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Honored Contributor
Posts: 8,141
Registered: ‎03-10-2010

Fibromyalgia- the Curse that NEVER Really Quits

I was diagnosed with Fibro over 20 years ago.
I denied I had it, my trusted internist denied I had it, yet one day, during a routine visit for something entirely unrelated, he observed and identified several of the diagnostic clues, and stated that he did indeed consider my condition fibro.

 

Since then, I've sort of rolled with the tide, and most of the time, I've done pretty well.

 

UNTIL NOW. I can honestly say I've suffered (a word I DO NOT use loosely) with sleep disruption, burning soft tissue pain, headache, foggy thinking and "the blues", and several other complaints on the fibro list, for months, no relief in sight.

 

When this has happened in the past, I've lost weight, made some shifts in life style, "bought a new hat", more gentle aerobics, etc., and it's always worked.

 

THIS TIME, I KNOW that I'm bearing too much caregiving responsibility. So what do I do? Who do I tell that I hurt too much to change the diaper, shop for new shoes, do their banking, find their binkie? These are FIVE human beings that I LOVE. Who do I to pull back without disrupting a structure of care of FIVE LOVED ONES already held together with spider webs, and get enough R & R to pull MYSELF together again?

 

Anyone (or everyone!) with diagnosed fibro in the same boat?

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Honored Contributor
Posts: 17,739
Registered: ‎03-09-2010

Re: Fibromyalgia- the Curse that NEVER Really Quits

@violann  I am so sorry to hear this..I don't have any answers. I wish I did. I promise I will pray for your restoration of health. I know how much your family, and your community need you ,and mean to you

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Honored Contributor
Posts: 17,739
Registered: ‎03-09-2010

Re: Fibromyalgia- the Curse that NEVER Really Quits

I found this on webMD if you haven't tried it  it might be helpful

 

https://www.webmd.com/fibromyalgia/news/20190516/scientists-spot-unexpected-player-in-fibromyalgia#1

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Respected Contributor
Posts: 4,325
Registered: ‎05-22-2014

Re: Fibromyalgia- the Curse that NEVER Really Quits

@violann, Your post so touched my heart.  I have no experience with this disease, so I cannot give you educated advice on this issue.  But I can surely advise you to reach out to your doctor and to your loved ones about how badly you feel.  You are a good person to worry about what you can no longer do for others.  I think you need to concentrate on you for now, your health, and how to take care of yourself. Hugs and prayers going out to you across the miles, dear one.

Pam

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Honored Contributor
Posts: 13,696
Registered: ‎03-09-2010

Re: Fibromyalgia- the Curse that NEVER Really Quits

Even if you were in perfect health, that's a big burden. I guess you have to help those who can't do things for themselves first and let other things wait. For example, are the shoes for someone who could hold off having you take them shopping? Would the sick person accept a respite caregiver so you could run errands? I hear your pain in your post @violann but I don't recall the details.

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Super Contributor
Posts: 321
Registered: ‎01-07-2012

Re: Fibromyalgia- the Curse that NEVER Really Quits

@violann  My heart goes out to you.  I have had Fibro for at least 20 years.  It is a hard illness.  Because you don't LOOK sick people don't think there is anything really wrong.  Because others don't realize you are ill, the demands continue until you are at the breaking point.

 

Talk to your doctor!  I've had good results recently with the newly released generic version of Lyrica.  While you have to jump through hoops for your insurance to pay, GoodRx makes this medication affordable for me.  Best of all, I can function much better without the foggy thinking and other side effects I had with some other medications I tried.

When you are having a "good day", try not to over do!  Remember that you have to pace yourself.  You can't go 'full tilt boogie' today and not expect to pay for it tomorrow!  Try to explain this to your family and friends.


Good luck!

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Valued Contributor
Posts: 582
Registered: ‎12-28-2011

Re: Fibromyalgia- the Curse that NEVER Really Quits

@violann: I have had fibro for 33 years and the only thing I can tell you is this. Take care of yourself first and foremost. Because when a relapse that use to last a day or two last weeks or months and you end up bedridden. The people you are helping now will have to find a way to do it themselves. I have been were you are at and I finally learn how to say No, can't do it anymore. 

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Respected Contributor
Posts: 3,816
Registered: ‎03-19-2010

Re: Fibromyalgia- the Curse that NEVER Really Quits

@violann :  I am so sorry to hear of your struggles with fibromyalgia for all these years.   Maybe an honest, heart-to-heart conversation with your loved ones will give you the resolution you need.  If you don't take care of yourself, then there is no help for them.   

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Valued Contributor
Posts: 516
Registered: ‎08-07-2015

Re: Fibromyalgia- the Curse that NEVER Really Quits

@violann  Sending you hugs!!  I'm so sorry, fibromyalgia is a such a challenging disease. Even the westher can throw you off. Then throw on  caregiving for so many,  which you are so lovingly doing is a recipe for constant fibro flares. I have fibro for over 20 years myself. Really flared being a sole caregiver. Definitely you have to address the flares that are increasing. Sleep being #1. At times amitryptiline has been a great med for me with sleep, pain (I won't take cymbalta). I spray lavender on my pillow, peppermint oil, cbd muscle rub with peppermint to soothe me, when I need to be "fog free" etc  Listen to you tube guided sleep meditations etc...its the little things you have to do daily to keep you going. Your body is telling you.

 

Make sure you do any kind of  stress relief with a minimum goal of 3x a week just for you. See how that works, break it down to a must do, workable goal for you. Talk with your doctor about how to get you best through this challenging time. 

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Valued Contributor
Posts: 516
Registered: ‎08-07-2015

Re: Fibromyalgia- the Curse that NEVER Really Quits

@LoveWesties  So true! Thats the biggest issue for me- balancing my activities so I don't crash.