Category Archives: Chronic fatigue syndrome

What is Chronic Fatigue Syndrome/fibromyalgia really like?

Nobody Knows What Chronic Fatigue Syndrome / Fibromyalgia is Really Like (Probably Not Even You)
By Dan Neuffer

When I first published my book and started my website, one of the most common bits of feedback I received was “This guy really understands what it’s like to have ME/CFS/Fibromyalgia”. Some of those responses were quite emotional!

Well, having been ill with it for nearly 7 years, of course I understood. And I, like everyone else, felt that amazing relief and validation when I first spoke to other people with the illness, even though it was very late in my journey, about 6-7 years after I first got ill.

There is something amazing in hearing someone else experience the same frustrations, the same injustices as you have. Because no matter how much you try to explain what you are going through, other people simply don’t truly understand. They cannot understand, because their whole frame of reference is on a completely different plane! What they describe as exhaustion or pain would often be like relief for us.

And nobody gets what’s it’s like to suffer day in day out, week in week out. Nobody gets how this affects you when months turns into years, NOBODY, probably not even YOU! That’s something I only realized long after recovering!

This was highlighted to me again recently, when I interviewed someone that I coached to recovery after 15 years of illness. We looked at some footage of himself discussing his illness and experience a couple years earlier, and he started to cry. When I asked him why, he explained how he could see the suffering he had been experiencing, he could see how he was trying to hold it all together back then.
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But of course we feel we know how much we suffer. After all, we experience it every day, right? Well, I personally don’t think most people really realize the real extent of it, whilst they are still sick. Let me explain what I mean by sharing some of my own experience.

During my years with ME/CFS/Fibromyalgia, like most people, I tried my best to live some sort of normal life. And so on my ‘good’ days (when I was not experiencing a flare up), I would try to do the normal things that other people do with their families. One of these was going to a local amusement park SeaWorld, where the kids could enjoy the animals and the rides.

It was about a year after I had recovered, I had been very busy with work and doing some heavy duty work around the house, when we got tickets to visit SeaWorld again. I was very sore and tired that day, LIKE A NORMAL PERSON, due to the physical work around the house. As we spent our day having fun, doing all the usual things, it felt like it was my first time there. We just had such a great time with the kids, making every little experience like some grand adventure.

But as I walked that familiar ground of the park, including the queues, I suddenly realized the true extent of my suffering all those years. Because even though I was tired and sore from all the work around the house, the whole thing was of course completely easy. Easy to walk through the park, to line up, to enjoy! Easy to sit down, stand up, to check the map, everything was easy.

Sitting on a particular park bench, I suddenly felt a sense of déjà vu. I connected strongly with the emotions and feelings I had experienced all those times I visited in my sick years and as I did so, I felt a wave of emotion flooding over me. I realized just how hard it had been to do anything, even during my ‘good’ days. It was only the contrast of the ease of doing things now, that showed me the true depth of my difficulties during those years.

It was a strange feeling, as I kind of felt very sorry for ‘that person’, that former me who had dragged themselves around, looking every moment for some respite. “Where I can I sit down?” “What can I lean against?”. “What should I eat or drink to get through the day?” “How much longer until we go?” “How far do I have to walk next?”

There was little joy in any of that, I was suffering so severely by simply being out of the house. I realized that I had been so distracted by trying to hold things together back then, that by simply trying to cope all those years, I lost my frame of reference for what was reasonable.

I realized that I had pushed myself beyond anything that anybody would have thought was reasonable. If a healthy person suddenly experienced what I was experiencing back then, they would not drag themselves on trying to be normal, but would have lied down and maybe called an ambulance.

The question came up “Why did I push so hard?” I had worked so hard! I had tried so hard to maintain some semblance of normality – and it had cost me so much!

The realization of what I had gone through really hit home. I knew it was difficult in those years, but suddenly I had a whole new perspective about them and I felt a deep sense of grief about myself for having to suffer through all that.
Fibromyalgia Summit

This realization is not unique to me, I have seen it in many other people that recovered who were sick for longer periods of time.

I realized that if I could go back to when I was ill and speak to myself, I would say – “don’t try so hard Dan”. I would say “it’s OK not to be able to do things” – “it’s OK to just rest”.

