How Do You Describe Fibromyalgia? | MyFibroTeam

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How Do You Describe Fibromyalgia?
A MyFibroTeam Member asked a question 💭

How do you describe fibromyalgia to strangers or people who ask what it is?

It has an extensive range of symptoms and problems associated with it.

I just pin it down to a faulty nervous system 😊

posted June 24, 2017
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A MyFibroTeam Member

I always say that our illness is like a cross we have to bare , the more pain the heavier the load. I have got to an age, that if people dont understand, then its there ignorance not mine. We have come through a time, when even the doctors didnt believe in its existance, its only now that we can all get together as a voice for us all to say, yes it does exist. And thank god that you dont have it, there will always be those that will never understand, the worst is when it is our own family members, because if they dont stand with you, its a lot more darker and painful world. We stand together, from every part of the globe, never to let fibromyalgia be a forgotten word xx ivy

posted June 24, 2017
A MyFibroTeam Member

I just read the top 10 worst pain in the world that people feel, and yes fibromyalgia is on the list. We all knew that! Oh, except if a man gets sick with a cold or something. Lol

posted June 24, 2017
A MyFibroTeam Member

I say it feels like the worst Flu you've ever had . Aches .pains. lethargic. No strength, and I feel that way ever single day. I say the last part really slow....for dramatic effect. :)

posted June 24, 2017
A MyFibroTeam Member

Linda boooo
Bahaha :)
Or a woman breaks a nail :)

posted June 24, 2017
A MyFibroTeam Member

I don't tell people I don't know that I have FM to be honest. There are people I know (relatives) who don't know that I have it either. All they know is that I had a very nasty virus years ago which has left me unable to walk properly, needing a wheelchair or disability scooter to get about with. That my husband has to look after me and does nearly everything for me. That I have a lot of pain which I take strong pain relief for along with a host of other symptoms. The reason I don't tell people about FM is because of the extremely negative reactions I had when I was first unwell in 1998 and for the following years. I was treated appallingly by some medical staff and I will no longer allow myself to be put through that again. My husband, children, close family and my best friend know that I have been diagnosed with FM. One of the biggest problems as I see it is that it seems that if a doctor can't find a reason for someone to be hurting then they diagnose them with FM. My own doctor even said more or less the same thing to me a few weeks ago. When I was asking her for the date I was eventually diagnosed after many years of being in so much pain and she told me whilst talking to her about it that the doctors use the label FMS when they've run out of everything else. Which explains a lot to me as have two close family friends who have it and they are sisters. There symptoms are very very different not only to mine but also to each other!!! How do the doctors explain that? I have been in a wheelchair for years and been very disabled by my FM whereas they work, albeit one works full time and the other one works 10 hours a week. This sort of thing makes it very difficult for people who don't have the condition to understand FM, and how can I explain it to someone when even I don't understand it either?

posted June 25, 2017

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