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Old 08-23-2004, 04:29 PM
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ewriggs ewriggs is offline
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Location: Lawrenceville, Georgia
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Cyn - I don't have all the same problems you do - don't have the burning pains as much - but I have many similar problems. I get muscle spasms inside my pelvis that cause enough pain to bring me to me knees - literally - and rise me up screaming in the middle of the night. Now, when I have the spasms in my ribs or back, I usually can apply some pressure and get them to let loose. But inside my pelvis? I've tried various things (let's not get too graphic here) but nothing works. I just have to endure it until it lets up. I think I hit my lowest low when I was not even able to keep up with my home business for over a year. DH was convinced I was dying, and wanted me to be in a nicer house for my last months. We moved here in 2000, and I spent most of 2000 and 2001 sitting and staring into space. Couldn't drive, couldn't do grocery shopping, etc. I was on so much medication for pain I couldn't tell the difference between "drug fog" and "brain fog." Couldn't sleep, couldn't wake up.

Finally, I just got sick and tired of being sick and tired. I went on line and found out about the guaifenesin and thought I'd try it - it wasn't going to hurt me, and it might even help. Got my MD to rx it for me, and started taking it. Insurance drug card covered it, so it wasn't financially onerous. After a while I started having some good days, then a whole series of them. And I decided I'd rather hurt and have my brain, than hurt and not have my brain - the pain meds and muscle relaxants weren't doing that much for my pain. So I stopped taking them.

Now, after 2 years of being on Guai, I'm starting to take my life back a little at a time. No more pain meds on a regular basis. I go weeks without taking any. I can "deal" with the pain most of the time without pain meds. Only take them on the really "bad" days - maybe twice a month - and then only at night so I can sleep better.

I just "decided" to ignore some of the stuff I was so depressed about. Heck, if I can't do one thing, I can do another. On the days I can't sit at the computer for long, I can go do something else. I'm starting to do more exercise, and it helps a lot. I have a couple of hobbies that I can pour energy into. And I am able to spend time with my grandchildren. I still have a few days a month that I just "sit and stare." But they are much less frequent. DH had a stair lift installed for me, but I seldom use it anymore except to get the groceries or big sets of medical records up into the house (we have an "upside down ranch" with the main floor over the garage and basement - have a 14 step flight to get onto the main floor).

My solutions won't necessarily be helpful to you, but some things may help. A lot of it, however, comes from inside us when we make the decision that we won't let this disease take any more of our life away without a fight. It took me 20 years before I made that decision! (Some of us are duller than others!) But now that I've made it, I'm really irritated with myself that I didn't make the decision about 15 years earlier! No, it's not a cure. Yes, I still feel "crappy" a lot of the time, and yes, I'm still limited in how much and what I can do. But I feel much differently about it, and I'm feeling better about myself. I'm doing more than I did a year ago, and I hope to continue to make some kind of positive progress.

But even if I don't and even if I lose the progress I've made, I'm different inside and I'll handle things differently than I did in the past.

My DH has been sooooo supportive - and I know just how fortunate I am. I've met and corresponded with so many people whose husbands, family members, friends all think they are "faking it" for attention. And employers of people with fibro often think the employees are slacking off, and will fire them or demote them. At least I have my own business and can work as much or as little as I need to on a given day. DH put internet cable attachments beside the bed and beside my recliner as well as in our offices. So I can literally do my work wherever I need to be that day - in bed, in my recliner or in my office. I know not everyone can do that, but it works for me, and I am very grateful to God for making this opportunity available to me!

Tonight "feels" like it will be a pelvic spasm night, so I'll probably sleep in the living room in my recliner so I won't disturb my DH. I'm grateful that I usually can "tell" when these are coming on. There's no point in worrying DH, because he can't do anything about it, anyway.

This board is a wonderful place to vent because we've all "been there, done that, got the tee-shirt, and wore that sucker out!" This is a "safe" place to just vent, but lots of times you can find a suggestion or a hint or two that will work for you.

Val - have you tried "Jolt" cola for the brain fog?? LOL! I found it works better than coffee for me. Doesn't taste as good as Coke does, but it has more caffeine.

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