Constant Confusion

General
1

Hello Everyone,

You guys are great. I so truly value the support and camaraderie that I feel whenever I visit this site and read your stories. It's so helpful to know that I am not alone and I do so often feel alone with this disease.

Does anyone else ever feel like you are living in a constant state of confusion? I am always confused - confused by my symptoms which do change from time to time. I always feel like I may have some other disease (maybe b/c I have had constant testing for everything under the sun due to my various symptoms). I went through a nearly 2 year period of testing just to get diagnosed. I have been diagnosed with fibro now for exactly one year. But, I have been living in a literal hell for the past 4 years. I say this because I get odd flare ups and odd and different symptoms. I never know if it is the fibro or something else. How can you tell unless you keep going back to the doctor. I am so sick of doctors. I just had a colonoscopy two weeks ago for odd and unexplained pain. ???? I am so sick of all of this testing.

Everytime I have a flare up or a new area of pain I question myself as to whether it is the fibro or not. And, I guess everytime I get a flare up for a while I forget that it is the fibro. This Christmas was terrible. I was so exhausted to the EXTREME for 3-4 days (I'm still trying to overcome it but its very intense this time). I could barely enjoy my family. I had to wear pajamas on Christmas because my body was so sensitive to anything else and I had to rest frequently and sleep early b/c of feeling so terrible. I know it is such a downer for my family, but what else can I do?

2

Hello,

I know just what you mean! I feel as though I'm in a bubble, with the world outside it going along as normal, and I just don't feel completely part of it....when the fibro fog descends this feeling intensifies and I end up feeling all tizzy and anxious! I'm usually very tired when I get like that so the only way to relieve it is to go for a nap, shut the world out and doze for an hour or so.....this used to really get on my nerves, it felt like such a waste of time and so lazy, but I have gradually got used to doing it as it's the only way I can then function for the rest of the day....if I don't have my nap I feel like I've got full blown flu in the evening.

My body feels very sensitive to clothing at times, I can no longer wear scratchy woolly jumpers, fabrics have to be soft and smooth against my skin otherwise it hurts. I love evenings when I can get rid of my daytime clothes and put my soft PJ's on!!

I'm so sorry you felt dreadful over Christmas, everything that has to be done on the lead up to it then makes us too exhausted to enjoy it.....so unfair.

You're right, what else can we do....we had no say in getting fibro.....it got us and all we can do is adapt our lives around it, if you try and fight it you end up feeling worse...at least I do....so now that I've accepted what I've got and made a few adjustments to my life it has eased how I feel, just as long as I don't sway from my daily routine I can tolerate it pretty well...but I'm still in pain and tired everyday...it just varies as to what's going on in my life at particular times.

I try to get all my chores/shopping etc done in the mornings, when I have more energy, then I know I can have my nap, cook tea and relax in the evenings.....I only go out in the evenings if I really have to, which fortunately doesn't happen very often.

I don't worry anymore about what people think, my family know what I've got, they've read the info on it, they don't know how I feel but at least they understand that I've had to make some changes to my life, in order to be able to keep going as a wife and mother.

We're all in this together, so don't feel bad about how you feel, we can't help it but we can make a few adjustments to make it more bearable.

Take care,

Love Lucy xx

3

Hi Hopeful. I hear what you are saying. I would be willing to bet everyone in this group hears what you are saying. We are all in constant pain and have odd things happen all the time. I see my rheumatologist every month so I talk to her about anything new when I go. I too am extremely exhausted all the time. It is unmanageable! 2013 has been a very tough year. I am praying that 2014 will be better for all of us.

Happy New Year to all.

Jackie S.

4

Kelly,

Thank you so very much for writing. It is such a consolation to know that I am not alone. You really get it. I feel exactly like you. Sometimes, at least for me, the anxiety and the depression is the worst of all. I find myself looking forward to nightime when it is ok and acceptable to climb in to bed, put the covers over my head, and slip away from it all for a while. Sometimes it is the only consolation that I have. And, I truly thank God for sleep. Anyhow...I am glad that you have "peeped out" for a bit to write and share your feelings. It has meant a lot to me. Thank you. - holly