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Hopefully

Member
Joined
Jan 21, 2014
Messages
14
Reason
DX FIBRO
Diagnosis
01/2000
Country
CA
State
ON
Hi,
I decided to join this forum to find like minded people to vent with occasionally and possibly explore ideas of how to cope with this insidious illness.
I call this an insidious illness because most people (even professionals) don't even recognize it as an illness. Officially it's only a "syndrome". Yet it has destroyed my life. I can't work anymore, I still have not been approved for disability benefits, I've gone through all my savings and had to sell my home.
There are good days but they are getting to be fewer than the bad days.
I'm so tired of explaining to people why I can't do certain things or even commit to social events because I never know how I'm going to feel. Subsequently, there are very few people on the 'friend' list.
It occurred to me today that the thing that is missing in my life is a sense of belonging. Perhaps connecting with like minded people, struggling with the same or similar issues can alleviate the feeling of isolation I have been feeling lately.
I do try to help myself, recently with yoga and meditation. I'm still very new to that though and haven't seen any real benefits. I'm not giving up yet though.
Well there's a snapshot of my story. Hope it doesn't come across too depressing. I try to remain hopeful.

Hopefully
 

1sweed

Moderator
Joined
Feb 4, 2013
Messages
1,956
Reason
DX FIBRO
Diagnosis
01/1995
Country
US
State
PA
Hopefully,
Well you have found what your looking for, that being like-minded people. We understand what your going through and we can offer encouragement and support, a place to vent your anger and sadness, and a place to make new friends. We all have had issues with family and friends, and doctors not understand or believing in our pain. We all like being here to share our heartaches, as well as, vent when we are upset, and share knowledge of how to or how we deal with symptoms of fibro and fatigue, and share when times are good as well.

So a big welcome to the forum is in order. Please feel free to post in any of the topic sections and take time to read old and new posts. Ask more questions or just share your thoughts on fibro. Look forward to reading your posts. :)
 

Trellum

Legendary member
Joined
Jul 17, 2013
Messages
1,788
Reason
DX FIBRO
Diagnosis
04/2011
Country
NL
State
NL
I'm so sorry to read you had to sell your home, Hopefuly :( I can relate a lot wit your post because I can no longer have a physical job, that means I had to find a way to make some cash online. I don't make enough... at least not like I used to when I had a physical job. Sadly that's how things are. We have no choice but going on! I try to be positive, but some days are plain awful, thankfully I have found a wonderful man who seems to love me no matter what.

I hope you find the encouragement and support you are looking for over here, I'm actually certain you will and I hope to see you participating often. You can rest assured knowing you are not alone :) We are always ready to listen, so if you feel like doing it... please do!
 

BrittneyJordan

New member
Joined
Jan 22, 2014
Messages
2
Reason
DX FIBRO
Diagnosis
06/2013
Country
US
State
Iowa
I can relate to how you feel. I just joined this forum today and am looking for the same thing. I can really relate to the job issue. I only work part time because I can't have a full time desk job. My skills are at a desk job, but what I need is one that allows me to move around, but not strenuously, so I am at a loss too. What to do about it? It is just totally frustrating!
 

sarahgonzalez

New member
Joined
Jan 21, 2014
Messages
4
Reason
DX FIBRO
Diagnosis
10/2013
Country
US
State
CA
i feel the same way. i am scared to go back to work because i dont know if ill wake up in pain and wont be able to function at work.. i also fear being fired but i have no choice so i just hope for the best.. keep trying for those benefits .. its hard to get any kind of benefits for being sick..im only 23 and have this.. stay healthy and work out the docs tell me its very important but they dont know that it is hard to work out sometimes.. i feel like my muscles have weakend it is very hard for me to open things now which sucks
 

nascarmike

Senior member
Joined
Nov 7, 2013
Messages
227
Diagnosis
06/2013
Country
US
State
rhode island
Hopefully welcome to the forums and I hope you find them helpful. Yoga and meditation are a journey and if you stick with them you will probably find that they do provide a measure of relief. Good luck.
 

Hopefully

Member
Joined
Jan 21, 2014
Messages
14
Reason
DX FIBRO
Diagnosis
01/2000
Country
CA
State
ON
Thanks all for your warm welcome.

Sarahgonzalea, you mentioned about working out. Try to do your best to stay active. I know how hard that can be sometimes. I'm a lot older than you. My daughter is your age. In the last 10 years I've given in to my lethargy and now I'm paying for it. I can barely walk around the block without having to rest for 2 hrs. If I make dinner I consider that an accomplishment for the day. I really regret letting myself get so badly out of shape. It's going to make it that much harder to build up any kind of stamina again and though I went through a few years where I just wanted to give up, I realize I'm not ready to throw in the towel yet. Do whatever you can to keep moving. You have your whole life ahead of you.

Yes, Nascarmike, yoga and meditation are a journey. I already see a difference in my outlook. To be honest it took me a year from when I decided I wanted to do yoga to the first time I tried. I guess I'm really lacking in discipline. I may be the world's best procrastinator. But I am persevering.

Thanks again everyone
Hopefully
 

MEgersheim

Active member
Joined
Jan 18, 2014
Messages
53
Reason
DX FIBRO
Diagnosis
01/2014
Country
US
State
Massachusetts
Hopefully,
I hope to start yoga soon, it was one of the things I do remember enjoying very much before I had my son.
It is hard for me to enjoy much anymore. I spend most of my days in bed, sleeping, in agony, having insomnia...
My son tells everyone I sleep all day and that makes me so sad I cannot even cry. I am proud of myself on Sundays when I get up with him - I have to, no one else can. We spend the morning together until my girlfriend comes over and then she lets me go take a nap until probably supper time. During the week I get up with him in the morning to get him on the bus then go back to bed until he gets off the bus, then lay on the couch while he plays. I try to make supper four nights a week. I shower when I can but it hurts.
My son is only five years old and he has ADHD and Austism. I NEED to be able to take care of him. This illness cannot take me down like this, but I do not know what to do. Positive thinking is just not enough right now.

Best to you.

Melissa.
 

flamingocrue9

New member
Joined
Jan 18, 2014
Messages
2
Reason
DX FIBRO
Diagnosis
00/0000
Country
US
State
oh
I struggle too to move. But yoga or anything of the sort is out of the question I have 5 ruptured disc's too with fibro arthritis and oodles of other diagnoses. They say this isn't progressive I think we all know it is. My marriage fell apart.thx fibro. I can't start dating again so alone and lonely.
 

LLM1

Active member
Joined
Jan 18, 2014
Messages
65
Reason
DX FIBRO
Diagnosis
00/0000
Country
US
State
Md
I am older. But working out with chronic pain .is a different matter. I went to exercise a while but because our muscles do not recover in the right way...i would come home and have to lay down... My doctor advised that i try to just be more active with routine things...
I had a long term ankle injury ..so i put together exercises i do on the floor, including stretching, strengthening, some light yoga
I find topical pain relievers help me so much because i cannot take heavy medications...moist heat helps...i find physical therapy done extremely gently helps me through rough patches...and also study and use acupressure points to reduce pain levels.
Its a process..doctors help us some and some we have to figure out what helps us personally.
 
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