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From Adrienne Dellwo,
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Did You Know You Have a Functional Somatic Syndrome?

If you have any combination of fibromyalgia (FMS), chronic fatigue syndrome (CFS or ME/CFS), irritable bowel syndrome (IBS), headaches, temporomandibular joint disorder (TMJ), PMS, interstitial cystitis, food or chemical hypersensitivity, chronic back pain or chronic pelvic pain, now you have an umbrella term to place them all under - functional somatic syndrome.

That's apparently a new buzz word in holistic medicine and a relatively new field of study called "functional medicine."

Functional medicine takes an integrative approach, looking at how your physical and emotional environments, past health problems and lifestyle work together to create your current health. Functional medicine researchers and practitioners say that even very different disorders can share common roots.

What root do they say these conditions may stem from? You've likely heard this answer before - it's chronic stress.

When they say stress, they mean both psychological and physical (including infection, nutritional deficiency and inadequate sleep.) And these folks believe that stress, when it's chronic, can actually change the way your genes work.

They also say that examining our stressors may be the key to healing. This isn't too far off base from how a lot of people (not necessarily doctors) approach FMS - we work to reduce stress, and it usually helps. For me, quitting my full-time job was a big part of that, and it definitely helped.

What do you think about functional medicine? Do you think it sounds like a good approach? What's your opinion on the role of stress in FMS and other related conditions? Leave your comments here or in About.com's Fibromyalgia & Chronic Fatigue Syndrome forum

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Thursday May 15, 2008 | permalink | comments (4)

What Do You Take? Supplements for Fibromyalgia & Chronic Fatigue Syndrome

What supplements are you taking for fibromyalgia (FMS) or chronic fatigue syndrome (CFS or ME/CFS)? The answer to that question varies with who you ask.

What supplements should we take, and what evidence is there to show what's effective? The answer to those questions also varies with who you ask. That makes researching this topic a huge, complicated, convoluted, controversial, self-contradictory headache. (Trust me, I know - I just spend two weeks up to my ears in it!)

To save you the agony, I've put together a review of some of the most common supplements recommended for FMS and ME/CFS:

Vitamins & Supplements for Treating Fibromyalgia & Chronic Fatigue Syndrome

It covers:

  • Vitamin B12
  • NADH
  • CoQ 10
  • Magnesium malate
  • DHEA
  • Carnitine

It's not a complete list, but I plan to add on to it over time, and it's a good place to start. The information is based on accepted medical science and is approved by About.com's Medical Review Board.

What supplements do you take? Do you notice a difference? What would you like to know more about that's not in this review? Let us know by posting a comment here or in About.com's Fibromyalgia & Chronic Fatigue Syndrome forum.

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Tuesday May 13, 2008 | permalink | comments (4)

A Lesson in Thinking - and Planning - Ahead

Just when I think I've got a pretty good handle on this fibromyalgia thing, something happens that makes me say either, "I should have known better," or "Man, I didn't see that coming!" My latest lesson fits into the latter category.

I recently went to the eye doctor to get new glasses. It never occurred to me that this particular medical visit could cause problems for me. Little did I know....

Things started to go downhill when the assistant blasted my eyes with air - I think it's to check for glaucoma. I felt my nerves go on alert and knew my body was ramping up its "fight or flight" response. I look a lot of deep breaths and tried to calm myself down. I thought I was doing OK.

Then I had to have my eyes dilated. The doctor put the drops in, dimmed the lights, and let me sit there for 15 minutes. So far, so good. Then he came back in and shined an incredibly bright light into my eyes. I swear I could almost hear my nerves scream and dive for cover. It was instant overload, kind of a sped-up version of what 4 year olds go through on Christmas that leads to a complete meltdown.

When it came time to leave, I got in my car and sat there with my head laid back and my eyes closed for about 10 minutes before I could even think of driving. I probably should have waited longer, because the drive home was no picnic. Even with sunglasses on, I had to squint my eyes just to be able to withstand the glare. The rest of the day, I was dizzy, nauseous and on edge.

