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What Makes Your Blood Boil?

Discussion in 'Off-Topic' started by Commodore, May 12, 2017.

  1. Valka D'Ur

    Valka D'Ur Hosting Iron Pen in A&E Retired Moderator

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    Berzerker, I am going to assume you do mean well, but you're still being judgmental and lecturing us as though you live in our bodies and know what we feel capable of doing and what our risks are.

    All the exercise in the world isn't going to fix what the ultimate cause of all this is - in my case. A medical breakthrough would. But since there are doctors who still refuse to admit that two of my conditions even exist/should be treated the new way instead of the old way, I'm not confident that any breakthrough is going to happen in my lifetime.

    I had to nearly die before my doctor would even begin to take things as seriously as they actually were. Her answer to severe ulcers? "Don't let yourself get stressed." The real answer? Tests that confirmed what was going on and an aggressive course of antibiotics, plus a change in diet to eliminate lemons, limes, oranges, and grapefruit, plus medication I'm going to be on for the rest of my life. That was 16 years ago and I haven't had any major problems since (too many tomatoes can be a problem, but that's why plain soda crackers are a staple in this household).

    I had to fight to get those tests done, and it started with a semi-loud shouting match in the lounge at the hospital when I told her I'd been reading up about it, and I didn't believe that nothing could be done. Ditto for the fibromyalgia - try to explain to someone who's never experienced it, how you can feel numbing and tingling in the same body part and it comes and goes so fast that it seems to be happening at the same time... and it's accompanied by pain that's sometimes so intense that you literally scream. The left side of my left hand is usually numb to some degree, but the fingertips feel like I'm either being pricked with sharp needles or there are ants crawling over my hands. Just try to explain that to people and add that you sometimes can't tell the difference between wet and dry... and they look at you like you've gone nuts. Things got to the point where I couldn't pet my cats, even the one with the softest fur, because it hurt too much. Even air hurt. She kept dismissing that, preferring to believe that I was lying, or was a hypochondriac.

    After years of this (and after my hospitalization had passed), she finally sent me to a specialist. Five minutes after I walked into his office (using the canes; I was finally on medication that had helped improve things so I didn't need the wheelchair anymore), the specialist said, "There's no doubt about it. You have fibromyalgia."

    I just sat there and cried. After so many years, somebody finally believed what I was saying.

    So... yes, some kinds of exercise will help. Some kinds won't. And all the exercise in the world isn't going to fix some things (the things I've mentioned aren't the complete list; some of it's too personal for a public forum). Please stop assuming that what works for you will work for other people.
     
    demiurgenext and Honor like this.
  2. Akka

    Akka Moody old mage.

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    If you don't like people pointing the faults in your arguments, why are you posting them on a forum ?
     
  3. Valka D'Ur

    Valka D'Ur Hosting Iron Pen in A&E Retired Moderator

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    Your inability/refusal to understand my point is not my fault. I've made it quite clear that I don't speak statistics, and I've also made it clear that if you don't like posts that don't regurgitate charts and graphs, you don't have to read them.

    My conversation with you on this is over.
     
  4. Ryika

    Ryika Lazy Wannabe Artista

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    A google search for "fibromyalgia exercise" lists tons of websites, many of which seem to be actual informative sites, not the clickbaity "We have the solution for all of your problems!"-type of site, that claim that exercise can decrease the pain from fibromyalgia. Are they all wrong?
     
  5. Valka D'Ur

    Valka D'Ur Hosting Iron Pen in A&E Retired Moderator

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    I have not read them all. And again, you're assuming that what works for some will work for all. Fibromyalgia is one of the things I'm dealing with, but it's not the only thing, or even the most difficult thing.
     
  6. Ryika

    Ryika Lazy Wannabe Artista

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    I'm not assuming that it works for all, I'm assuming that it generally works.

    Overall it seems to me that you're arguing for fringe cases, while Berzerker is generally right with what he said.

    Would you agree with him if he said that exercise is good in the majority of cases, instead of making it an absolute statement?
     
  7. Synsensa

    Synsensa - Retired Moderator

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    This is the problem with what you're saying. You are saying, point blank, that if you have mobility issues all you need to do is exercise and you won't have mobility issues anymore. You don't stop to consider that someone with mobility issues is already at their best when it comes to their ability to move around. Barring miraculous medical intervention, it is often the case that you gradually lose the ability to walk properly regardless of what you do... that's the issue with something that has a degenerative impact on your body. It impacts you regardless of what you do.

    I have fibromyalgia as a secondary/tertiary diagnosis and, due to a general lack of funds and awareness over my primary condition, have been involved in fibro-focused support groups and treatment plans for a few years now. As a result, I've been 'around the block' quite a few times when it comes to things people say help. Some do, most don't, and the biggest issue with something like fibromyalgia is that it's a diagnosis of exclusion. It's extremely likely that many of the people with a fibro diagnosis (like in my case) don't actually have "fibromyalgia" but instead another condition that's either unknown or rare enough to go under the radar in perpetuity.

