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!

Interested in more discussions like this? Go to the Fibromyalgia Support Group.

jmjlove | @jmjlove | Mar 9, 2019

In reply to @lioness "@buckimom When I first got it I went to a group of fibromyalgia people much like..." + (show)

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!

jmjlove | @jmjlove | Mar 9, 2019

In reply to @janieak "Hi y’all! I was dx after tons of false leads—you know the “rule out” diagnostic process—in..." + (show)

@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.

anniebrook | @anniebrook | Mar 9, 2019

In reply to @janieak "Hi y’all! I was dx after tons of false leads—you know the “rule out” diagnostic process—in..." + (show)

@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.

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

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

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.

Parus | @parus | Mar 9, 2019

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