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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@sandymom

Tell me more about what you do for the pain which for me along w/ aging now & have been in medical field until forced to retire too soon. I need all the help advice I can get.

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@sandymom The main thing for me has been my diet. I have worked on this for at least 5 years. We are all different.

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@sandymom

I heard “be gentle to myself for the first time a few months ago from my pcp. @ 70 yrs old we r told be gental oh my gosh what can that help now....

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@sandymom Not an easy thing to do and not something I had ever done. Super woman no more. I have destroyed my health trying. I am learning still as the pain is not worth the pushing as it was when by children were born. There are no longer rewards for pushing now.

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@sandymom

Parus Has just seen your post about meds etc so I didn’t mean to ask you all this over again😘have you been the cognitive therapy road also?

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@sandymom Cognitive Behavioral Therapy (CBT) has been far more beneficial than all of those psych meds. I had been misdiagnosed for years. It happens. So many Psych doctors rely on pharmaceuticals to line their pockets. I have known some that ought to have been drawn and quartered for their arrogant barbaric and ignorant ways.

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@sandymom

Parus from sandymom what do you do for the pain frustration //....

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@sandymom Try to not get into stressful situations. Will admit this sounds shallow as my day has been so stressful My nerve ending are aflame. I enjoy doing creative things to help distract me. Distraction helps me the most. Once I can settle in and focus on something, anything it helps. My advantage is I live alone. Living in an
apartment has and will continue to be a challenge. If you have not joined the gratitude group I would recommend your checking it out. Looking forward to seeing you there.

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@jmjlove

Be gentle with myself??? Lately I've taken that to a whole new level. A horizontal one. Lazy, I tell you. I admit that it's up to me to change that. I gotten myself lazy and I can just un-get myself. I am my own worst enemy. I just. Gotta. Get. Going. Dang.

Actually, we sold our farm to oldest son who had a terrible scaffolding accident last May 1st. He crushed one leg so bad, he was a whisper away from having it lopped off. Had to postpone his wedding and is just now getting back to work. As a builder, he has to modify the type jobs he can take. A minor price to pay for his awful accident. But, he's alive, now married. Has both legs. And he has my farm! That farm assured me of a level of activity that was great for keeping in shape. My new lifestyle requires I take more initiative where activity is concerned.

Oh, I do go on, huh? God bless your efforts at wellbeing. You sound motivated to do what you can for yourself. Good for you, Lioness!

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@jmjlove I don't want to be flat on my back. It's mind over matter you can do anything you put your mind to I've told that to my son since he learned to understand me and you can to Yes it will take alot on your part but you can do it have faith in yourself Come on Jim ,hope that's your name It's a beautiful day here blue sky white puffy cumulus clouds Get moving even if it's a lift at a time patience is virtue .Do you have someone to help you? But you have to initiate the start go for it

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@sandymom

Tell me more about what you do for the pain which for me along w/ aging now & have been in medical field until forced to retire too soon. I need all the help advice I can get.

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Parus I lost the group you mentioned maybe gratitude?

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@lioness

@jmjlove I don't want to be flat on my back. It's mind over matter you can do anything you put your mind to I've told that to my son since he learned to understand me and you can to Yes it will take alot on your part but you can do it have faith in yourself Come on Jim ,hope that's your name It's a beautiful day here blue sky white puffy cumulus clouds Get moving even if it's a lift at a time patience is virtue .Do you have someone to help you? But you have to initiate the start go for it

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Lioness, I exaggerate. Truly. It's when I do find myself flat out, I chide myself. Am I lazy, to some it would seem not. But, to me, it seems so. I've worked on farms, raised 6 kids, been involved in much of church business. Cooked for receptions, refinished furniture, cared for the incapacitated. So, when I find myself in the prone position, it just seems so wrong. When I call myself lazy, it is in comparison to my awesome productive life. Do take it tongue in cheek.

You are so right. It is up to me to get moving, produce, get it done. We are in charge, for the most part, but reality is that my abilities are compromised by stroke, etc. Does that mean STOP? Nope, just means change direction. There are few limits as to the possibilities for productivity. Won't be the same, but there is plenty to be done! You are so kind to call me on. Thank you!

