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Adrienne Dellwo

Fibromyalgia & CFS Blog

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A Guide to Upcoming Changes

Saturday May 31, 2014

It's time for the About.com network of 1,000+ sites to get a makeover! What does that mean for you? The goal is a better over-all experience, and from what I've seen, I believe we're on the right track.

However, things are going to look a lot different, which I know can be disorienting for those of us with fibromyalgia and chronic fatigue syndrome.

To help you adjust, I wanted to give you a tour of one of the early sites to switch over to the new design. It's probably easiest to follow this if you open the link below in a new window, and then put the two windows side-by-side. (Right click on the link, then select "Open in new window" from the menu that pops up.) Here's the link: Neurology at About.com.

Article Pages

You're looking at a standard article page, just like one you'd arrive at from a link in my newsletter or from Google. See that big blue bar at the top? It contains the search box, front and center, and when you use it, you'll get results from that page first. Hooray for easier searching!

The article headline is nice and big, and the article's font is bigger and darker, so it's easier to read. You'll still get suggestions for related articles at the bottom, just in a different format. As you scroll down to the bottom, you'll see other suggested Health content from around the network.

Okay, back up to the top, and we'll look at the left-hand column. First, you'll see the top articles for the topic on every page, under the heading "Must Reads," so they're easy to find.

Below the Must Reads, under "More in Neurology," is a list of categories, such as "Neurology Basics" and "Do You Have a Neurological Problem?" When you click on those, you'll get a list of all the articles on that topic. That area will be available from every page as well, so you won't have to hunt for anything.

Back to the top again, now. To the right of the article, you'll find selection of articles from around About.com Health plus health videos and photo galleries.

What's Going Away?

Two things you may be accustomed to will not be on the new article page:

  • The tabs at the top of the page, and
  • Comments at the end of articles.

However, all the content from the tabs is available from that "More in ..." section on the left side, so it's all still available for you.

I DO NOT want to lose the amazing conversations we have in comments, so I've come up with a solution to that. At the end of my articles, where you've usually seen "Leave your comments below," you'll now see a link to a forum thread that I've created for that specific topic. Just click on it and talk away! This even has several advantages over the old comment system:

  • Once you sign in (you may need to register, but it's free,) you can leave all the comments you want without having to enter your name and email address every time;
  • It's easier to track conversations and make comments to specific people;
  • If you want, you can opt to get an email notification when someone responds to you, so you can get questions answered a lot easier;
  • You can set up things like custom signatures and a "friends" list of people you talk to frequently;
  • Posts will no longer have to go through an automated moderation system, so they'll post in just a few seconds.

The Home Page

The home page is a little different, too. (Right click here to open the Neurology home page in a new window.)

Other than just the new look, you'll notice a few pictures at the top that'll take you to important articles. Below that, you'll see the latest content. In the old design (which is still currently on my site,) you got the entire article. Now, you get a list so it's easier for you to scan for something you're interested in.

If you scroll down a bit, you'll see all the elements from the left and right sides of the screen that were on the article page.

That's really it - a few important changes, but otherwise just a new look for all of the content you want.

I hope this has helped you get oriented to the new design! I'll let you know in the newsletter when my site is going to change over.

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The Gluten-Free Diet for Fibromyalgia & Chronic Fatigue Syndrome

Friday May 30, 2014

Going gluten free is all the rage, but is it a fad you should ignore or something that could really help alleviate your symptoms?

Like everything with fibromyalgia and chronic fatigue syndrome, that depends - on you, your symptoms, and how your body reacts.

My primary gluten-related symptoms used to be digestive but also extended to neurological. Now, the digestive part is all but gone and the neurological ones are much more severe. I also have an inflammatory response, possibly because gluten is somehow aggravating my autoimmune conditions (arthritis and thyroid disease.) Along with increased pain and stiffness, I get extremely tired and even have narcolepsy symptoms if I eat enough. (Narcolepsy is more than you might think and has a lot in common with chronic fatigue syndrome.)

