Fibromyalgia Syndrome Relief

Grocery shopping wasn’t fun when I was still pretty healthy. After fibromyalgia hit, it didn’t just get harder — it turned into a much-feared ordeal that was likely to leave me not just hurting and exhausted, but panicky and shaking.

A trip to the grocery store seems to require all the skills that those of us with fibromyalgia and chronic fatigue syndrome lack. You’ve got to have the direction sense and focus to first drive yourself to the store, and then to find your way around inside; you’ve got to follow a list (if you remembered to bring it), which challenges the short-term memory; your brain’s got to take in a lot of visual and audio signals, which can overwhelm us; you’ve got to multi-task and make a ton of decisions, which can cause anxiety and confusion. And as if that weren’t enough, you’ve got to expend a big chunk of that day’s energy and probably amp up your pain several notches at the same time.

Let’s face it — grocery shopping is never going to be a cake walk for us. We can, however, do some things to make it easier. I’ve made a list of the things that help me and the things I’ve heard from other people, and I hope some of the suggestions help you. You can see them here:

• Grocery Shopping With Fibromyalgia & Chronic Fatigue Syndrome

At the end, there’s a Readers Respond link so you can share your own tips. If you’d like to share your grocery shopping horror stories, leave a comment below!

Learn more or join the conversation!

_{NEWSLETTER | FORUM | BIO | TWITTER | FACEBOOK}

• Easing the Strain of Laundry
• How to Pace Yourself
• Cut Clothing-Related Pain

Photo &copy George Doyle/Getty Images

Grocery Shopping With Fibromyalgia & Chronic Fatigue Syndrome originally appeared on About.com Fibromyalgia & Chronic Fatigue Syndrome on Thursday, February 25th, 2010 at 06:00:50.

Permalink | Comment | Email this

It’s amazing how hard some things hit you. I saw the title of a BMC Medicine article titled “Access to pain treatment as a human right,” and I started to cry. Actually reading the abstract brought up a complex mixture of emotions that included anger, sorrow and frustration.

The article is from the organization Human Rights Watch, which, according to its own mission statement “is dedicated to protecting the human rights of people around the world. . . . We challenge governments and those who hold power to end abusive practices and respect international human rights law.”

In a nutshell, it talks about the nearly 50-year-old human rights law governments around the world adopted in order to work toward universal access to narcotic pain treatments. Today, Human Rights Watch finds governments have fallen down on the job.

The abstract says:

“Significant barriers to effective pain treatment include: the failure of many governments to put in place functioning drug supply systems; the failure to enact policies on pain treatment and palliative care; poor training of healthcare workers; the existence of unnecessarily restrictive drug control regulations and practices; fear among healthcare workers of legal sanctions for legitimate medical practice; and the inflated cost of pain treatment. These barriers can be understood not only as a failure to provide essential medicines and relieve suffering but also as human rights abuses.”

In the U.S., we do have a functioning drug supply system, but in my opinion we’re failing on the rest of it.

• Policies are set by medical institutions or individual doctors and vary drastically.
• Our healthcare workers aren’t well trained at recognizing addictive behaviors and their perception of abuse risk by pain patients is far higher than the actual risk, according to multiple studies.
• Our drug control regulations and practices, again, vary widely; some are far too stringent and some are so lax as to allow for abuse.
• Our doctors are scared to prescribe pain meds because they’ve seen colleagues face criminal charges and loss of license.
• And I don’t think I need to tell anyone with a chronic illness about the cost of health care.

Leaving millions of us to suffer with pain from fibromyalgia, chronic fatigue syndrome and a host of other undertreated, painful conditions is a violation of the doctor’s oath to do no harm and a violation of international human rights law. Wouldn’t it be nice if we started to see some enforcement?

Someone commented here once that we consider it compassionate to put animals to sleep when they’re in pain, but we’ll let human beings suffer indefinitely. I hope Human Rights Watch will push for the humane treatment of people with chronic pain, and I hope at least some governments will do something about it.

I’m fortunate — I have doctors who prescribe pain medications for my pain (novel concept!), even though I’m in a state with especially restrictive regulations. However, I’m always afraid my luck will run out with the next refill request, and it scares the heck out of me. When I think of all the people who are in pain like me and can’t even get the occasional Vicodin, I can’t help but cry.

