Fibromyalgia: How do you cope?

Posted by sandymom @sandymom, Mar 8, 2019

Since 1983 fibromyalgia has cost me my job home life. Daily struggles. One day up next down. What to do to cope? See psychiatrist med nurse pcp etc. let me here your story the sufferings this has caused. Any help please!

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@buckimom

@jmjlove - I’m so glad you’ve had improvement. Keep on your walking path, it sounds like it’s tranquil. The drug is hellish but it’s only for 5-10 years 🥴, lol. Be good to yourself.

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Yes, improvement was quick in first 3 months, after that much slower. I will always be disabled, but I can live with that. Has issues my entire life, anyway. About my walking path.....sold the farm to oldest son. He is a builder, had scaffolding accident, crushed a leg, broken vertebra. Very traumatic, devastating injuries, but leg was his worst, crushed everything between knee and ankle. He was getting married, little income, and I needed to take care of my dad, 250 miles north. Sold farm and moved. How I miss my farm, my kids, my sheep, my walking path. There were 2 homes on the property. When my job here is done, I'm heading home to take up residence in the little house! Plant my garden, raise more animals. Son will still on the place, but it's a big outfit with room for mom and dad, thanks be to God!

I do hope you get great benefit from your therapy. I have seen that balance and ataxia (disobedient, float away limbs) are the most difficult to correct. But, I sure do not want to discourage you. Besides, the exercises for balance were fun and we ended up laughing like crazy! Worth it for the laughs alone!And...don't forget...to laugh, that is. 🙂

Just 5-10, huh? Hoping for the 5 for you.

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@jmjlove

Yes, improvement was quick in first 3 months, after that much slower. I will always be disabled, but I can live with that. Has issues my entire life, anyway. About my walking path.....sold the farm to oldest son. He is a builder, had scaffolding accident, crushed a leg, broken vertebra. Very traumatic, devastating injuries, but leg was his worst, crushed everything between knee and ankle. He was getting married, little income, and I needed to take care of my dad, 250 miles north. Sold farm and moved. How I miss my farm, my kids, my sheep, my walking path. There were 2 homes on the property. When my job here is done, I'm heading home to take up residence in the little house! Plant my garden, raise more animals. Son will still on the place, but it's a big outfit with room for mom and dad, thanks be to God!

I do hope you get great benefit from your therapy. I have seen that balance and ataxia (disobedient, float away limbs) are the most difficult to correct. But, I sure do not want to discourage you. Besides, the exercises for balance were fun and we ended up laughing like crazy! Worth it for the laughs alone!And...don't forget...to laugh, that is. 🙂

Just 5-10, huh? Hoping for the 5 for you.

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@jmjlove - good grief! You have really been through the fires. I too have been a long term care giver. My adolescent son fought cancer valiantly for 4 years. Absolutely soul destroying. Shortly after he passed, my twin sister was diagnosed with brain cancer. Her “devoted” husband walked out leaving her and their special needs son on their own. I left my family for a year to care for her until the end and brought her son home with me. I’ve learned that long term caregiving will age your body 10 years and I believe it. I hope you get back to your farm and your walking path very soon ❤️❤️. If I didn’t have “black humor” as I call it, I’m sure I’d be certifiable. I laugh all the time( it’s the only way.

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You’ve gotta find ways to laugh or you’d cry, for sure! I’ve been a serial caregiver in varying capacities, too:

•mom-lymphoma: 2009 (passed away)
•stepdad-Alzheimer’s: 2009-2012 (passed away)
•Brother-alcohol induced dementia: 2010-2012 (primary care provider until his nasty gf convinced him I was the bane of his existence)
•Godmother-Vascular dementia: 2011-2016 (passed away)
•father-in-law-Alzheimer’s: 2011-2014 (passed away)
•son: rapid cycling bipolar: 2013-present
•mother-in-law-Vascular Dementia: 2014-2018 (passed away)
•hubby: Early Onset Alzheimer’s: 2017-present

I suppose there’s a study out there stating that those of us that do too much are ripe for fibro...

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@buckimom

@jmjlove - good grief! You have really been through the fires. I too have been a long term care giver. My adolescent son fought cancer valiantly for 4 years. Absolutely soul destroying. Shortly after he passed, my twin sister was diagnosed with brain cancer. Her “devoted” husband walked out leaving her and their special needs son on their own. I left my family for a year to care for her until the end and brought her son home with me. I’ve learned that long term caregiving will age your body 10 years and I believe it. I hope you get back to your farm and your walking path very soon ❤️❤️. If I didn’t have “black humor” as I call it, I’m sure I’d be certifiable. I laugh all the time( it’s the only way.

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Yep. Seems we have much in common. Humor was my ticket to sanity. Though my poor husband almost drove me out of my mind (severe, unemployable, 100% disabling PTSD) it was him and his amazing sense of humor that kept me from going over the edge. My whole family lived life on a rollercoaster, under unrelenting stress, but by the grace of God, we laughed more than cried, played as much as we worked, learned to surmount the unsurmountable, managed to produce artists, professional musicians and singers, tenors-baritones-sopranos, builders, Web designers, an engineer, and successful small business owners. They are now loving parents, homeschooling their own, moral, upstanding members of humanity. Just cant make that happen. Not smart enough or virtuous enough.