You may have a completely different reaction to gluten. You may also have no reaction to it whatsoever. It takes some experimentation to figure it out.

If you do decide to go gluten free, permanently or as a trial, you have to learn a lot. It's a tough one to avoid, both directly and through cross-contamination, and if you don't do your homework there are a lot of ways to get tripped up.

Here's a place where you can start learning about being gluten free:

It contains a lot of resources that'll help you adjust, as well.

Have you tried a gluten-free diet? Did it help? What have some of your stumbling blocks been, and what has helped you stick to it? Come visit my forum to leave your comments!

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Photo Jodie Coston/Getty Images

Basal Ganglia Problem Linked to Chronic Fatigue Syndrome

Thursday May 29, 2014

New research links dysfunction in the basal ganglia (a region of the brain) to physical and mental fatigue in chronic fatigue syndrome (ME/CFS).

Researchers looked into this region because of its connection with fatigue in neurological disorders, including Parkinson's and Huntington's diseases. It's also linked to function of the neurotransmitter dopamine, which is believed to be dysregulated in ME/CFS.

Research showed that those with ME/CFS had significantly lower activation than healthy controls during relevant mental tasks. Decreased activation was linked to greater fatigue and reduced activity levels.

What is the Basal Ganglia?

The basal ganglia is located deep within the brain. It deals with procedural learning, cognitive function, emotion, voluntary movements, and habitual movements such as bruxism (teeth grinding). It's also believed to help you decide which of several possible behaviors to take.

Cognitive dysfunction, learning difficulties, impaired movement, and bruxism all are symptoms of ME/CFS.

This was a small, preliminary study, but if the results are borne out, it could help researchers finally understand the pervasive fatigue of ME/CFS and also offer new targets for treatment.

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Photo PASIEKA/SPL/Getty Images

Combatting Brain Fog with Fibromyalgia & Chronic Fatigue Syndrome

Tuesday May 27, 2014

A lot of people say that cognitive dysfunction (brain fog or fibro fog) is one of the worst symptoms of fibromyalgia or chronic fatigue syndrome. While we can't help having it, that doesn't mean we have to accept it, either!

Your mental function isn't a static thing. It changes day to day, based on how well you've slept, what you've been eating, etc. It also changes over time, and by taking the right steps, you can improve your brain.

I've gathered together some articles from About.com Health that can help you make positive improvements in how well your brain works:

Remember that this is general information and isn't specific to our conditions. If there's something you don't believe applies to you (such as the recommendation to exercise, if you're exercise intolerant), just disregard it and focus on the things you can do.

(You may have noticed that the Neurology website looks different from the rest. It's an early one to go through the design changes I recently mentioned.)

To learn more about the symptom of brain fog/fibro fog, see:

What kinds of cognitive dysfunction do you have? Have you found ways to improve your brain function? Leave your comments by clicking here to visit the forum!

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Photo D-BASE/Getty Images

Excessive Sweating & Hydration with Fibromyalgia/Chronic Fatigue Syndrome

Thursday May 22, 2014

A lot of us with fibromyalgia (FMS) and chronic fatigue syndrome (ME/CFS) have a problem with excessive sweating. Some also have temperature sensitivity, which involves an inability for the body to cool itself off. During the summer months, those symptoms can combine to put us at high risk for dehydration.

I'm sure you know the basics of preventing dehydration - drink water or other clear liquids, try to stay out of the heat for prolonged periods of time, etc. When it comes to replacing electrolytes once you become dehydrated, though, there are options you may never have considered.

Since we have a high likelihood of food sensitivities as well as often being to sick to run to the grocery store, I thought this was important information for all of us to have.

Re-Hydration & Electrolytes

Do you know what electrolytes are, beyond something you lose through sweat and re-gain from sports drinks? Until recently, I had a vague idea that they were minerals or something, but I didn't have any clue beyond that.

