The Number One Question: What helps make you feel better?

In all my computer travels through blogs, Facebook and Twitter people ask, "What is it that makes you feel better?"  That's a complex and loaded question.  The mind/body connection is part of what makes that question so complex.  If we start with the mind, our perception of our world makes all the difference.  Obviously the more positive the perceptions the less pain people have.  In an effort to learn more strategies to maintain positive thoughts, I have subscribed to Live Happy publication.  This
publication is chock full of good positive thinking tips and stories about what others are doing to maintain happiness and positive thoughts.  Another think I have done is join a week long Webinar on Wake Up Happy.  Some of the top positive thinkers around the world have shared their insights and strategies for living a more fullfilled and happier life.  Tomorrow is the last day of the series for this month and it was well worth joining these Webinars with a hot cup of coffee!  For more information on the Live Happy publication go to livehappy.com.  You can also learn more about the Wake Up Happy Webinars by doing a search on the Live Happy Web site.  It will help change negative thinking if you apply the principles and strategies.

So much has been written about the pros and cons of analgesic use for chronic pain.  The decision to use analgesics is a personal decision that should be made following a dialogue between you and your doctor.  Some people prefer to use alternative medicine strategies, herbal preparations, gentle yoga, meditation, and others prefer to use pharmaceutical strategies or a combination of these.  Again, this is a personal decision and you know what works better for you.  I'm not going to go into any of these strategies since there is plenty of information and opinions available in blogs and on Web sites.

Getting enough sleep is critical to feeling better.  So many people with chronic illness have difficulty getting restorative sleep.  For those people with fibromyalgia sleep apnea is frequently part of the problem.  Make sure you get evaluated for sleep apnea; it can make all the difference in the world.  Another piece of the puzzle is Willis-Ekbom Disease previously know as Restless Legs Syndrome.  Even if the restlessness you feel is more controlled, this disease can still impair sleep.  Talk with your doctor about the strategies and medications that can help you get a restful night's sleep.

Having something purposeful to do with your time is another strategy that helps to keep your mind off the symptoms that are making you miserable.  A friend of mine makes jewelry to sell so she is able to pace herself and work on her craft as she is able.  She finds a great deal of gratification making her jewelry and when she is able to make jewelry she feels better.  I have gotten involved in a skincare company that allows me to name my own hours and do as much or as little work depending on how I'm feeling.  Both me and my girlfriend can work in our jammies and that's always a plus!  So find a hobby or a job that isn't too demanding and allows for a great deal of flexibility.

There is one strategy that exceeds the power for change in how you feel over all other strategies.  That's the simple act of sharing and caring about one another.  There is nothing worse than being alone with your chronic illness and not having anyone that understands and cares.  Since people that have fibromyalgia tend to be highly sensitive people and frequently have narcissistic and abusive family members, there is no shortage of feeling alone with a debilitating chronic illness.  So all the chronic illness blogs, the tweets on Twitter, the postings on facebook and other social media have the power to make you feel better just because you have someone that cares and expresses love and support.  It's so simple for us to care about one another and there is no one that understands that better than someone with a debilitating chronic illness.  The rest of the world doesn't understand the power of caring and probably take it for granted, and they may not have their priorities established.  When you realize how it feels to be alone with a debilitating chronic illness, it gives you a different perspective.  It is easier to identify authentic and substantive priorities.  In that way, we are very fortunate and it is so good to have you all with me.  Sending love to all of you and wanting you to know that I do understand.  Blessings.

Willis-Ekbom Disease (restless legs syndrome) research has discovered a possible cause and defined the mechanism that impairs sleep.

Willis-Ekbom Disease (rls) is often seen in fibromyalgia, but may be present in other disease processes or be a primary disease with no relation to other pathology.  In The Journal of Sleep Disorders and Therapy, Vol.2, Issue 6, 9/15/2013 at http://dx.doi.org/10.4172/2167-0277.100139 the pathophysiology of Willis-Ekbom Disease (WED) has been theorized as an imbalance between Dopamine and Thyroid Hormone in a research article "Willis-Ekbom Disease (Restless Legs Syndrome) Pathophysiology: The Imbalance Between Dopamine and Thyroid Hormone Theory".  I would like to summarize the findings of this research.  If you would like additional information you can access this research as provided above.  This is an open access research article.

WED is a sensorimotor disorder that has both sensory and motor components.  Four features of WED need to be present in order to make the diagnosis:
1. An urge to move the legs is usually accompanied or caused by uncomfortable sensations and/or pain in the legs.
2. The urge to move or unpleasant sensations begin or worsen during periods of rest or inactivity.
3. The urge to move or unpleasant sensations are partially or totally relieved by intentionally moving the legs or body part that is affected by the unpleasant sensations.
4. The urge to move or unpleasant sensations are worse in the evening or night compared to during the day.

