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Danni

New member
Joined
May 19, 2015
Messages
2
Reason
DX FIBRO
Diagnosis
07/2009
Country
US
State
KY
Hello. I'm a Newbie. I've been searching for something or someone that can relate to the ridiculously horrifying invisible problem that no one can understand unless they deal with it as well. I'm tired of talking about how much it hurts physically and emotionally as a wife and mother. I find myself huddled in the darkest room and try to hide, because I just can't take seeing the disappointment looks on their faces.
Sorry about the over share on a welcome page.
 
Good Morning Danni,

I am a new member as well. I was just kind of browsing this site for the first time when I came across your post. I know how you feel. I have two daughters that I feel like I cannot be emotionally present for. How can I be when sometimes, it just hurts to breathe? I really do try my best, and it's not always like this, but yes, I feel guilty. I don't tell them much-I'm not even sure if they know at all that something is wrong, or they just assume I am grumpy. I try to explain my behavior to my boyfriend, but I don't feel like it sinks in with him that my discomfort is almost CONSTANT and I don't want to sound like a broken record player or that I'm being a pansy. My best friend, who is a nurse, is really the only one I feel comfortable talking to as much as I want about this condition. Despite having seen three neurologists, two rheumatologists, and having had every test done under the sun, I have not been officially diagnosed. Now, after about two years of going through this, I have come to the conclusion that it is fibromyalgia that I am suffering from. I wish my doctors had offered this up as an option at some point-it would have saved me a tremendous amount of terror this entire time. I was convinced that I was dying. It's nice to know that I'm not the only one struggling, though.
 
Thank you! I also avoid talking about my pain. I try so hard to push everything away and focus on being a good mom to my amazing and talented daughter. I find that every day I'm asked at least 30 times "what's wrong." I hate that question. Yet my answer is always "nothing." So the cycle continues. If I talk about the pain it feels like a pity party, but if I put on a good show I in turn have to suffer the recoil. First the next day to how ever many days my flare will last knocks me flat on my butt. I have lost all of my friends due to being a flake. I understand why and how frustrating it could be for them. So I let them all go one by one and held my head high. Anger disappointment not needed. The hardest hits come from my family members who don't live near me. They can not get that I can't drive all the way to Washington state to visit. Even my own mother betrayed me. She is convinced I'm a hypochondriac. So cherish all that you have with you. Try to open minded about what is okay and what isn't. I'm so happy that you have a friend that is compassionate and empathetic. Hold her close. Be honest. Know your limits. It is something that takes a lot of trial and error. No you are far from alone on this.
 
This FM hit me at 63, so much older than you both. I take all supps for the FM and after years of struggling with what I believed was a low thyroid, finally got it supported....I believe FM and thyroid are so related. So many are told their "numbers" are normal and they are NOT. If you think you could be hypoT, try to get to an integrative MD or naturopath. The are not so obsessed with the numbers, althou, the numbers an be helpful, it's more than that...it's all the symptoms....Do your work on this issue.

I have a lot of info posted since I arrived here, not long ago. I've worked with other fibro groups and learned a lot, and did so much work on my own...
 
Danni,

I'm sorry for what you're going through, but it's comforting to know that someone else is in a similar boat. I get frustrated with the question, "What's wrong?" from people who already know I'm sick. I want to reply, "The same thing that was wrong yesterday!" I try to explain my behavior to my kids and say, "I'm just tired today." Or something else generic so they don't worry. I'm a divorced mother of two, so I know it would terrify them if they felt something was seriously wrong. I've lost friends as well. I don't have the energy to maintain relationships. When you feel like crap all of the time, it wears you down and it gets hard to care about their lives. My mother created a serious rift between us as well. I was speaking to her on the phone (she lives in Washington State as well) a couple of weeks ago and said that I wasn't feeling well that day. She asked me what was wrong and I told her that it was the same condition that I've had for two years. Remember? And she brushed it off. I'm not looking for sympathy all of the time at all (sympathy is not worth the trade of feeling like this by any means) but some empathy and consideration would have been nice from my own mother. Without sounding like I'm complaining too much, I wanted you to know that you are not alone with your struggles with family and friends. A couple of years ago, I was making the drive from PA to AL straight through(which is like, 18 hours, I think) twice a year. I won't drive more than two hours for ANYTHING now. I spent a lot of time trying to convince people that I'm not crazy-including doctors. But what are we to do? We KNOW it's real. Up until a few months ago, I was running 10-15 miles per week and now I can't even run around the block! Of course it's real. I agree with you about being open-minded about what is okay and what isn't. Only we really understand what we are going through and what we are capable of doing and tolerating. I think we have both given up on trying to convince people of our discomfort. If your husband is anything like my boyfriend, your outlet may not be with him, either (I don't think that makes them bad, as mine does try, he just isn't capable of that level of understanding). I hope that you have someone else that is truly compassionate and allows you to vent on them. If not, please take comfort in knowing you are not by yourself and you can probably message me (although I don't know how) on here if you feel like there is no one else you can talk to. On another note, have you found anything that helps you?

Thank you, Jaminhealth, for your input. I'll look into it.
 
Welcome to the family both of you, im a mum of four, so I no where your coming from. I've had this years. Now one of the first things to do is tell your Dr u need pain relief . I take tramadol ,sure I'm never not in pain ,but I can get through the day on a low does. U might have to be very firm about what u want, I no a lot of Drs try to hold of from pain pills, but u have family's to look after.
Tramadol is a life saver for me. Because I can take what I need when I need it. It's not as strong as a lot of drugs out there.and u can take it with paracetamol .i think u call that Advil or something like that lol.
Don't sit in pain your never be pain free but u have every right to have a life .xx ps stick around it a great site to have a moan in or a cry to. Everyone here knows your pain
 
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