Baffled by a Fibromyalgia Flare-up That Came Out of Nowhere?

Welcome to another Question of the Week.

Right now, a lot of us living with chronic illness are experiencing symptom flare-ups that seem to have come out of nowhere.  These flare-ups are sure making our lives miserable.

I've been struggling with new onset severe low back and hip pain since December 23rd.  It feels like it's turning into the pain that just won't go away!  So after I finished being perplexed and puzzled, I put on my thinking cap and started investigating it like a fibromyalgia scientist.

What?  You don't know how to be your own fibromyalgia scientist?  Here, let me show you:

My Observations

I had immediate pain after the scooter ride on December 23.  I underestimated that new pain and continued running errands later that evening.  I also spend the 24th doing all the Christmas tasks I put off until the last minute. That resulted in the pain getting much worse for the following two or three days.

On the 25th and 26th, I was in full flare-up management mode, resting more, cutting way back on my activities, taking my flare-up medications and using ice and heat to manage the pain.  With these efforts, the pain started getting a little bit better by December 27th.

Then the pain started getting much worse around December 29th.  On December 30th, I woke up with a sore throat and felt feverish.  I immediately cut back on my activities, started resting more and starting taking my flare-up medications again.  After a few days, I noticed that the pain started improving as I fought off whatever viral illness I had.

By January 6th the pain was much more tolerable: not completely gone but resolved enough that I started adding activities back into to my schedule.  I decided I was ready to help my hubby take down our low-altitude outdoor holiday decor on Saturday January 7th.  That night and the following day my low back pain came roaring back with a vengeance.

So, for the third time, I was back in flare-up management mode...

My Analysis

• Sometimes you have no idea that something is going to flare you up, like my bumpy scooter ride. The good news is you can take this new knowledge and brainstorm ways to prevent it from happening again.

• There are also some flare-up triggers that are completely out of your control, like getting a cold or the flu or the weather becoming cold, damp and miserable.  If a flare-up seems to come out of nowhere, these might be the culprits.

• Once you are flared-up, making the decision to push yourself instead of cutting back will definitely make your flare-up worse.  You have to decide if pushing is worth the payback AND accept the consequences.

• It usually takes longer to recover from a flare-up that we expect.  It is hard to be patient, but jumping back into the swing of things when you first start to feel better might result in a relapse of your flare-up symptoms.

My Conclusions

What can I say?  This has been the perfect storm of flare-up causes and exacerbators, some out of my control and some definitely within my control, all jumbled up together.

In retrospect, I could have made some different choices which might have gotten me out of this flare-up cycle by now.  Ah, but I live and learn.  So now my number one priority is to get this flare-up calmed down and under control in the next two weeks, barring any further complications out of my control.

(Two weeks might seems like a long time, but considering that this pain has been around for the last 17 days, maybe I should revise my plan to three weeks!)

What About You?

Now that I have shared my method for being a fibromyalgia scientist, do you have a new understanding of your current flare-up symptoms?

I'd love for you to share what you have discovered as well as how you cope with painful flare-ups.  As always, I welcome you comments here or over at the Oh My Aches and Pains! Facebook page.

If you are having a hard time implementing my suggestions, feel free to drop me a line using the Contact Me link under my blog header.  Perhaps together we can figure out the cause of your flare-up and some steps you can take to help you get back into control of your fibromyalgia self-care.

Related articles

• Painful Payback from a Very Bumpy Ride (ohmyachesandpains.info)

I'm Not Afraid of Halloween Anymore

Image via Wikipedia

As a fibromyalgia scientist, I discovered how to enjoy Halloween again.  My secret: I assembled a team of ghouls and put them to work helping me decorating, preparing, setting up and handing out candy.  I first tried this method last year and enjoyed Halloween again after a four year absence of participating in the neighborhood celebration.  I learned from last year's experience and tweaked and refined the process for this year.  Today, in addition to getting everything ready and completing last minute preparations, I am scheduling in some rest time to bolster me through the evening.

I will be tired tonight and I will need to schedule extra rest and recovery time next week, but being a part of life in my neighborhood and sharing the fun and festivities with my family and friends makes it worth it.  I reap the benefits of being a fibromyalgia scientist and sometimes it is scary good.  This is the goal of my efforts to learn to live my best life despite chronic illness.   

Fibromyalgia Scientist Case Study: Grocery Shopping

Image via Wikipedia

Over the past few days I've been talking about how I have embraced becoming a fibromyalgia scientist (see How to Become a Fibromyalgia Scientist and  Embracing My Life as a "Fibromyalgia Scientist").  Then I went grocery shopping today with my husband and realized that despite my best efforts to make this task fibro-friendly, nothing short of a significant recovery would make this 100% easier.  Like taking a shower, grocery shopping is a workout.


