At first sight Restless Legs Syndrome (RLS) doesn’t seem to be such a big problem. Having to get up a few times in the night to move around can’t really be that distressing, surely?
But if we think about it in terms of ‘sleep deprivation’ we may begin to understand why it is so disturbing and disruptive of normal life. Forcing people to stay awake and go without sleep has been a major part of interrogation techniques used by armed forces throughout the world. It was one of the ‘five techniques’ used by the British Army in Northern Ireland, until it was outlawed by Prime Minister Edward Heath in 1974.
Most students have ‘pulled an all-nighter’ - that last minute desperate cramming before an important exam or test - staying up all night fuelled by coffee in the hopes that last minute information will stick. And they survived. It isn’t recommended, however, because as a technique it doesn’t work that well.
But the effects of chronic sleep disturbance are much more insidious and serious.
It can have a serious and severe impact on many areas of health and work, on relationships and education, and may affect not just the victim but also their partners and family. For the sufferer, severe sleep deprivation will affect concentration, mood, and cognitive ability.
Severe RLS is a deeply unpleasant condition. In a study of the impact on quality of life of sufferers, RLS had a similar effect to other chronic disorders, such as type 2 diabetes, and clinical depression. RLS may require a considerable restriction of lifestyle as a result of intolerable symptoms during long airplane or car journeys, lectures or visits to the cinema, dining out, or even family meals.
People with Restless Legs Syndrome are more apt to suffer problems such as social isolation, frequent daytime headaches, and depression. The also complain of lower sex drive and other problems related to insufficient sleep.
RLS can contribute to insomnia. Insomnia itself can increase the activity of hormones and pathways in the brain that produce emotional problems. Even modest changes in waking and sleeping patterns can have significant effects on a person's mood.
Studies have shown that severe RLS is associated with a marked increase in the likelihood of having a stroke, heart disease and asthma attacks. Other studies have shown that there is an increased risk for depression and mental illness and, of course, there is an increased risk for potentially life threatening complications such as car accidents.
So we need to take RLS much more seriously and recognise the health risks that come with it. It seems that many doctors, including neurologists - the specialists who deal with it - simply fail to recognise the devastating impact of this condition. Unfortunately most of the medications which are prescribed for RLS can make symptoms worse in the long term.
For many RLS sufferers alternative therapies provide a much better (and drug free) way of managing symptoms and one such is our ‘acupuncture without needles’ GHET which can be followed in your own home.
There is a strong association between poor iron processing in the body and RLS; this seems to be specifically related to iron processing in the brain, in particular in a part of the brain called the Substantia Nigra which is thought to be malfunctioning in RLS. Iron is important for certain steps in making dopamine in the brain.
This is why all patients should have their iron status assessed. If there is poor iron absorption, then this should be treated first, and may avoid the need for any further medication .
If there is a low ferritin level, even in the absence of true anaemia, then iron supplements will help some people with RLS symptoms, and a low ferritin level should also be treated .
There is also clear evidence that augmentation is commonly linked to a problem with iron transport or absorption, and your GP may not be aware of this. In addition poor iron processing may not show on the the basic test your GP asks for and we recommend a more subtle test called Transferrin Saturation. For example, a patient who had responded well at first to dopamine drugs for her RLS found that her symptoms were getting more severe and more frequent. This is what is called augmentation and seems to occur quite commonly. Her iron and ferritin levels were normal, but further testing showed that her transferrin saturation level was low however. When she was treated with iron supplementation she was able to stop her dopaminergic medication.
For best iron absorption, iron pills should be taken at night on an empty stomach with vitamin C. They should not be taken with food, milk, antacids, calcium supplements or medications used to treat acid reflux and thyroid.
FOLATE AND VITAMIN B12
Vitamin B12 and Folate (vitamin B9) and iron are all essential in the manufacture and recycling of red blood cells, and we know that disturbances in iron processing in the body also disturb dopamine production in the brain.
Deficiencies of B12 and Folate have been linked to RLS symptoms and have been shown to affect the severity of RLS, so that symptoms are worse with lower levels of B12 and Folate.
