Fibromyalgia

Posted by sandymom @sandymom, Fri, Mar 8 8:36am

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!

Liked by tdib

@sandymom Ah yes, fibro the gift that keeps on giving. It can be a lonely place. I was diagnosed in 2000. Share more if you want. When it comes to doctors I have not found much help as the medications for fibro do nasty things to me. I am 67 and have found others here at connect to be helpful, supportive and caring. What helps you, what are somethings you enjoy, do medications help you?

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@sandymom I,d like to add my wellcom to you as @parus did .I've had fibromyalgia since the 90,s and it is a chore to have The ups @downs I've had all the meds out there known researching different fibro groups I came across a group that said clinical evidence says we need more magnesium then normal people So I found a product I've been taking for years that helps me called Fibro Malic I get it from Vitacost.com It's not perfect as I still get flare ups but keeps me comfortable for the most part

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Fibromyalgia. Diagnosed at a time when there was much skepticism about this malady. (Around 1988). It's been my constant companion. Now, I would be considered classic in my presentation. Most of the pain points. Bleeding around connective tissues, extreme inflamation. At times making walking impossible. Probably my feet and ankles the worst hit. At 60, all the pain points, if pushed, still feel like a small but deep bruise.

Magnesium is very good for us. So is deep sleep, which is probably most lacking in sufferers. Deep, restorative sleep which repairs our small tears and small injuries everyone experiences in daily life. Little sleep….little natural healing. The body normally is in a continual process of healing. But not ours, which results in inflamation of the connective tissues….and pain. There is more awareness today about this condition, but still many remain skeptical. Having lived with it, as others have, I know it's very real, and can be very painful. As in RA, there are remissions and flares. At this point in my life, I have much more serious health concerns, but I remember clearly being completely bewildered as to how my strong, athletic, healthy body could possibly be in so much pain. My only consolation at that time was it won't kill me. No matter how much it hurt, it wouldn't kill me. I was actually relieved to find out I had an actual condition which gave reason for the pain.

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@lioness

@sandymom I,d like to add my wellcom to you as @parus did .I've had fibromyalgia since the 90,s and it is a chore to have The ups @downs I've had all the meds out there known researching different fibro groups I came across a group that said clinical evidence says we need more magnesium then normal people So I found a product I've been taking for years that helps me called Fibro Malic I get it from Vitacost.com It's not perfect as I still get flare ups but keeps me comfortable for the most part

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@lioness – good info. I was diagnosed in 1984. I’ve had flare ups that have kept me in bed for 2 weeks. I have found that stretching and lite exercise help. Swimming is helpful. I haven’t found a medication that helps. That’s my story and I’m stickin’ to it😘. It a miserable syndrome for sure. Wishing you recovery.

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@buckimom

@lioness – good info. I was diagnosed in 1984. I’ve had flare ups that have kept me in bed for 2 weeks. I have found that stretching and lite exercise help. Swimming is helpful. I haven’t found a medication that helps. That’s my story and I’m stickin’ to it😘. It a miserable syndrome for sure. Wishing you recovery.

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I agree about exercise being helpful. Though I did easily injure myself due to fragile inflamed connective tissues. If able, and despite pain, I ran, miles, miles and more miles. Ran through fibro, ran through RA, knee replacements (both knees). I did aerobics, any and all. Until, 52. Could no longer move past the pain. Just. Had. To. Stop. Could no longer bear the pain. Having reached my limit, I just had to accept that part of my life is over and hope my years of exercise will serve me well in my later years.

But, no reason to avoid stretching. I've become flat out lazy. There. I said it. Lost my sense of balance, coordination with a large cerebellar stroke. Even lost the natural inborn ability to regain my balance after losing my footing. I slip, I fall. trip, I fall. Despite that, life is good. Been married 41 years, have 6 beautiful kids, 14 grandkids. Life is so much bigger than fake knees, stroke, fibro, and numerous other annoying issues. Those things are part of my life. They have their compartment. But, oh, the joys are great. Greater than my deficits are annoying. 🙂 Wishing all the best!

