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Message Board > Miscellaneous > Fibromyalgia Talk ( Moderated by Deepika, EleanorSews, CynthiaSue)

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Fibromyalgia Talk
Share, complain, support, etc...
Kim12469
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Kim12469
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Date: 2/6/12 1:25 PM

Based on the response from the exercise thread and other threads I've seen discussing fibro, it seems there are a number of us dealing with it.

I thought maybe a running thread where we can talk about remedies, how your days are, exercise ideas, foods, support, etc. Anyone interested?

I'll go first...

I think I've had it for 20 years but only recently got a real diagnosis. It's actually been a good thing because now I know that a flare up isn't the flu sneaking up on me, etc. I am getting better at recognizing them and dealing with them. It's also kind of weird to start putting together these oddball symptoms that I thought were just "me"...kwim?

For example, yesterday I put on a pair of jeans that I can usually wear, but OMG they were so umcomfortable yesterday. I had to change and put on a long flowy dress. I had this thought that it might be my fibro flaring and Googled "Clothing and fibro" and sure enough there are other people who complain about it. I always have issues with clothing but sometimes are worse than others. It's so liberating to realize you are not crazy!

My fibro has been flaring up badly lately due to stress which results in sleeplessness and swings back to my fibro....vicious cycle! I'm trying to up my vitamins and eat better which is all I can control at the moment. I'm trying to weave back in a litle exercise too.

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http://kimsewsilly.blogspot.com/

pkoller
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In reply to Kim12469


Date: 2/6/12 4:15 PM

Ohhhh!! Great idea for a thread.

I was diagnosed in 2007 after a year of being poked, prodded and tested. And I "wasted" 2 years with a doctor that had no clue how to treat fibro even though he advertised he did. The new doctor I went to said he thought I had had fibro all my life.

My fibro is classified as severe. My meds are Lyrica, Cymbalta, Requip, Tramadol and Flexeril. Sleep is an issue for me too. And it is a vicious circle. Because of the pain, memory and issues I have with balance, I was declared disabled by Social Security. I didn't really want to stop working but I had no choice. Being an insurance agent requires good memory skills and focus.

And I totally know what you mean about clothes. A lot of the time clothes hurt. That is why I started sewing again. I want to develop some TNT patterns that are comfortable but stylish. Pain causes me to feel frumpy enough - I don't really want to look that way too. Now if I could only find a comfy bra.....

I would love to hear what others are doing to help their fibro.

Big gentle hugs to everyone



Patricia

Terri A
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Terri A  Friend of PR
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In reply to Kim12469


Date: 2/6/12 4:58 PM

Currently sitting in a condo RACKed with pain while everyone else is skiing, due to fibro. :-(

Kim12469
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Date: 2/6/12 5:00 PM

So sorry Terri!

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jynclr
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Date: 2/6/12 5:05 PM

How were you guys diagnosed with fibromyalgia?

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Evelyn: Pfaff Creative Performance
Helen V: Babylock Companion BL1550

m/m

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Date: 2/6/12 5:08 PM

I've used the therapeutic pool at a local rehab hospital for years. I don't have fibro but a number of the people who use the pool do have it and love exercising in the warm water. Our pool is about 93-94 degrees F (slightly below body temperature) and it's the combination of the warmth and the water's ability to reduce strain on joints that works well for people.

These pools aren't easy to find but they work wonders for many people plus the "pool people" make a wonderful support group for all of us. No matter what's going on in your life, there's somebody there who's already been through it or delt with it already.

We don't swim; the water's too hot for that. Instead it's more like doing gentle strength and aerobic exercises in a very large, neck-deep bathtub that doesn't get cold.

Just a suggestion if you've got access to one. Very few doctors are familiar with them, unfortunately. I've learned lots about fibro from the conversations there and I know that you all have a tough row to hoe.

Terri A
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In reply to Kim12469


Date: 2/6/12 5:18 PM

Aww thanks... One thing I try to do is always look for a bright side. If I play my cards right I will make it out for some activity this evening, which will be fun. Currently, reading my sewing mags:-)

pkoller
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In reply to jynclr


Date: 2/6/12 6:55 PM

I was fortunate - I was having a conversation with a friend about my frustration. She asked about my symptoms. Turns out she had fibro too. She recommended her doctor and I made an appointment. This was the doctor I wasted 2 years with. But at least I knew what I had.

Treatment and diagnosis have come a long way since 2007. The key is finding a good doctor. There is a "good doctor" list at co-cure.org. They are separated by state.

I hope this helps.

pkoller
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In reply to m/m


Date: 2/6/12 6:59 PM

That sounds heavenly......sigh. I live in a rural are - the middle of nowhere.

sewbehind
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In reply to jynclr


Date: 2/6/12 7:30 PM

I was referred to a rheumatologist and they test for tenderness, plus symptoms, fatigue etc. He was the one who diagnosed me.
I do tend to think that fibro becomes a bit of a diagnosis of exclusion. They are not sure what else it is, sooooo..
Helen

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