Low levels of B12/Folate may cause other symptoms such as tiredness, muscle weakness, fatigue and prickling sensations over the skin. These symptoms could easily be confused with those of Restless Legs Syndrome itself.
Improvement in B12/Folate status by supplementing with these vitamins has been shown to reduce symptom severity in RLS.
VITAMIN D3 (25 (OH) VITAMIN D)
There is good evidence that a low level of Vitamin D is associated with RLS, and in one small study there was a significant improvement in the severity of RLS symptoms when sufferers were treated with high doses of Vitamin D3, either as tablets or intravenously.
We believe that everyone should have their Vitamin D level checked anyway because of the link with other diseases such as cancer and Alzheimer’s Disease. If your Vitamin D level is low then raising it to normal will help to protect against these diseases.
Vitamin D is an essential nutrient to maintain health and low levels of Vitamin D are associated with an increased risk of cancer, including cancer of the breast, prostate, and colon.
A low level of Vitamin D is a sign of increased risk of cardiovascular disease and high blood pressure.
There is an association between low Vitamin D and increased risk of diabetes.
Vitamin D helps to protect against autoimmune diseases and the inflammatory response.
Low levels of Vitamin D are associated with increased risk of depression, Alzheimer’s Disease and cognitive decline.
The link between osteoporosis, osteomalacia and increased fracture risk, and low vitamin D levels is well known.
Because of these widespread links with other health problems probably everyone should have Vitamin D levels assessed.
Some early research linked magnesium deficiency with RLS and Periodic Limb Movements during sleep (PLMS).
It was found that supplementing Magnesium produced a significant improvement in the severity of symptoms in RLS.
Some patients have found that massaging their legs with magnesium oil also reduces the severity of symptoms and leads to better sleep.
HIGH SENSITIVITY C- REACTIVE PROTEIN (HS_CRP)
This is a marker for chronic inflammation in the body. (Chronic means it has been going on for a long time). Chronic inflammation can disturb iron processing which, in turn, may disturb dopamine pathways in the brain.
C-Reactive Protein increases when there is inflammation in your body, which is why we suggest the hs-CRP test. It won't tell you the underlying reason for chronic inflammation, but it is an indication to look more deeply.
It may indicate infection or a chronic inflammatory disease, such as rheumatoid arthritis or lupus, and is a marker for increased risk of coronary heart disease which could lead to a heart attack.
If your hs-CRP level is raised and your vitamin D is low as well then you definitely should talk talk to your GP about further tests to assess the risk of heart disease.
Even if your only symptoms are the restless legs, but you have a raised hs-CRP, then you really do need to look further to find a cause.
2018 Webinar Series. Iron Biology: What We Should Know When Managing Restless Legs Syndrome, Earley, C. www.RLS.org
"All patients with symptoms of restless legs syndrome (RLS) should be tested for iron deficiency. At a minimum, a ferritin level should be obtained. A complete iron panel, including iron levels, ferritin, transferrin saturation, and total iron binding capacity, is preferable because the ferritin level can be falsely elevated in acute inflammatory states."Bozorg AM, Restless Legs Syndrome 25 July 2015 http://emedicine.medscape.com
"Efficacy of oral iron in patients with restless legs syndrome and a low-normal ferritin: A randomized, double-blind, placebo-controlled study". Wang J .et al 2009 Oct;10(9):973-5. doi: 10.1016/j.sleep.2008.11.003. Epub 2009 Feb 18
Augmentation in restless legs syndrome is associated with low ferritin. Trenkwalder C1, Högl B, Benes H, Kohnen R. Sleep Med.2008 Jul;9(5):572-4. Epub 2007 Oct 24.
Normal Ferritin in a Patient with Iron Deficiency and RLS.Mackie S, Winkelman J, J Clin Sleep Med. 2013 May 15; 9(5): 511–513.
The Association Between Vitamin D Level and Restless Legs Syndrome: A Population-Based Case-Control Study. Wali S et al. J Clin Sleep Med.2018 Apr 15;14(4):557-564.
