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Nellbelle

New member
Joined
Jan 30, 2015
Messages
2
Reason
DX FIBRO
Diagnosis
09/2015
Country
US
State
Maryland
I would like to say "hello" to all. I'm new here, and not sure how this all works I guess I'll catch on. I'm just so bone tired and exhausted most of the time. Pain comes and goes. Neck, shoulder, upper back, lumbar region. Brain fog. You name it. Even the slightest effort to walk or get up is an "oh no,,do I really have to move?" moment. My days of thinking that I can power through it are over. I can't. And that is hard to admit after years of saying, "I'm fine!" I am currently doing the Dr. "shuffle". No one wants to deal with it. Missed work today because I felt like a truck hit me. This can't continue. I think that people think I'm a hypochondriac, which is nonsense, cause I would do anything to avoid any dr. I've powered through ailments, exhaustion and pain for years. I'm done. Thanks for listening. And happy to be here. :wink: Nell
 

Eff fibro

Active member
Joined
Oct 13, 2014
Messages
38
Reason
Undiagnosed
Diagnosis
10/2014
Country
US
State
MA
Hi Nell! Welcome. I've found that this forum reminds me I'm not alone. Some posts have really inspirational thoughts or some funny joke to make me smile. I, too, have the pain in my shoulder/upper back and lumbar region as well. I was getting PT but didn't feel much improvement (which makes me think the pain is fibro related, not actual muscle dysfunction). The stretching definitely eases the tension and the strengthening releases endorphins that help mood and energy, so I recommend any movement you can tolerate. Yoga and tai chi have been studied with positive results on relief of fibro symptoms. I live on my heat and ice packs. It's just now starting to get to the point of impacting my work. Tomorrow I have my 8 hour shift which I always dread bc my body can't handle 8 hours. Last weekend I went in 2 hours late because I just knew I couldn't handle 8 hours. I cant do that 2 weeks in a row so I need to just push myself through the best I can.
I'd say the majority of people I talk to about my fibro don't "believe in it". Honestly, I didn't either until I felt it. And I don't think my family and bf believed it at first either. But now that I'm having another flare, they realize it wasn't just a one time thing, me making more out of something than it was... that this is real and I am uncomfortable. I'm not just being a baby! When I told my neuro (for epilepsy) that I was diagnosed with fibro a few months ago he rolled his eyes. the response was so.... disbelieving that I didn't know what to say after that. He said he has no idea whats causing my pain but based on all tests, it must be benign so don't worry about it, as long as meds are controlling it to a tolerable level. So funny that he can't explain widespread pain but refuses to believe that a condition like fibro actually exists. Funny.
My brain fog has never been so bad as it is this week. I've been walking in circles, get up to get something and forget what I was doing, put something down and forgot where, and I'm that type of overly organized person so it drives me nuts! I often feel like people just think I'm a hypochondriac, but those who matter, those who know me better and SEE how its affecting my life (my therapist of 3 years just suggested I think about antidepressants), they know it's real.
Sorry this turned into a bit of a vent session! Bottom line, you are not alone. I wish you better days ahead and peace of mind!
 

Corvid

Distinguished member
Joined
Dec 21, 2013
Messages
101
Diagnosis
06/2012
Country
US
State
**
Welcome, Nell! As you read through the posts here, you'll find that you are not alone, and there's a bunch of us here who know what you're going through.

I totally understand your "oh no, I don't want to get up and walk" feeling. I've gone from working out and competing in athletic events to calculating the absolute shortest distance between any two places in my house or at my job. In the mornings I make sure to take everything I'll need for the day down from my bedroom with me so that I won't have to go back upstairs until bed time. At work I plan my visits to coworkers' offices in geographical order because I can only walk about 20 yards before I start having trouble walking due to muscle fatigue and spasms. My grocery lists are in aisle order so I don't ever have to back track.

I've made sort of a game of all this calculating of the absolute most efficient way of doing everything. Making it a game and a mental challenge helps me focus on the positive instead of focusing on how lousy I feel. No one has it easy with this disease, but at least we have each other. Welcome to the forums.
 

Forgetmenot

Legendary member
Joined
Oct 6, 2014
Messages
1,549
Reason
DX FIBRO
Diagnosis
70/2010
Country
UK
State
Hertfordshire
Welcome. It's such a crappie thing to have , but here we try to keep each other afloat .xx
 

Nellbelle

New member
Joined
Jan 30, 2015
Messages
2
Reason
DX FIBRO
Diagnosis
09/2015
Country
US
State
Maryland
Thank you so much for the welcome! I thought I was going crazy for years. The doctors are so challenging. As you know, they think "its all in my head". The physical therapist (for my back and neck) was the one who discovered it, and referred me back for evaluation. God bless him. I love the good days, or even half days of no pain or discomfort. I have no clue what it must feel like, to wake up feeling well rested. ugh. Hope you're doing well. Nice to have someone who can relate. :)
 
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