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@buckimom

@lioness – good info. I was diagnosed in 1984. I’ve had flare ups that have kept me in bed for 2 weeks. I have found that stretching and lite exercise help. Swimming is helpful. I haven’t found a medication that helps. That’s my story and I’m stickin’ to it😘. It a miserable syndrome for sure. Wishing you recovery.

Jump to this post

@buckimom When I first got it I went to a group of fibromyalgia people much like connect and they said Isometric exercises are as good as regular exercise for fibro
Water Aerobics and bring gental with yourself

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@jmjlove

I agree about exercise being helpful. Though I did easily injure myself due to fragile inflamed connective tissues. If able, and despite pain, I ran, miles, miles and more miles. Ran through fibro, ran through RA, knee replacements (both knees). I did aerobics, any and all. Until, 52. Could no longer move past the pain. Just. Had. To. Stop. Could no longer bear the pain. Having reached my limit, I just had to accept that part of my life is over and hope my years of exercise will serve me well in my later years.

But, no reason to avoid stretching. I've become flat out lazy. There. I said it. Lost my sense of balance, coordination with a large cerebellar stroke. Even lost the natural inborn ability to regain my balance after losing my footing. I slip, I fall. trip, I fall. Despite that, life is good. Been married 41 years, have 6 beautiful kids, 14 grandkids. Life is so much bigger than fake knees, stroke, fibro, and numerous other annoying issues. Those things are part of my life. They have their compartment. But, oh, the joys are great. Greater than my deficits are annoying. 🙂 Wishing all the best!

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@jmjlove – oh dear, you sound like me🥴. I’ve had 3 knee replacements, osteoarthritis, fibromyalgia, no balance, bruises due to bumping into walls like a drunk. I’m also on an aromatase inhibitor for breast cancer which offers a host of awful side effects. You’re right, my children and grandchildren make life a joy. Aren’t we all amazingly strong women! God Bless.

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@buckimom Yes we are all of us are pain warriors

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@buckimom

@jmjlove – oh dear, you sound like me🥴. I’ve had 3 knee replacements, osteoarthritis, fibromyalgia, no balance, bruises due to bumping into walls like a drunk. I’m also on an aromatase inhibitor for breast cancer which offers a host of awful side effects. You’re right, my children and grandchildren make life a joy. Aren’t we all amazingly strong women! God Bless.

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Oh, my, 3? Poor you. My first knee replacement was done 18 years ago. Won't be long and that will have to be replaced. But, like most everything else, I'll hold off as long as possible. I am not one of the lucky ones that actually feel better once it's replaced. Knee recovery for me is long and difficult. Had many different types of surgery, and there have only been a few times recovery was not quick. Total Knee Replacement, and TOS. Those two were very hard on me.

God bless you, dealing with cancer on top of everything else on your plate. Ok. So. You too, huh? When I go out in public I actually worry people will think im drunk, lol! And by golly, if I ever were to be pulled over and given a field sobriety test…well….I'd find my car impounded, and be in the back seat in a squad car, lickety-split!!!! I couldn't walk a straight line if my life depended on it. You? I am the queen of stubbed toes, bruised shoulders, and spilled drinks. I catch my daughters sly glances when I hold their babies. I'm extra careful….and they are extra watchful, as they should be.

May I ask, how did you lose your balance? Mine got sucked out with my cerebellar stroke.

And yes, I certainly am "amazing" !!!!! Just not sure….amazing at what? I know my kids find their new mother somewhat amazing, (a bit of a clutz, somewhat of an airhead) most of all at my toughness, which we wouldn't have know without the very challenges I find myself whining about! Peace to you. 🙂

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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.

Liked by lioness, jmjlove

REPLY
@lioness

@buckimom When I first got it I went to a group of fibromyalgia people much like connect and they said Isometric exercises are as good as regular exercise for fibro
Water Aerobics and bring gental with yourself

Jump to this post

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!

Liked by lioness

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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.

Jump to this post

Janie, Upper Michigan here. This winter it may as well have been Alaska. Or, Siberia. Sounds like you have a nice busy life!

