Willis-Ekbom drives me out of my mind!

I have taken Requip or Ropinirol for about 3 years for Willis-Ekbom disease.  Well, that's about 2 years too long,because of a phenomenon called augmentation.  Augmentation occurs when a medication stops working and actually makes the symptoms worse.  So I'm in the process of switching over to Mirapex.  It requires that the drug is titrated up to a full dose.  Well, that restlessness is all over my body.  My arms are so bad I can hardly use them to type.  How miserable is that??  I know there are so many people that are dealing with this illness so there is so much misery that we never know about.  We just know what is happening in our own world and many days that's about all we can handle.  I know that's true for me.  I think one problem I get into is that I don't think to take my medication early enough so the Willis-Ekbom starts activating before I take the medication and then I find myself trying to catch up with it.  I should probably set an alarm to remind me so I take the medication on time.  I don't know about you, but I get tired of thinking about what I should be doing next.  That restlessness is so uncomfortable and I mentally manage it for a while and then I get to the point that I don't think I can take it another second!!  How is that for you?  Do you have the same problem managing your medication??

Meanwhile, I am also suffering with some serious nausea.  I think I have gastroparesis and will be seeing a GI doctor in one week down in Scottsdale, AZ.  I decided that I needed to go on a diet for gastroparesis to see if that would help.  Basically that's a no fat, no fiber diet.  Do you realize how many foods have either fat or fiber in them??  That eliminates most vegetables.  I just got up to take a Zofran so I can finish this post.  Just another thing to add to the misery!  So, I will let you know what the GI doctor says.  You may be having the same problem so it may help you get the medical care you need.  I can tell you why I'm so nauseated right now.  I just had two bites of chocolate cake and that did it.  Too much fat!  I really need to stop that.  To be continued . . .

Take good care and stay warm.  Winter has come to North America with a very loud roar!!

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!

In the Darkness of Night . . .

In the darkness of night I walk alone --
  I hear the night winds as they howl and they moan.
And on and on the winds howl and they moan.

I have no control as I search for some sleep
   and the restlessness over my body does creep.
And I search for my sanity and for some sleep!

I look out into the void of the dark,
  but the images I see are really quite stark.
And all that I see is the void of the dark.


As the night slips away to yield darkness to dawn
   I pace and I prowl across the dew laden lawn.
And I pace and I prowl 'till the light's early dawn.

As night turns to day I know night will return
   and that is the time again I will yearn
For sleep that evades me . . . I continue to yearn.

As night falls again that feeling appears
   and the night drags along into years and more years.
And that feeling creeps into years and more years.


Although it appears that alone I do pace
  while "It" creeps and crawls all over the place!
I know that alone I never do pace.

There are others that fight this battle not won
  from first hint of dusk until the first light of sun.
This is a battle that cannot be won.

A flicker of light in the east does appear
   and heralds the day and dissolves all the fear
As sunlight dances away all the fear.

And "yes" I'm still here!


My earliest recollection of WED/RLS was in my childhood, but the symptoms didn't start in earnest until 20 years ago following an injury.  I have actively fought nightly with this disease for the last 20 years.  Blessings to you as you walk alone through the night!

Willis-Ekbom Disease (RLS) Nightwalkers beware of MSG!

The Willis-Ekbom Disease Foundation is an excellent resource for anyone experiencing the symptoms associated with this disease.  Formerly known as the Restless Leg Syndrome Foundation, the Foundation has officially changed their name to reflect the seriousness and more global symptoms people frequently experience with this disease.  The WED Foundation distributes their quarterly publication to their members, which always contains valuable, cutting edge information.  The WED Fountation also conducts Webinars that are open to their members.


In the WED Foundation Winter 2013 edition of "Nightwalkers -- In search of a good night's sleep" there is an article titled "Can MSG Affect WED/RLS?" authored by Norma G. Cuellar DSN, RN, FAAN, Professor, Capstone College of Nursing, University of Alabama.  In this article Professor Cuellar discusses the hazards of MSG, which most often can be found in Chinese food and in processed foods.  According to Professor Cuellar MSG contains the salt of glutamic acid, which is naturally found in many foods such as vegetables and seaweed.  It is possible to develop glutamic acid toxicity if too much MSG is consumed; the body also has the ability to produce glutamic acid.  In addition, MSG has been known to cause allergic reactions that include skin reactions, headaches, dizziness or more serious reactions such as irregular heart rhythms, seizures and depression.  Professor Cuellar goes on to say that "MSG has been associated with cognitive disorders, endocrine dysfunction, migraine headaches, attention deficit hyperactivity disorder, Alzheimer's disease, autism, obesity, addiction, and sleep disordered breathing."  Food manufacturers are required to list MSG in the ingredients list on packaging labels so be sure to read the labels.  MSG continues to be added to processed foods and Chinese food despite the evidence that this food additive can be detrimental to your health.

MSG intake has additional health implications for those of us that are 'Nightwalkers'.  Glutamic acid is a neurotransmitter that may impact dopamine metabolism; dopamine is linked to WED/RLS symptoms.  A number of studies have demonstrated losses of dopamine in the brain following the intake of MSG.  There are currently no studies that have included WED patients so there is no research supported evidence that MSG affects WED symptoms, but some patients have reported improvement in their symptoms after eliminating MSG from their diet.

MSG is a food additive that has long been known for adverse effects therefore it is beneficial for everyone to avoid processed foods containing MSG.  But for those people that are the 'Nightwalkers' the implications are even greater.  To be informed about the latest information about WED, join the Willis-Ekbom Foundation and get connected to a community of people that provide support to one another and provide leadership for cutting edge WED/RLS research.  Blessings to you as you search for a good night's sleep!


Cuellar, Norma G., DSN, RN, FAAN, Professor, Capstone College of Nursing, University of Alabama. Winter, 2013.  Nightwalkers -- In search of a good night's sleep, pg 9.

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