I realized though, that I had given up any hope of significant improvement or recovery; that I thought that this, as bad as it was, was as good as it was going to get. If this was as good as it was going to get, if nothing was going to change, then I was going to do my best, even if it cost me greatly, to lead as much of a normal life as I could. The pull to maintain any semblance of normalcy was terribly strong.

It’s not just the physical stress. It’s also the mental stress; the worrying about how it will turn out; the fear that I might get worse or might never get better – the fear that I might be this way for the rest of my life.

If I had known that recovery was possible, though, if I had known that there was an end in sight, then perhaps I would have given myself more of a break. Like when you have the flu, you just take a time out.

But when you think there is no end in sight – you just push on don’t you? And as you do so, over time, many (if not all) of us simply lose perspective of what normal is. We get so focused on holding it together and doing what we can and trying to get well, that we never get the opportunity to step back and look at our experience objectively. Most of the people I have spoken to, seem to only realize the full extent of their experience after they have recovered.

But if you really feel like you are in the doldrums right now, then perhaps your best step forward is first to find a way to feel a little better, a little more hope and to feel a little more able to cope. And reaching out to a counselor or friend may be your first step.

Having lived with the illness for years myself and having seen others get stuck in these awful low places, I wrote a little book called Discover Hope : 34 Steps To Find Hope and To Cope with Chronic Fatigue Syndrome & Fibromyalgia. It’s a short easy to read book that could help you find a more positive place from which you can hopefully start taking action to improve your health and your life. So if you’re feeling a bit low, then hopefully it can give you a little boost and help you change your perspective.

The book can be read on any computer device using the kindle reading apps, and is available for free from time to time from Amazon (currently free from 12th May 16 to 14th May 16, you can check the link to confirm the next free dates).

Simply check my website here for more details on how to get it.

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Vagus Nerve Stimulation, Fibromyalgia and chronic Fatigue Syndrome.

Vagus Nerve Stimulation, Fibromyalgia and Chronic Fatigue Syndrome (ME/CFS)

by Cort Johnson | Jan 11, 2016 | Homepage, Pain, Treatment | 64 comments
Vagus Nerve Stimulation, Fibromyalgia and Chronic Fatigue Syndrome (ME/CFS)

+100%-With an enormous potential therapeutic gain and a high safety profile, further development and application of VNS is encouraging. Yuan et. Al

Vagus nerve stimulation is one of the most promising chronic pain interventions under development today. An earlier blog on Health Rising featured an astonishing story of a woman whose very severe fibromyalgia was largely ameliorated by a vagus nerve stimulator implant.

She was part of a small 2011 study which suggested that VNS may be very effective in fibromyalgia. The study was small but the success rate was high. Dr. Natelson, a neurologist who’s been treating and researching FM and ME/CFS for decades said:

“The results blew me away. I have never seen an effect as powerful as this.”

Many of the participants in that study no longer met the criteria for FM after it: that’s a criteria for success that few FM studies are willing to even contemplate using.

The study also required the surgical implantation of a vagus nerve stimulator. That’s an option – running somewhere around 30-40K – that’s available to few. Thankfully non-invasive vagus nerve stimulators worn on the ear have and are being developed.

See “Reborn” – Reversing Fibromyalgia with Vagus Nerve Stimulation

vagus nerve

The vagus nerve relays information from and can affect the functioning of many organs.

When a recent three part review did an overview of our understanding of what the vagus nerve does, how vagus nerve stimulation works and how it effective it is, I jumped on it.

Besides the fibromyalgia study, the vagus nerve is of particular interest in both fibromyalgia and chronic fatigue syndrome (ME/CFS) because of the role it plays in

regulating the autonomic nervous and immune systems
providing sensory and other information to the brain and
Michael Van Elzakker’s Vagus Nerve Hypothesis – Van Elzakker suspects small infections in or around the vagus nerve could be triggering it to tell the brain to produce flu-like symptoms in people with chronic fatigue syndrome (ME/CFS). A pilot study to assess that possibility is underway now.