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@janieak

Hi y’all!

I was dx after tons of false leads—you know the “rule out” diagnostic process—in 2011. I’m sure it had been my companion for at least ten years prior.

I have found that my flares come with changes in barometric pressure, times of stress and when I’ve succumbed to whatever yucky virus is roaming the community. Lately, they aren’t necessarily an increase in pain, but rather a complete draining of energy and a debilitating fatigue.

Integrative Medicine has been what works best for me. Especially deep tissue massage with essential oils & moist heat. Acupuncture is a close second. My massage therapist, acupuncturist & nurse practitioner all communicate directly with one another for “Team Janie.” It’s amazing.

The prescriptions I take are:
Cymbalta
Gabapentin
Metaxalone
Potassium
A couple blood pressure meds
A couple asthma meds (newly dx due to mold exposure from a flood in our home)

The supplements I take are:
Magnesium
Wobenzyme (reduces inflammation)
Vit D3
Vit C
Vit B12
Mitochondrial Support
Melatonin

Right now everything is status quo and I’m managing getting outside for a couple mile walk with my “stick” with our eldest son (31) and a dog or two every few days. It feels fantastic to have a glimpse of my former life in the out of doors! I’m enjoying it while I can!

Early on, my balance went away—falling w/o warning flat on my face several times while chaperoning a 6th grade trip to Washington DC. It was nuts. Black eye, road rash on my face....came home and did a med wash to be sure it wasn’t a dude effect of meds, and did “balance therapy” with an ENT for six months. I haven’t fallen since, thankfully, but I keep my “stick” close at hand, just in case.

The best exercise I’ve found has been gentle yoga and Pilates. The stretching and the strengthening seem to help my system function better.

My family (hubby w/Early Onset Alzheimer’s, 4 homegrown kids & 3 add-on kids; ages 31, 29yo twins, 27yo, 23yo, 19yo, 18yo—one of whom has recently decided they are transgender 😳—also two grandkids and with one more coming this summer—plus the critters; 3 dogs & 8 chickens) don’t understand fibromyalgia—some understand a bit more than others, some just figure I’m old and can’t do any longer. At least none have flatout denied the existence of fibro.

Look forward to getting to know y’all,
Janie

PS. I live in Alaska. Where do you all live?
PPS. I’m 58...thankfully, recently my youngest asked me out of the blue, “Hey ma, you’re 50, right?” Hahaha! Made me smile.

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That’s cute Janie’s, sometimes just those kind words help the pain. As in “Mom you are 5o right” I remember the day I was 60 ish & people thought I was my 41 yo sons sister. Compliments helped me for the day like that & for my son who knows my struggles as he’s with me at 70 now & im grateful. People say how could you do this to your son keep him home with you all these yrs. aIl don’t keep him he chooses to stay after what life has given me with his father bipolar manic depression and still married but had to give up our home & turn to 2 apts. but as my son understands the live kindness you can give with words you know what I mean we go on forever about this.. take care....

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@parus

@sandymom The main thing for me has been my diet. I have worked on this for at least 5 years. We are all different.

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Parus changing your diet how? Thanks for responding!!

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@jmjlove

Lioness, I exaggerate. Truly. It's when I do find myself flat out, I chide myself. Am I lazy, to some it would seem not. But, to me, it seems so. I've worked on farms, raised 6 kids, been involved in much of church business. Cooked for receptions, refinished furniture, cared for the incapacitated. So, when I find myself in the prone position, it just seems so wrong. When I call myself lazy, it is in comparison to my awesome productive life. Do take it tongue in cheek.

You are so right. It is up to me to get moving, produce, get it done. We are in charge, for the most part, but reality is that my abilities are compromised by stroke, etc. Does that mean STOP? Nope, just means change direction. There are few limits as to the possibilities for productivity. Won't be the same, but there is plenty to be done! You are so kind to call me on. Thank you!

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Excellent! I love this choice !

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