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fibromyalgia flare frustration

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Old 09-23-2008, 03:29 PM   #1
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Default fibromyalgia flare frustration

As I'm losing weight a bit faster, and becoming more active, I've been flaring so much more than usual. Sunday, hubby and I went to Lane Bryant and I tried some clothes on. I was excited to be able to find something that fit for my MIL's wedding on Thursday.

Yesterday and today I've been completely "wiped." For me, flares seem to be triggered by weather changes and any drastic changes in my routine (especially sleeping patterns, but also diet, activity, exercise, stress... it really can be anything "different"). But the thing is, in trying to lose weight, drastic change in the routine, comes with the territory. I'm making changes as slowly as I reasonably can, and it's still not slow enough to prevent the flares.

I'm not going to stop dieting and exercising to prevent the flares, but I feel like I'm back at "square one," trying to find ways to cope with the flares. Trying to pinpoint how or when I "overdid it."

I was supposed to lead the program last night for my TOPS meeting, and I didn't even wake up until almost 2 in the afternoon (for me, flares generally include excessive sleeping). Hubby took control a bit and emailed that we weren't able to attend, but I'd forgotten to tell him that I was supposed to lead the meeting.

I just feel like as soon as I start to try to have something at all resembling a "real life," the flares smack me down. I know this isn't anything "new," but I keep thinking that positive changes should be making me feel better, not worse. Rationally, I know that I could very well lose all my weight, and still be stuck with the CFIDS/FMS, but I keep expecting more of a "reward" I suppose for getting the weight off. And I do - in that on good days, I feel better and stronger than ever, it's just on bad days I still feel just as badly as ever.

I think for all my frustration at "others" often thinking that CFIDS/FMS isn't "real," sometimes the hardest person to convince is myself. It isn't that I don't understand that the symptoms are legitimate, but I still want to think I have more control over them than I do. That I can "mind over matter" them into submission. That it sometimes works, only encourages me in thinking like that (and then I get a big smack down).

I feel like I haven't slept in days, when the fact is I've slept more than I've been awake in the last two days. I know when I had my first sleep study they found that I didn't ever enter the deepest levels of sleep. Now, whether I "never" do, or just didn't that night, we don't really know, and it's not as though it's anything I have direct control over (I can't "choose" to reach deep sleep). I suspect that when I feel good, I am reaching deep sleep, and that flares happen when or after I've not. Sometimes benedryl helps, but it's hard to convince myself, when I'm sleeping all day to take benedryl to make me sleep all day.

I know when the flare is over, I'll be back to my fatalistic optimistic self, saying "stuff happens," but right now I'm just feeling like I've been flattened by the big, stinking, steaming pile of "stuff" that landed on me.
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Old 09-23-2008, 03:50 PM   #2
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Thumbs up it sure stinks.....

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Old 09-23-2008, 03:57 PM   #3
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oh damn. i'm so sorry. I know how hard it is. I work with a lovely young lady who suffers from fibro. she's actually considering applying for disability.

it's very very real. and i'm sorry you're having a flare.
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Old 09-23-2008, 04:03 PM   #4
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Old 09-23-2008, 04:18 PM   #5
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Fibro is so hard to deal with. When I feel good, I tend to over-do. Then I pay for it for several days.

Sorry to hear that you are having problems.
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Old 09-23-2008, 05:32 PM   #6
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I am on disability, and that was a difficult adjustment (it was hard enough for me to "drop down" to only one job when the health problems started five years before I had to stop working altogether).

We went through a bankruptcy because of my medical bills (the path to a fibromyalgia diagnosis is quite expensive as they run every test in the book to tell you what you "don't" have). And after I applied for disability, I had a run-in with one hospital billing person who I guess I shared a little too much personal information with. I explained that we were doing the best we could with our bills, but only had my husband's income while I was applying for disability for the fibromyalgia. The woman told me rather snootily that I "would never get disability for fibromyalgia," and she knew that people with with fibromyalgia could work, because a coworker has fibromyalgia and manages to work (I did too, for at least five years, and my first symptoms probably started five before that).