The Wanderer

Called the wanderer, the vagus nerve is the longest “cranial nerve” (a nerve that emanates from the head) in the body. Attaching at the medulla at the bottom of the brainstem, the many fingers of the vagus nerve reach down our torso to infiltrate most of our organs. The extensive network it forms – it’s the largest neural network in the body – provides a pathway through which information is sent to the brain regarding the status of our organs.
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Vagus nerves densely innervate every ‘sensing area’ of the body with a particular focus on the walls of the blood vessels throughout the body and the digestive system. The vagus nerve regulates our heart and breathing rates, blood pressure and blood flow via receptors in the blood vessels that monitor O2, CO2, and pH levels in the blood and blood pressure.

Autonomic-nervous-systemIn the gut the vagus nerve controls gut movements (motility), secretions, inflammatory responses, the integrity of the gut lining and even appetite. Reflexive movements like coughing, gagging and vomiting are all controlled by the vagus nerve.

If a pathogen is present the vagus nerve will let your brain know that. If you’ve cut your finger, are feeling hot or cold, or have just eaten something – the vagus nerve will let your brain know that.

Ultimately information on touch, heat/cold, pain and chemical, metabolic, and hormonal operations of the organs is all transmitted via the vagus nerve to the brain. It effects the functioning of every system – from the immune to endocrine to the hormonal system – in our body.
Immune Regulator

The last ten or twenty years have revealed that the vagus nerve (VN) is a significant immune system regulator. The cholinergic anti-inflammatory immune response it regulates mostly takes place in the spleen.

Think of the spleen as an enormous lymph node which dictates much of the innate or early immune response. Besides filtering blood the spleen synthesizes antibodies, removes bacteria and plays host to half the monocytes found in the body. These monocytes – which turn into dendritic cells and macrophages play a key role in the innate or early immune response, which plays a key role in producing many inflammatory states.

The cholinergic anti-inflammatory response has been shown to reduce the levels of a wide variety of inflammatory cytokines. Studies are underway to assess the ability of VNS to reduce inflammation in diseases such as rheumatoid arthritis and inflammatory bowel disease.
Autonomic Nervous System Regulator

The vagus nerve’s effects on autonomic nervous system functioning could easily account for the benefits thus far seen in fibromyalgia and other pain disorders. The vagus nerve boosts the activity of the parasympathetic nervous system (rest and digest) and reduces sympathetic nervous system (fight or flight) system.

Reduced heart rate variability findings suggest that reduced parasympthetic nervous system functioning is present in both ME/CFS and FM. Reduced HRV has been associated with increased sympathetic nervous system activity, pain and sleep and cognitive problems in ME/CFS and/or FM.

Because VNS increases heart rate variability it’s possible that besides reducing pain it could also improve sleep and cognition.

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Vagus Nerve Stimulation
vagus nerve stimulation

Vagus nerve stimulators are becoming more and more fine-tuned.

Vagus nerve stimulators use electrical pulses to increase vagus nerve functioning. The vagus nerve runs up and down the neck. The stimulators contact the vagus nerve either by being surgically implanted in the neck or by non-invasive devices worn on the ear or neck.

The first vagus nerve stimulators attempted to interrupt epileptic seizures in the late 1890’s. Those attempts largely failed, and it was not until the 1990’s that the researchers felt confident enough to attempt it again in humans. In 1997 the FDA approved a surgically implanted device in the neck for people with treatment resistant epilepsy. In 2005 treatment resistant depression joined the list. Since then more than 70,000 people have received surgically implanted vagus nerve stimulators.

VNS stimulation is currently being assessed in a wide variety of diseases and conditions including heart disease, inflammation. Crohn’s disease, depression, stroke, tinnitus, diabetes, migraine, irritable bowel syndrome and others.
Pain Reducer

The first hints that VNS might helpful in reducing pain came when epilepsy patients reported experiencing reduced pain.

VNS may be effective with chronic pain because it’s able to effect a wide variety of factors that contribute to it including inflammation, oxidative stress, autonomic nervous system activity, the opioid response, central sensitization, and pain perception.

Studies indicate that VNS may be able to reduce the process of “temporal summation” that plays a crucial role in the production of many chronic pain states. Temporal summation refers to the windup mechanism that causes the nervous system to become more and more sensitive to pain.

During wind-up the nervous system learns to respond more and more quickly to the slightest hint of pain signals. VNS appears to help the CNS to unlearn this process in a manner that allows VNS, unlike other therapies, to become more effective over time.

