Help Through Facebook..

Isis · **Joined:** Apr 2006 **Posts:** 4171 **Location:**

Can everyone that is on facebook please join this course:
http://www.facebook.com/?ref=logo#!/eve ... 09&index=1

This is the illness I have got, so please help with some awareness.

Thank you
:love:

Squirt · **Joined:** Jan 2008 **Posts:** 8186 **Location:**

Quote:

Fibromyalgia is often referred to as an "invisible" illness or disability due to the fact that generally there are no outward indications of the illness or its resulting disabilities. The invisible nature of the illness, as well as its relative rarity and the lack of understanding about its pathology, often has psychosocial complications for those that have the syndrome. Individuals suffering from invisible illnesses in general often face disbelief or accusations of malingering or laziness from others that are unfamiliar with the syndrome.

An invisible illness <_>

I don't use Facebook, but good luck with it

VforVendetta · **Joined:** Apr 2007 **Posts:** 1615 **Location:**

Facebook is a virus

woutR · **Posted:** Thu Apr 15, 2010 9:04 pm

Just curious: what happens once we are aware of this disease?

Noobs_Slayer · **Joined:** Jan 2008 **Posts:** 1196 **Location:** AioN

woutR wrote:

Just curious: what happens once we are aware of this disease?

Everyone will know about it and use condoms to protect themselves

Brago · **Posted:** Fri Apr 16, 2010 3:44 am

Guys be aware of the invisible disease. From what squirt i think quoted it sonds like you just think somethings wrong with you and your body acts that way. its a wall you got to break. :banghead:

Skyve · **Joined:** Apr 2006 **Posts:** 7328 **Location:** Canada

I'm confused

Isis · **Joined:** Apr 2006 **Posts:** 4171 **Location:**

Well guys cheers for the response, and can I just say that I hope you, or someone in your family will get this illness!!!

William-CL · **Joined:** Feb 2007 **Posts:** 7363 **Location:** N/A

<--This guy is a little confu-ss-ed

Isis · **Joined:** Apr 2006 **Posts:** 4171 **Location:**

For starters it is not a disease, you cannot catch it from anyone else. It is not a mental block, where you "think" you are ill, it is pretty much real!!! It is called an Invisible Illness because if you look at anyone with FMS, CFS, and ME, you would think they are healthy, it is not easy to diagnose, and will need to go through a lot of tests to rule out other illnesses to get a diagnoses.

I have ME, have had it for 7 years now. I wake up tired and go to bed tired, I never feel refreshed after a nights sleep. I get sore throats and headaches all the time. I get muscle twitches in my legs and get cramp during the night. My hands, feet, legs, arms, back, chest constantly hurt. I get exhausted pretty quickly, just from walking a flight of stairs. I have a bad memory, my speech is affected, my concentration is affected. I could probably go on for ever with my symptoms. This isn't all in my head and I am not lazy.

All I ask is for some awareness in these illnesses.

Zyphir · **Joined:** Jan 2010 **Posts:** 376 **Location:** Belgium

Bastet wrote:

For starters it is not a disease, you cannot catch it from anyone else. It is not a mental block, where you "think" you are ill, it is pretty much real!!! It is called an Invisible Illness because if you look at anyone with FMS, CFS, and ME, you would think they are healthy, it is not easy to diagnose, and will need to go through a lot of tests to rule out other illnesses to get a diagnoses.

I have ME, have had it for 7 years now. I wake up tired and go to bed tired, I never feel refreshed after a nights sleep. I get sore throats and headaches all the time. I get muscle twitches in my legs and get cramp during the night. My hands, feet, legs, arms, back, chest constantly hurt. I get exhausted pretty quickly, just from walking a flight of stairs. I have a bad memory, my speech is affected, my concentration is affected. I could probably go on for ever with my symptoms. This isn't all in my head and I am not lazy.

All I ask is for some awareness in these illnesses.

I've got about half of the symptoms you just said, should I feel worried now? It's just, that I am taking pills to sleep, which don't help, I'm still tired. I take pills for my legs which always hurt, and it doesn't help. My doctor didn't notice this. Hm ..

Isis · **Joined:** Apr 2006 **Posts:** 4171 **Location:**

Corevalue wrote:

Bastet wrote:

For starters it is not a disease, you cannot catch it from anyone else. It is not a mental block, where you "think" you are ill, it is pretty much real!!! It is called an Invisible Illness because if you look at anyone with FMS, CFS, and ME, you would think they are healthy, it is not easy to diagnose, and will need to go through a lot of tests to rule out other illnesses to get a diagnoses.