We lived on a farm and have raised goats, sheep, couple 4 pigs, chickens, ducks, geese. Plus dogs, cats. And kids. 6 kids, 14 grandkids kids. Recently moved from Southern Mi. to northern mi so I could care for 88 yr old dad. No regrets on that count, but when my job is over I'll be back to my kids/grandkids in a heartbeat. Never saw myself moving away from them. I was a stay at home mom, homeschooled all of my kids, again, no regrets, and now life is so different I hardly know myself. It's been quite stressful which translates into greater physical challenges for me. But, by the grace of God, this will pass and I'll be back where I belong.

Nice to "meet" you! Blessings to you, Janie.

REPLY
@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.

Jump to this post

YUP me too.Mine came on within 5 hrs of having my 4th/final baby.We lived in Hong Kong at the time as my husband was British Royal navy at the time. I was 29 at the time I am going to be 66 this yr so I have had it a long time. I saw a Rheumatologist many yrs ago at a private clinic as most of my pain was in my right shoulder /neck area only. I nearly lost it at the time as he said " I don't believe in Fibro in my opinion fibro is caused by something physical". Roll on yrs later and I was diagnosed after coming to live in Canada with a slightly torn rotator cuff that was missed in Hong Kong and England. I think with many yrs of not being able to lift my arm that and being careful of EVERY movement that the Dr might have been right .The surgeon here said it was too small to fix but just cleaned out my shoulder which gave me better ROM. I do have every sign/symptom of Fibro and about 8 yrs ago started with Osteoarthritis everywhere. So I have had chronic pain for more of my 66yrs on this planet than I haven't had pain.It makes me angry,I am not a jealous person of anything but I am jealous of pain free people. All my pain free friends have no idea that I have to subconsciously think before I make any movement. When I say no I can't go on a hike or I can't go skiing/sledding I think they must think I am just a moaning minnie,it makes me sad. I have just started on Gabapentin at night for the nerve pain from my spinal arthritis,it does help a bit.I stopped taking other pain meds because they made me so bad tempered I would snap my husbands head off every time he spoke. I didn't know what was wrong with me,I hated being like that and what a difference it made within a week of coming off them. I take CBD oil TID,not sure if it helps but I'm going to keep on with it. Hoping for a miracle.

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@anniebrook You are not a moaning Minnie. You are brave and courageous. Thank you for sharing so honestly.

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@anniebrook

YUP me too.Mine came on within 5 hrs of having my 4th/final baby.We lived in Hong Kong at the time as my husband was British Royal navy at the time. I was 29 at the time I am going to be 66 this yr so I have had it a long time. I saw a Rheumatologist many yrs ago at a private clinic as most of my pain was in my right shoulder /neck area only. I nearly lost it at the time as he said " I don't believe in Fibro in my opinion fibro is caused by something physical". Roll on yrs later and I was diagnosed after coming to live in Canada with a slightly torn rotator cuff that was missed in Hong Kong and England. I think with many yrs of not being able to lift my arm that and being careful of EVERY movement that the Dr might have been right .The surgeon here said it was too small to fix but just cleaned out my shoulder which gave me better ROM. I do have every sign/symptom of Fibro and about 8 yrs ago started with Osteoarthritis everywhere. So I have had chronic pain for more of my 66yrs on this planet than I haven't had pain.It makes me angry,I am not a jealous person of anything but I am jealous of pain free people. All my pain free friends have no idea that I have to subconsciously think before I make any movement. When I say no I can't go on a hike or I can't go skiing/sledding I think they must think I am just a moaning minnie,it makes me sad. I have just started on Gabapentin at night for the nerve pain from my spinal arthritis,it does help a bit.I stopped taking other pain meds because they made me so bad tempered I would snap my husbands head off every time he spoke. I didn't know what was wrong with me,I hated being like that and what a difference it made within a week of coming off them. I take CBD oil TID,not sure if it helps but I'm going to keep on with it. Hoping for a miracle.

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@sandymom please tell me about cbd oil. What if any difference do you see and how do you take it with instructions free pcp ?? Had you used the “oxy s” if so any help? Tell me about the dr’s you see if any. As you can image my 30 yrs. of pain is becoming sooo frustrating and to start aging at 70 with only my 40 yr old son & I left ( parents would’ve 100 this year) no siblings cousins etc left in the world I, We are struggling very hard now for help. As of corse as you know I could go on for hrs yrs tell me about you please

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