The poor response to opioid pain drugs found in a significant portion of people with fibromyalgia could have its roots in vagus nerve problems. It turns out that good responses to opioids only take place in people with healthy vagal nerve activity.
Non Invasive Ways of Stimulating the Vagus Nerve

Two non-invasive means of stimulating the vagus nerve at the ear and the neck have been produced.
Ear Devices

The NEMOS stimulator that attaches to the ear was approved for epilepsy and depression in 2010, and pain in 2012 in Europe. Imaging studies indicate the ear device has similar effects on the brain as the invasive device.

A similar device in the U.S. called the NET 1000 is being currently marketed as a microcurrent/music therapy device by a private company named Aura Stim Medical. The company markets the device, which costs $650.00, as a music therapy device for migraines and other disorders. It has been assessed in three studies.

The company believes that the electrical frequencies and audio signals the device delivers can induce the secretion of pain reducing substances such as beta-endorphins and neurotransmitters such as serotonin and dopamine. The device, which can be hooked up to a smartphone, is marketed to people with migraine and other types of headaches, premenstrual syndrome and/or depression, anxiety, and stress related to chronic pain.
Neck Devices

The gammaCore device produced by a New Jersey company ElecroCore LLC has been cleared in Canada and parts of Europe to treat severe headache (migraine, cluster), reactive airway diseases (asthma, COPD, exercise induced bronchospasm), epilepsy, IBS, gastric mobility disorders and panic disorder, PTSD and other mood disorders. It appears to be able to inhibit glutamate expression in the trigeminal nerve in the head in migraine.

The Gamma Core Device

Three gammaCore headache studies were published in 2013 and 2014 and the company states three more are underway.

Another device that can be placed on the skin overlying the vagus nerve on the neck and then activated several times a day has been cleared to be clinically tested in an ME/CFS-like disorder.
Complex System

The vagus nerve encompasses a complex system. It carries autonomic, sensory, metabolic and other information to the brain via afferent nerve fibers. It also regulates autonomic and other activity (heart rate, blood pressure, blood vessel functioning, gut activity, secretions, immune functioning, etc.) via efferent brain fibers leading to the organs.

Given the vagus nerve’s widespread effects, altering its activity has the potential to affect many processes and diseases. The expensive and invasive nature of surgically implanted vagus nerve stimulators has undoubtedly, however, interfered with its more widespread adoption. (Even in the two diseases VNS has been approved for, it’s approved only for treatment resistant versions of them.)

As noted above non-invasive means of VNS stimulation have been and are being developed, but studies are few. The few studies that have been done suggest the invasive and non-invasive devices producing similar effects on the autonomic nervous system and brain.
Evolving Technology

Vagus nerve technology is continuing to evolve. Miniaturized devices are being tested in rheumatoid arthritis. A heart failure device able to unidirectionally activate vagus nerve fibers is being tested as well. It’s the only device, thus far, able to activate only the nerve fibers going from the brain to the body. It specifically activates the B-fibers leaving the brain that stimulate parasympathetic nerve activity.

Researchers are becoming able to identify which frequencies work best in which diseases, as well. The anti-inflammatory response of the vagus nerve, for instance, is best triggered at specific electrical frequencies (5Hz, 15-20 Hz.).

It’s clear that intensity matters as well. High voltage VNS stimulation can cause low blood pressure, low heart rates and bronchoconstriction, while low voltage stimulation can reduce bronchoconstriction without effecting the heart rate at all.

net-1000-with-kindleResearch on the non-invasive vagus nerve stimulators that might be affordable for FM and ME/CFS patients is still in its infancy however, with most of the studies being done in the last couple of years. They appear to be mostly produced by small companies doing relatively small trials.

Natelson’s experience in this field may be instructive. His and Gudrun Lange’s ability to produce a small trial of surgically implanted stimulators in FM was remarkable given the expense and newness of the technology to FM.

It stopped there, however. It’s remarkable to me, given the excellent results of the study, that five years later no followup has occurred. It hasn’t been for the lack of trying.

The NIH turned down Natelson’s request for a followup study because the study would not reveal more about the mechanisms at work. (The NIH apparently does not fund clinical trials to determine treatment efficacy!)

