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My friend with fibro died.....
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Cormacbolano posted:
My confidant and good good friend died 2 months ago and I don't have anyone I can call and complain about a flare to.

The local support group here is so into alternative medicine, that as a science-freak, it makes me choke to sit in on presentations there.

But, I'll go next meeting to try to find someone I can have a friendship with.

I am in a flare-up right now, post travel, and have tried to explain to friends how I feel but there is that "talking to a wall" response. I know I need to be very selective in what I tell who.

I'm still smarting from guilt about telling my step-mother (age 75) about how I feel about her. But at least the burden of that relationship is gone. It was a non-intimate relationship masquerading as a close, loving one. No more demands that I take care of my father. They have plenty of resources, just she isn't too smart about what he needs, IMO

The only thing that continues to get to me is a complex regional pain syndrome in my upper back which won't go away. I'm not sure what to do about it. I don't like to spend money but will if it means significant relief.

Thanks for listening.
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BetteK responded:
Please, let us all try to help you in this very difficult time.

No one is going to tell you that people strung out everywhere in cyberspace can or should fill the void left with your friend's passing. What we can give you is a bunch of caring people who each know some of what you are living with.

We don't have the answers. We do have some tips (over on the right of your screen) and a few personal pains and triumphs.

I'm fairly new here, but a 42 year veteran of FM. My initial problem was the pregnancy backache from my second child.
He'll be 42 on the 29th. The backache is a month older. Over the years, I've felt every imaginable variation--and some un-
imaginable ones too--of syntrome. And believe me, if I didn't have it, somebody here did.

So join in. Read what you wish. Reply when you have an idea--any idea. Start a discussion when you have a new question.

Evidently, your usual routine is not helping right now. Ask your doctor for "rescue meds" to be used only when you are in a flare. We all need to have a little bag of tricks handy just in case. (I even believe that just knowing that extra medication is right at hand has kept me from stressing out and going into full-blown flare more than once.)

In the meantime, go over your diet, your sleep routine, any suppliments that seem to help you. Are you taking two warm showers every day? They do help. Do you have a hot pack to use in the microwave? Can you use pillows to support you in bed or your favorite chair? See, there are things you can do to make things better right now.

I'm sure that the others will have plenty of tips and aids, too.

Towards better days,

BetteK
 
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franr responded:
Hi
As Bette said in her previous post you have come from to the right on line support group. Ever4yone here is caring and have logged many years with fibro including myself of 20 years.I am so sorry that you lost your friend that itself would caused you anguish.I just got over a 8 week bout with a major flare,And everyone here was so supportive.I also had severe back pain and with the proper meds and getting enough sleep and rest it finally diminished. Heat from heating ads and the bed buddy in the microwave helps. Take warm baths with soft music. Warm showers also are good. Hopefully you have a understanding MD.This syndrone is not easy but it is not fatal. If you can find the necessary relief it can be manageable. Let us know how you are. Fran
 
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dakotaspirit1957 responded:
Hi hun... Welcom... I hope to see you often here and wjould like to be called a friend...

I also have something that might help you explain to your friends what life is like for you... It is called the Spoon Theory... A woman with Lupus wrote it but it is quite universal for illnesses and disabilities... the url is here...

http://www.butyoudontlooksick.com/wpress/articles/written-by-christine/the-spoon-theory/

I just shared it with my best friend and I know it helped her to understand... She just called me to see if I had a spare spoon for her today lol... Read it you will understand... lol...

I know you will never be able to replace your dear friend here... But we are an understanding group... a caring group... We feel what you feel mentally and physically... We are so much like you that you are a part of us... And we you... Try to vent anytime you need... I talk about anything from my grandkids to the sunset... and then some...

Right now I am off to bed... But you just caught my eye... And I knew to open up your message...

take care... love jan/dakota
 
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Cormacbolano replied to dakotaspirit1957's response:
Thanks to all of you for responding. It's hard to lose a close friend. I read about spoon theory (?) in Bruce Campbell's self-care series for CFIDS and fibromyalgia, which is on the web and very low cost and has an excellent manual. That helps.

Also, I have been rereading Roger King's beautiful book, "Love and Fatigue in America." He has ME/CFS and I don't and his being so much more sick than me and coping with it makes me feel, well, better.

I will go to the next support group meeting and talk to women there and continue to follow discussions here. Thanks again.
 
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HealthyD replied to Cormacbolano's response:
I'm sorry to hear of your friend dying but it's upsetting to hear fibromyalgia can kill someone unless it was really lupus! I'm praying for you and I don't want to die doctor didn't tell me I could die from fibromyalgia though tests were saying lupus initially. Did your friend have other complications? Other medical complaints? Please bear with my outbursts I'm just astounded hearing someone dying of fibromyalgia. I have actually had days where I felt like I was dying before any diagnosis though.
 
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HealthyD responded:
Cormacbolono,
I just found this posting I hadn't read, I get severe upper back pain both sides, straight down middle both sides of neck, back of head you name it and limbs to include lower back. I take osteo support for osteoathiritis & rheumatitus and magnesium (minimal) to help with fibromayalgia flareups. I may have some spinal thing going on and osteoporis but doctors too slow to figure it out. My bones started cracking and locking up sometimes I can't move my neck. I have to see military doctors and that's the worst. You could be in pain and they couldn't care about you. I care about you. You gotta be strong! Hang in there.
 
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HealthyD responded:
Have some more for you: Try reading this! Also the more you go without sleep the worse it gets! You have to sleep to help compensate & heal. You can also try chammomile or other relaxing tea just before bed you have to try to get at least 8 hrs of sleep or it'll kill you. I would still stick with natural the more unnatural the worse the symptoms get because of all the chemicals you have stuck in your body which causes flareups especially when you're already in a flareup mode.

And change your diet! It's hard but you gotta try. Read please:
http://www.fibromyalgia-support.net/articles/whatdoctors.htm


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