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malloryrose

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10/2009
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CA
Hello all,

I needed to come vent for a second. I woke up this morning and a thought stopped me in my tracks... Am I going to be like this forever? At age 27, I have already spent 5 years of my life with a fibromyalgia diagnosis. I've tried to stay positive and continue looking for a cure. Maybe I haven't been ready to surrender myself to the diagnosis because I secretly assumed I'd discover another cause that was treatable.

But this morning, at 6:30am as I got dressed (tediously) for work, it dawned on me that this might be my fate. What if it never changes? What if the pain never goes away?

Have you ever felt this way and what have you done to keep your hope/ spirits high?
 

poolnoodles

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Aug 13, 2013
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05/2013
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Hi malloryrose,

I completely understand how you feel and have the same thoughts almost every day. :( I was 23 when I was diagnosed with a degenerative joint disorder and fibromyalgia. This whole year feels like I've been in a mourning process, and I get even more sad when I realize I'm feeling self pity! I realized, though, I can't put my dreams on hold, and I can't let my pain stop me from living life. Unfortunately, there are no "cures" for my condition.

While in school, I worked at a center for people with movement disorders (like Parkinson's Disease and ALS), and I learned a lot from the patients. I started seeing my condition less as a foreign disease, and just as a part of me. Not that I identify myself by my disease, but that it'sjust a characteristic, like being short or having brown eyes. And instead of fighting against limitations, a more positive approach is adapting to them. I wake up a little earlier to give me time to get out of bed, and I try to be kinder to myself when I'm in pain. I realize it's okay to walk slower and to not be in a rush all the time.

I don't know if my experience resonates with yours, but I hope it helps you know you're not alone!
 

malloryrose

Member
Joined
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Messages
19
Diagnosis
10/2009
Country
US
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CA
Hi poolnoodles,

Thank you so much for your post. How difficult it must be to have a degenerative joint disorder AND fibromyalgia! Hearing your feedback does help me feel less alone. It's difficult to see other people my age going on 8 mile hikes and leading active lives when I simply can't. I, too, feel the self pity that you speak of, and its so frustrating! I don't want to feel that way! I'm adapting slowly but surely.

Thanks again for writing :) I'm glad I have a place to vent and discuss!
 

kmpisces

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Uni
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I am so sorry that you have been dealing with this since you were so young. I have the same problem. And, I can tell you, I have the same worries. But there is hope. One of my really good friends also has Fibro. She went through a really rough patch in her early to mid twenties. She started looking for some alternative therapies and really made big changes in her life. It was not a cure by any means. But she is doing much better now.
 

Chrispy93

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Joined
Aug 20, 2013
Messages
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Diagnosis
00/2007
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Rhode Island
I have also tried to accept having fibro. But also having major depressive disorder makes everything harder. Sometimes, most times, i just don't care and stay in bed all day. Or if I do get up, i end up on the couch sleeping. Accepting i have MDD is one thing but to add FMS, it's overwhelming. The two are invisable to everyone and they just don't get it. so i find myself here. venting with you.
I just tell myself there are other people out there that have it worse than i do.
 

cinderr

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Jul 31, 2013
Messages
213
Diagnosis
02/2008
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I certainly have! Most days I wake up expecting something wonderful to happen so I can get back to normal. Lately though, it occurs to me that I am never getting back to normal. I am only getting worse with each year! The pain is never ending and I feel like I am missing out on all the fun stuff to include sex!
I am usually upbeat so this has been a shock to me. I even cried in front of my former rheumo---I never cry and if I do, never in front of others!
I feel especially bad because you are so young! You ought to be skate boarding to work with a child on your back--not suffering!
At the moment, I can't think of anything positive to say---I'm sorry.
 

cinderr

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When I am submerged in a party of gloom, I think about the seventeen year old kid across the street confined to a wheelchair. That's when I tell myself to knock it off!
 

1sweed

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Feb 4, 2013
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1,956
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01/1995
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Pennsylvania
This one is a hard thought to over come. I was diagnosised in my early forties and it was very hard to stay positive for many years. I would get up each morning and get to work and grit my teeth and try to get through my day. Somedays the effort to get out of bed was too much, and I like you would think is this forever.

Over the next twenty years I have struggled to remain positive and hopeful, and things have improved somewhat, but I know I will never be the classic normal again. I push myself on my good days to get things done and take it easy on the really bad days. I have had to learn to say NO, and not take on more than I can do now. Sometimes that is real hard when family is involved.

Depression is always with us and for good reason, but I try to look on the bright side of each day and do the best I can. I start projects to keep my mind busy so that I can forget the pain for a short time. Hobbies are a great outlet.

But unless a cure is discovered your answer may be YES, and you will need to accept it and deal with it the best way you can. I hope your outlook on life will smooth out as time goes on. :)
 

mariposa

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I started seeing my condition less as a foreign disease, and just as a part of me. Not that I identify myself by my disease, but that it'sjust a characteristic, like being short or having brown eyes. And instead of fighting against limitations, a more positive approach is adapting to them.

This sounds like a very healthy attitude, poolnoodles. You said there are no cures for your condition... I think you forgot to add the word "yet." Right?! :smile:
 

cinderr

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Jul 31, 2013
Messages
213
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WI
I know but when you're in great pain, it's hard to look for a bright side. Years of unrelenting pain; who wouldn't feel a little desperate? A light at the end of the tunnel? Not for me, not that I can see. And what recourse do I have? Please tell me if you can think of anything.
 

btatro

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Jul 22, 2013
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00/0000
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It is difficult, but not impossible to look at the bright side. Have you ever considered mindfulness training? It incorporates some of the ideas of yoga and meditation, but also focuses on other things. I am a strong, strong believer in mindset. Things can be as good (or as bad) as one makes them.
 
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