No FM VNS studies are in progress that I know of either. Efficacy, as we’ve seen in ME/CFS, does not always translate into more studies.

A non-invasive VNS study, that will, however, begin soon in an ME/CFS-like disease could provide a bridge to further ME/CFS and FM studies, and gammaCore may be available in the U.S. soon.

More on the Vagus Nerve

For more on the use of vagal nerve stimulation including past blogs, and how to possibly use a TENS unit to stimulate the vagus nerve visit Health Rising’s Vagus Nerve Resource page.

Other Means of Increasing Vagus Nerve Activity

Breathing slowly in and out through the nose, some yoga practices, gentle resistance breathing and other practices may be able to stimulate the vagus nerve as well.

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A life with An Invisible Illness.

Invisible illnesses are just as it sounds invisible, You can’t see them, no obvious symptoms to the naked eye.  That being said, living with a invisible illness is the hardest thing I have ever had to do.  Not only living with the daily symptoms, but living with the unknown.  Will I be able to attend the function on Monday?  Will I be able to drive to my Doctor’s appointment on Tuesday?  What if I get lost?  What if I have a attack?  What If I have a drop attack?  I always carry my medication with me and a bottle of water as if it were a security blanket.  Is it really going to help in this situation? No , but it makes me feel better.  I only will allow my self to drive 3 or so miles and I have to feel better than normal to drive, so its not on a regular basis, I have to have some one drive me places, which makes me feel bad.  My sensory system is in such overload, lights, patterns on carpets, wallpaper, crazy bright colors really bother me.  I can’t handle music even though I am deaf in one ear and going deaf in the other, it causes confusion in my brain.  A lot of people in one area cause confusion.  You loose friends and your co-workers or family members question your illness?  I have never actually wanted anyone to have my disease which is autoimmune disease, Vestibular dysfunction, deafness, fibromyalgsia, extreme fatigue.  But at the same time If they could experience it for one day, maybe they would understand.  Invisible illnesses are not easy to diagnose or treat and most are not curable, I use to hope this MRI is going to show a tumor that can be removed and I will have my life back and that is just not the case, I am meditating which can be a challenge in itself, with all the noise in my head and spinning, eye pain, ear pain.  It’s depressing, but I had to take a new approach to my disease and not let it define me, also had to think of this as a gift! Am I crazy?  Yes I look at this as a gift to understand what others are going through and trying to help them through there journey.  I know it sounds strange, Yes I wish I was healthy but until a miracle happens I can help others.  If any of you are dealing with this world, talk to me, I can try to help you if not support you in your journey.

Have a wonderful Saturday, Kelly

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Helping people with Brain Fog.

Productivity Tricks Brain Fog

My mind isn’t what it used to be.

It’s a weird thing for a 28-year-old to have to say, but unfortunately it’s true.

There was a time when productivity was a part of me and I didn’t have to make difficult decisions on how to spend my energy. There was a time when I had energy…

But no longer. Chronic illness changed all the rules. I’m not even playing the same game anymore, but some things remain the same. I still have dreams and aspirations. I still want to be successful and be happy and loved. I can still manage to get work done on my own schedule.

It’s just all so much harder now because I suffer from Meniere’s disease, and Meniere’s, like so many other chronic illnesses, causes a kind of cognitive impairment called brain fog.

In a lot of ways, brain fog is hard to describe, and experiences can vary from one illness to another. But for me, brain fog is a frustrating clouding of consciousness. It makes it hard for me to focus and concentrate, and as a consequence my work and productivity suffers. It also affects my memory. I often forget why I walk into rooms, and I frequently have trouble recalling words.

It is incredibly pervasive problem, too. The number of chronic health conditions that cause brain fog is simply staggering. From autoimmune disorders, Fibromyalgia, Diabetes, Chronic Fatigue Syndrome, and Chronic Pain to Vestibular Disorders, Chronic Migraine, Crohn’s Disease, and Depression, just to name a few. It’s a problem that affects literally hundreds of millions of people around the world.

If you are used to be being a productive person, brain fog will take the wind from your sails. The fuzzy feeling of fatigue and lack of motivation that many people experience can make it nearly impossible to accomplish anything. It can be hard to participate in daily life when your mental energy levels are constantly depleted.

