First a disclaimer - I am not a medical professional. I am a patient with a severe form of this disease.

My first comment is that the name of the condition was changed two years ago from Restless Leg (or Limb) Syndrome to Willis-Ekbom Disease (WED). The name change was made because there is sufficient information now available to identify this as a single condition and not a collection of conditions with similar symptoms. A change was made to the diagnostic criteria at that time that excludes other known conditions that cause similar problems, such as renal failure.

I believe that WED should be included in DSM 5 based upon the fact that research has shown that there are definable neurological conditions in the brain that lead to WED. The fact that there are issues with the levels of dopamine in specific areas of the brain has been known for quite some time. On-going research at Johns Hopkins also appears to show that there are changes to the glutamate levels in these same areas that may be the cause of the severe insomnia that many of us face.

Finally, I would challenge anyone who is familiar with the severity of the symptoms faced by those of us with the severe form of this disease to say that it is any less important than sleep apnea or some of the other sleep disturbances found in DSM 5. Like sleep apnea, research is beginning to show that may be a correlation between WED and cardic disease and death in older patients.

Yes, the old RLS has been challenged as a product of the pharmaceutical companies and jokes have been made about it. But there is little that I find funny about it nor can I blame it on the drug companies when I cannot get to sleep until 2A and then wake up again at 5 for the fourth or fifth day in a row.

FYI

Stephen: Having experienced RSL I can attest as to how disruptive it is to restful sleep. As an independent researcher I believe that RLS involves muscle spindle cells which become overactive - and the random firing prevents progression into REM sleep just as sleep apnea does. The lack of restorative sleep has been linked to many problems, including diabetes, elevated BP and immune system disfunction. Low levels of vitamin D3 also are suspect in muscle problems.

Muscle cramps have been linked to hypertonus of muscle, likely due to an imbalance between muscle spindle cells, and golgi cells. Further recent research links a specific group of cells to gait coordination

( http://www.newswise.com/articles/view/617366/?sc=mwhn ).

Muscle hyper tonus is not self correcting - high pressure - deep tissue work over a matter of weeks can return the tissue to normal status - this is the goal of any therapeutic massage. You can test your leg muscles by direct pressure - if you cannot put 80 pounds of pressure on any muscle group w/o pain the indication is to muscle overuse injury. A good sports medicine massage specialist can treat this, toleration of 80 pounds of pressure indicates tissue is somewhat normalized.

Muscle pain and muscle spindle cells.

( http://www.sciencedaily.com/releases/2010/06/100624091755.htm )

Piriformis syndrome can lead to sciatica pain, it is estimated that 80% of "sciatic" pain is the result of the spazzed ( hyper tonus ) piriformis muscle pressing on the sciatic nerve in the butt. This also can result in leg pain that interrupts sleep.

( http://www.sciencedaily.com/releases/2005/02/050201192443.htm )

Dystonia affects muscles of the entire body - reinforcing the theory of a brain chemical cause. Focal dystonia ( as suffered by musicians ) affects a limited number of muscle groups, - and seems treatable by localized massage. I would suspect a similar differential in brain involvement in RLS - I believe the localized problems may have little to do with a systemic chemical imbalance.

Hope this is of some help.

Greg.

Greg, I might be able to go along with your description if WED was limited to the symptoms of the mild form of the disease that effects about 80% of those of us who are affected. However, for those like me who are in the much smaller group of severe cases, our WED is no longer limited to our legs but effects most of the body. In my case, it hits me simultaneously in my legs, arms and torso.

Since research on WED has really only been going of for a few years, compared to other diseases, there is still far too much that is not known. Most of the work has centered around a couple of chemical imbalances in the brain, but there has also been work on vascular effects, such as this recent article in Neurology.

http://www.neurology.org/content/early/2014/04/30/WNL.0000000000000462.extract

Most of the older studies centered on dopamine issues at treatment with dopamine agonists, but the ongoing work at Johns Hopkins on glutamate levels may end up helping to explain why the gabapentin class of drugs can also be effective.

I suspect that your muscle spindle cell hypothesis would require a stretch to address the frequent co-morbidity of WED and migraines - an area that I would certainly like to see researched beyond statistical studies. It is a small sampling, but most of those who I correspond with who also have severe WED, also suffer from migraines.

For many of us there are also issues with anxiety-like and or panic-like symptoms that occur during only during the severe attacks. I suspect that this would also be a stretch for your hypothesis, but I willing to hear more.

Finally, as a competitive distance runner I am far too familiar with Piriformis syndrome. It has caused me no end of grief and has knocked me out of competitions for months on end. As for the sensation of piriformis/sciatic pain in my hamstrings, they are nothing like the WED that I have experienced, both in the mild form when I was younger nor the severe form that I experience now.

Hey Stephen: My experience with muscle overuse injury is long term and personal. We both know that a chronic health problem which is under served by the medical establishment is quite the motivation for self directed research. My suggestion to try high pressure - deep tissue massage work is #1 it is of low negative risk - permanent damage is unlikely. #2 historical successful use in multiple cultures, and in many situations in which I have been involved. Having observed over 30 years a search for the molecular basis to muscle overuse injury - I can say I hope there is a there there - but it seems a good bet to hedge your bets if there are other venues available.

I found it interesting that the research you cited originally focused on micro vascularization. My perception is that over active muscle spindle cells may result in edema, which then increases pressure inside the fascial sack, - which would tend to reduce circulation at the level of capillaries. This reduction of circulation might also reduce the leakage of plasma at the capillary level, reducing nutrient and O2/CO2 and waste product exchange rates - especially in ligament and joint areas. We know that hyper tonus in muscles can have a negative effect upon tendons - and I suspect would contribute to a heightened stress on ligaments and joints - and the long term risk of damage.

http://www.ncbi.nlm.nih.gov/pubmed/20086639

While I am mostly clueless about systemic muscle concerns I do feel that many of the people suffering from chronic muscle problems may be self medicating to attain a more comfortable existence - and in this light it would be folly to ignore any of the related brain chemical interactions. Everyone needs to self medicate in one form or another.

My experience would lead me to view muscle overuse injuries on a continuum - from 100% normal status to almost completely non-functional.

Best of luck on your journey.

Greg