what are peoples experances and how did you over come feeling alone x
Hi Kelly.Welcome to the family.
Signing into this group has taken away that dreadful feeling of being alone...not being understood. It doesn't really help much with the world around me...friends,family but this group has really helped me feel like i'm not losing my mind. When I first joined,I had been recently diagnosed(March 2013 but have been suffering for years) and when I posted for the first time the flood of response I received was extremely comforting. There are so many wonderful and loving people who do whatever they possibly can to help us better understand this illness. There are so many weird symptoms other than pain and for me, it really helped to hear others talk about things in detail. You can ask absolutely anything and chances are,theres someone,if not many, who respond and can relate.
I understand the depression and feelings of hopelessness and isolation than accompanies this illness due to the fact that so little is known and people simply cannot understand. I experienced such a sense of comfort when i joined because the people who live with it every day are really the only ones who can offer that kind of understanding. We all experience the same frustrations. the constant pain,fatigue and at times complete anger at the fact that this is not a new illness and because it's not "fatal" it seems like the we get shoved onto the back burner.
You are absolutely not alone...we are here for you. Thank you for speaking out and please continue to do so. It's good for the spirit.
Hugs
Carolyn
Thank you for your kind messages. It really makes all the difference having people to share storys with and people who know exactly what fibromyalgia is about. For years people just thought I was crying for nothing even the doctor s laughed when I said I felt lije my head was going to explode. Fibromyalgia is life changing and we need to stand up and be heard. We need new treatments and therapys but mostly we need to be understood
My family has found it hard trying to understand why I get so poorly has anyone else had problems explaining to loved ones
Hi kelly, i quite like to be alone when its really bad. I am quite solitary anyway as a person . I am a lucky girl as i have great understanding family and friends. But i find the well meaning can be as harmful and draining (unintentionally) as the ignorant. My best friend is a star but unless you feel it you cannot truly know.
Isolating ourselves is a real problem. Even with all the support i have i have done it a couple of times. You are not just an illness and you are still you. You need a life outside it. Fellow sufferers are great they understand but dont write off your friends that cant understand they still love you.
Being isolated with fibro makes worse. I was so alone when joined this site i was the closest i have been to suicide since my accident. The pain hasnt changed just how isolated i was. You need the warmth only other people can give you because its bloody cold and grim inside the pain. Sorry if this is a bit depressing or preachy but thats how i see it.
As too fighting for understanding i dont know about the US but we need to be believed first. I blame the medical profession. Count me in for the fight though.
Keep your chin up
Nicola xxx
Thanks Nicola, I dont mind been on my own when fibro fog kicks in I have to lie in a dark room in silence. Im newly dignosed so maybe after time my family will understand that its not as easy just to push thro it, there’s only so much you can do. It really helps talking to people that understand. Thank you for your support im really greatfull xx
Ah im so glad you have a new puppy. I love all animals I have a cat and a dragon. Im glad you hawve found comfort in this site. I only joined two days ago and ive felt so welcome I haven’t smiled this much in months. This site has been a blessing everyone is so kind and understands. Keep smiling huni