Help!

[kbalint]

I just joined this forum out of clear desperation. I was diagnosed with FB a few years ago after many doctors were unable to determine what else could be causing me the extreme pain, fatigue, depression, body tenderness (and this list goes on and on and seems to circle, with one causing the next).
When I feel good, of course my tendency is to live and do the things I love to do and of course, the things I have to do regarding work and general house responsibilities.
The "regular" things in life have caused me to have such flare ups that my family tells me to not do anything! But what kind of life is that? And so when I do, and then spend several days/weeks recovering, it's not pleasant for them or for me. The understanding isn't there, with anyone not suffering the pain, and their patience is short.
I can't tell you how nice it is to find an on-line support group because my pain is so intense right now that all I can do is cry. This has taken over my life and I am desperate for advice and support from others.
I don't want a lecture. I get enough of that already! I need help and guidance.

 

[snckrs]

You wont get a lecture from any of us. We all have been in your shoes and have had lectures from family members about what to do, when they have no idea what it is that we go through. And the stuff about doing regular things and then having flare ups, I feel the same way. And no it isnt way to live. But unfortanatly that is what we have to do. We are all here for you now.

 

[terbaer]

Kbalint, I'm so sorry for what you are going through. I think you will find this forum so helpful. It has been for me. I have always been an active person, but for years got woozy when I would get overly tired. It's progressed to the point that I'm trying to determine if I can continue to work. I went to a counselor starting in December because I was struggling with what was happening to me. I started having anxiety after a mild heart attack in October. She gave me some good advice and I think it's helped. She wanted me to take some time and mourn the loss of who/what I was and begin looking forward to making my future the best it can be given my disease. That was a very empowering thing to do. I talk more with my husband. I'm still trying to find answers as to why I have headaches all the time and I have a supportive manager when I haven't been able to get up because of the fatigue. We are so busy at work developing our agency's budget request and I'm trying to provide input and lead my team, but the reality is I just can't.

I love to camp and ride quads. My husband has modified mine so the throttle is very easy to use. Sometimes when we go, I don't ride because I'm too exhausted. Sometimes, I force myself to ride out where everyone is hill climbing and watch. Maybe take a run or two. I try hard to still do things, but in very minimal moderation. Took me missing several days after overdoing a number of times to realize I just can't go and do like I want.

Hang in there. I don't think you want to "do nothing". My motto is, "If I can go and do, I do. If not, I won't beat myself up." Sometimes things are very important. I missed a number of them over the years. I've made the decision that I am going to try and force myself to try. I'm making more special events than not. My family is very understanding and has tried to reduce my stress by having me bring simple things to dinners so I can feel like I contribute, but I'm not forced to cook 4 or 5 things like I used to. I hope just the few responses to your post have helped. Don't hesitate to ask questions as they come up. Welcome aboard!....