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What you should read First

What you should read Second.

Start with "Fibromyalgia Definition"and and then move on to the rest of the posts of dated April 24th

Tuesday, November 24, 2015

Debunking Myths: 'More Exercise' for Fibromyalgia & Chronic Fatigue Syndrome

It's basic physiology -- when you feel sluggish, unmotivated and fatigued, getting up and doing some exercise causes changes in your body that boost your energy. Exercise also releases endorphins in the brain, and endorphins are great pain killers. So when people say those of us with fibromyalgia and chronic fatigue syndrome would feel better if we got "more exercise," there's something to it, right?
Actually, no. In normal, healthy people, yes -- exercise creates energy. Problem is, we're not normal and healthy.
Exercise is a tough subject, whether you have fibromyalgia or chronic fatigue syndrome. However, it's not the same for both groups, so let's look at them separately.
Fibromyalgia & 'More Exercise'

This myth is compounded by numerous studies showing that exercise lowers our pain levels and does in fact give us more energy. Doctors glance at the titles of these studies and tell the next fibromite who walks through the door to go to the gym. What they're missing is that the amount and type of exercise we need is far from what most people would even consider exercise.

If we exert ourselves to the point of exhaustion, we're probably going to trigger a major flare that lands us on the couch for days or even weeks. We all have different fitness levels so the exact amount of exertion we can handle varies greatly, but generally speaking, we should exert moderate effort for just a few minutes on a regular basis.

There's ample clinical and anecdotal evidence to support that regular exercise, done with extreme moderation, helps us. That means, for us, an exercise regimen might consist of 2 minutes of gentle yoga per day. If you're in better shape, maybe you can handle a 10-minute walk or 20 minutes of aquatic exercise to start with.

I consider myself in moderately good shape for someone with fibromyalgia -- I can go grocery shopping, clean the kitchen and do a couple loads of laundry in the same day (most of the time, anyway.) I can also get through a 30-minute yoga routine without wiping myself out or having nasty 
repercussions. I couldn't do that a year ago, though, and if I'd tried, I would have crashed afterward. Two years ago, I would have crashed 10 minutes in; and three years ago, just getting into the first pose would have done me in on bad days. While I'm not the most consistent about exercise, I have worked hard to slowly and steadily increase my activity level.
That slow, steady pace is what we need. If all you can do is 2 minutes, try to be consistent about your 2 minutes. Eventually, you'll be able to handle 4. The key is not pushing yourself too far too fast, and expecting setbacks along the way.

Chronic Fatigue Syndrome & 'More Exercise'
A key symptom of chronic fatigue syndrome is post-exertional malaise. It's a period of intense, often debilitating symptoms that follows any kind of exercise or exertion and lasts for a day or more (usually more.) Research actually shows abnormalities in the blood chemistry of people with chronic fatigue syndrome after they exercise, and those abnormalities could very well provide the long-awaited diagnostic test for this condition. 

Some preliminary research also shows abnormal heart rhythms during exercise, which could mean that exercise is actually damaging your health.

For years, some chronic fatigue syndrome doctors and researchers have touted a treatment called graded exercise therapy (GET). It's controversial to say the least, and while some studies have shown that it can help some people, the methods used to arrive at that conclusion are frequently called into question. Looking over the available research, it seems to me that GET is only recommended because it's more effective than most treatments that have been studied -- and that's not saying a lot. However, it does help some people, as evidenced by the comment below from Dr. Donnica Moore, a well-respected expert who just signed on to work with the Whittemore Peterson Institute.

So what does all this mean about exercise and chronic fatigue syndrome? It really depends. There's clearly a reduced exercise tolerance, but you're the only one who can determine exactly what your body can tolerate. It all depends on your current fitness level and severity of your illness. We all know that being sedentary increases muscle aches and pains, so at the very least you might want to learn some simple stretches you can do while laying in bed. Because of the evidence suggesting heart abnormalities, you should talk to your doctor about testing your heart to make sure exercise is OK -- here's a link to studies you can show your doctor, and they contain testing information: Cardiac Involvement in Chronic Fatigue Syndrome.

What If You Have Both?
If you're diagnosed with both fibromyalgia and chronic fatigue syndrome, you're in a particularly difficult situation -- the right kind of exercise may relieve some symptoms while exacerbating others. Again, you're the only one who can figure out the right level of exertion for yourself.

