Living with Fibromyalgia Pain: Coping Methods

I have been in pain for the last few months, more than usual, as the weather changes and an infection have been taking their toll.  Considering I cannot take any pain killers, the pain makes things difficult.  Some days, I don't have much energy since so much of my energy goes toward dealing with pain, but others, I'm able to deal with the pain just enough.

The first key coping method is ignoring the pain.  I have years of experience in doing this.  It's amazing how much pain you can ignore, especially when you have something more important to focus on.  In my experience, we can ignore even very high levels of pain in short bursts.  Our kids need us, the pot is boiling over, our significant others call us from the other room, we need to get ready quickly for an important event, or something equally significant and short--any reason to set aside the pain in our minds, compartmentalize and wall off the pain for a short time, can be used to mute the pain for a little while.  When pain levels are low, we can do it for longer, but when pain levels are high, we can only do it in short bursts.

The second key coping method is spacing things out during the day.  If you know you have a lot of different things to get done that will take a lot of energy, space them out as best you can.  Waiting until later in the day and then doing everything all at once will only make the pain worse the rest of the day and into the night.  This lesson is one I'm still learning, especially when mornings are so difficult, but if I put about an hour or so in between errands or taking the kids hither and yon, it helps keep the pain to a lower level.

The third key coping method is self-care.  My pain is always worse when I don't eat, let alone when I don't eat right, and then don't take my supplements and medications.  My pain level goes up with less sleep or worse sleep or both.  While a shower might be beyond me some days, a hot bath with Epsom salts can make me able to drive, so putting it off just makes things worse.  When I stop taking care of myself, the pain is always worse, so sticking to a routine and making sure to eat, take my pills, bathe, sleep as well as possible can help keep the pain at a more manageable level.

Lastly, the most important coping method is rest.  On really bad pain days, I have to make myself rest.  I can do myofascial release, yoga, hot baths, take all the right pills and eat well, and if I don't rest, the pain will make sure I do sooner rather than later.  Resting with my feet up, knitting, sleeping, reading, resting of any kind helps.  As Dr. Liptan says, in fibromyalgia, our bodies are in a constant state of fight-or-flight, and only rest can really trigger the rest-and-release state we so desperately need.

Of course I use other coping methods: tai chi and yoga (depends on my mood that day and my pain level), meditation and prayer, walking, gardening to be outside, various supplements, water exercises, and more.  Thing is, they don't all work all the time on my pain.  Using the key strategies and then trying these others until finding what works that day are really the only ways I have for dealing with my pain.

What methods do you use?

Small Rant: Emergency Room Adventure

I've been fighting some sort of virus for over a week now.  I thought it was just a bad fibro flare but yesterday had to admit that dehydration was also likely.  My doctor told me to go to the ER for an evaluation for dehydration earlier in the week if I got worse, so I finally listened to him yesterday.

The good news is that my kidney is fine and that I wasn't too dehydrated.  I guess my fibromyalgia really hates dehydration.  Anyway, some labs and fluids added up to being sent home with the admonition to call my doctor Tuesday if I'm still fighting this dang thing.

Here's the rant: why don't nurses listen to me when it comes to IV sticks?  I've had a ton of IVs in my life so far (seriously have lost count), and I have learned that A) I'm not an easy stick on a good day and a really hard one when I'm sick and B) if the nurse has to root around after putting the needle in, that IV is not going to work.

So, I make sure to tell the nurses these two truths every time, and every time, they ignore me.  They assure me that they can get the needle in, that they're really good at it, and when they don't get it just right, they root around with the needle trying to make it work.  Every time.  I had three nurses yesterday, and only the third listened to me at all after her first try failed exactly how I said it would.

Meanwhile, the pain from the sticks made me have some of the worst tremors I've had in awhile and definitely freaked two of the nurses out.  Thank goodness, my mom was there to explain that the tremors were my body's reaction to the pain and that it meant the pain levels were really high.  I asked for the ultrasound to find the vein three times, all to no avail.

It's my body, and I know it pretty well.  If they've never treated me before, how does their experience override mine?  Nurses, doctors, medical providers, please, please, please listen to patients.  We know our bodies, and we are trying to help you help us.

If anyone can tell me why medical provider types don't listen to me about this simple thing, please put it in the comments.  I'd love to get some answers.

Fibromyalgia Diet Comparisons (with a spreadsheet!)

If you're like me, you've been bombarded with recommendations for this diet or that diet.  Just read this book, do everything the author says, and you'll lose weight, have less no pain, even be cured!  There are the paleo people, the vegetarians, the vegans, the Whole 30 types, and more.  Honestly, it's all a bit overwhelming.