I’m planning to forward the Human Rights Watch article to my elected representatives. If you’d like to do the same, here it is:

• Access to pain treatment as a human right

The right to pain treatment — that’s one I’ll fight for.

Learn more or join the conversation!

_{NEWSLETTER | FORUM | BIO | TWITTER | FACEBOOK}

Pain Treatment as a Human Right originally appeared on About.com Fibromyalgia & Chronic Fatigue Syndrome on Thursday, February 25th, 2010 at 06:00:28.

Permalink | Comment | Email this

When an illness is named for its chief symptom, it sounds like that symptom is the only thing that’s wrong. Thus, the name “chronic fatigue syndrome” perpetuates the myth that people who have it are “just tired” and not really “sick” at all.

This myth is like salt in the wound to people who are disabled by chronic fatigue syndrome. Not only does it go way beyond a single symptom, the word “fatigue” doesn’t begin to accurately portray the utter exhaustion and lack of energy these people have. Here are some of the consequences of this pervasive myth, along with the truth:

• People say, “Just get some rest — you’ll feel better.” FACT: Multiple sleep-related abnormalities cause unrefreshing sleep, so no amount of rest actually relieves the fatigue.
• People say, “Yeah, I get tired, too.” It’s true that everyone gets tired, and that most people in our society are sleep deprived. Many people feel “chronically fatigued.” FACT: Those people would feel better if they took a restful vacation or improved their sleep habits, and fatigue is generally their only symptom. People with chronic fatigue syndrome deal with up to 50 other symptoms — including cognitive dysfunction (brain fog) that can be as debilitating as fatigue, flu-like body aches, sore throats . . . and the list goes on and on. See Chronic Fatigue vs. Chronic Fatigue Syndrome.
• People say, “You should get out more,” or “exercise more,” or “snap yourself out of it.” FACT: Being active causes symptoms to worsen, sometimes dramatically. (See Debunking Myths: ‘More Exercise’ for Fibromyalgia & Chronic Fatigue Syndrome.) As for snapping out of it, would people spend their savings or go into debt, lose their jobs, isolate themselves from family and friends, and give up their dreams and independence if they could just “snap out of it”? The people who come here looking for answers are desperate to find something that helps, and they’ve often tried dozens of different treatments.

This myth is especially damaging to people with chronic fatigue syndrome, because it causes the illness itself to be dismissed as people just making a big deal out of something everybody deals with. In an attempt to get away from this myth, researchers and advocates have tried using different names for the condition, but so far none have reached acceptance in the medical community because of controversy over how medically accurate they are. Until we understand this condition better, we’ll likely be stuck with the name and the myth that comes with it.

How has this myth effected you? Do people in your life believe it? Leave your comments below!

Learn more or join the conversation!

_{NEWSLETTER | FORUM | BIO | TWITTER | FACEBOOK}

• A Simple Explanation of Chronic Fatigue Syndrome
• Diagnosing Chronic Fatigue Syndrome
• Living With Someone Who Has Chronic Fatigue Syndrome

Photo &copy Digital Vision/Getty Images

Debunking Myths: Chronic Fatigue Syndrome or ‘Just Tired’? originally appeared on About.com Fibromyalgia & Chronic Fatigue Syndrome on Wednesday, February 24th, 2010 at 06:00:54.

Permalink | Comment | Email this

Narcissism: exceptional self-interest; self-love that shuts out others; behavior which involves exclusive self-absorption.

The terms “narcissism” or “narcissist” are rarely meant as compliments, so when I saw the headline, “Does Chronic Pain Turn You Into A Narcissist?” I clicked on it ready for a fight. As I read the article, however, I realized the term fits pretty well.

The Huffington Post article was written by Lee Lipsenthal, M.D., who’s also a cancer patient. He’s a doctor who’s become a pain patient and has had his perspective on pain change as a result. It’s the thing we talk about here a lot, the whole I-wouldn’t-wish-this-on-anybody-but… phenomenon: we wish our doctor/spouse/friends/children/etc. could truly understand what we go through, and we know that the only way they can is by experiencing it.