The first thing I grab when I walk through the sliding glass doors is the shopping scooter the grocery store provides.  This is by far the pivotal strategy I employ that makes grocery shopping more manageable.  At this point, I make it a point to exclusively patronize the stores that I know provide shopping scooters.  I used to bring my rolling walker, but quickly realized that it wasn't the right tool for the job.  How did I come to this realization?  By reviewing my symptom levels for the next several day following a trip to the grocery store using an activity log.  I found that when I used the shopping scooter, there was definitely less "payback", i.e. increased symptoms and increased need for rest.


Not only did I need to acknowledge that I needed to use a mobility aid to grocery shop, I also had to adjust my mindset about using one---and so did my husband.  The most difficult part of having an invisible chronic illness is that you don't look sick and sometimes people give you funny looks when you pull into a disabled parking space, using a mobility aid or don't give up your seat for someone else.  What helped me get over this mental hang-up was seeing what a positive difference using these resources made in helping me better managing my symptoms.  Once I was sold on their utility, and my husband could see the difference as well, we started caring less and less about how other people judged me when I used helpers like the shopping scooter.  


My other grocery shopping strategies include:

1. Always bringing someone along with me when I go grocery shopping.  I ask them to help by loading the groceries onto the conveyor belt at the checkout and into the car.  And if I get too tired, I can ask them to drive home. 
   
2. Beating fibro-fog by always shopping with a list and having my shopping companion double-check to make sure I put everything on the list into the cart.
3. Going shopping during off-peak times, when the store is less crowded.
4. Breaking the task of putting the groceries away into steps.  First, I focus on getting the perishables into the refrigerator and leave the dry goods in the grocery bags.  Then I rest. When I am rested, I return to the kitchen and put away the dry goods.

Grocery shopping is a task that requires planning and extra rest before and afterward.  It is definitely reserved for days when I have no other plans that require me to leave the house.  As a fibromyalgia scientist, I've succeeded making it about 50% more fibro-friendly, which is significant because every little change I can make helps me manage my life with chronic illness better.

How do you cope with everyday tasks when living with chronic illness?  Leave me a comment and share your strategies.   

How to Become a Fibromyalgia Scientist

Image by NIOSH - Nat Inst for Occupational Safety & Health via Flickr

Yesterday I wrote about the aspartame controversy, asking the question "Is aspartame really sweet poison?" After reading some of the numerous websites that state that aspartame intake may cause fibromyalgia symptoms, you might be left wondering if aspartame is affecting your health negatively. So what is the average person living with fibromyalgia supposed to do when faced with questions like this? My suggestion is to become a fibromyalgia scientist. Here's how:

1. Make a list of all your symptoms, for example: pain, fatigue, problems concentrating, headaches, etc.
2. Next to each item, rate the severity of the symptom using a scale from 0 to 10, with 0 being no symptoms and 10 being symptoms so severe you are bedridden and unable to function.
3. Now plan how you will eliminate aspartame from your diet. Carefully review all the foods you eat that contain aspartame, like diet sodas, Equal or Nutrasweet packets, sugar-free pudding mixes, sugar-free drink mixes, sugar-free ice cream and Popsicles, sugar-free gelatin mixes, sugar-free cookies, etc. Decide what you will substitute for these products.
   
4. If your main source of aspartame is diet sodas, take into consideration how much caffeine you are ingesting per day. If you consume a lot of caffeine, you might experience caffeine withdrawal if you stop drinking caffeinated diet soda abruptly. Consider tapering your consumption over several weeks or substituting another caffeine containing beverage like coffee or black tea.
5. For each day you stop or taper your aspartame usage, go back to your list of symptoms and rate each one. Be sure to add any new symptoms that emerge during your experiment. Also indicate on your logs any other significant changes to your medications, lifestyle or diet that might be affecting your symptoms. Ideally, you will conduct your experiment over the course of four to six weeks, assessing your symptoms daily.
6. At the end of four to six weeks, review your logs. Do you see any improvement in your symptoms? Did any symptoms get worse? Did any new symptoms emerge?
7. Consider sharing your logs with a friend or family member. Having two or more sets of eyes on the data you have collected might help you see changes or trends that you missed.
8. At this point, if your experiment is inconclusive, you might consider adding the aspartame containing products back into your diet to conduct your experiment in reverse. Again, rate the severity of your symptoms every day your symptoms. After four to six weeks, look for improving or worsening symptoms, new symptoms and other trends.
   