Productivity and illness are two words that clearly don’t belong together, but fortunately, over the years I have found helpful strategies for improving my productivity and getting more work done.

Write it all down:

The first rule of brain fog is to write everything down. In the past, I’ve written about ways to improve your memory. It’s an incredibly helpful practice but also quite difficult. A simpler solution is to just write everything down.

I keep stacks of index cards, pads of Post-it notes, and small notepads all over my house. It can be hard to organize all of the scraps of paper, but I don’t have to worry anymore about forgetting an idea, an appointment, or meeting my responsibilities.

I generally stick to several simple note taking strategies. For random ideas, and general note taking, I use 3”x5” index cards. I find that the small size keeps my notes concise and to the point. It also makes it easy to carry around.

For keeping lists, and doing creativity exercises, I use small notepads. My favorite of which is a product called the “Dotpad” made by the French stationary company, Rhodia.

I also use Post-It notes, though primarily for reminders. If there is something I need to remember, I write it down on a 3”x3” post it note and stick it to the place where I will need to remember something specific. Another good trick I’ve found is to stick post-it notes to the back of my cell phone. I do this with anything important that I need to remember in the near future. I keep a pad of post-it notes next to my bed for this exact reason. If I think of something while brushing my teeth or falling asleep, I immediately write it down and stick it to the back of my cellphone to make sure I remember it, and remember to read it in the morning.

My Desk

Keep a fixed routine:

One of the most powerful productivity tricks I’ve found is to keep a routine. When a routine becomes a habit through repetition, the brain uses less energy to accomplish task. Through a process known as “chunking”, the brain turns a complex routine into a single chunk of information, allowing us to execute a complicated set of actions on auto pilot. It’s a way for our brains to conserve energy, and it pervades our lives. According to a paper published in 2006 by a Duke University researcher, up to 40% of our daily actions are not conscious decisions we make, but automatically executed habits.

For someone with a chronic illness, you can use this to your advantage. If you follow a fixed daily routine, over time you will have more and more mental energy available to put toward the work you need to do. It will allow you to be more productive.

For me personally, I tend to go to sleep, wake up, exercise, meditate, and eat, at the same times every day. I also have a fixed morning routine. By the time I need to get to work and be productive, I usually haven’t had to make any decisions that day or waste any energy.

Manage priorities and keep an I-did-it list instead of a to-do list:

I sometimes use to-do lists, but on a daily basis, I try to focus more on priority management. On most days I tend to have a lot of relatively unimportant tasks to accomplish, and one or two that are priorities. But because I almost never have the energy to finish everything on my to-do lists, it’s incredibly important for me to know which tasks to focus on first. As long as I can address one priority, I can feel like I’ve accomplished something important for the day.

Also, instead of keeping a to-do list, it’s often far more rewarding to keep an I-did-it list. I find a list of my accomplishments to be a greater motivator then an unfinished to-do list. The latter causes anxiety while the former inspires hope and momentum.

Find your most productive time of day:

You may not realize it, but everyone has a time of day when they are the most productive. For me, it’s after I finish my morning routine, roughly an hour after I wake up. If I have something important to do, I make sure to work on it during this time. On my most challenging days, when my brain fog and fatigue are at their worst, I can often at least get something simple done during this time. My energy has no guarantees, but I am able to get the most important things done by leveraging my most productive time of day. Take time to experiment and find out which time of the day you have the most energy and are most productive.

Get rid of distractions:

This may seem like a simple suggestion, but in reality it’s quite hard to put into practice. With the rise of social media, mobile devices, and web based entertainment, we face more distractions than ever before. For someone with a chronic illness, these distractions can rob us of the little bit of productivity we have left.

When you need to be productive, it takes time and energy to get into the mental space needed to complete a task. Every time you get distracted, you have to start over and re-engage with whatever you’re working on. It’s not always obvious though, and until I started writing, I didn’t realize how much time I was wasting.

For example, while writing this article, I’ve received five emails, two text messages, three phone calls, and four Facebook notifications. And every single one has disrupted my mental flow. Each time, it takes me a while to get back into the zone and sometimes, I never do.

