Hi, I think this is a very supportive site and I am happy I found it. I only get on here when I am feeling down or having a bad day. It helps to know there are people going through the very same thing, and truly understand. With that said, I did notice one member getting very upset about pixe and I agree that any type of stress really takes it tole on us. I can understand her need to help. I mentioned to someone on here that I wanted to help raise awareness, so I am going to organize a walk for people with fibromyalgia in my home town. All will be welcome to walk or ride ( I will provide wheelchairs if needed ). My point is I try to do positive things and to have someone negatively dash your hopes is very upsetting, this person problem didn’t think before she spoke. Maybe there is a lessen here for all. Hugs, Leanne
It’s a great idea Leanne. A few months ago some of us were discussing having a fund raiser walk, and we got many some good and funny suggestions. Many of us said it would probably fall on a day where we all are flaring and couldn’t make it. I said that we could sit on the sidelines and watch those walking and hand out treats and water. What we need are people who don’t have FMS to take charge and organize it so the stress of planning wouldn’t burden someone with FMS. There was talk of contacting known celebrities who have it - today is a foggy one so without looking back and finding the discussion, I can’t remember who they were.
The hope was to increase awareness - especially among the medical environment- that FMS needs to be acknowledge so it doesn’t continue to be one of the invisible medical conditions! Keep us up to date with your plans!
Hi Leanne,
This is a great site, and we are glad you found it too, so glad to have you with us!
We are a good group. Best wishes.
i know what you meant about being down days. I am tryig so hard to be upliftng and prayer is so important to me. Today I am being hit from all sides. I just have that feeling that people that are important to me really do not believe how sick I am like I am putting on Sometmes I doubt my own self and sanity and I have had Fibro and CFS since 1996. It is because I stay away from people when I am under attack,
Do you know why I am having to type so slow & hit the letters several times.
Very well put, Leanne, and thank you. I know that quite a few members did write to Pixie to offer their support. I totally agree with you that adding stress onto people who are so sick is a bad idea on here and should be avoided. And your walk is a wonderful idea but I don't know that many fibro people will or could attend. But PLEASE let us know how it worked out. Maybe some of us could organize something similar in our own towns if there's enough interest. And donations could be made and sent to some place researching fibro. Or donations don't even need to be taken. Just raising awareness is a great first step. Well done, my girl, well done!
Cheryl,
Hey there, I'm sorry you're having a bad day. And no matter how close your loved ones are to you, no, they truly aren't going to understand how sick you are and may doubt you from time to time. It happens, from time to time. This illness is so mystifying that it's no wonder that even doctors are flummoxed by it. But yeah, it stinks. And no, you aren't faking it or overblowing it, it really and truly is as bad as you say it is. And probably worse, because probably most of us tend to downplay the amount of pain we're in.
Staying away from doubters when you're feeling badly is a smart maneuver. We don't need to be around the ignorant when we're doing poorly.
You know, in regards to your last sentence, that happens to me too, Cheryl. But only once in awhile. Does anyone else have problems with your typing sometimes, going too slow and hitting letters several times? And also making gazillions of errors while typing, while not usually having that difficulty? It's certainly weird.
Hi Leanne, I’m glad you have found this site also , it’s been a blessing for me !! I love your positive outlook, and trying to raise awareness is wonderful. We were also recently writing letters to dr. Phil, dr. Oz, Ellen, and anyone else that would listen to our plea for raising awareness.
I hope your idea for a walk turns out positive…
Hugs & blessings
dee
hi Leanne i am kinda like u. when i am not feeling well i get on here and see what i can do to help others. i will read through the dissicusions and see where i might be able to offer support or suggestion to help. this in turn makes me feel better cause i am helping others. this site is a God send.
its great that u r doing a walk in your hometown. i will pray that u get a big turn out. many hugs
Hey, good to hear from you. I hope your migraines have subsided some. I know what that is like.
I used to have them every single month. At 36 I had a hysterectomy, I only get them a couple times a year. I don’t recommend that is the answer for everyone. Thank you, for your support it means a lot, I really want to do something to raise awareness. You see my poor mother had it, they didn’t know what it was back then but I remember as a teenager seeing how much pain she was in. I also have a brother who has it and an older sister. Thanks again for your support, after all we can only hope. See you in the Chat Room. Hugs, Leanne
Hi Dee, Thanks for your support I appreciate it. I have so many ideas for it. I used to organize pro
Tennis tournaments, so I know how to get sponsors, which will pay for t- shirts and wrist bands. My Rheumatologist has already said she will be a sponsor so right now I am in the organization process. I am recruiting Non- Fibros in the walk. I know some people with Fibro will be unable to do a lot of walking. Anyway thank you for your positive comments, Big Gentle Hugs to you, Leanne
Hi Leanne, I to come here when I'm having a bad day or need information. What town are u in. Would love to join
in the walk to help to raise awareness on F/M. I live in Vancouver, WA, but have the means to travel all over.
Hope u have a beautiful weekend. Hugs Donna Lynn
OMG Leanne I live in Vancouver WA also!
I understand that feeling of thinking the people closest to you don’t really believe you feel as bad as you say…it’s SO frustrating because I feel like if I complain I’m a big whiner and if I don’t they think I feel fine and wont understand.it’s a tough place to be. I’ve had it for 24 years and still feel this way…I don’t let it bother me as much as I used to but I would be lying if I said it didn’t bother me at all. I think we all care what people think, especially those we love! I’m always here and I understand but yes, it sure would be nice to have the people you share your life with understand! That’s who we really need the most. Ugh-- anyway, just wanted to say I relate big time!
Hi Leanne.
Sometimes people speak or in this case write before thinking. I’m not sure what it was all about. But we should never take away anyone’s feelings or ever make anyone feel that their hopes are not great. Even if we disagree one should not respond- my opinion.
Anyways I think that it is awesome that you are trying to make a walk for awareness for fibro. So many people still think it is something that one makes up in their own head. I think the moto of fibro should be walk a day in my shoes.
If they only knew. Not that I would want them to feel the pain and fatigued that I feel tonight after a long day at work and now chasing around my wild four year old, and the stress of my credit card being fraudulently used so now it’s cancelled and I have to wait for a new one… And all the other daily things that I worry about, as my neck tightens and all I want is sleep but now I only sleep like four hours at a time. Ugh SORRY!!!
Good luck on your walk 
Joy
Sorry Justamom (which isn’t true). My neck muscles are so tight, I’d like to take a knife and cute them open for relief. I’m having a greater opcipital nerve block Monday. God Bless.
Tricky123 I hope Mondays procedure goes well for you!!!
Thank you for your comment. I know I’m not just a mom’ but I think it is one thing that I can honestly say that for almost 23 years I’ve done my best at. But I’m a wife, a daughter, a friend. a medical assisting instructor, which I love, it is my passion. I appreciate you
Joy
You’re welcome and thank you. We are all a lot to a lot of people.
Yes just need to think about it I guess sometimes. Some days it seems like Im Nothing.