When I got my disability approved (without even having to have a hearing), I so wanted to call that billing lady and tell her "so there," but what would it have accomplished?

Fibromyalgia is so hard to really understand (even when you've got it), because you can feel so good one day, and so terrible the next, and it can mysteriously go into remission (I keep hoping for that). When my husband had to go on disability, it was a hard psychological adjustment for him, but doctors had been predicting it since he was a teenager (he has a degenerative bone disease that he inherited from his mother). She's of average weight, but has had two hip replacements and a wrist replacement before turning 60 last year and she needs her knees replaced also. Hubby was told when he was 17 that he'd be on disability by 30 (he made it to 35).

Hubby won't be able to return to work, and will only get worse (he now has severe tmj, probably just another joint going bad). I at least, don't have a degenerative condition, and even may be able to return to work at some point. I'm sure hoping, anyway. It's exhausting and demoralizing though to have friends and family, let alone strangers, say how "lucky" we are (which I'd agree with, if they didn't go on to imply that we somehow "scammed" the system).

Hubby is always on my case about "overdoing it," but it is very difficult on a "good day" not to try to cram every bit of what I've been wanting to do into one day. I guess, if I'm honest with myself I have to say that's what happened this weekend, and in general. It's why my high's and lows are getting steeper. On a good day, I can cram in alot more than I used to, but then the consequences are also worse.

I still don't know how to compensate really well. "Holding back" on a good day seems like such a waste - I want to do it all NOW. My husband says I have two speeds: energizer bunny and comatose.
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Old 09-23-2008, 08:40 PM   #7
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Colleen -- Hang in there! This must be so tough to deal with. Take care of yourself!
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Old 09-24-2008, 08:08 PM   #8
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I was diagnosed about 6 years ago. I know it can be VERY difficult. I personally am still looking at treatment and things that can help. I know fibro is real but I think there ARE things that can be done and there may be things doctors aren't looking at or taking into consideration. I'm not trying to heal adrenal fatigue. Perhaps you could look into something like that too. Stress (and fibro is definately stressful) can make our adrenals weak. Just a thought. Even if it doesn't work, just trying can help you feel better emotionally. You don't feel as helpless.
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Old 09-24-2008, 09:10 PM   #9
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I'm still studying and learning and experimenting also. I believe Dr. Wilson's book on adrenal fatigue was one of the first I read. I don't remember what suggestions I've incorporated from the book, other than the GI diet. It was the first I'd heard of using blood sugar control to treat fibromyalgia.

The books by Devin J. Starlanyl, a physician with fibromyalgia herself, are very good also.

I'm usually not in pity-party mode, and am not sure why I was yesterday, but I'm feeling a little better physically, and a LOT better emotionally. It stormed last night (approaching weather change is often a trigger for me), and MIL's wedding is tomorrow, so I think the combination of all my flare triggers: a carbohydrate binge, sleep deprivation, stress, and weather were all working against me.

Also, as my husband has pointed out today, I may be flaring more often because I've gotten lax in my sleep and self-care routines. I stopped taking my afternoon nap because I felt that I didn't need it anymore, and then when I started getting tired in the afternoons again, I'd talk myself out of the nap (because I didn't want to "go backwards").

I think I'm going back to using my symptoms/treatment journal. Like a food journal, it tends to keep me "on track," practicing what I know works. I tend to think "I've got the hang of this, I don't need the journal anymore," and then I start slacking off.
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Old 09-24-2008, 09:47 PM   #10
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Sorry your Fibropal has you in it's grip at the moment. It has me there as well, with the season changes it is always rough. If it isn't my pal FM, then my other pal OA kicks in.

I know that if we eat things that disagree with our make-up the FM kicks in. Wheat, eggs, sugar, white flour, white rice are all things that can get stuff started in some people.

I hope by keeping your journal you will find your triggers.