Then I found out I was intolerant of sugar, corn syrup, and aspartame, and good luck finding a sports drink without any of those! I'd also heard that chocolate milk is as good as a sports drink, but again, that contains sugar. I got pretty badly dehydrated with a fever a few months ago, so I did some research.

It turns out that electrolytes are actually rather common minerals:

  • Sodium,
  • Chloride,
  • Calcium,
  • Magnesium,
  • Phosphate,
  • Potassium,
  • Bicarbonate.

I was stunned to realize that those are all things I can get - rather easily - through food!

Sodium & Chloride

These two minerals are usually found together, as they're the two things that make up table salt. That's right - salt, which generally has a bad rep when it comes to nutrition. But yes, it's an electrolyte, which is why they put it in sports drinks.

That makes it easy to get it in your diet - eat something salty, or salt what you're eating. Done!

Calcium

Milk, cheese, yogurt, and other dairy products are the obvious one here.

However, you can also get calcium through broccoli, kale, turnip greens, white bread, and tortillas (both corn and flour.) Salmon and sardines, too.

Supplements are another good option.

Magnesium

Potatoes, sweet potatoes, beef, chicken, rice (brown or white,) bread, oatmeal, almonds, cashews, peanuts, black beans, cucumbers, avocados, broccoli, bananas, apples, raisins, and carrots are all good sources of magnesium.

This is another one you can get through supplements, too. (It helps with muscle pain, so if you're not on a daily magnesium supplement, you may want to consider it.)

Phosphate

You can get phosphate (also phosphorous or phosphoric acid) from turkey, chicken, eggs, almonds, cashews, peanuts, sunflower seeds, salmon, halibut, peas, beans, and garlic.

It's also in cola drinks. I'll have a note on that further down.

Potassium

Dates, bananas, raisins, watermelon, figs, tomato, cucumber, almonds, peanuts, brazil nuts, pork, tuna, cod, salmon, and trout are all good sources of potassium.

Potassium is helpful to a lot of us with these conditions, so these foods cold be beneficial as regular parts of your diet.

Bicarbonate

You usually find bicarbonate in combination with other electrolytes, as sodium bicarbonate or potassium bicarbonate. It's also in some mineral water, saltines (soda crackers,) and soda pop.

A Note on Sodas

Here's a strange thing: while soda is usually considered an enemy of hydration, because it provides little in terms of water, soda actually contains the electrolytes bicarbonate, sodium, and (in colas) phosphate.

It probably shouldn't be your first go-to. If you do use it, make sure you're getting plenty of other liquids as well!

What Helped Me?

When I got dehydrated and started this research, I scanned through lists looking for things I had in the house. What I ended up eating was a turkey sandwich with tomato and cheese; the rest of the tomato, liberally salted; a diet cola sweetened with Splenda, which is one of the only sweeteners I can tolerate; a handful of almonds; and a few dates.

Even though I had the academic knowledge that those things contained electrolytes, I was shocked at how much better I felt within an hour of eating that. This knowledge has also helped since then as I've gone through a couple of nasty, fever-causing infections (bladder and appendix.)

I've also put together a list of these foods for easier reference: Foods for Replacing Electrolytes.

Do you have a problem with frequent dehydration due to excessive sweating? Have you tried replacing electrolytes nutritionally? How did it work? Leave your comments below!

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Photo Serge Krouglikoff/Getty Images

Foods for Replacing Electrolytes

Thursday May 22, 2014

To see why these foods replace electrolytes when you're dehydrated, and why that's especially important for people with fibromyalgia and chronic fatigue syndrome, see: Excessive Sweating & Hydration with Fibromyalgia/Chronic Fatigue Syndrome.

The following foods help replace the electrolytes sodium, chloride, calcium, magnesium, phosphate, potassium, and bicarbonate. This is not an all-inclusive list.

