Are you sick of people fobbing you off making you feel like our going crazy i want us to sand together and make fibromyalgia suffers heard any ideas to get th word out would be great xx
Its very frustrating. The diease is invisible and to many we are to. Im goinh to make it my quest to be heard but wear to start is hard. We need to convince medical professionals that this is not something they can just mask with painkillers there’s a cause for everything we just have to keep pushing for a result xx
There are a lot of people that have Fibromyalgia. Unfortunately I feel like there's only a small percentage of the community that would fight for it to be taken seriously. Some people don't want to believe that they have it and others don't want to tell others they have it for fear of backlash. You also have to consider the fact that a lot of us are in pain constantly. Some days I can't even get out of bed.
Next month is Fibromyalgia awareness month so they'll probably be an increase in activity surrounding the disorder. The problem is, when May ends, the awareness/activism shouldn't. It's going to be up to us, the community, to make the medical community take it seriously.
Hi blast 75 thanks for you message, I also spend days confined to my bed. Do you feel the world just goes on without you? I get so lonely looking at the same four walls. We may not be able to make a difference alone but if we all come together we will be heard!! be strong and keep smiling xx
Yeah, today's been one of those days. Between the fatigue and pain, I've been in bed most of the day.
Last night I decided to get out so I did. Some people from church went bowling, well I'm not much of bowler these days. I'm not inflicting more pain into myself than I want so I just watched everyone else bowl and took a few pictures on my phone. It was nice to get out, and I am so glad I was around understanding people. I don't like going around telling people what I have but because I just recently was diagnosed and I have been truly in the mind set of I finally found out what the #@%& is going on with me and well it has cleared my heart out about myself. This whole time that I didn't know what it was has left me very negative about myself. And now to face all those people that I have been steering myself around to keep from being under their sharp tounge that judges. Because it is in all who don't suffer to not believe those who do. Well I'm glad next month is FIBROMYALGIA month !!!!!!!!! So let it me heard everywhere it does exist. I read recently that about 5% of the population suffers with this, and I believe that is over 1,000,000,000 people. I think it is enough people to be ill with something for others to take seriously. I would think doctors would have a field day with something that is so baffling. Pain killers are the only thing there is to help us get through our pain. I prefer to not take them. The side effects are greater than the pain or equal to the pain. I do better with massages and walking. I wish medical insurance would cover those costs or make them more affordable for us.
I strongly agree. Enough is enough why shud we be made to feel like aliens. Just because you cant see it dont mean it dont exsist xx
I brought my daughter to synchronized swimming...all the other moms are so involved. One of them,who i've known outside of the pool were talking. She knew i was having problems. The amount of stairs to get to the viewing deck has me in a complete sweat and when I enter the pool area,it's like a sauna. It was obvious by looking at me! I'm sick! There I was , out of breath,my face glistening with sweat and feeling sick to my stomach from overexertion combined with the smell of chlorine. So there we were. She asked me what was wrong...I reluctantly told her that I was diagnosed with FM. She LITERALLY TURNED AWAY FROM ME AND CONTINUED TALKING WITH THE OTHER MOMS. NEEDLESS TO SAY...I WON'T MAKE THAT MISTAKE AGAIN! I WAS SO HUMILIATED! IT MADE ME FEEL STUPID AND LIKE AN OUTCAST. So now I only stay when theres a water show and I sit off to the side...AWAY from the others.
Just an example of the social ignorance and how devistating it is to be made to feel like nobody cares. Especially when it's someone i considered to be a friend.
All my friends turned there backs on me to it just proves how many of of us go through social torture. People think im making it up or they say it just depression. At least we can support each other xx
I totally agree we need to be heard. Sometimes I am hesitant to even tell someone it is why I am skipping out on something or why I don't look particularly happy or whatever just because I know the reaction I will get. Even doctors do it. I did see an osteo doc for shoulder / arm pain last week and he said it was severe tendinitis and I told him I have fibro and I thought that's all it was at first but it is unbearable now and he said fibro can cause things like that to be much worse for the sufferer than normal and didn't even make it sound like it was because I can't handle pain or it was in my head. He just said the tendons and the muscles will flare with this more easily and severe than for people who don't have it. I appreciated his concern. It's unusual. I do the best I can daily...I know we all do. It's just harder to get out of bed some days and getting anything done is almost impossible but we have to sit here like nothing is wrong because others can't "see" it. Maybe someday...
Kelly,
The world does go on with out me. I know this, and there is nothing I can do about it. I can't keep up and the world doesn't want to slow down. There are times I am so grateful I don't have to keep up. And I also say that I don't have to keep up. I do what I can do. I think it is better to be looking at the four walls then trying to do more than I can. I know how easy it is to set of a flare.
It pains me in my heart to have my family always thinking I'm telling stories about the pain I'm in. My body pain is hard enough to deal with. Most of my life I have always had my father and sisters say, why do you always look sad? don't you smile? so then I feel I must explain. But when I do, then I'm making up stories, and its not fair that you don't have to do the same chore as I. My family leaves me in the mud. I pull myself out and ask again for help, then I'm making more stories up. I'm back in the mud and not asking any family to help this time. I don't deserve to be treated like that anymore. They should of been trying to help me live with my limitations and showing me how to survive all day while I try and live a good quality of life through out my day. Instead I got the best of your making up stories, go to your room if your not going to wash the dishes. Oh yea, I'm how old and that still goes across my mind?? !!!!!!!!!! If there is an ear let him or her listen to who their neighbors are, co-workers, brother, sister, parents and friends. Maybe this year, during this awareness month, more people will learn about our illness. And the news will get out there to those who are not in belief that the illness exists.