physical pain

#104

Post by zdragnar »

CobaltFire wrote: post #35
zdragnar wrote: post #9

Earlier quoted context omitted.

I started Taltz to deal with my psoriasis, and found out what I had thought was something else turned out to probably be psoriatic arthritis, because the pain definitely went down after starting it. It isn't a cure, but perhaps you might find some relief there if you haven't tried it. > It’s hard to describe how much ongoing pain changes who you are This is definitely true. I spent years getting back to being myself,…

Part of the reason they are transferring me is so they have the freedom to try some of the immune suppressing drugs. Being deployed overseas means they can't. I'm terrified, but hoping something will help.

Ah, i had forgotten about the being deployed bit. Being on taltz does mean having to take a tuberculosis test every 6 months, so I imagine that would be rough.

One suggestion is to not be pressured into a biologic before you do some research on incidence rates of side effects. Newer ones seem to be WAY safer than even those that came out a few years ago, but the insurance companies don't seem to care.

In fact, it isn't covered at all for me, but the manufacturers have a card you sign up for that lets you get it for $25 (or reduces your copay to $5 if you have a deductible).

I'm not sure what access to this stuff is like overseas or through VA, so I am curious and hope it pans out well!

Re: How to deal with extreme physical pain

#106

Post by sterlind »

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 everything from wheelchair tips to relocating joints. Direct medical advice is banned, only suggestions of what to ask doctors are allowed. It's nice.

Sometimes I really want somewhere I can scream into the void about my pain and degeneration though. I'm not sure of a psychologically-healthy way to scratch that itch.

Re: How to deal with extreme physical pain

#107

Post by forgotmypw17 »

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 actual human being who maybe actually had your problem and found something useful to help with it.

I think if I were you, I would reconsider how you view these situations.

Re: How to deal with extreme physical pain

#108

Post by darkerside »

banana_giraffe wrote: post #56
centimeter wrote: post #50

Earlier quoted context omitted.

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…

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.

Re: How to deal with extreme physical pain

#109

Post by steve_adams_86 »

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…

I had severe sciatica from ages 25-30 and it was like another lifetime. I don’t know where it came from or where it went, but that was a remarkably worse period of my life.

Reflecting on it I wish I wasn’t dragged down so much. But in all honesty I think I’d handle it even worse now. It was agonizing at times. I remember laying on the floor squirming in pain, no idea what to do. Hours of it. Thinking about it makes me a little anxious. I should be more grateful that I’m healthy again.

Re: How to deal with extreme physical pain

#110

Post by 6stringmerc »

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 occasionally limp due to a chronic condition. The last thing I want is any comments about it, because a few days later I might not. Unsolicited commentary is usually met with a sigh and a brush off, not telling the truth. The truth is I have built up defense mechanisms and anybody trying to point out my weaknesses can get a face full of their own by way of training watching Triumph the Insult Comic Dog.

"Mind your own business" is something that could use a little more respect now and then.

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