I apologize for skipping out for a few days. I had a bit of a migraine and then a spot of good news! I feel it was an even trade. A book of mine is getting published! Hurray! Good things can happen with a lot of hard work.
Especially feeling Fibro Free!
Today's topic is touching on a subject I previously posted about titled The Dangers of Support Groups. I talked all about the negativity and the impact those pages can have on the positive Fibro Fighters.
Part of the reason for a lot of negativity is that many people who have Fibromyalgia have other conditions that make their Fibro more painful. I don't have statistics with me but I would say over half of Fibro Sufferers have a secondary condition. I refer to these Sufferers as Fibro Plus.
I am a Fibro Plus sufferer and because of this, I know how difficult it can be to keep your secondary conditions separate from "classic" Fibromyalgia. You hear us rattle off all the things that we have on appropriate threads but for the most part, when we answer a specific symptom question or talk about our pain levels and our mobility capabilities, you don't hear anything about those extra conditions we suffer from which might be causing these excessive cases.
Thus, the confusion begins.
When looking through this blog you will find a monster list of symptoms that are/can be Fibromyalgia related. But how many other conditions out there can have these symptoms? How many are linked to common, short-lived, illnesses. One of the Fibro symptoms listed is post nasal drip which I have. It's annoying! It's also a side effect of having allergies or the common cold.
These lists aren't made to freak out about but soothe. "Don't know why you're having post nasal drip all the time? Well according to the monster list, it *could* be Fibromyalgia." That's the way you have to think about it.
Now, back to my original point...
Fibro Plus Sufferers (those with more than just Fibro) will comment on a symptom thread, and will bring unnecessary panic to those who have basic Fibromyalgia. For Example.
Fibro Sufferer 1: "I have sharp pains in my breast, anyone have this?"
Fibro Plus Sufferer: "I have had pains in my breast for 15 years. My doctor finally found a swollen milk duct and then a lump beneath that. The biopsy showed that it could be cancerous so I had surgery and am hoping I will recover well."
Yikes. The Fibro Sufferer just wanted to know about breast pain, which can be one of several Fibro symptoms. (Fibrocystic breasts, or even just extreme PMS which we can all suffer from. It is one of the reasons why magnesium is so important.) Instead of getting a "good" answer, Fibro Sufferer 1 got too much information. The Fibro Plus Sufferer just caused undo stress and gave an improper diagnosis because he/she was more intent upon sharing their own pain story than giving, what I call, TRUE FIBRO ADVICE.
Now, to clarify, there is nothing wrong with saying something like.. "T
It's all in how we word things.
I get really angry when I see people respond incorrectly because I remember when I first had Fibro and didn't understand much about it, I would read responses sent to me and freak out. "OMG I'm going to develop MS? Cancer? RA? I'm going to get so bad I'm going to be wheelchair bound?"
Then I realized after extensive research and study what I'm now telling you.
Most Fibromyalgia Sufferers (All sufferers from Classic to Plus)....have no idea what they're talking about. (Come on! We all have to swallow our pride and admit we are not 100% sure of anything except that we hurt!)
Fibro is so different for everyone! Also...Fibro Plus sufferers are NOT a good source of information unless they are able to differentiate their Fibro from their other conditions. (This applies to me too from time to time, though I do often refer to the common symptom list before responding to anyone with advice.) For example: When someone asks me about pelvic pain its hard for me to respond accurately because I suffer from IBS.
Please, my friends, remain positive and take the advice you hear with a grain of salt! Even that which comes from my mouth. The only thing I want any of my readers to believe is that anything is possible, including feeling fantastic!
All my best and hopes for health!
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As a FibroPlus sufferer, it has been painfully difficult to dissect my FMS from my other conditions. I am very closely attuned to my body, probably more so than the average person. So I am able to say with reasonable certainty that this or that symptom is from FMS. Not every FibroPlus sufferer has that capability, so I would ask that you be tolerant and continue to teach all that suffer so they may be able to discriminate effectively. Congratulations on your book publication.
ReplyDeleteI'll fix some of the wording on this blog post as it comes off as brisk and flip and insensitive. In it you can tell how annoyed I get by the myriad panic emails I receive fixing the damage done by those who give "end-of-the-world" advice.
ReplyDeleteI didn't mean to exclude myself as a Fibro Plus either so I apologize.
I do, however, stand by my assessment that Plus Sufferers are less likely to revert to typical Fibro knowledge when answering a question or responding to a plea for advice. We all go with what we know so a conscious effort has to be made and our secondary conditions must be taken into account before responding with health advice to others.
It's not just difficult, Narya, it is nearly impossible to keep symptoms straight as a Fibro Plus Sufferer. The point of my blog entry isn't to discriminate against Plus Sufferers just to caution about the advice Fibro Plus Sufferers give.
On average, we can't tell which symptom is our special condition and which isn't until we know the ins and the outs of Fibro and how it relates to our "Plus" status.