The Persistent Myth

The exercise myth is one that's not likely to go away -- it's pretty firmly entrenched in the medical establishment, and a consequence of an uninformed public. What we need to do is know our own bodies, try to educate those who are receptive, and ignore those who aren't. We're not doing any good for anyone by over exerting ourselves and winding up in bed for a week.

Sunday, January 4, 2015

Depression doesn’t make you sad all the time

ne of the most popular, enduring, and irritating myths about depression is that it means depressed people are sad all the time – and that by extension, people who are happy can’t be experiencing depression, even if they say they are. It is a skewed and horrible version of depression, and it’s one that further stigmatises the condition and isolates people with depression and related mental health conditions. This is because, put bluntly, depression doesn’t make you sad all the time – though the level of sadness a patient experiences can of course vary depending on the individual and the severity of depression.

When I’m having a depressive episode, I’m not walking around in tattered black clothes, weeping and wailing. I go out with friends. I crack jokes (especially sardonic ones). I keep working, and have friendly chats with the people I work with. I often manage to feed and clothe myself, I read books. Above all, I experience moments of happiness: a flash of delight as I’m walking on the beach with a friend and the sun is perfect and the breeze is just right; a surge somewhere deep inside when I’m surrounded by beautiful trees and it’s raining and I feel my heart swelling to encompass the whole world; a warm, friendly, affectionate sensation at the touch of a friend, a hug at the end of an evening or a hand placed over mine as we lean forward to see something better.

Yet I feel a strange conflicting pressure. On the one hand, I feel like I need to engage in a sort of relentless performative sadness to be taken seriously, for people to understand that I really am depressed and that each day – each moment of each day – is a struggle for me, that even when I am happy, I am still fighting the monster. I feel like I need to darken everything around me, to stop communicating with the world, to stop publishing anything, to just stop. Because that way I will appear suitably, certifiably sad, and thus, depressed – and then maybe people will recognise that I’m depressed and perhaps they’ll even offer support and assistance. The jokes die in my throat, the smile never reaches my lips, I don’t share that moment of happiness on the beach by turning to my friend and expressing joy.

I don’t, in other words, do the things that can help ameliorate depression, encourage people to reach out, and help depressed people with functioning, completing daily tasks of life, and finding a reason to live again. I don’t find and build a rich community of people who can offer support (and whom I can support in turn), because I have to be so wrapped up in performing my sadness at all times to prove that I’m depressed enough – even as I want to scream that this is a reinforcement of stereotypes that hurt people, that by doing this I am hurting not just myself but others.

On the other, I feel an extreme pressure to perform just the opposite, because sad depressed people are boring and no fun, as I am continually reminded every time I speak openly about depression or express feelings of sadness and frustration. I’m caught in a trap where if I don’t perform sadness, I’m not really depressed, but if I express sadness at all to any degree, I’m annoying and boring and should stop being so self-centred. Thus I’m effectively pushed into fronting, putting a face on it even when I am depressed and deeply sad – when I feel like I am choking on my own misery, I put up a cheeky Tweet. When I hate myself and I want to die, I post a link to something fun, or I write up something silly to run somewhere – even though as I write it, I am drawn deeper and deeper into my unhappiness.

Depression is an asshole, and it can become your master, but you can slip out from under it occasionally. And many depressed people in the midst of an episode don’t actually spend it fainting dramatically on the couch and talking about how miserable they are. Some are high-functioning (bolstered by the need to put a face on it), others are into morbid jokes, others try to reach out for help (isn’t that what we’re “supposed” to do?) from friends and try to make their depression less scary. Depression isn’t an all-or-nothing deal – seeing a person who identifies with depression cracking a joke or having fun or dancing with a friend isn’t evidence that the person is faking it, whether the person is experiencing a moment of genuine happiness, or fronting. Conversely, jollying up people with depression to demand that they start being more fun is equally revolting, a refusal to acknowledge that people experiencing a rough day, or a rough week, or a rough few hours aren’t going to be your trained monkeys.
Depression manifests differently in everyone and at different times. Various behaviours are not proof positive that someone is or isn’t depressed, and, as with any armchair diagnosis, insisting that someone is not actually depressed just because of a show of something other than deep, entrenched sadness is actively harmful.

Look at the woman above, joyously cycling on a beach, hair fluttering in the breeze. You can’t judge her emotional state or her larger mental health picture, nor should you.

