What is the straight dope on fibromyalgia?

[lee]

All of this is clean room stuff is fairly far removed from my experience with fibromyalgia, and for the most part far removed from what others in this thread have reported of their own experience.

[Huerta88]

@aruvqan

Dayum, she is wearing freaking blue jeans, long sleeved polo and what appears to be a standard fibrefill vest. Nothing she is wearing stands out as looking like hypoallergenic organic cotton clothing. Hell, it even look slike her damn shed is lined with Olin Chem foam insulation [those blue panels are fairly unmistakable] and I am amazed her tin hattism doesnt also make her hypersensitive to aluminum …

You know, I picked up on that too. She only “needs” to wear the organic cotton vestments during acute episodes? To avoid those acute episodes, wouldn’t you wear them everywhere, even outside the chamber? I mean, you’ve already paid for them. It just reinforces that the shed is her “Happy Place” for when her many insecurities catch up with her/she doesn’t feel she’s getting enough attention.

I would like to convene a SAB to offer free courses to the media in scientific literacy 101. Every time an article is published that even entertains the possibility that someone like this has a “mysterious organic illness,” as opposed to being a sad deluded lonely crank, it encourages those tendencies in others. It’s kind of like doing a point-counterpoint post-debate analysis of the argument that crazy vagrant on the bus bench had with the aliens lodged in his kneecap.

[aruvqan]

@Huerta88

You know, I picked up on that too. She only “needs” to wear the organic cotton vestments during acute episodes? To avoid those acute episodes, wouldn’t you wear them everywhere, even outside the chamber? I mean, you’ve already paid for them. It just reinforces that the shed is her “Happy Place” for when her many insecurities catch up with her/she doesn’t feel she’s getting enough attention.

.

NO shit…

Thankfully I forgot to make a tin hat … I happen to know that If mrAru or I ever ended up with hypersensitivity, we would turn the whole house into a white room equivalent, filtering the air and water, overpressuring the place to keep air out … changing the furniture and whatnot to whatever we needed to, and use the canning kitchen in the barn to subprocess foods to make them safe to bring into the house.

Any doctor dealing with hyper allergy like that should tell you how to change your environment to be suitable. If they dont suggest making a no shit white room instead of a garden shed I would really question their suitability to continue treating me…

[outlierrn]

@Wile_E

Saying that you suffer from a particular disease is a red flag? So if someone says they suffer from diabetes or high blood pressure then it’s probably all in their head? Using that term is commonplace for a multitude of diseases and conditions.
I was actually going to use the term Fibromite as many people with fibro call themselves but I didn’t think most people would understand it, but saying “particular disease sufferer” people do understand.

It’s not so much the word suffer, as the affect. I have patients go down their litany, ‘and I suffer from chronic back pain and I suffer from migraines and I suffer from every vaguely defined disease that can’t be cured that I can find on the internet and that’s why I’m an unhappy and unproductive person it’s not my fault I have a condition and I’m allergic to every medication that treats my symptoms without getting me high.’

This is not everybody, I’m not saying it’s you, I’m saying it constitutes a statistically significant portion of the people that present with diseases that are not yet well defined. Some people will grab anything which allows them not to be responsible for their lives, they will blame any external thing, their spouse, their parents, the patriarchy, their bodies. It’s a factor in dealing with diabetics too, but because the disease is well defined, it’s a much smaller number of patients. People are like that.

[Cazzle]

@outlierrn

It’s not so much the word suffer, as the affect. I have patients go down their litany, ‘and I suffer from chronic back pain and I suffer from migraines and I suffer from every vaguely defined disease that can’t be cured that I can find on the internet and that’s why I’m an unhappy and unproductive person it’s not my fault I have a condition and I’m allergic to every medication that treats my symptoms without getting me high.’

There’s a word of difference between “suffer from” and “suffer with”. People were jumping on us for saying “suffer from fibromyalgia” and “fibromyalgia sufferer”. You’re describing “suffer with” - it’s the one that comes with violins and martyrs.

To pinch the usage note from the Free Dictionary

@The Free Dictionary

Usage Note: In general usage the preferred preposition after suffer is from, rather than with, in constructions such as He suffered from hypertension. Ninety-four percent of the Usage Panel found suffered with unacceptable in the preceding example. In medical usage suffer with is sometimes employed with reference to the pain or discomfort caused by a condition, while suffer from is used more broadly in reference to a condition, such as anemia, that is detrimental but not necessarily painful.

(bolding mine)

As I said earlier, I had no idea that “suffer from” or “sufferer” were considered such loaded terms. Obviously I know what the word “suffer” means, but in relation to a medical condition I’ve always heard it used as a word that essentially means “has [a medical condition]”. I certainly never use it to invoke sympathy or to imply “suffering, agony and despair, woe is me!”, and the idea that people would think that I was trying to underscore my “suffering” is one that simply never occurred to me. This thread was a real eye opener for me because it suddenly had me questioning my use of a word I’d never given any thought to previously. However, I’m going to keep using it because “fibromite” just bugs me and “fibromyalgia haver” sounds stupid and “fibromyalgia patient” might make people think I’m trying to imply I’ve been patiently waiting for someone to cure my suffering.