The effect of vitamin D supplements on the severity of restless legs syndrome.Wali S et al. Sleep Breath.2015 May;19(2):579-83.
Magnesium therapy for periodic leg movements-related insomnia and restless legs syndrome: an open pilot study. Hornyak M et al. Sleep.1998 Aug 1;21(5):501-5.
Iron deficiency alters expression of dopamine-related genes in the ventral midbrain in mice. Jellen LCet al. Neuroscience.2013 Nov 12;252:13-23. doi: 10.1016/j.neuroscience.2013.07.058. Epub 2013 Aug 1.
Vitamin D and Chronic Diseases. Wang HM et al., Aging & Disease 2017 May; 8(3): 346–353. Published online 2017 May 2. doi: 10.14336/AD.2016.1021
Restless legs syndrome: pathophysiology and the role of iron and folate. Patrick LR. Altern Med Rev.2007 Jun;12(2):101-12.
Restless legs syndrome is a relevant comorbidity in patients with inflammatory bowel disease. Becker Jet al., Int J Colorectal Dis.2018 Jul;33(7):955-962. doi: 10.1007/s00384-018-3032-8. Epub 2018 Apr 3.
Magnesium therapy for periodic leg movements-related insomnia and restless legs syndrome: an open pilot study. Hornyak Met al., Sleep.1998 Aug 1;21(5):501-5.
Why do tests in RLS?
We want to see if there is an underlying disorder which could cause the symptoms of RLS, and which could be easily corrected.
There is a lot we don’t understand about RLS, although the usual statement is that RLS is a neurological disorder and is related to disturbances in dopamine levels in the brain which is why the dopaminergic drugs such as pramipexole (Mirapex), rotigotine (Neupro), and ropinirole (Requip) are prescribed.
It is also usually stated that there are no tests for RLS. This is true as far as it goes - there are no specific tests which will tell you whether or not you do have RLS, but there are some tests which could explain why you have RLS symptoms.
We know that RLS is more likely in association with some common disorders such as
and we have realised that many patients are started on medications for RLS without being properly tested for these other conditions.
For some time we have advised patients who want to visit the Clinic to have certain blood tests done first, to screen for some of these known associations. We know that some patients who had a problem picked up on these screening tests have then been able to deal with that problem without travelling to the RLS Clinic.
We assume that all patients will already have had a Full Blood Count and tests for diabetes carried out by the GP, so these are the further tests we suggest:
For a lot of people, getting a blood test through the GP is difficult, or they find that the GP is not very sympathetic or helpful or knowledgeable about RLS. These tests can all be done as fingerprick tests in your own home. Simply follow this link to order online through Medichecks.
In the Restless Legs Clinic we use ‘positional release manipulation’ as part of the overall programme for treating Restless Legs Syndrome.
Manipulation is a word that covers a lot of different treatment approaches, some forceful and direct and some very gentle and specific. When you use the word ‘manipulation’ most people think of the forceful, direct thrust type of approach which produces loud clunks and clicks and which can be frightening, and sometimes painful. This is the traditional and commonest type of manipulation, which probably most people have experienced.
The positional release techniques we use here in the RLS Clinic are very different. They aren’t forceful or direct but gentle, specific and precise, and aimed at releasing the characteristic muscle tension found in RLS.
Most patients are surprised at the gentleness of these approaches and often feel that nothing much has happened until their RLS symptoms start to improve, which usually begins within 1 or 2 sessions.
Other types of manipulation do not address these tender points specifically and don’t seem to work for RLS. By using ‘positional release’ we expect to improve the severity and intensity of RLS symptoms in more than 7 out of 10 patients. Most of the patients we now see in the Clinic have had RLS for years or decades and the majority of them rate ‘severe’ or very severe’ on the IRLS Scale. Many of them are taking 2 or 3 medications for their RLS but are still having severe symptoms. Despite the length of time they may have had symptoms and despite the severity of those symptoms most people still respond to these very gentle manipulations.
But it’s probably wrong to focus on the single word ‘manipulation’. The positional release manipulations that we use are only one part of a comprehensive programme which also includes acupuncture and monitoring and feedback and its the package as a whole which produces success.