1. < Fibromyalgia

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.

lioness | @lioness | Mar 9, 2019
In reply to @anniebrook "YUP me too.Mine came on within 5 hrs of having my 4th/final baby.We lived in Hong..." + (show)
@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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@anniebrook You are a brave fibro warrior as we all are who have the SYNDROME as they call it but we know how awful it is. As janieak stated the meds she is on for me didn't work just fibro Malic and Tramadol for pain I do take Meloxican for arthritis as I have it all through me. I believe in chiropractor to keep my muscles relaxed as well as a Tens unit I use at home Stay strong

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lioness | @lioness | Mar 9, 2019
In reply to @jmjlove "Lioness, I exaggerate. Truly. It's when I do find myself flat out, I chide myself. Am..." + (show)
@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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@jmijove Your welcome and that's right do what you can don't give up Im retired from medical field and have had to be rough sometimes to get (lazy) people moving sorry if I was rough on you maybe you needed a reminder?

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lioness | @lioness | Mar 9, 2019

@sandymom I was forced to retire was doing private duty when I fractured my L2 couldn't work anymore on top of fibromyalgia since the 90,s so went in a different direction just not stopping found other things to do I love connect as this gives me an outlet to use some of my knowledge as a nurse I can't take the fibro meds they don't work but Fibro Malic does ,chair exercise,warm pool ,Tens unit ,ice ,heat Dr. put me on Tramadol when I fractured back that was the last med left me on it I still take it 1 from 4 then Meloxican for arthritis Hope some of this helps Biggest is to say No listen to your body fibro warriors we are

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lioness | @lioness | Mar 9, 2019
In reply to @sandymom "Parus I lost the group you mentioned maybe gratitude?" + (show)
@sandymom

Parus I lost the group you mentioned maybe gratitude?

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@sandymom Yes as Parus said the gratitude group

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sandymom | @sandymom | Mar 9, 2019
In reply to @parus "@sandymom Try to not get into stressful situations. Will admit this sounds shallow as my day..." + (show)
@parus

@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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Gratitude, where is this group It says none. Thanks

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sandymom | @sandymom | Mar 9, 2019
In reply to @sandymom "Excellent! I love this choice !" + (show)
@sandymom

Excellent! I love this choice !

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Stop & change direction is fine but joining country clubs churches groups in your vicinity that specialize in fibromyalgia etc is just not my thing so having trouble changing direction. Also Raised 3 kids. Had small antique store. Worked in hospital ob/gyn Hospice. Raised a bipolar manic depression husband. Or rather dealt with him being my youngest sons father & believing in him when no one else would. I am no better off than anything. Kind of lost now & in pain. Appreciate your input.

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2 replies
lioness | @lioness | Mar 9, 2019
In reply to @sandymom "Stop & change direction is fine but joining country clubs churches groups in your vicinity that..." + (show)
@sandymom

Stop & change direction is fine but joining country clubs churches groups in your vicinity that specialize in fibromyalgia etc is just not my thing so having trouble changing direction. Also Raised 3 kids. Had small antique store. Worked in hospital ob/gyn Hospice. Raised a bipolar manic depression husband. Or rather dealt with him being my youngest sons father & believing in him when no one else would. I am no better off than anything. Kind of lost now & in pain. Appreciate your input.

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@sandymom. When you reply to anyone please put the @before name as we know who you are replying to

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buckimom | @buckimom | Mar 9, 2019
In reply to @jmjlove "Oh, my, 3? Poor you. My first knee replacement was done 18 years ago. Won't be..." + (show)
@jmjlove

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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@jmjlove - I’m not sure when my balance became s problem. I do remember my son saying “mom, what are you doing?” As I staggered thru his living room, lol. Then I began to pay attention. I believe the problem is exasperated by the cancer drug. I’m in physical therapy for radiation damage and balance. Just started recently and am looking forward to walking sober, lol. Do you do PT since your stroke? We have to “keep on keepin’ on” as my kids tell me . . .

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2 replies
Parus | @parus | Mar 9, 2019

@sandymom Look under the Just Want To Talk in the group directory and you will find the Gratitude Discussion there. Hope this helps.

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sandymom | @sandymom | Mar 9, 2019

@ parus have you heard about Keamine now, mostly for depression? Now trying for fibromyalgia. Found gratitude. Thankful for you today!

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