    There are rumours that you can diagnose fibro with certain tests but these all sort of peter out after any sort of serious inspection. Based on the constrains of modern medicine, fibromyalgia isn't a definitive disease that has a clear origin and a clear treatment, and how it manifests itself can be exceptionally different from one person to the next. The story of "I was misdiagnosed with fibromyalgia, here is what I really have" is a common one. Boots went into it a little with his post on the last page.

    And this point is for both @Berzerker and yourself: nobody is saying that exercise is a bad recommendation. If you can exercise, you should do it even if that only entails some light stretching every day. If you don't have a disease where exercise is explicitly bad for you, exercise is not something you should directly avoid. What's being said here is that the idea that "exercise = get better" as a universal theory does not fly, especially when people who are suffering from conditions where executing that idea puts them at risk are trying to tell you that it doesn't work that way. You can throw Valka and I, for example, into a gym and tell us to go exercise our pants off and we will not come out the other side better for it. That's simply a plain fact. That's simply what the medical professionals we've come to trust (if any) have confirmed for us after so much trial and error.

    Do you really think that we just haven't figured out that all we need to do is move our legs a little and we'll be a-okay? That takes naivety or a belief that we're essentially infants. If our conditions could be improved and all it would take is a little bit of exercise, we'd be on that in no time. Not as much pain? Not as much nausea? Not as many cramps, not as many dysfunctions? Sign me up. But it doesn't work that way. For myself it's even more difficult because there is a direct correlation between exertion and intensified symptoms. I'm not sure if Valka suffers from the same.

    It's not even that I'm resistant to the idea that exercise will make it easier to move around. That's true for most people. It was true for me, in a way. I had been reduced to using a cane by the age of 17 but can reasonably 'walk' today because I incorporated stretching exercises for my ankles. My mobility is still compromised and I can't be on my feet for very long but I don't need an aid to get around, so that's a win. I'm a case where exercise removed the need for a mobility aid. But I'm now six years in after that point and it's likely going to be the case that I'll need a mobility aid again in the next year or two regardless of still doing what originally helped me and regardless of working tirelessly in a lame attempt to improve my capability (to no avail).

    Any improvement I've seen over the past few years as a result of exercise has been like a house of cards: fragile and temporary. It's not a reliable thing and it consumed my life. I was also a complete git because the intensified symptoms were gradually getting worse instead of better. In two years of excruciating effort I was rewarded with the ability to be on my feet for 5 hours in a day without being bedridden the day afterward... and lost it all as a result of a single bout of illness. Through those two years I experienced nothing worth living for, alienated everyone close to me, and watched most of my secondary symptoms get worse. Was being able to be on my feet for 5 hours a day nice? Sure. Could I make use of it, enjoy that ability, and use it to snowball to better improvements elsewhere? No. It was a monumental effort that led nowhere.

    That is the problem with a condition that is degenerative. You can work as hard as you want to be the very best you can physically be... and it won't be enough. That work cannot be tested or it will break immediately. There is no way to balance between enjoying the fruits of your labour and the effort required to be capable for it. My doctors agree with me. Medical science agrees with me. If your body is compromised and cannot operate as it should, the standard recommendations for healthy living are either necessary or ineffectual. Most of the time it needs to be adapted to our limitations. A hundred percent of the time we're told to temper our expectations because we will never experience the gains other people experience when they make good decisions.

    The majority of my time is spent recovering from simply being alive. I have no room for quick fixes or people who tell me that all I need to do is exercise to be better. I know what it was like to be healthy and to see the gains of effort. I now also know what it's like to have nothing and to watch your body deteriorate helplessly. I've spent the latter part of my teenhood and the entirety of my adulthood seeking answers and solutions. It is unlikely that anyone here can tell me something I haven't already heard or attempted. It's equally unlikely that someone telling me that all I need to do is exercise and I won't have mobility limitations anymore will suddenly make that true.
     
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  8. REDY

    REDY Duty Caller

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    What makes me most angry?

    Criminality in Prague. So many crooks, thieves, drug users, beggars in the centre. It simply seems that centre was overtaken by foreign gypsies. The police simply ignores it or cant handle it because bad laws and lack of language skills.

    From recent for example Bulgarian couple giving note in bad Czech asking for donations because deafness. They have even nerves to have list of signatures by victims, mostly old people with a good heart. I was yelling on them in Russian but they just sweared back and returned next day.

    The parents giving junk food to their small children. I see it weekly in the shopping centre where are fast foods. Recently one big ugly fat woman was forcing cheesburgers to innocent about 4y daughter against her will. I have never confronted these people but sometimes its realy hard.
     
  9. warpus

    warpus In pork I trust

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    I was watching "Scam City" a while ago (I think it was that show, it could have been a similar one), and they were showing how people were taking advantage of tourists, by exchanging foreign money for "Czech money" in Prague, which was in fact Bulgarian (IIRC) money. I mean, the tourists should know better, but the cops don't seem to do anything to get those people away from tourist hot spots.
     