So here's the lesson I took from this: when going into any medical situation, it's a good idea to think through what might happen. Will the vibrations from getting your teeth cleaned rattle your nerves and send you into a panic? Will the pain of a mammogram trigger other pain around your body? What could happen that might increase symptoms, either at the time or later? While you may not be able to skip the procedure, at least you can plan for a ride home, or make sure it's a day that you don't have to do much else.

Have you had anything like this happen to you? Do you have any tips to share with the rest of us? Leave a comment here or in About.com's Fibromyalgia & Chronic Fatigue Syndrome forum.

Saturday May 10, 2008 | permalink | comments (7)

Are Doctors Too Confident in Their Diagnostic Skills?

This tidbit of information probably wouldn't surprise many of us who have fibromyalgia (FMS) or chronic fatigue syndrome (CFS or ME/CFS) - according to a special edition of The American Journal of Medicine, doctors misdiagnose people about 15% of the time.

I'd guess the rate is probably a lot higher for some ailments than for others, especially when you consider conditions that don't come wrapped in neat little packages complete with reliable diagnostic tests.

According the the AJM, many doctors simply don't believe that their own error rate could be that high and pass the buck to "others who are less skillful or less careful."

The authors say it's usually the cases doctors see as routine and unchallenging that are most often misdiagnosed, while with harder cases they're more likely to seek out other opinions or use computerized diagnostic tools.

As scary as this is, it makes sense. Any math teacher will tell you it's the simple things like addition and subtraction that'll trip their algebra students. It's natural to pay less attention to something you feel like you've done a thousand times before.

While the diagnostic error rate isn't surprising to me (after all, I had a handful of misdiagnoses before my FMS was recognized), I wonder if we can use some of this information to our advantage.

Look at it this way: how often do you suppose a doctor hears, "I'm tired all the time"? Constantly. The answer? "Get more sleep" or "Take this pill."

Maybe something more specific, such as "I'm exhausted as if I had the flu and it takes me 2 days to recover from even a little bit of exertion" would get their attention.

For doctors who don't believe in these diseases, probably nothing will help. For the better ones, though, maybe it just takes a few key words or phrases to get them out of a mental rut and make them think a little harder about what you're saying.

How many times have you been misdiagnosed? Take the poll, and share your stories here or in About.com's Fibromyalgia & Chronic Fatigue Syndrome forum.

Thursday May 8, 2008 | permalink | comments (3)

Fibromyalgia & Chronic Fatigue Syndrome Awareness - Not Just a "Day"

Monday, May 12 is the official National Awareness Day for fibromyalgia (FMS) and chronic fatigue syndrome (CFS or ME/CFS), and events are planned for on and around that day, including the National Fibromyalgia Association's Walk of Fame 5k walk/10k run in Orange County, Calif.

If there's not an event in your area and you haven't planned anything (and really, how many of us have the energy?), you might be feeling like it's too late to do anything. You're probably right, if you look at this as a one-day-a-year thing. Instead, let's look at Awareness Day as a reminder that we can all make small strides to raise awareness when opportunities arise.

I had some odd things happen a couple of weeks ago. First, I actually had several opportunities to meet new people. Second, I talked openly about my FMS, which I usually stay pretty quiet about. Third, I found 4 people who are close to someone with FMS and 1 person who was recently diagnosed and confused about what to do next.

What I learned is this: if I continue to keep my illness to myself, people I encounter will have no idea that they know someone with FMS. Just knowing that they do makes them more aware. They'll probably pay a little more attention to the next Lyrica commercial, and maybe they'll even ask some questions. The next time they come across someone with FMS, they'll know just a little more about it.

I know a lot of people with FMS or ME/CFS are told they're crazy when they talk about it, and that can make it scary to be open. For me, at least, overcoming the fear of how people might react helped me make valuable connections with people.