Now I have to admit that while I was a science major in college, it wasn't until I became involved with the online CFIDS and Fibromyalgia Self Help program that I was encourage by founder Bruce Campbell, PhD to apply these scientific techniques to my life with fibromyalgia. In the article Recovery from CFIDS: What Worked for Me he explains how he used the scientific approach to find his limits, figure out what worked for him and what didn't and track his slow recovery from chronic fatigue syndrome. The other great thing that Bruce provides is sample forms that can be accessed and used by anyone wanting to become their own CFIDS/FM scientist.


For the aspartame experiment above, I would suggest using the My Target and Symptom Log forms. On the My Target form, Bruce advises that you set targets with an 8 or higher confidence rating to ensure that you set yourself up for success. If you can not set your confidence at 8, consider changing your target.


Once you try it, you may find that this approach is helpful in a variety of situations, like when you start a new medication or make lifestyle changes. As you experiment and find what works for you, using logs to document changes in your symptoms can really help you determine if something helps or hinders you. I'd love to hear from you if you choose to undertake the aspartame experiment or if you devise your own experiment using this example as a template.

Disclaimer: I am not a medical professional and this post does not constitute medical advice. Always consult your doctor or registered dietitian if you have concerns about the effects the foods and drinks you ingest have on your health and your chronic illnesses.

Is Aspartame Really "Sweet Poison"?

Have you seen the email "Sweet Poison"? It has been making the rounds since 1998 according to the Snopes.com website. It has been sent to me twice recently with a new addition to the original text of the email.

At the top of the revised email there now appears a supposed case history of a woman who drank aspartame (Nutrasweet, Equal) sweetened soft drinks and developed multiple sclerosis (MS) in 2001. Her symptoms included muscles spasms, the inability to walk and severe chronic pain. The author of the email recounts that she advised her sister to stop drinking diet soda and a good portion of her symptoms disappeared in 72 hours.


The email then goes on to identify systemic lupus, MS and fibromyalgia as some of the illnesses caused by aspartame.

Snopes.com states that the information in the email is false and cites the FDA, the medical journal The Lancet, Dr. Dean Edell, the American Council on Science and Health, the MIT News and TIME magazine as sources refuting the claims made in this email. And the widely held belief that the United Kingdom (UK) has banned aspartame? I could find no confirmation of this apparent fabrication. What I did find is this information:

Several European Union countries approved aspartame in the 1980s, with EU-wide approval in 1994. The European Commission Scientific Committee on Food reviewed subsequent safety studies and reaffirmed the approval in 2002. The European Food Safety Authority reported in 2006 that the previously established Adequate Daily Intake was appropriate, after reviewing yet another set of studies.

It has also been investigated and approved by the Joint Expert Committee on Food Additives of the United Nations Food and Agricultural Organization and World Health Organization.

On the other hand, there are plenty of Internet sites and web pages devoted to warning people about the dangers of aspartame and other artificial sweeteners. The websites appear genuine in their concern for people's health and safety and some are so well written and present convincing arguements; it's hard to know if their messages hold any truth. There are several campaigns around the world, including in the UK, trying to get aspartame banned, but so far none of these efforts have been successful.

Apparently Coca-Cola and Pepsi are getting the message that people want a natural alternative to artificial sweeteners. Both brands released their versions of stevia based sweeteners this year, Truvia and Purevia respectively. Both are also awaiting FDA approval to start using stevia sweeteners in their diet cola products. In the meantime, Zevia is selling a stevia sweetened soda line, marketed as a supplement, in store like Whole Foods and Gelson's here in Los Angeles. (I've tried it and it's not bad, but my husband gave it a thumbs down.)


So as a person living with fibromyalgia and Type 2 diabetes, I had to stop and ask myself, "Could drinking diet beverages and using artificial sweeteners be contributing to my chronic pain and fatigue symptoms?" It is true that some people are highly sensitive to artificial sweeteners and can develop symptoms like headaches, dizziness, vomiting, diarrhea and fatigue. It may even be possible that some extremely sensitive people could develop an allergic reaction or maybe even severe symptoms. But for the overwhelming majority of us, aspartame and other artificial sweeteners has been proven to be safe to consume.

So how does the average person with fibromyalgia decide if claims like these apply to them? By becoming a fibromyalgia scientist of course! I'll teach you how to become one tomorrow...

Disclaimer: I am not a medical professional and this post does not constitute medical advice. Always consult your doctor or registered dietitian if you have concerns about the effects the foods and drinks you ingest have on your health and your chronic illnesses.

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• Sensitivity to aspartame probed (news.bbc.co.uk)
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• Artificial Sweeteners: How Bad Are Saccharin, Aspartame? (time.com)
• Sugar: Naturally Sweet Stevia Products Gain on Splenda (time.com)
• Could a new South American sweetener conquer the world? (nationalpost.com)