So, I ended up comparing and contrasting a few different diet plans that have been recommended to me either through fibro resources, doctors, or friends.  I have been trying to follow Dr. David Brady's very high protein Fibro Fix 21 day diet (which I had to stop due to bladder pain), but last summer, my husband and I were actually somewhat successful on the Gut Balance Revolution diet, so that made me wonder what diet would be best to follow.  Yet another friend recommended the Acid Watcher diet, and since my GERD is so very bad, I had to get that book to see what the recommendations were.  Of course, I wanted Dr. Liptan's input from her book, The Fibro Manual, to round it out.

These diets are all created/promoted by doctors in an effort to help patients.  Paleo and the others are more about lifestyle or losing weight, but for fibromyalgia, we have some special issues that make following a medically-based diet more important.

Here's the full spreadsheet.

Analysis:
Everyone agreed on some common goals.  These are all heavily research-based and very hard to argue against.  Everyone agreed on:

No:

• Sodas, pop
• Sugars, especially artificial sweeteners and HFCS
• Caffeine (though some moderate that with allowing some coffee, tea)
• Fatty protein sources, especially fatty red meat
• Processed foods with lots of hidden sugars and ingredients

Yes:

• Fresh, unprocessed foods, preferably organic
• High protein, especially lean protein
• High fiber
• Lots of filtered/purified water, at least a liter a day
• Probiotics, preferably in real foods like kefir
• More vegetables and fruits, though lower in sugar preferred

The Fibro Fix diet is the most restrictive and the highest in protein.  Honestly, I think it would work for most fibro types.  I just have kidney/bladder issues that make my situation more complicated.  Dr. David Brady is also the only one selling his own supplements and shake powders.  Honestly, compared to the other doctors, in their practices and just promoting their books, he stands out, but also, his book has a lot of research behind it and some very good points in figuring out if one really has fibro or not.  I still recommend the book.

The Fibro Manual does not promote any specific diet, though Dr. Liptan does recommend cutting some big things and following an anti-inflammatory diet.  It sounds like she tends to make it more personalized in her practice, but she agreed with the others on the big areas.

The Acid Watcher Diet makes a strong case for lowering dietary acid big-time in an effort to heal the body from acid reflux and throatburn.  Honestly, I found his arguments highly convincing, and now I'm thinking I need a scoping since I haven't had one for 9 years with worsening symptoms in the meantime.  If your worst symptoms are having trouble swallowing, sore throat, acid reflux, and pain, I would recommend his book, hands-down.  He also has a great set of meal plans and recipes to make it easier.

Side note: If I'm understanding the Acid Watcher diet right, the most likely source of my bladder pain from the Fibro Fix diet is the higher dietary acid involved in making two high protein/high fiber shakes palatable and then eating similar-to-usual dinners with usual acid sources.  Something to think about.

The Gut Balance Revolution really is a must-read for everyone with any sort of health problems.  Dr. Mullin's three phase diet (I only covered 1 and 2 due to those being the ones needed to get started) is based on the latest research on our gut biomes.  The first phase is the most restrictive and hardest to follow, but it's only a month, and it's to get the bad bugs in the gut to die off.  The second phase is designed to re-seed the gut with beneficial flora, and honestly, it isn't all that different from the Acid Watcher diet, especially in each diet's phase 2.

In the end, everyone agrees that there is no one diet for anyone.  We are all individuals, and fibro peeps are the most individual there are.  The best thing is to read through these books and other options, know your body and your fibro, and try a dietary change to see if it works.  Dr. Liptan argues that it really takes 2 months at least to know if a dietary change really works, and the others agree.  Their one month-ish first phases are more focused on resetting things, something I think most of us with fibro can see the attraction of.

At this point, I will be combining some things from the various diets to create one that will work for me and my husband, hopefully our kids, too.  Let me know what you try and how it works out!

I Ran into a Snag

I only have the one kidney due to a tumor ten years ago (long story--probably part of how my fibromyalgia started), which means that my doctor likes to do kidney function tests every once in awhile, just to make sure it's still okay.  The tests a couple of weeks back showed I have a UTI, which was weird because I didn't recognize it from symptoms.  Then again, I often have UTI symptoms (why two urologists thought I had interstitial cystitis), so I ignore them until they become bigger, more real.

Anyway, I got on the Cipro that tends to work (they use the stronger stuff to protect my kidney), started this 21 day diet, and thought nothing of it other than how to make sure I had plenty of time before and after taking my antibiotic with no calcium (it makes Cipro not work).

Yesterday, I got severe pain, the kind I hadn't had in ages.  Take my breath away level pain.  I figured that meant the antibiotic wasn't working and messaged my doctor.  He told me to stop the antibiotic, see if the pain went away, and if I stayed symptomatic, to let my Ob/Gyn know since it's more her area.  No biggie, but then I got to thinking: what if it's the shakes?

Turns out, protein shakes can cause urinary pain.  This is probably why Dr. Brady says to drink half our weight in ounces of water daily, which I'd been coming close to doing for days.  The pain yesterday started not long after my breakfast shake and was bad enough I didn't eat much the rest of the day, though my weight stayed the same.