  10. Honor

    Honor Immortal

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    I have autoimmunity (thyroid) and neurological pain in my head + antidepressant discontinuation syndrome. I am currently in the "nobody can understand me and diagnose this stuff" phase. On top of the actual hell I am going through. It is not pretty. People who don't go through stuff like this don't know, can't know, can't understand. They look at you and think "come on now, you look fine!" when you never do ever feel fine. Everyone's reference for empathy is their own emotional experiences, and that sucks. I wish we actually had a way to truly share what we are experiencing at any moment with other people - an actual transfer of emotion. I think a lot of wars could be prevented that way.
     
  11. REDY

    REDY Duty Caller

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    Exchanging money on the street is one thing, but there are "0 commision" shops around the centre with exchange rates like 15 CZK for euro. Police do nothing, czech public does not care.
     
  12. warpus

    warpus In pork I trust

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    You would think that the police would want to go after the scammers so that the city is more friendly for tourists. Prague is getting a bit of a reputation for not being a great place to travel to.
     
  13. Lemon Merchant

    Lemon Merchant Superconductor Moderator

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    :lol:

    True, but in my hospital, there was always a six to eight week rotation by interns in our units. Shadow a psychiatrist, that sort of thing. I guess it depends on the teaching hospital, and the country that you're in.
     
  14. Lemon Merchant

    Lemon Merchant Superconductor Moderator

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    I wasn't criticizing you, Valka, or making light of your condition. I was referring to the fact that the thread had sort of drifted away from its original premise.
     
  15. Ryika

    Ryika Lazy Wannabe Artista

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    Maybe we're just talking past each other then, because nobody said that either (Or well, at least I didn't say that, Berzerker can probably speak for himself if he feels like it).

    What I'm saying is that in the majority of cases, exercise is a good thing - not in all, but most certainly in most cases - and that people generally tend to avoid exercise when they're already bad, when they should be doing the exact opposite thing, get up and push through what is painful at first, because it will decrease symptoms. Again, not in all cases, but generally? Yeah, most certainly. And not just because it makes you "more fit".
     
  16. Valka D'Ur

    Valka D'Ur Hosting Iron Pen in A&E Retired Moderator

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    That's what I did when I couldn't type or play the organ or even hold a pencil. These things were, and are, too important to me to let them not be part of my life. So yeah, it was intensely painful - imagine not having the ability to even press a key on a keyboard, and picking up a pencil like a 2-year-old because you've lost your dexterity.

    I've got plans for a major needlework project, and yes, it takes energy for that even at the best of times. We'll see how it goes, because this is something on the scale I haven't attempted in about 20 years.
     
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  17. Berzerker

    Berzerker Deity

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    Did bacterium cause the ulcers? Did the test require a biopsy of the stomach or was diagnosis easier? I have reflux and it aint going away, I just thought my habit of eating big meals and lying down caused the problem. What kind of meds are you taking? The acid reducers I've tried work but cause side effects, and now they're finding out the best ones are linked to kidney disease.

    The only 'assumption' I've made is exercise will increase mobility. And now I'm seeing Lyrica ads for fibro that claim exercise helps the condition.
     
  18. Valka D'Ur

    Valka D'Ur Hosting Iron Pen in A&E Retired Moderator

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    Check your PMs.
     
  19. yung.carl.jung

    yung.carl.jung Hey Bird! I'm Morose & Lugubrious

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    I remember another really good one. This one definitely makes my blood boil:

    People who unironically, purposefully use the term "Degenerate". They deserve to be strapped down and tickled in the wildest manner possible.
     
  20. yung.carl.jung

    yung.carl.jung Hey Bird! I'm Morose & Lugubrious

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    I completely agree with your assessment that a lot of advanced medicine/modern psychology/treatment is all about finding something to cling onto and desperately fitting it under some label known to the medical community (if that's even what you were trying to say, sorry if I am putting words into your mouth). There's some even better examples like "phantom pain", "restless leg syndrome" and so on where we have even less of an idea what's going on. I have my own theories about this, but that's for another time.

    More interesting is pondering solutions. Since I've quite read up on drugs and the American pharma industry, I think this should be one of the areas where we could succesffully reduce suffering. I cannot think of a single country in this world that pops out opiates or opioids (that are, in some cases, more than 1000x as strong as opium, far stronger than heroin..) like the US as if it was some form of treatment, when really it is only used to fight the symptoms, not the disease itself. A lot of "the basked of deplorables" suffer really bad. "White Trash" neighborhoods are riddled with opiate or amphetamine addiction. Funnily enough the worst drug of them all comes straight out of the hospital: Fentanyl. People die every year because they get the dosage wrong.

    The older I get the more I fear "progress", or rather the ideology of clinging onto the idea that scientific advancement and economic growth can somehow fix all of our problems. You don't have to be an anti-vaxxing paleo hippy to realize that some things are going sour. Digitizing one's social life makes one detached, studies correlate overt social media use with either depression or narcissism. Clickbait, 30-second-YouTube-videos, instant gratification have killed my attention span. How are you resisting the urge of getting trapped in the cybervortex?
     

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