I have ME, have had it for 7 years now. I wake up tired and go to bed tired, I never feel refreshed after a nights sleep. I get sore throats and headaches all the time. I get muscle twitches in my legs and get cramp during the night. My hands, feet, legs, arms, back, chest constantly hurt. I get exhausted pretty quickly, just from walking a flight of stairs. I have a bad memory, my speech is affected, my concentration is affected. I could probably go on for ever with my symptoms. This isn't all in my head and I am not lazy.

All I ask is for some awareness in these illnesses.

I've got about half of the symptoms you just said, should I feel worried now? It's just, that I am taking pills to sleep, which don't help, I'm still tired. I take pills for my legs which always hurt, and it doesn't help. My doctor didn't notice this. Hm ..

It could be you just have a sleeping disorder, I wake up several times during the night.
What do you do, during the day and how old are you?

cpinney · **Posted:** Sat Apr 17, 2010 8:05 am

i think everyone misunderstood your illness as the one mentioned above were after you hear/see a illness you in turn show symptoms of that illness.

*BlackFox · **Joined:** Sep 2008 **Posts:** 7923 **Location:**

Bastet wrote:

and can I just say that I hope you, or someone in your family will get this illness!!!

Damn, that's Just bad. But I would never wish illness on anyone.
Anyway, I hope you get rid of this illness for good.

Azilius · **Joined:** Oct 2006 **Posts:** 4236 **Location:** CS:GO

This topic is proof people don't read before they post -_-

Such fail..

dom · **Posted:** Sat Apr 17, 2010 11:38 pm

Bastet wrote:

I wake up tired and go to bed tired, I never feel refreshed after a nights sleep. I get sore throats and headaches all the time. I get muscle twitches in my legs and get cramp during the night. My hands, feet, legs, arms, back, chest constantly hurt. I get exhausted pretty quickly, just from walking a flight of stairs. I have a bad memory, my speech is affected, my concentration is affected.

I literally have all these symptoms. The funny part is that I don't have time to start a facebook page about it. If I did, I probably would have more time on my hands and I wouldn't have these symptoms.

iGod · **Joined:** Oct 2006 **Posts:** 3728 **Location:**

Is it hypochondria or? D: uninformed

woutR · **Posted:** Sun Apr 18, 2010 8:12 pm

Bastet wrote:

Well guys cheers for the response, and can I just say that I hope you, or someone in your family will get this illness!!!

"GUISE I HAVE A DISEASE, IT'S IMPORTANT YOU UNDERSTAND!!!!"
-"What's this disease you speak of?"
"SCREW YOU GUYS, I HOPE YOU ALL GET IT TOO!!!!!!!1111"

We're going places here..

Isis · **Joined:** Apr 2006 **Posts:** 4171 **Location:**

dom wrote:

Bastet wrote:

I wake up tired and go to bed tired, I never feel refreshed after a nights sleep. I get sore throats and headaches all the time. I get muscle twitches in my legs and get cramp during the night. My hands, feet, legs, arms, back, chest constantly hurt. I get exhausted pretty quickly, just from walking a flight of stairs. I have a bad memory, my speech is affected, my concentration is affected.

I literally have all these symptoms. The funny part is that I don't have time to start a facebook page about it. If I did, I probably would have more time on my hands and I wouldn't have these symptoms.

I didn't start the group.

woutR wrote:

Bastet wrote:

Well guys cheers for the response, and can I just say that I hope you, or someone in your family will get this illness!!!

"GUISE I HAVE A DISEASE, IT'S IMPORTANT YOU UNDERSTAND!!!!"
-"What's this disease you speak of?"
"SCREW YOU GUYS, I HOPE YOU ALL GET IT TOO!!!!!!!1111"

We're going places here..

Its not a disease, and some of the other comments seemed to be uncalled for. You could just politely ask what this "illness" is all about, because you haven't heard of it before.

wootpops · **Posted:** Sun Apr 18, 2010 8:40 pm

so, i opened the page and saw a wall of text, i didn't bother reading. Some people are pretty big douchebags. Bastest mind giving me a paraphrase of what it is?

Isis · **Joined:** Apr 2006 **Posts:** 4171 **Location:**

wootpops wrote:

so, i opened the page and saw a wall of text, i didn't bother reading. Some people are pretty big douchebags. Bastet mind giving me a paraphrase of what it is?