Supportive clinical features of WED are family history of WED, Periodic Limb Movements during Sleep, and periodic limb movements during wakefulness.  In addition, WED symptoms that improve with dopamine therapy is indicative that the patient has WED.  It has been questioned whether WED symptoms originate in the central nervous system or the peripheral nervouse system.  Applying cold packs, massaging the legs or stretching the legs relieves some of the symptoms, indicating that WED symptoms originate in the peripheral nervous system.  Medications that relieve WED symptoms do not cross the blood brain barrier, which also indicates that WED symptoms originate in the periphery.  This research was initiated by the authors due to believing the neurohormone dopamine is released in insufficient quantities to inhibit thyrotropin (thyroid hormone) resulting in excess thyroid hormone.  The increased levels of thyrotropin exceed the threshhold for stimuli perception of the somatosensory receptors located deep inside the leg, and the velocity of signals in the nervous system is also increased, which is felt as unpleasant sensations.  WED symptoms appear or worsen in the evening and at night when thyrotropin levels are increased.  Additional evidence that thyroid hormone is involved with producing WED symptoms is some of the medications used to treat WED symptoms decrease thyroid hormone.  Since research has shown that WED symptoms are worsened with an increase in thyroid hormone, it is thought that WED is actually a very mild form of thyrotoxicosis with a circadian rhythm component.

Thyroid hormone has an effect on mitochondria and the production of ATP or energy.  The mitochondria are the power house in our cells, because they produce ATP.  Thyroid hormone also enhances cognitive or thinking processes in the brain.  ATP has an excitatory mechanism that also increases alertness.  ATP is stored with other neurotransmitters such as GABA or glutamate, a fast-acting excitatory neurotransmitter.  The cascade of thyroid hormone, ATP and glutamate in the somatosensory pathways result in WED sensations and increased arousal that results in shortened sleep.  Some patients have sensations strong enough that result in painful stimuli.  "The pharmacological and therapeutic evidence highlight the importance of a strengthened neurotransmission of sensory inputs to the sensory cortex (of the brain) as the ultimate trigger of WED symptoms."  It is thought that dopamine as a neurohormone and neurotransmitter acts in the brain to contribute to WED pathophysiology due to inadequate dopamine supplies to moderate thyroid hormone.  "It is known that an enhanced tonus of the sympathetic nervous system (fight or flight system) impairs sleep.  As thyroid hormone may inhibit sleep, we believe that one of the mechanisms by which an elevated sympathetic nervous tonus system hampers sleep is through releasing thyroid hormone directly from the thyroid gland via its fibers directed to the gland."

WED is more common in patients with severe iron deficiency; your iron level should be checked by your doctor to rule out iron deficiency as a possible cause.  Supplemental iron will alleviate WED symptoms in those patients with severe iron deficiency.  It is assumed that the lack of iron impairs the balance between thyroid hormone and dopamine.  There is also a genetic influence, which is called primary WED.  It is thought that primary WED patients are born with less dopamine neurons than normal individuals so dopamine is in insufficient quantities to modulate the circadian rise in thyroid hormone.  WED can also be caused by medications that work to augment thyroid hormone.  This is a side effect of some medications.

Up to 90% of WED sufferers present with Periodic Limb Movements in Sleep, which are intermittent repetitive movements of the arms and legs during sleep.  During sleep the spinal cord continues to receive inputs and the spinal reflex is triggered causing limb movement.  Patients with Periodic Limb Movements in Sleep are thought to be more severely effected by WED.

In addition to many drugs that act to worsen the severity of WED, there are also many clinical conditions that either increase the severity of existing WED or triggers a new WED episode.  Other secondary WED episodes may be caused by pregnancy, hyperthyroidism (Grave's disease), diabetes, and chronic renal failure.

This research provides powerful arguments regarding the catalysts responsible for WED symptoms and also provides insight about the nature of the associated, circadian rhythm sleep disorder.  Managing your WED symptoms may mean getting a better night's sleep.  Blessings to you in the new year!

Willis-Ekbom Disease (restless legs syndrome) research may lead to better zzzzzzz's

Willis-Ekbom Disease (restless legs syndrome) is a serious movement disorder related to Parkinson's Disease.  This disease causes significant impairment in many people's lives and affects children and adults.  It is well-known that WED/RLS has a major effect on the ability to get a restful night's sleep, which is the most prominently identified WED/RLS symptom.  The Willis-Ekbom Disease Foundation (formerly known as Restless Legs Syndrome Foundation) is an excellent information resource for people suffering with this disease, and for medical professionals too.  The Web site may be located at www.rls.org; I encourage you to check out the Web site and consider joining this organization to give WED/RLS a strong voice.  Their publication, Nightwalkers, is always a resource of helpful, up-to-date information that includes some of the latest research.  Nightwalkers is published quarterly and I recently received a hard copy of the Fall 2012 publication.  There is an article, Exploring the Role of Glutamate in WED/RLS, in the Fall 2012 publication on page 13 that discusses recent research containing valuable information for people with WED/RLS . . . and possibly fibromyalgia.  Many people with fibromyalgia have WED/RLS.  This research may provide clues that connect these two illnesses and explain the sleep disorder that is prevalent in both.

The new research featured in the WED Foundation 2012 Fall publication is a study conducted by a Johns Hopkins team of scientists.  Dr. Richard P. Allen, the principle investigator, stated that glutamate-hyperarousal (glutamate is an excitatory neurotransmitter) would be a third major area of documented brain abnormalities in WED/RLS.  The three brain abnormalities are dopamine, iron, and now glutamate, if this research confirms the glutamate connection.  The most commonly used