Like many of you, I am addicted to my phone. But when I need to be productive I try to force myself to turn it off. I close my web browser and listen to ambient music to drown out any distracting background noise. It makes a huge difference.

I also try to keep an organized workspace. It may not be as problematic as a smart phone, but a cluttered working environment can be a distraction and a source of stress. I find that when I keep my office clean and organized, I am able to focus better and be more productive.

Stop working and go for a walk:

Sometimes the best way to be productive is to stop working and go for a walk. I get easily overwhelmed when I have a lot of work to do and I’m feeling brain fogged and fatigued. Sometimes I try to just push through it, but that usually makes me feel worse.

When the frustration starts to build, I always go for a walk. There’s something about walking that just seems to stimulate the mind. I find it boosts my creativity, and works incredibly well to reduce brain fog.

Walking is also all that’s needed for your brain to start releasing endorphins, your body’s “feel good” neurochemicals. Ever hear someone refer to a “runner’s high”? They’re talking about endorphins. The release of endorphins causes your stress levels to go down and your feeling of satisfaction to go up. If you are feeling brain fogged, the endorphins released during a nice long walk will help you feel better.


All of these strategies have helped me cope with brain fog and improve my productivity, but I still have not been able to eliminate brain fog from my life, try as I might. I am, however, often able to mitigate it in the moment, and if I can be productive, get my work done, and meet my responsibilities when it matters most, then the end result is ultimately the same.

You can learn to cope with your brain fog, too. No matter what chronic illness or condition you face, you can learn take back your daily life, one minute of focus at a time.

Written by Mind over  Menieres.

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Chronic Fatigue Syndrome !!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

, Research, Stanford News, Videos

“This is probably one of the last major diseases we know nothing about”: A look at CFS

“This is probably one of the last major diseases we know nothing about": A look at CFS

Chronic fatigue syndrome affects between 836,000 to 2.5 million people in the United States, and 25 percent of them are confined to their bed. Earlier this year, the Institute of Medicine released a report acknowledging that chronic fatigue syndrome is a real and serious disease and renaming the disorder “systemic exertion intolerance disease” to better reflect its key symptoms.

The current issue of Palo Alto Weekly focuses on the disease and tells the story of local resident Whitney Dafoe, a promising 31-year-old photographer whose career was cut short when he began experiencing crushing fatigue, dizziness, gastrointestinal problems and dramatic weight loss:

Dafoe’s disease has progressed to the point that he cannot talk, read or use the Internet. His joint pain became so severe some time ago that he could no longer walk and needed to use a wheel chair. Now he rarely gets out of bed. On a good day, he’ll show his gratitude by pointing to his heart, his mother said.

His parents have stuck a few brief messages he’s scrawled on notes to the door frame outside his room. The yellow squares of paper are the only way he can communicate these days.

“I don’t know what to say. I just feel pretty hopeless about all this. I never get a break from bad things,” he wrote on one note.

“It’s so hard not being able to take care of my stuff. The feeling of helplessness it gives me is so stressful,” another states.

Dafoe, who is also featured in the above video, is the son of Ronald Davis, PhD, a genetics researcher who was instrumental in the Human Genome Project and directs Stanford’s Chronic Fatigue Syndrome Research Center. A second article details how Davis and colleagues are working to better understand the debilitating disease and develop diagnostic tests and treatments:

Davis and his team plan to use technologies developed for the Human Genome Project to sequence the entire genome of chronic fatigue patients, including 1,600 mitochondrial genes, more than 20,000 other genes and control regions that regulate genes. They hope to identify proteins that are found in immune cells, blood and spinal fluid; search for infectious agents in blood, bone marrow, spinal fluid and saliva and changes to gastrointestinal tract flora; and find evidence of autoimmune responses. The research could reveal DNA sequences that are altered in chronic fatigue patients.

The detailed approach is more comprehensive than that of other research, which has only looked at a fraction of the genes, according to the center’s website.

Davis is working with numerous collaborators across many fields, hoping the collaborative effort will attract the best minds in their fields.

“This is probably one of the last major diseases we know nothing about.

This is your last chance to be a pioneer,” he said.The intent of this site is to help others through sharing information Kelly Helsel does not endorse or intend to mislead any readers as to the content of any articles or books on this site.



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