Other small ways you can raise awareness are:

  • Contact your local media to tell your story. (Tip from a former TV news producer: in a smaller community, ask for the weekend producer. In a bigger area, get ahold of the health producer or reporter.)
  • Get an FMS or ME/CFS t-shirt and wear it to the grocery store. (I don't like recommending commercial sites, but if you Google "fibromyalgia shirt" or "cfs shirt" you'll find plenty.)
  • Contact local colleges to see if you can speak to nursing, physical therapy or other medical classes.

Have you found good ways to raise awareness and help people learn about these conditions? Share your ideas here, or in About.com's Fibromyalgia & Chronic Fatigue Syndrome forum (look under Newsletter & Blog topics.)

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Tuesday May 6, 2008 | permalink | comments (1)

Athletes with Chronic Fatigue Syndrome Set Sights on Olympic Gold

A lot of people with chronic fatigue syndrome (CFS or ME/CFS) feel like they've run a marathon after picking up a few groceries, so now imagine working against ME/CFS, complete with post-exertional malaise, to make it where only the finest athletes even dream of getting - to the Olympic Games.

Somehow, 2 athletes with ME/CFS have set their sights on Olympic Gold this year. Greco-Roman wrestler Ari Taub, from Canada, already has secured his spot. He was diagnosed about 8 years ago. Flatwater canoeist and former Olympian Anna Hemmings still has a few hurdles to clear, but 5 years after her diagnosis she's hoping to lead the British team to victory.

Certainly, not everyone with ME/CFS can hope for this type of recovery. It has to help a lot that Taub and Hemmings were both world-class athletes before they got sick. Still, to think that they were able to get back to that is amazing and encouraging. If they can regain their former abilities, maybe the rest of us can at least make progress. Also, perhaps their presence in Beijing will help bring much-needed attention and awareness to the disease.

Do stories like these give you hope? Do they make you worry that other people will expect this type of miraculous recovery in you? Share your comments here or in About.com's Fibromyalgia & Chronic Fatigue Syndrome forum (look under Newsletter & Blog Topics.)

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Monday May 5, 2008 | permalink | comments (3)

My Pledge to My Family for Living with Fibromyalgia & Chronic Fatigue Syndrome

Part of making the changes to your life that come along with chronic illness is re-defining roles within your family. This is hard for any family, and even harder when some family members are resisting the change. Getting everyone on the same page can help, so I came up with this sample pledge you can make to each other. You can change or add to it to fit your circumstances.

  • I pledge to try to keep our life as normal as possible while making the changes necessary to deal with my illness. Please help me make these changes and understand that while I need them, I don't want them.
  • I pledge to be honest with you about my symptoms and how they limit me. Please understand that I'm not exaggerating my limitations and I wish I didn't have them.
  • I pledge to allow you to resent my illness and to understand that you resent it and not me. Please understand that I have these resentments as well, and while I'll need to vent about them at times, these feelings are not directed at you nor do I expect you to "fix" my problems.
  • I pledge to do all that I can to treat my illness and manage my symptoms, which includes rest and pacing myself. Please understand that these things help me stay functional and are not "laziness."

I'd love to hear what other pledges you think would help! Post your ideas here or in About.com's Fibromyalgia & Chronic Fatigue Syndrome forum.

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Thursday May 1, 2008 | permalink | comments (1)

Help for People Who Care for Someone with Fibromyalgia or Chronic Fatigue Syndrome

One of the side-effects of chronic illness is the chronic changes it imposes on your life - and the lives of the people who are close to you.

Thanks to one of my loyal forum members, I ran across some real words of wisdom the other day, aimed at people who take care of chronically ill people. (Thanks, Jane!) It doesn't have to be full-time caretaking - it applies to anyone who helps you get through your life.

This is paraphrased from David J. Levy's article on the National Dysautonomia Research Foundation web page, which you'll find in full here.

Expectation Management for Caregivers

First, take an honest look at your situation and ask yourself, "What do I know about the circumstances?" Taking a little time to learn about and understand the condition will help you deal with the reality it creates.

