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aimes1407

New member
Joined
May 9, 2016
Messages
2
Reason
DX FIBRO
Diagnosis
08/2013
Country
US
State
Tx
I was diagnosed about 3 years ago and my pain, fatigue and cognitive issues have only gotten worse. They are all so bad, I had to stop working and can't enjoy any part of life. My depression has reached a point that I just don't know what to do anymore. I am hoping that I can find someone to confide in that understands what I'm going through. One of the hardest parts of this "invisible illness" is the feeling of being alone. My husband does what he can to help me physically, but he doesn't know how to help me emotionally, simply because he doesn't understand. I don't even have friends anymore for many reasons. My family also doesn't understand or possibly don't even believe me. My doctors are the same, which is even more frustrating and depressing. I know I'm not the only one with problems, and I don't expect a pity party, but it would be nice to at least talk with someone who understands what I'm going through.
 

sureimsore

Distinguished member
Joined
Apr 14, 2016
Messages
190
Reason
DX FIBRO
Diagnosis
03/2016
Country
US
State
XO
Well, I'm sure most if not all of us here can relate at one time or another, so know you are not alone, we can empathize. Have you looked into support groups in your area, or someplace relatively close that you can get a ride to/from? I know personally how hard it is, so limiting. I'm sorry. Sharing here with us can help relieve some of the anxiety and isolation. {gentle hug}
 

kml122

New member
Joined
May 5, 2016
Messages
3
Reason
DX FIBRO
Diagnosis
12/2014
Country
US
State
PA
Hi I'm Kim and a new member! While reading your post, it was like you read my mind...I understand how you are feeling! My fiancé is the only one who understands how bad my life is since my diagnosis but all he sees is the pain...he doesn't get the emotional aspect at all! Even with Lyrica and Savella, my pain is continuing to get worse along with memory loss, forgetfulness, etc. Like you, neither my family nor my "friends" understand how this has taken over my life (ha ha like I actually have a life now). I've been out of work just about 4 years and I am literally at home 24/7 except for doctors appointments...I am 51 years old and have NEVER been dependent on anyone and now I have no choice and that really sucks! I want my life, or a life, back and it doesn't look like that's going to happen anytime soon!

However, I just found this website, and forum, and I am reading a lot of information I never had before so I am hoping that the things I am (and hopefully you are) reading will help! Please be strong and hang on...it has to get better!!! I will add you to my prayers!!!
 

Eyesup

Senior member
Joined
Dec 11, 2015
Messages
376
Reason
DX FIBRO
Diagnosis
12/2015
Country
US
State
FL
Sadly if you reed back through older threads you'll find your not alone. Doesn't really feel like something to celebrate but what a relief to know your feeling are shared and valid. This ilness steel so much from you. It's worse then a theif in the night...it cares not when it steels because it's invisable to everyone but us!
If not for this forum I would have felt completely alone with this ilness. I know no one with it and I don't think anyone who hasn't exsperiances it could ever understand it. It is litterly our cross to bear, it is heavy and cumbersome. But you will grow stronger and more agile at handling it.
The forum has seemed slower lately, but there are many wounderful people with much knollege and strong shoulders they generously share but with it being slow it may take longer. Posting in general discussion seems to generate more responses, but don't give up.

Please feel free to message me if you need. I'm still learning but will share anything that might help. And I'm always willing to lend a shoulder and sometimes in need of one!
 

Nayzam

New member
Joined
May 9, 2016
Messages
3
Reason
DX FIBRO
Diagnosis
07/2001
Country
US
State
MA - Massachusetts
I am a new member as well. This is actually my first reply to a post. After reading your post I felt as if you jumped into my head and wrote exactly how I was feeling. As far as the husband and family, well they are sympathetic and understanding but I can also sense a bit of frustration at times. They never really say anything but you know it's there. Friends, well, because you either can't attend all functions or have to cancel plans because of how your feeling, they drift further and further away. The mental confusion makes you feel so insecure to go out in public even if you are actually feeling "ok", you fear you may run into an acquaintance and sound like a complete fool if you happen to engage in a conversation because you know you will forget words or maybe completely not recall their name. I'm not sure if this is exactly your situation, but either way I can totally sympathize with how you are feeling. I am finding this forum to be very bitter sweet. I am happy to finally be a part of something where others can truly associate with what I am going through, but so sad to see others going through it too. You constantly see fundraisers and awareness for many ailments but I feel we are forgotten. Sometimes I think if our diagnosis were different, like if it were ms or something people would then cut us a break. If you find something that brings you some emotional comfort please share what worked for you with me as I have thought I've just been in a "funk" because of the long grey winter here in new England but I think I'm in the same boat you are in. I hope you find some peace and can start to enjoy some of the things that you used to. Big hug from up north.
 
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