F is for Fibro, G is for Gluten

I’ve caught a bit of a breather today at work so I’m able to get a quick post in for the first time in forever. And not that I want to continue to discuss health issues all that much, but I got a fair number of emails about the fibro thing – support from others who have it, or illnesses like it and questions on how I cope with the pain all the time and things like that.

And I don’t have a huge amount of answers simply because I’m wrapping my brain around it myself right now, but figured I would maybe touch on a few things I am trying that may help.

1. Going gluten free. I’d had a few people suggest this before, but I’d sorta poo-poohed it, because I love carbs. I eat pasta all the time and how could I possibly think of cutting it completely out of my diet? Well, this past weekend was probably one of the worst of my entire life, both in pain and sheer messed-up-edness. Is that a word? Well, at any rate after the third or fourth night in a row of no sleeping and being completely foggy-brained and just unable to function, I went and jumped on the gluten-free wagon.

Turns out gluten causes a lot of the same symptoms as fibro in people who have allergies or sensitivities to it.

So I stopped eating it. It may be a little too early to tell if it will have any effect on the pain issues, but I am less foggy brained and I think I’m sleeping better.  Definitely beginning to have more energy. I suppose it could be a placebo effect, but what’s really weird is that I have to force myself to eat. I no longer have any sort of appetite at all. It’s like food doesn’t interest me anymore -and that’s freaky, given how much I generally do like to eat.

This was cemented yesterday when I went to the Cheesecake Factory for my birthday dinner. CF is supposed to start implementing GF menus this month, and I thought my local one had done so, but I guess that doesn’t start until this weekend. I went and ordered as best I could…but I gave into the temptation that is fried mac and cheese balls – ate one of those bad boys and another small piece of bread. And within 30 minutes my stomach began cramping up so bad I had to leave after I finished the rest of meal…and I didn’t even have any cheesecake at all. 🙁  (I ordered it to go, but I honestly have zero inclination or desire to eat it. This NEVER happens, you understand.)

The upside to this appetite thing is that I’ve already dropped 2 or 3 pounds this week, simply by not snacking like I usually do, so that’s a side effect I don’t mind at all. (It’s possible this is a side effect that will wear off after a few weeks. I have no idea.)

2. The Guai Protocol. This is specifically for people with fibro. It’s one of those things that hasn’t officially been proven to work, but it’s not hard to do, since it mostly involves taking Guaifenesin (Mucinex) and cutting out Salicylates. I figured it was worth a shot, anyway, so we’ll see how that goes.

3. Weighted blanket. Jury is out on this since I haven’t gotten it yet, but it should be here by Monday. One of the things I’ve noticed is that I seem to crave wrapping myself up in something soft all the time. Apparently weighted blankets tend to soothe this craving and also help with sleep. They’re not cheap so it might be better to try to make one yourself, but I’m just too tired to make that happen, so I bought mine from Mosiac.

4. Pain Management App – My Pain Diary I am completely shitty when it comes to keeping track of anything, but I just plug in what hurts and how I’m feeling and what I think it’s being caused by (e.g. weather, SI dislocation, driving) and that sort of thing. It produces a pdf graph you can take to your doctor which is nice if you’ve started a new medication or something and you want to get a visual idea of how things are progressing.

5. Sleep App – Sleep Time. This is pretty cool – you turn it on and sleep with your phone on the bed and it determines the sort of sleep you’re getting. How much time you’re spending in light vs deep sleep vs awake – and again, the paid version keeps long-term records so I can figure out if something I’m doing is making sleep better or worse.  Plus it determines the best time to wake you up gently via alarm based on that sleep pattern, so you’re not jerked out of a deep sleep.

So that’s what I’m working with. Always interested in hearing other people’s experiences with pain management, so feel free to share ideas or thoughts. 🙂

In the meantime, I’ve scheduled my double fusion for the end of September. Scares me to death, but I’m so tired of hurting so at this point I don’t think I have much choice.