Here are some of the quotes from the article that really grabbed me:

“Suffering daily pain has been a game changer. Each moment, I am drawn from whatever I am focusing on (a task, a relationship or conversation) to my bodily discomfort . . . . Every activity becomes a struggle. Every moment becomes about me.”

“My only consolation is that my pain is likely to be short lived, and it is predictable that I will feel well again in the next few weeks. The chronic pain patient doesn’t have the blessing of a ‘light’ at the end of the tunnel.”

“We usually think of the narcissist as one who is so in love with themselves that they can’t see, connect or experience others. Isn’t the pain patient a narcissist of sorts? Their acute attention to internal noise is a form of narcissism, taking them away from relationships with others and decreasing their ability to see outside of themselves.”

He also talks about how doctors deal with a lot of chronic pain patients, and how it’s frustrating because they usually can’t do a lot for us. He also says it’s a challenge for doctors to get us outside of the narrow world-view imposed by our pain.

So what does he suggest? A different approach for doctors facing chronic pain patients. After experiencing the loneliness of pain, and the way it robs you of your ability to empathize and connect with people, he believes doctors need to ask about relationships. If they’ve suffered, he believes the prescription should be support groups or psychotherapy — not because we’re crazy, but to help us re-establish our connections with other people.

He also advocates meditation, which he says is shown to decrease the pain response and also increase empathy.

How often do we talk here about how lonely we are because of our illnesses? And I think it applies to more than pain — intense fatigue takes away the ability to see beyond yourself every bit as much. When you have both, it’s more than doubly hard.

While I don’t think support groups, psychotherapy and meditation can overcome all of our problems with forming meaningful relationships, I think they’re a step in the right direction. Getting doctors to recognize this aspect of chronic pain and debilitating chronic illness — and suggest these kinds of treatments — would be a huge step forward.

You can read the entire article here: Does Chronic Pain Turn You Into A Narcissist?

Do you agree with his viewpoints? Have support groups, therapy or meditation helped you “reconnect” with the world outside your pain or fatigue? Leave your comments below!

Learn more or join the conversation!

_{NEWSLETTER | FORUM | BIO | TWITTER | FACEBOOK}

• Finding a Support Group
• Mind-Body Treatments for Fibromyalgia
• Living With Someone Who Has Fibromyalgia

Photo &copy Christopher Thomas/Getty Images

Fibromyalgia Pain & ‘Situational Narcissism’ originally appeared on About.com Fibromyalgia & Chronic Fatigue Syndrome on Tuesday, February 23rd, 2010 at 06:00:05.

Permalink | Comment | Email this

Classic Blog: March 11, 2009

Before I was diagnosed with fibromyalgia, I was sure I had lupus. The symptoms are extremely similar, and one of them that really had me convinced was hair loss. Every time I washed my hair, the tub was covered in it. Still, when I have flares, I leave more hair behind than my husband, who’s thinning a bit. (Good thing he’s a saint so he won’t mind that I mentioned it!)

Eventually, I found out that hair loss actually is a fibromyalgia symptom – it’s just not one that typically makes the brief symptom lists you come across when you’re frantically scouring the Internet to figure out what’s wrong. (Those little lists make me crazy, which is why I put together the Monster List of Fibromyalgia Symptoms.)

As usual, no one knows exactly why we tend to lose our hair. Since stress can cause hair loss as well, I have to wonder if it’s connected to the disruptions in our stress-response system. Whatever the cause, the good news is that it’s temporary hair loss – the follicles don’t stop producing hair as in male pattern baldness or the autoimmune disease alopecia. The hair falls out, then a new one grows in.

I’ve lost enough hair in a short enough period before that my hair got noticeably thinner. Then, as lots of new hair grew in, all the short ones made it look like my hair was all damaged and broken off, which it wasn’t. Now I’m keeping my hair shorter so the grow-out isn’t as obvious (I need to update my photo – it’s much shorter now.)

If you’ve wondered about hard little bumps on your scalp that come off when scratched, I read an explanation of that somewhere. I don’t know how accurate it is, but the claim was that natural oils collect in empty follicles after the hair falls out, and new growth pushes them out. The site suggested adding jojoba to shampoo to get rid of them, but I haven’t tried it. I’d love to hear from someone who has!