By SE Smith.

Sunday, November 9, 2014

Fibromyalgia and Exercise: Yes, You Can

By Denise Mann
Reviewed by Louise Chang, MD

Exercise eases the pain of fibromyalgia. Getting started may not be easy, but it’s worth it

Fibromyalgia and Exercise: Slow and Steady

“Exercise improves a person’s overall sense of well-being and reduces pain and tenderness over time,” says Lesley M. Arnold, M.D. a psychiatrist and fibromyalgia expert at the University of Cincinnati College of Medicine in Ohio. 

“We try to pace it slowly and make sure that their symptoms of pain and fatigue are under control before we introduce it.”

The first step is typically an assessment of the person’s current fitness level. “We like to start them on a program that is a level or two below their current level, improve their stamina, and build up to 20 to 30 minutes of moderate aerobic activity on most days of the week,” Arnold tells WebMD. “We really encourage them to pace things and set reasonable goals.”

Water Aerobics Soothe and Strengthen

For people with fibromyalgia, low-impact aerobics is the way to go. “We really like an aerobic water class and people tend to go back,” Arnold says.

The research backs her up. A study in Arthritis Research & Therapy found that water aerobics improve health-related quality of life in women with fibromyalgia.

These classes often start in warm-water pools, which can be soothing. What’s more, they are typically group-based, so people can garner support and motivation from other members of the group. 

Holthaun says that this helps people stick to a program. “People with fibromyalgia tend to isolate, but being in a group helps motivation,” she says.

Strength Training and Low-Impact Exercise

What if you don’t have access to a pool? Don’t despair: Walking, biking, and other forms of low-impact aerobic activity also provide benefits. “Grab a buddy, take a class, or look into physical therapy,” Arnold suggests.

And don’t rule out strength training. Although doctors once believed that strength training could worsen pain in people with fibromyalgia, new research suggests that this is not the case. 

In fact, the latest research -- presented at the 2008 annual meeting of the American Society of Anesthesiologists in Orlando -- suggests that strength training can have the same ameliorating effect on pain as aerobic exercise.

Lynne Matallana, president and founder of the National Fibromyalgia Association in Anaheim, Calif., says the benefits of exercise for people with the condition are tremendous. “This has been shown scientifically and anecdotally,” she says.

Matallana’s own experience has shown her that exercise can also soothe the mind. 

A former dancer, she was diagnosed with fibromyalgia in 1995. “I have watched how exercise has improved my symptoms and my overall outlook,” she says. “When I got in water, I could do movements that were almost like dance. That touched my soul again.”

Getting Over the Mental Hurdles

Let’s face it: It may hurt just to think about going from couch potato to marathon runner. To avoid getting overwhelmed, take it in stages.

“If you have fibromyalgia, you have this amplified pain signal telling you that something is wrong,” Mattalana says. 

“It’s a natural instinct to want to protect your body by going to bed, but that actually makes pain worse.”

Try these two tips to get your mind on board:
  • Give yourself a pep talk. 
  • “Tell yourself that this is going to be beneficial,” Mattalana says. “Say, ‘Today I will do just this amount because I know this will help me feel better.” 
  • Set realistic goals. Arnold often prescribes five minutes of walking to start.
  •  “People may think that won’t be too difficult, but it can be if you have fibromyalgia,” she says. 
  • “We start very slow and build up from there, and emphasize that there is no hurry.”

From Skeptic to Believer

In the beginning, Mattalana scoffed at the thought of doing only three minutes on the treadmill, but it wasn’t as easy as she thought it would be. 

“I slowly got my body conditioned and got to a point where I could add more exercise,” she says. “It is a slow process, but every time you get up, stretch, walk, get into a pool, or take a yoga class, you are one step closer to feeling better.”

“Once you convince people to start exercising, they become believers,” says Daniel J. Clauw, MD, professor of anesthesiology and medicine at the University of Michigan in Ann Arbor. 

“It’s not until they do it and see how much it helps that they embrace it.”

How long does that usually take? 

“Some people will notice changes right away, but for others, it may take a couple of weeks,” he says.

Exercise is not a panacea for fibromyalgia, Clauw says. But, he says, “it works in more people than anything else. I can’t remember an instance where someone got into an exercise program and didn’t notice a significant improvement in symptoms.”