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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.

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

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.

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 ..

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

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.

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!!!

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.

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..

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?

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

Such fail..

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.

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.

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!!!

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...

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

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.