Have you had hair loss with your fibromyalgia? Does it really bother you? Has it gotten bad? Have you found ways to stop or lessen it? Share your experiences by leaving a comment below!

Learn more or join the conversation!

_{NEWSLETTER | FORUM | BIO | TWITTER | FACEBOOK}

• A Simple Explanation of Fibromyalgia
• Living With Fibromyalgia
• 10 Little Things That Can Help

Photo &copy George Doyle/Getty Images

Fibromyalgia & Hair Loss originally appeared on About.com Fibromyalgia & Chronic Fatigue Syndrome on Monday, February 22nd, 2010 at 06:00:08.

Permalink | Comment | Email this

My friend Judy came for a visit today. We haven’t had more than 5, 10 minute visits at a time. So this was fun to catch up. Judy is ten years older than I am. So does that mean that Judy thinks younger or I think older? We meet on a level playing field. We made a “play date” in two weeks. We will go to the Farmers’ Market, have lunch, then we will shop ’til we drop!

We had rain and alot of wind yesterday and through the night. Arizona needs the rain. We could have done without the wind.

My Fibromyalgia feels better today. I was able to work on the taxes for a couple of hours..until Dwain decided to work on his harmonicas…I had to be done. To much extra sensory noise. By afternoon through the evening noises (including nice music) become louder and shriller. Lights do the same thing..the brightness is intense. The list of Fibromyalgia symptoms is as long as your arm.

I have enjoyed the Olympics. The athletes’ work ethic to be selected for the Olympic team and then their performance at the Games are inspiring. Not that I’m going to go straight out and learn to ice skate or ski. How about Curling?

It’s hard to find a lot of happy endings when it comes to chronic fatigue syndrome. You can find a lot of people who have been sick for years with little or no relief from treatments, but not so many who say they’ve gotten better. (And usually, those “I was cured!” claims are on websites offering dubious treatments for a lot of money.)

I recently read a book called Recovery From CFS: 50 Personal Stories, edited by Alexandra Barton. In it, 50 people who don’t stand to gain financial from their stories talk about their paths to illness and their journeys back to wellness. As is typical with this illness, no 2 stories are exactly alike.

This book could give you hope, and it could also give you ideas, as you run across cases that sound similar to yours. However, I do have to warn that this book is not for everyone — if the mention of the British approach to CFS gets your hackles up, you’re better off skipping it.

Read my review:

• Recovery From CFS: 50 Personal Stories

I’d love to hear from anyone who’s read this book, and also from anyone who’s made a substantial recovery of their own — leave your comments below!

Learn more or join the conversation!

_{NEWSLETTER | FORUM | BIO | TWITTER | FACEBOOK}

• A Simple Explanation of Chronic Fatigue Syndrome
• The Monster List of Chronic Fatigue Syndrome Symptoms
• Chronic Fatigue Syndrome Treatment Options

Recovery from Chronic Fatigue Syndrome: Book Review originally appeared on About.com Fibromyalgia & Chronic Fatigue Syndrome on Saturday, February 20th, 2010 at 06:00:08.

Permalink | Comment | Email this

NEWSBRIEF: Jazz Pharmaceuticals says it has cleared a major hurdle — the FDA has officially accepted its New Drug Application (NDA) for the prospective fibromyalgia drug, JZP-6 (sodium oxybate).

Jazz submitted the NDA in mid-December. Before accepting an NDA, the FDA looks it over to make sure the required trials have been performed and the paperwork is in order. Once an NDA is accepted, the FDA reviews the data to determine:

• whether a drug is safe and effective for its proposed use
• whether its benefits outweigh the risks
• what information should be included in labeling
• that adequate manufacturing methods are in place to ensure the drug’s quality, strength and purity

Sodium oxybate is the same drug that’s in the narcolepsy drug Xyrem. Some people with fibromyalgia already take it off label. In clinical trials, it improved sleep, reduced pain and fatigue, and improved over-all function.

However, this drug does carry a risk of addiction and abuse, and you have to meet strict eligibility requirements and be closely monitored by your doctor.

• Learn More: JZP-6 (Sodium Oxybate)

Learn more or join the conversation!