Sending you soft hugs.
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Old 09-24-2008, 10:11 PM   #11
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The day before the flare was definitely full of my food triggers. I knew better, and I don't know what inspired it, because I haven't had a carbohydrate blow out like that in geez, I don't even remember when. It seemed like I ate everything I "don't eat anymore."

None of it was major "junk food," because we don't keep that in the house, but some of hubby's "diet food," is my "junk food." Like breakfast cereal, I eat a bowl of cereal about once in a blue moon, and the other day I had three bowls. Another healthy food abused, large gala apples, one would have been fine, but I ate three (and a peach to boot).

It's really no wonder that the flare was a bad one, I really set myself up for it. That's where I think the food and symptoms journals do tend to help me. If I write it down (especially if I sit to write it down BEFORE I eat it, I'm more aware of the risk of overeating those things I'm better of avoiding or severely limiting.

Also, tomorrow is MIL's wedding. I've been nervous about it, and I'm not sure why. I think it's because she's such a Martha Stewart perfectionist, and her groom-to-be is a pastor, and I'm intimidated (which annoys me, because I don't get intimidated easily, so I'm wondering why I want her approval so badly, when she doesn't give it to her son, why would she give it to me).

Hubby's already asking if I'm "up" to going tomorrow, and to be truthful, I don't really know. I feel like he would almost like the "out" himself, but I've missed several of his family gatherings this year due to flares and I know if I miss this one, the family gossip will be that I'm just making excuses to avoid dealing with the in-laws.
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Old 09-25-2008, 11:50 AM   #12
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Hi. I think I am going to start one of those symptom/food journals as well. It's a wonderful idea.

I think the stress of you MIL wedding is helping the FM out as well. You know how we all react to any kind of stress. Take 10 deep breaths and go, or, if you really don't feel well, just do what you really want, and stay home. Nobody should be able to make us feel that way!

Whatever you decide, decide and watch the stress melt away and you start to feel somewhat better.
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Old 09-25-2008, 11:57 AM   #13
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Hey Colleen, I hope the wedding goes well today!
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Old 09-25-2008, 07:01 PM   #14
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The wedding went very well. MIL even said I looked very nice. The ceremony was nice and short. The biggest disaster of the day was my unfortunate choice in shoes (hurt like the dickens), but I just slipped them off whenever I could do so unnoticed.

The reception was just cake, and I did have a piece. I'd intended to split it with hubby, but he turned it down (good for him). I didn't realize until I'd grabbed the plate that it was a corner piece (way too much frosting), but rather than put it back, I just ate around most of the frosting.

An even bigger achievement was lunch afterward. We took hubby's sister out for lunch (an overdue birthday present), and we went to a restaurant (a chain, I'm assuming) called Charcoal Grill. We orderered a sample tray appetizer and burgers with waffle fries.

The appetizer platter was ridiculously huge. I nibbled a bit, but even with the three of us nibbling on it, we took half of the appetizer plate home. AND I didn't even eat my burger when it came. I had guessed that I would eat the burger without the bun, but the nibbles were more than enough, so while I tasted a small piece of the burger (very yummy), I basically took the entire burger home (you couldn't even tell a bite had been taken out of it, as I just pulled off an edge), along with most of the waffle fries.

I was not only happy with what I ate, but with hubby's choices as well. He took home 2/3 of his burger as well, and we laughed that we were bringing home a lot more than we had eaten.

Now the choices weren't optimal calorie-wise, but I think the small portions made up for it. The carb content was a bit higher than I would have liked, but I think it will be fine.

I'm bone tired though, and hubby too - he's already napping, and I'll probably join him.

The sense of relief does seem a bit out of proportion to the event, so I'm thinking it was contributing to the flare. The stress melting is already in progress, surprisingly so, actually. I guess I was worrying more than I thought I was.
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Old 09-25-2008, 09:18 PM   #15
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Colleen that sounds like a lovely way to spend a day I'm so happy things went well, and that you made good choices about the cake and going out to eat!
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