So yeah, life has been full of crushing disappointments, as you well know, having lost a child. Me too. Bodies betraying us at every turn. Financial difficulties, failures galore, yet, despite all odds, we all pulled through and thrived. Again, no special skills, no higher education, nothing special. Absolutely nothing. Extra love and commitment, possibly. Maybe not.

Not the smartest here, but attitude, resourcefullness, and dogged determination, not to mention FAITH covered our inadequacies, mistakes made, and less than stellar lifestyle. RA...yes. Stroke...yes. Fibromyalgia...yep. Heart attack, stroke for hubby. Trigeminal neuralgia, and thoracic outlet syndrome. It's like having a handful of misc. health issues thrown at us, and yet we're still here, still living life, still laughing, still loving. You just can not give up. Keep pushing on. There is light at the end of the tunnel.

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❤️❤️❤️
It all comes down to attitude, doesn’t it?

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@janieak

You’ve gotta find ways to laugh or you’d cry, for sure! I’ve been a serial caregiver in varying capacities, too:

•mom-lymphoma: 2009 (passed away)
•stepdad-Alzheimer’s: 2009-2012 (passed away)
•Brother-alcohol induced dementia: 2010-2012 (primary care provider until his nasty gf convinced him I was the bane of his existence)
•Godmother-Vascular dementia: 2011-2016 (passed away)
•father-in-law-Alzheimer’s: 2011-2014 (passed away)
•son: rapid cycling bipolar: 2013-present
•mother-in-law-Vascular Dementia: 2014-2018 (passed away)
•hubby: Early Onset Alzheimer’s: 2017-present

I suppose there’s a study out there stating that those of us that do too much are ripe for fibro...

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@janieak. Wow, just wow! Thats enough to give anyone fibro!!!! Goodness, between Alzheimers and dementia, you must have been under terrible stress. Those are in many ways more difficult to deal with than bodily health issues! My father suffers from dementia and that alone stresses me out. Well, honestly, him too. 🙁

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@janieak

❤️❤️❤️
It all comes down to attitude, doesn’t it?

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@janieak You have had alot of unfortunate happenings sorry but you are right it all comes down to attitude

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@janieak

❤️❤️❤️
It all comes down to attitude, doesn’t it?

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@janieak. Yep. Attitude.

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@jmjlove

Yep. Seems we have much in common. Humor was my ticket to sanity. Though my poor husband almost drove me out of my mind (severe, unemployable, 100% disabling PTSD) it was him and his amazing sense of humor that kept me from going over the edge. My whole family lived life on a rollercoaster, under unrelenting stress, but by the grace of God, we laughed more than cried, played as much as we worked, learned to surmount the unsurmountable, managed to produce artists, professional musicians and singers, tenors-baritones-sopranos, builders, Web designers, an engineer, and successful small business owners. They are now loving parents, homeschooling their own, moral, upstanding members of humanity. Just cant make that happen. Not smart enough or virtuous enough.

So yeah, life has been full of crushing disappointments, as you well know, having lost a child. Me too. Bodies betraying us at every turn. Financial difficulties, failures galore, yet, despite all odds, we all pulled through and thrived. Again, no special skills, no higher education, nothing special. Absolutely nothing. Extra love and commitment, possibly. Maybe not.

Not the smartest here, but attitude, resourcefullness, and dogged determination, not to mention FAITH covered our inadequacies, mistakes made, and less than stellar lifestyle. RA...yes. Stroke...yes. Fibromyalgia...yep. Heart attack, stroke for hubby. Trigeminal neuralgia, and thoracic outlet syndrome. It's like having a handful of misc. health issues thrown at us, and yet we're still here, still living life, still laughing, still loving. You just can not give up. Keep pushing on. There is light at the end of the tunnel.

Jump to this post

@jmjlove - I’m sending you hugs, love, and admiration. Attitude is a large component of successfully coping.

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@buckimom

@jmjlove - I’m sending you hugs, love, and admiration. Attitude is a large component of successfully coping.

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@buckimom....Thank you. You are a very kind lady.

So. Now. Should I share my "dumb as a box of rocks" moments? Believe me, I could share so much, would probably overwhelm the internet. Seriously, I have embarrassed myself, shamed myself and done much more wrong than right. But....correcting wrongs, honestly assessing behaviour, making changes.... all allows us opportunities to grow, thank God. Got plenty to account for, but the beauty of living is our ability to learn and change. So my plan is to plug away, hopefully learn from my mistakes, try not to repeat them, while I help my dad get from this life to the next. And then.... try to suffer what I must gracefully so as to not be any more of a burden to my family than I must. And continue finding the humor in this messed, but wonderful life.The fam loves me, for sure, but as I age, I expect it will be my turn to be a burden. My kids will be good and kind, but this is a fact of life.

I pray I can care for my own needs for many more years. Just want to preserve a minimum of dignity before I get planted. May we all be allowed this grace! Especially those who have invested their lives caring for others. Like many here on this forum. God bless.

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