I have explained in a post

And what I have got.

Mindy · **Joined:** Apr 2009 **Posts:** 654 **Location:**

Azilius wrote:

This topic is proof people don't read before they post -_-

Such fail..

+1

wootpops · **Posted:** Sun Apr 18, 2010 9:40 pm

Bastet wrote:

wootpops wrote:

so, i opened the page and saw a wall of text, i didn't bother reading. Some people are pretty big douchebags. Bastet mind giving me a paraphrase of what it is?

I have explained in a post

And what I have got.

yeah i went back and read.

Timmeh · **Joined:** Aug 2007 **Posts:** 566 **Location:** England

I, myself know were you're coming from; I've suffered from headaches for almost 2 years, I've spoken to numerous doctors, visited a neurologist, although, to no avail. An MRI scan has been conducted and the results proved inconclusive.
About the tiredness, do you feel quite numb also? For example, do you feel like you're in a haze?
Because this is exactly what I feel.

EDIT: Just got FB again, will join it now.

Hope you get some relief from this soon ~

Isis · **Joined:** Apr 2006 **Posts:** 4171 **Location:**

I have a little exercise for some of you guys to do. As long as you are healthy that is.

Quote:

A short exercise for the healthy person.
You have nothing to prove, only something to become aware of.
If you are macho, proud, or aggressive, you are likely too weak.
It is a simple exercise. If you feel too strained, STOP.
Try and do this for an hour.
Persons with CFS-ME live this 24/7.
They don't have a Choice, as you do.

Every time you make any physical exertion,
--- hold your breathe.
From before you begin, until you end, HOLD your breathe!
Moving your foot, hand, turning your head, moving ....
Talking will have to be allowed. Seeing and hearing are OK.

Squirt · **Joined:** Jan 2008 **Posts:** 8186 **Location:**

Bastet wrote:

Well guys cheers for the response, and can I just say that I hope you, or someone in your family will get this illness!!!

Eh? I think this comment was a bit uncalled for...
Everyone that posted said nothing negative about your topic...

Mindy · **Joined:** Apr 2009 **Posts:** 654 **Location:**

Squirt wrote:

Bastet wrote:

Well guys cheers for the response, and can I just say that I hope you, or someone in your family will get this illness!!!

Eh? I think this comment was a bit uncalled for...
Everyone that posted said nothing negative about your topic...

They questioned the topic. That was uncalled for

woutR · **Posted:** Mon Apr 19, 2010 9:49 pm

I am not questioning the illness the pains or all the other downsides, I am just doubting the effectiveness of this approach.
As this illness is almost completely a mental state, promoting awareness of the illness would have a detrimental effect on potential 'sufferers'. They now think there's really something wrong with them and they enter the vicious circle. This attempt at promoting awareness is, imo, nothing more but a scream for sympathy and empathy. This will not help or improve the situation for anyone.
I am certainly not denying your pains and problems are real, but I think this approach is bad. There is no end goal, there is no gain. We should all sit here and be amazed how you live your life every day with these pains? We can all go and say: "aww, that sucks for you

" and it probably does(!), but what does that help? It won't improve your situation and it doesn't improve mine.
When life gives you lemons you make lemonade, you don't show your lemons to the world and ask for a hug.

dom · **Posted:** Tue Apr 20, 2010 2:40 am

woutR wrote:

don't show your lemons to the world and ask for a hug.

Azilius · **Joined:** Oct 2006 **Posts:** 4236 **Location:** CS:GO

woutR wrote:

I am not questioning the illness the pains or all the other downsides, I am just doubting the effectiveness of this approach.
As this illness is almost completely a mental state, promoting awareness of the illness would have a detrimental effect on potential 'sufferers'. They now think there's really something wrong with them and they enter the vicious circle. This attempt at promoting awareness is, imo, nothing more but a scream for sympathy and empathy. This will not help or improve the situation for anyone.
I am certainly not denying your pains and problems are real, but I think this approach is bad. There is no end goal, there is no gain. We should all sit here and be amazed how you live your life every day with these pains? We can all go and say: "aww, that sucks for you

" and it probably does(!), but what does that help? It won't improve your situation and it doesn't improve mine.
When life gives you lemons you make lemonade, you don't show your lemons to the world and ask for a hug.

Promoting awareness also promotes charity towards studying said illness. If that's not obvious I don't know what is. Do you go to a run for cancer and yell at them for promoting awareness?

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