_{NEWSLETTER | FORUM | BIO | TWITTER | FACEBOOK}

• Fibromyalgia Drug Treatments
• Getting Started With Supplements
• Complementary/Alternative Fibromyalgia Treatments

FDA Accepts Application for Fibromyalgia Treatment originally appeared on About.com Fibromyalgia & Chronic Fatigue Syndrome on Thursday, February 18th, 2010 at 20:22:35.

Permalink | Comment | Email this

I’ve seen so-called medical experts write about how those of us with fibromyalgia just “can’t handle the normal aches and pains of aging.” This myth is so ridiculous that I can’t believe it’s even out there.

Here’s a little bit about how well I can handle pain:

• I’ve had chronic back & neck pain since I was 10, and I never missed a single day of work or school because of it.
• I developed carpal tunnel disorder while working as a waitress, and I continued at that job for 2 years while in pain from it every day. I was also a college student and managed to get all of my assignments turned in on time.
• With my first child, I went through 31 hours of unmedicated labor and never once asked for anything more than a hot compress on one hip.

That kind of pain tolerance didn’t go away when I developed fibromyalgia. I continued working as a TV news producer for a full year, in constant pain and without medication — I could function better in pain than on pain meds. Even now, I can be at about a 7 on the pain scale and still function pretty well. At a recent family gathering, I was in extreme pain and even my husband didn’t know until I asked him to bring me a Vicodin and a glass of water. Can’t handle pain? Anyone who says that to my face on a bad day just might gain a new appreciation of pain! (Just kidding. Mostly.)

The normal aches and pains of aging? I’m 39 and I’ve had this for nearly 4 years. That’s not age-related pain. What about the many 20-somethings who are regulars in my forum? What about the teenagers whose mothers frequently come here looking for answers?

To some degree, this myth was born out of an early preponderance of diagnoses in middle-aged, usually post-menopausal women. Historically, menopause and other “female problems” were considered signs of emotional weakness in women, and this attitude seems to have colored perceptions of fibromyalgia.

Now, however, we know that we’re most likely to be diagnosed in our 30s. We also know that men can have fibromyalgia, and so can children. This is not an “old woman’s complaint.” (And even if it were, shame on the medical community for not taking it seriously — as if pain isn’t as bad because it’s in an elderly woman!)

Another aspect of this myth is probably related to misconceptions of the medical term “pain tolerance.” It’s too often used interchangably with pain threshold. What’s the difference?

• Pain Tolerance: The amount of pain you can tolerate before breaking down, physically, mentally or emotionally.
• Pain Threshold: The point at which sensation is perceived as pain.

Those of us with fibromyalgia have low pain thresholds. That’s why a loose waistband can feel like it’s burning your skin, or why a hug can make us feel like we’re being crushed. It’s not an emotional inability to handle pain — it’s physical. Compared to “normals,” our nerves send more pain signals to our brain, and our brains respond with a lot more activity. None of us can control the point at which our nerves decide something is “pain” instead of just “heat” or “pressure.”

When it comes to pain tolerance, we’re off the chart, folks! It takes a heck of a lot to get us to actually break down. That annoying phrase, “but you don’t look sick,” that’s actually cliche in the fibro community? We wouldn’t hear that all the time if we weren’t able to tolerate high levels of pain. Right now, I’m sitting calmly on my couch and writing. No observer would have any idea that my hips are screaming, my knees ache, my neck muscles are in full spasm and I’ve got a headache. If someone asked how I was doing right now, I’d honestly tell them pretty good — this is pain I can handle easily. It’s my day-to-day. I’d wager that this amount of pain would send most people home from work and racing for pain meds, which I haven’t felt are warranted today.

Have you encountered this myth? Has it impacted your treatment, or your relationships? How has it made you feel? Leave your comments below!

Learn more or join the conversation!

_{NEWSLETTER | FORUM | BIO | TWITTER | FACEBOOK}

• 7 Types of Fibromyalgia Pain
• A Simple Explanation of Fibromyalgia
• Debunking Myths: We Need ‘More Exercise’

Photo &copy Adam Crowley/Getty Images

Debunking Myths: Fibromyalgia & ‘Inability to Deal With Pain’ originally appeared on About.com Fibromyalgia & Chronic Fatigue Syndrome on Thursday, February 18th, 2010 at 06:00:17.

Permalink | Comment | Email this