[Mister_Rik]

@Cazzle

As I said earlier, I had no idea that “suffer from” or “sufferer” were considered such loaded terms. Obviously I know what the word “suffer” means, but in relation to a medical condition I’ve always heard it used as a word that essentially means “has [a medical condition]”. I certainly never use it to invoke sympathy or to imply “suffering, agony and despair, woe is me!”, and the idea that people would think that I was trying to underscore my “suffering” is one that simply never occurred to me.

It’s related to the advice given to speakers and writers: Brevity - use as few words as possible. In this case, and many others, the more words you use to describe something, the more room you allow for misunderstanding and misjudgment. Compare these two true statements about my own condition:

1. I have bad knees.

2. I suffer from/with bad knees.

Both statements provide the same factual information, but the second presents the information along with a “feel sorry for me/I feel sorry for myself” aspect. This is the exact difference between a lady my mom was friends with years ago, who had an unusually large number of specific food allergies, and my roommate who “suffers with” a wide array of vaguely-defined ailments and sensitivities. The lady adjusted her diet, paid attention to what she ate, and got on with her life. My roommate works his ailments into nearly every conversation and manipulates everybody around him into catering to his “suffering”.

[outlierrn]

@Cazzle

There’s a word of difference between “suffer from” and “suffer with”. People were jumping on us for saying “suffer from fibromyalgia” and “fibromyalgia sufferer”. You’re describing “suffer with” - it’s the one that comes with violins and martyrs.

To pinch the usage note from the Free Dictionary
(bolding mine)

As I said earlier, I had no idea that “suffer from” or “sufferer” were considered such loaded terms. Obviously I know what the word “suffer” means, but in relation to a medical condition I’ve always heard it used as a word that essentially means “has [a medical condition]”. I certainly never use it to invoke sympathy or to imply “suffering, agony and despair, woe is me!”, and the idea that people would think that I was trying to underscore my “suffering” is one that simply never occurred to me. This thread was a real eye opener for me because it suddenly had me questioning my use of a word I’d never given any thought to previously. However, I’m going to keep using it because “fibromite” just bugs me and “fibromyalgia haver” sounds stupid and “fibromyalgia patient” might make people think I’m trying to imply I’ve been patiently waiting for someone to cure my suffering.

you might note that I specifically said it’s NOT the word, it’s the AFFECT

They could say I have this I have that and I have the other
I struggle with this I struggle with that and I struggle with the other
they could be speaking a foreign language and I still suspect we’re not going to find an answer for them. I didn’t see anybody jumping on anybody

[tygerbryght]

@Mister_Rik

It’s related to the advice given to speakers and writers: Brevity - use as few words as possible. In this case, and many others, the more words you use to describe something, the more room you allow for misunderstanding and misjudgment. Compare these two true statements about my own condition:

1. I have bad knees.

2. I suffer from/with bad knees.

Both statements provide the same factual information, but the second presents the information along with a “feel sorry for me/I feel sorry for myself” aspect. This is the exact difference between a lady my mom was friends with years ago, who had an unusually large number of specific food allergies, and my roommate who “suffers with” a wide array of vaguely-defined ailments and sensitivities. The lady adjusted her diet, paid attention to what she ate, and got on with her life. My roommate works his ailments into nearly every conversation and manipulates everybody around him into catering to his “suffering”.

I’m not sure that everybody who makes statement 2 is intentionally soliciting sympathy. It all depends on how they learned to express themselves. It doesn’t take long to tell if somebody has their own perpetual pity party, though. But the comparison you make is still valid at base.

This is an issue for lots of us who do have chronic conditions. You’ve noted, I hope, that most of the people in this thread who said they had fibro simply stated how they cope with the situation. It’s how I deal with my chronic pain. It’s a fact of my life (like my food sensitivities, only they’ve been there since before I can remember, and I have clear memories going back to around age 3), but I try not to make my problems a fact of anyone else’s life. They are my problems, and I figure that other people have their own problems. The only time either comes into my conversation is if they’re asking me to dinner, or have reason or desire to know about them.

As I’ve said before on this site, I do know people with worse problems than mine. I have a great deal of sympathy for their situations, and am so glad I don’t have their problems. Of course, none of the people I know in such situations makes an issue of their problems, either, not even the one whose body is gradually ceasing to function, with her trapped inside, at age 45.

[Mister_Rik]

@tygerbryght

but I try not to make my problems a fact of anyone else’s life. They are my problems, and I figure that other people have their own problems.

I recently heard somebody say that the 80/20 rule applies to telling people your problems: 80% don’t care and 20% are glad to hear you have problems