Fruits & Vegetables

  • Apples - magnesium
  • Avocados - magnesium
  • Bananas - magnesium, potassium
  • Beans - phosphate
  • Black beans - magnesium, phosphate
  • Broccoli - calcium, magnesium
  • Carrots - magnesium
  • Cucumbers - magnesium, potassium
  • Dates - potassium
  • Figs - potassium
  • Garlic - phosphate
  • Kale - calcium
  • Peas - phosphate
  • Potatoes* - magnesium
  • Raisins - magnesium, potassium
  • Sweet potatoes - magnesium
  • Tomatoes* - potassium
  • Turnip greens - calcium
  • Watermelon - potassium

*These are nightshade vegetables, which may cause problems for some people.

Meats/Proteins

  • Almonds - magnesium, phosphate, potassium; If salted - sodium, chloride
  • Beef - magnesium
  • Brazil nuts - phosphate, potassium; If salted - sodium, chloride
  • Cashews - magnesium; If salted - sodium, chloride
  • Chicken - magnesium, phosphate
  • Cod* - potassium
  • Eggs - phosphate
  • Halibut* - phosphate
  • Peanuts - magnesium, phosphate, potassium; If salted - sodium, chloride
  • Pork - potassium
  • Salmon* - calcium, phosphate, potassium
  • Sardines* - calcium
  • Sunflower seeds - phosphate; If salted - sodium, chloride
  • Trout* - potassium
  • Tuna* - potassium
  • Turkey - phosphate

*Learn about choosing low-mercury fish.

Dairy

  • Cheese - calcium
  • Milk - calcium
  • Yogurt - calcium
  • Other dairy products - calcium

Grains

  • Bread - calcium, magnesium
  • Oatmeal - magnesium
  • Rice (brown or white) - magnesium
  • Saltines - bicarbonate
  • Tortillas (corn or flour) - calcium

Supplements

Beverages

  • Milk - calcium
  • Mineral water - bicarbonate

Additional

These are foods that aren't typically considered a healthy part of your diet that contain electrolytes and may be beneficial when you're dehydrated.

  • Table salt - sodium, chloride
  • Packaged foods high in sodium - sodium, chloride
  • Soda* - bicarbonate, sodium
  • Cola* - bicarbonate, sodium, phosphate

*Carbonated drinks are NOT beneficial for preventing dehydration as they have low water content.

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Photo Alex Cao/Getty Images

Misophonia in Fibromyalgia & Chronic Fatigue Syndrome?

Tuesday May 20, 2014

Do some sounds make you anxious? What about angry?

We've talked before here about how fibromyalgia (FMS) and chronic fatigue syndrome (ME/CFS) make us sensitive to sounds. What I hear most often is that repetitive sounds make us anxious and can lead to a panic attack.

Then I recently heard about a neurological condition called misophonia, in which certain sounds can lead not only to anxiety, but to anger or even rage. I know that some sounds - especially mouth noises while eating - make me angry rather than anxious. A close family member is even worse about it and also flies off the handle at sniffling or joint cracking. It seems possible that both of us have misophonia. That, plus a few other things about it, made me wonder whether this is behind the noise sensitivity that's so prevalent in our community.

Scant research has been done on misophonia, but what has been done suggests that it's linked to:

  • Tinnitus (ringing in the ears,) which is common in both FMS & ME/CFS;
  • Two areas of the brain which research links to FMS & ME/CFS - the insular cortex and anterior cingulate cortex, which process pain, anger, and sensory input;
  • Dysfunctional structures in the central nervous system and autonomic arousal ("fight-or-flight" response,) which is consistent with theories about underlying mechanisms of FMS & ME/CFS;
  • Anxiety and depression, which are common in FMS & ME/CFS;
  • Obsessive-compulsive disorder (OCD,) which some research suggests may be more common in us.

A lot of misophonia appears to revolve around bodily sounds. Along with the ones I've mentioned, fingernail clipping is a common trigger. Nobody knows why so far.

We don't yet know much about treating misophonia. Some people report that neuro feedback, cognitive behavioral therapy, and general stress management can help. It seems to me that the important thing for us at this stage is recognizing it so we can try to manage it. If you get a better understanding of what your triggers are, you can work with your friends and family to minimize your exposure to those sounds, or, when you are exposed, you can use relaxation techniques to mitigate your reaction.