So, I'm taking a few days off of the Fibro Fix 21 Day Challenge, taking it easy on everything, babying my bladder and kidney with lots of water, asparagus, and my usual supplements (and probiotics, definitely!).  If the pain goes away, that was it.  If it doesn't, then I'll get another urine test to see what's going on.

Fibro Fix 21 Day Challenge: Day 6

I have learned some things already this week:

1) The shakes are definitely doing something to my GI system.  Gas, pain, way too much time in the bathroom, etc. all make me think that the shakes with all those greens are doing something to my system.  Honestly, I am not sure my body is absorbing much of the greens from what I'm seeing and dealing with, which makes me wonder why I'm adding that greens powder to my shakes, wonder what the point is.  Dr. Brady says it's to detox, but I'm not sure that's what's really going on at this point.

2) Banana, frozen fruit, cocoa powder all help make the shakes taste better.  Biggest thing, though, is ice.  They're easier to drink if they're really cold.

3) Getting one of the Blender Bottles with the mixer ball was totally worth it.  One of the problems with these shakes (never having done it before) is that they separate, don't stay homogenized.  If I take too long to drink it, set it down because I'm dealing with something and then come back to it, having that mixer ball in there to blend it back together really helps.  Worth the money.

The Blender Bottles we got also have containers that screw on to the bottom, one of which holds pills.  So helpful!  They hold blueberries, nuts, the powder mix, whatever.  I remember having something similar for the kids when they were little and how helpful it was in the car.  Same thing for adults!  The bottle is only 16 ounces, though, or I'd use it as my main water bottle.  They wash up easily, dry easily, and don't seem to hang onto flavors or smells.

4) If I'm going out at all, I need to plan better with the shakes.  I keep getting caught out running errands or whatever during lunch time or out with Mom, and then I end up eating something I shouldn't or eat my main meal then and then want to eat with my family.  One shake a day is easy, but two shakes are harder to fit in.

5) I really do need to stop doing that much gluten.  I ate more bread yesterday, and my weight went up.  I think Dr. Brady and Dr. Mullin are on to something there.  It doesn't do anything to my pain levels, but it sure does to my weight.  I need to cut down further.

So far, my GI system is starting to mostly stabilize, my pain is better due to weather stabilizing a bit, and I'm sleeping better with more GABA at night.  We'll see how it continues.

Fibro Fix 21 Day Challenge: Day 3 Report

Today has been a challenging one.  I woke up with severe pain today, most likely due to the rain, and the brain fog and dizziness were worse than usual.  I wasn't sure I would be able to stick to the diet at all today.  The good news is that I managed to stick to most of it.

First things first: the shakes are better with banana!  Thank goodness I got some bananas at Costco yesterday.  Almond milk and bananas with something else for flavor, like cocoa or frozen berries, are perfect.  I can definitely drink these now.  For the morning one, I added a bit of cocoa, a bit of peanut butter, and half a banana, and it was good!  For the afternoon one, I added half a banana and some frozen berries, and it was good, too, so I have solved that dilemma.

Next, symptoms so far: my husband and I are definitely having GI stuff going on.  It is really uncomfortable, but it will probably pass soon.  At least, I hope it does.  Dr. Brady does call this a detoxifying program, so maybe that's what is happening.  When we did Phase 1 of the Gut Balance Revolution diet last summer, we had some GI stuff but not like this.  That said, this program is similar enough that it might be helping us re-do the gut biome.  It did resolve eventually, so this should, too.

Now we're trying to figure out how to make sure we get both shakes in each day.  The snacks and dinner are easy enough, as is the first shake of the day, but it's the second one that's tricky.  If I do the first shake later in the morning due to not being able to get up and around, I'm not interested in the second shake until later in the afternoon, which then makes dinner a bit of an issue.

So far, fibro pain is worse, though that isn't necessarily due to the diet change, what with all the weather changes lately, and GI issues are worse, though he warns of that in the book and says it will resolve.

Fibro Fix 21 Day Challenge Day 2 Report

Day 2:

I started out the day with Dr. Brady's Morning Brew with a twist, cinnamon instead of chili powder, and it really did help me wake up better.  I will keep doing this every day.  The hot water, lemon, and cinnamon really help me wake up.

We were out of almond milk, so I used Happy Tree Original Maple Water with the shake mix and a dollop of hot chocolate mix.  I managed to get it down, but seriously, the greens mix makes the shake taste nasty on its own without flavor to help.  The taste stayed in my mouth all day.

I had lunch out with my mom, so I just got a small lunch (salad and one baked chicken thigh).  I had a snack later, but by the time of dinner, I still could taste that shake flavor and ended up having dinner instead.

Tomorrow, Morning Brew and two shakes.  I have some ideas about how to make it more palatable and got what I needed at Costco.  Tomorrow, cocoa and banana and then frozen berries with some yogurt (maybe).