Second, take a long-term look at things. Think, "If things stay just as they are now for a year or longer, how will that impact me, my family, and the person who is sick?" This can be an overwhelming question, when you consider financial, emotional, social and emotional issues. Approach them one at a time and try to stay logical.

This will help you get started and help you adjust your life if need be. Remember, you're not expected to shoulder this burden alone. Keep lines of communication open with the sick person, friends and family members, doctors, clergy ... anyone who can help you cope or find the resources you need.

Can you ofter help, suggestions or resources for those who care for chronically ill people? If so, please share them here or in About.com's Fibromyalgia & Chronic Fatigue Syndrome forum.

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Tuesday April 29, 2008 | permalink | comments (2)

Finding Support for Fibromyalgia & Chronic Fatigue Syndrome

Does anyone in your life truly understand what you go through with fibromyalgia (FMS) and chronic fatigue syndrome (CFS or ME/CFS) ?

I hear all the time in the forum here how friends, family, co-workers, doctors, etc. don't really "get it," no matter how hard they may try. All too often, they don't try, which of course only creates more stress and depression - two things we could use less of, thank you very much!

Remember the phrase, "it takes one to know one"? I think that, with rare exception, it takes someone in pain to understand someone in pain; takes someone with fatigue to understand someone with fatigue; takes someone with limitations or disability to understand someone with limitations or disability.

That's one of the reasons support groups - either local or online - can really be helpful for us. I can't tell you how often a new forum member says something like, "It just helps so much to have someone understand." When you're all in the same boat, you can compare symptoms and treatments, find out that symptom X is common and you're NOT crazy after all, vent without hurting the feelings of the people closest to you, etc. They can also be an important social outlet, which is especially important if you can't get out and do much or have trouble maintaining friendships.

How can you find support groups? Here are 3 places to start:

Sunday April 27, 2008 | permalink | comments (3)

Diagnosing Chronic Fatigue Syndrome - Is the Canadian Way Better?

A call is going out from advocates for the U.S. to adopt the Canadian criteria for diagnosing chronic fatigue syndrome (CFS or ME/CFS).

Right now, the U.S. uses criteria set by the CDC, which are:

  1. Unexplained, persistent fatigue that's not relieved by rest
  2. Four or more of the following, for six months or more:
    • Impaired memory or concentration
    • Post-exertional malaise
    • Unrefreshing sleep
    • Muscle pain
    • Multi-joint pain without swelling or redness
    • Headaches of a new type or severity
    • Sore throat that's frequent or recurring
    • Tender cervical or axillary lymph nodes

The Canadian criteria covers a broader array of symptoms. Here's a summarized list:

  1. Unexplained, persistent fatigue
  2. Post-exertional malaise and/or fatigue
  3. Sleep dysfunction, including unrefreshing sleep or rhythm disturbances
  4. Pain in muscles & joints that can be widespread and migratory
  5. 2 or more neurological/cognitive manifestations
  6. At least one symptoms from two of the following categories:
    • Autonomic manifestations (such as neurally mediated hypotension, irritable bowel syndrome and heart palpitations)
    • Neuroendocrine manifestations (such as intolerance of heat and cold, and worsening of symptoms with stress)
    • Immune manifestations (such as recurrent flu-like symptoms, and sensitivities to food, medications or chemicals)
  7. Illness persists for at least 6 months

While on their face they might not seem vastly different, it's important to note that the Canadian criteria recognizes a broader range of cognitive problems, which both includes more people and could help in proving disability due to those symptoms. It also requires post-exertional malaise, which is considered by many experts to be the hallmark of ME/CFS. The type of pain and sleep dysfunctions are better defined and broader as well.

Also notice that classifying symptoms under clinical categories (autonomic, neuroendocrine & immune) helps them make sense, instead of being an odd cluster of symptoms that seem to bear no relationship to each other.

Do you think the U.S. should adopt these criteria? Would it help doctors recognize and understand ME/CFS? Share your thoughts here or in About.com's Fibromyalgia & Chronic Fatigue Syndrome forum..

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Thursday April 24, 2008 | permalink | comments (4)

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