It's also something you can talk to your doctor about to see if he/she has any suggestions. If you're diagnosed with it, you should also be able to get reasonable accommodation to help you deal with it at work.

A prevalence study showed that misophonia was present in about 20% of participants. While it's not scientifically accurate, I thought a poll here would be interesting. So please, whether or not you think you may have it, take the poll!

I also want to know about your experience with possible misophonia. What are your triggers? How severe is your reaction? Have you been able to lessen your response? Leave your comments below!

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Medical Marijuana vs. Fibromyalgia Drugs

Friday May 16, 2014

According to a National Pain Foundation survey, people with fibromyalgia say medical marijuana is far more effective at controlling their pain than the three FDA-approved fibromyalgia drugs.

Those of us with this illness often try drug after drug, only to find that most of them aren't terribly helpful. This survey shines a bright light on that as well as indicating that medical marijuana may be a better option for many.

Here's how people responded when asked which drug was very effective:

Ten percent vs. 62 percent? That's pretty huge. It might be even more impressive when you look at the responses to doesn't help at all:

  • Cymbalta - 60%
  • Lyrica - 61%
  • Savella - 68%
  • Marijuana - 5%

You can see more of the survey's findings here: National Pain Report.

I can't say that I'm surprised the FDA-approved drugs fared so poorly, but I am surprised marijuana was that effective. It's showing promise in preliminary studies, though, as well as anecdotally. Now if only we had better access to it!

Here's more information on medical marijuana:

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Photo The Power Of Forever Photography/Getty Images

Upcoming Changes

Thursday May 15, 2014

I wanted to give you a heads up that this site will be changing in the not-too-distant future as the About.com network makes some huge strides to update and streamline things so you'll have an even better experience here and at our other 1,000+ sites. Because those of us with fibromyalgia and chronic fatigue syndrome can be easily confused and disoriented, I thought it would help for you to know that this is coming (and I'll be sure to remind you as we get closer, too!)

What Will Change?

The changes will be mostly in how things look:

  • New layout,
  • New colors,
  • More photos, and
  • A few things in different places.

Probably the biggest one will be that the tabs that now appear at the top of the page (Symptoms/Basics, Treatment, Daily Life) will move to the left side of the page. They'll still be available from every page, so you won't have to go looking for them.

In what I think will be the most significant change for me and my regular readers is that it might not be possible to leave comments like you can now. Never fear, though - I have a solution that'll be simple for you and keep allowing your voice to be heard! I'll explain that once the changes are in place. I do not want to lose the amazing insight you provide!

What's Not Changing?

The basics of what this site is won't change. I'll still be here, keeping you updated on new research and treatments, sharing my experiences, and constantly seeking out information that can help you improve your life and your health. Your newsletter will still show up every Friday, the articles and blog posts you might want to read again will still be here, and the forum will still be alive and well.

Getting Ready

If possible, before this site changes I'll put out links or images of what the updated site will look like to help you get oriented. Once the changes arrive here, I'll put up a brief explanation of how to find things.

Change can be hard, but please bear with us. From what I've seen, it looks like we're going in a good direction that'll really benefit you and help other people find the wealth of information here - including all of your great comments.

I'll keep you posted as I know more!

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Fibromyalgia: New Fad Diagnosis? Think Again!

Wednesday May 14, 2014

We've all heard it from the skeptics: "That's one of those new diseases made up by drug companies!" Or, within our own community, sometimes you'll hear, "When are they going to start researching this?"

The truth is, scientists have been studying fibromyalgia for centuries. Names and theories have come and gone, but through it all, a portion of the research community has recognized it and worked to figure out what is going on in our bodies.

Want to see how it all started, and how we got to where we are now? You can, right here:

The next time someone says fibromyalgia is a new fad diagnosis, you'll have a few things to tell them!

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