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jesnyc01

New member
Joined
Jun 11, 2013
Messages
3
Diagnosis
10/2007
Country
US
State
TX
So, I'm new here, but I'm not new to Fibro. I was diagnosed in October of 2007 while living in NYC. It was brutal. Just so much pain and no answers on how to fix it. The fibro makes me so sensitive to medications I couldn't take anything but AdvilPM and Tramadol - and even that was hit or miss. Sleeping pills would put be in waking comas. Other muscle relaxants either wouldn't work or just make me so sick with side effects I would prefer the pain to the constant nausea, dizziness, and instant sleepiness.

I finally made the decision to leave the town that had become my home, leave my entire support network and move to Austin. The weather would be better, the lifestyle would be less hectic and stressful and maybe I could get myself back. I feel like I was a zombie during those years; just living in a state of perpetual pain, angst, depression, and despondency. I was a shadow of my former self; no longer fun-loving, up for anything, go-getting, dedicated to work, family, and travel. I was a hermit, turning into an agoraphobe, and very seriously contemplating going on disability. I was already taking full allotment FMLA time, just to keep my job. I needed a change immediately.

So, I left NY and moved to Austin. The climate, the more sedate lifestyle, the ease of access to my new job that didn't require 16 flights of stairs to get from my apt to my desk, like my old job did, (16 flights EACH WAY! Ugh.) all changed my life. It was great. The sunshine did wonders for my mood and that elusive state that I had heard whispers about had finally come to me...Remission. Remission! I was living a pain-free life! No more sleeping pills and pain pills. No more exhaustion and confusion and dizziness and falling down and feeling like a crazy person all of the time. No more pain. No more constantly feeling like my whole body was a bruise. People could hug me again and it didn't hurt. My friends and family said even my voice sounded different, like I was the old-me, again. It was great.

2 3/4 years of great. 2 3/4 years of freedom. I could walk up and down stairs. I could get 7 hours of restful sleep. I could live my life; go out, have fun, be carefree! I'm in my 30s and I felt like someone in my 30s not my 70s for the first time in YEARS. And, then last week it all came flooding back. I'm basically in tears just writing this thinking about how far I had come and how low I am now. I hurt. All over. I hurt. My fingers, my neck, my back, my shoulders feel like rocks, my knees, my elbows, my toes. Everything. I feel sick to my stomach, dizzy. I wake up every 1-2 hours, even when I take something to sleep. I feel horrible. I'm going to see a Rheumatologist for the first time in 2 3/4 YEARS! I'm just heartbroken.

I know I need to be grateful I even had that fleeting amount of time because so many of us never get it. But, I just feel bitter and angry and I want to have a temper tantrum! Why me?! Why now?! It's just not fair! It's not fair. And I keep putting on a pleasant face, because no one knows me as "that girl with the weird joint condition who never shows up to work", here. I'm just me. I'm just go-getting, getting-it-all-done me, here. And, now it's all flooding back. I don't want to be that person anymore. I finally got to be me again and now I'm going to be that zombie and I hate it and it's not fair and I'm just so mad! And, I'm hurt. And I'm hurting. :cry:
 

Ohyesuare

Member
Joined
May 30, 2013
Messages
10
Diagnosis
00/0000
Country
CA
State
Ontario
I am so sorry to hear that, life is really unfair sometimes. At least if you never went into remission it would be easier to cope with. But going into remission and feeling how it is to be able to live life again only to have it taken all away from you is 10 times worse. The only saving grace might be that since you went into remission once it can happen again, at least that will give you some hope. Again, I am sorry to hear that you are feeling this way and wish you all the best in the future.
 

jesnyc01

New member
Joined
Jun 11, 2013
Messages
3
Diagnosis
10/2007
Country
US
State
TX
I am so sorry to hear that, life is really unfair sometimes. At least if you never went into remission it would be easier to cope with. But going into remission and feeling how it is to be able to live life again only to have it taken all away from you is 10 times worse. The only saving grace might be that since you went into remission once it can happen again, at least that will give you some hope. Again, I am sorry to hear that you are feeling this way and wish you all the best in the future.

Thank you so much for your kind words. You hit the nail on the head in my situation. I'm just scared that I've uprooted my whole life for the opportunity to live pain-free for nothing. Is it always going to be this way? I'm trying not to give up hope or to let my despair further impact me and the fibro - vicious cycle and all that it is - but sometimes it's so hard to put on a happy face and keep up the front that everything is alright. So, thank you for responding and understanding and yeah. *Hugs and remission wishes to you and all*
 

mariposa

Senior member
Joined
Apr 19, 2013
Messages
459
Diagnosis
00/0000
Country
USA
State
PA
I'm sitting here knowing that not a single thing I say is going to be "enough." There *is* nothing to say except that I'm so very sorry you're having to deal with this again. :-(

You said you need to be grateful for the time you had in remission, but when it comes right down to it, as I heard a friend with other types of chronic pain say once, "being thankful that I was okay for a while means nothing to this pain I'm feeling now." So I understand what you mean, but being grateful doesn't make us feel better and it's perfectly alright to feel that way and realize that fact.

If I could offer *any* little glimmer of light to you, I'd remind you that in those 2 3/4 years, there MAY have been some new or experimental treatments that came up. And you MAY find a doctor in Austin who will work with you and try some new things... yes? This is constantly changing as more is found out about it over the years.
 
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