Lost in the World? The Rhomberg Test Poll

Standing is just not a pleasant experience for many people with CFS. The autonomic nervous systems of a chunk of people with ME/CFS dysfunction when they stand up - sending their heart rates soaring, their blood vessels opening instead of closing and , their brains into confusion due to lack of oxygen. But even if they can stand their problems may still not be over because then they have to balance and that can be problematic in ME/CFS as well.

An exploration of the Romberg Test for Balance - Years ago Dr. Cheney introduced the Romberg Stance test to the ME/CFS patient community stating a positive test result indicated that deep brain dysfunction was common. The test did make it into the Canadian Consensus Criteria (in the physical examination section) but is not found in the CDCs CFS Toolkit (which mentions physical examinations but provides no guidelines at all).

The Romberg test measures how effectively three systems of your body (vision, vestibular input, proprioception) work together to maintain your balance. We orient ourselves in the physical world by examining our spatial environment with our eyes, by using sensory receptors in our joints and muscles (proprioception) to ensure that we are upright and by the vestibular system in the inner ear to determine how to rotate, bend and balance. Two of these systems need to be working well for you to maintain your balance.

The Romberg Test is done using your eyes open and closed. More people fail the Romberg test when their eyes are closing because doing so takes away your vision inputs- thus forcing you to rely on the other two. If one of those two (proprioception, vestibular) are not working properly you will sway or even fall down when you attempt test with eyes closed..

Doing the Romberg Test

1. Stand erect with your feet together and eyes open for a full minute.
2. Then stand erect with your feet together and eyes closed. Have someone close by as a precaution in case you have a strong positive response to the test.

Romberg Test Videos - (none of these demonstrate the speed with which a person with ME/CFS can topple!)

[video=youtube;jQITNbpn_UQ]http://www.youtube.com/watch?v=jQITNbpn_UQ&feature=related[/video]
[video=youtube;wnJ-8u8bEfU]http://www.youtube.com/watch?v=wnJ-8u8bEfU&feature=related[/video]

Sharpened Romberg Test- be careful with this test!

[video=youtube;YBQNwvWgREU]http://www.youtube.com/watch?v=YBQNwvWgREU&NR=1 [/video]

A positive test occurs when you can't maintain your balance and sway or even topple over. The essential feature is your becoming more unsteady with or without you eyes closed. Some practitioners gently tap the patient to see if that throws their balance off.

What is Happening?

Proprioception - according to Wikipedia or proprioception or joint position sense is transferred from sensory receptors in the joints and muscles up the dorsal columns of the spinal cord to the brainstem and up into the central cortex and via the spinocerebellar tracts into the dorsal basal ganglia and up into the cerebellum.

Balance and effort issues? Interestingly proprioception is not just about balance but about muscular effort as well; sensory receptor in our muscles and joints also help us determine how much muscle effort is needed to balance, walk, lift up objects, etc. which leads to the whether some of the muscular tension in ME/CFS could be due to an out of whack proprioceptive/kinesthetic system that locks up as it struggles to figure out how to balance/move the body?

Dr. Wood, an FM doctor who presented at the OFFER 2010 conference, suggested that benign hypermobility syndrome (Ehlors Danlos Syndrome) which is characterized by lax joints could be triggered (if I got this right!) by overly contracted muscles trying to hold the joints in place. Proprioception is greatly impaired in Ehlers-Danlos Syndrome; a genetic condition that results in weak connective tissue throughout the body and which occurs in both FM and ME/CFS.

Severe loss of the sensory apparatus in the muscles/joints or in the spinal column can lead to problems with perception of effort and/or with arms and limbs flopping about the body. One person whose sensory pathways in the spinal column were essentially destroyed by an autoimmune reaction following an infection eventually learned, to control his flopping limbs (they would occasionally hit him in the face!) by using his visual cortex to take over control of them.

Vestibular system - The vestibular system in the ear helps maintain balance through three canals that use fluids, crystals and hair to determine how to position the body as it moves. Problems with the vestibular system induce vertigo, instability and nausea and are often highlighted by difficulty walking or keeping balance in the dark.

Seabiscuit author Lauren Hillenbrandts inability to remain upright or even to maintain her sensory position while lying down (watching the room whirl about her) may demonstrate the extremes of vestibular dysfunction that occur in ME/CFS.

Cerebellar Dysfunction? - Dr. Cheney has proposed that deep brain dysfunction is causing the Romberg Test result problems. Several websites, however, suggested that the Romberg Test is not a test of cerebellar dysfunction. One stated that Patients with cerebellar ataxia will, generally, be unable to balance even with the eyes open;[5] therefore, the test cannot proceed beyond the first step. (This information is from the internet, however..

Causes

Neurological Conditions - A lesion or wound in any of these above named systems (spinal cord, vestibular system in the inner ear) or in the basal ganglia or the motor neurons can result in a positive Romberg stance test. Parkinson's disease, cerebellar ataxia, normal pressure hydrocephalus and spinal cord disorders can all cause balance problems. Peripheral neuropathy and arthritis can also damage the nerves in the limbs enough to interfere with their signals to the brain.

Spinal cord compression? - people with spinal cord stenosis (spinal cord compression) can fail the Romberg Test. Spinal stenosis occurs when the canal carrying the spinal cord narrows compressing the spinal cord thus interfering with the transmission of signals to the brain. Dr. Wood, a Fibromyalgia practitioner, noted at the 2010 OFFER Conference that his thinking on the importance of spinal cord compression in FM has changed radically over the past few years. He stated that the evidence now indicates that spinal cord compression plays a significant role in a significant subset of people with FM.

Infection - in the Disembodied Lady Oliver Sacks reported the case of a young woman who lost her proprioceptive abilities due to a viral infection of her spinal cord.[10] The infection resulted in her being unable to move properly or control her tone of voice. Over time using focused exercise (and the concept of neuroplasticity) she was able to acquire a stiff and slow movement and nearly normal speech. She had trouble in judging how much effort to employ in various tasks such as picking up objects -something I think may be endemic in ME/CFS.

Alcohol - Alcohol - which appears to be poorly tolerated in many ME/CFS patients can severely affect the proprioceptive system (which is why the Romberg stance is used during DUI stops). Could the quickly debilitating effects of alcohol in ME/CFS reflect a weakend or impaired proprioceptive system?

Help for Balance Issues?

None of these to my knowledge have been tested in ME/CFS.

• Harnessing Neuroplasticity - The Wikipedia article on proprioception includes several disciplines that can be used to help restore balance and reduce muscle effort in some individuals. These disciplines use focused techniques to retrain the brain so that it creates new pathways that allow it to bypass whatever injury has occurred. This process by which the brain does this is called neuroplasticity.
• Movement therapies such as the Feldenkrais method (see also Anat Baniel) and Tai Chi and some types of yoga use very slow, focused movements that force the brain to shift out of its automatic patterns and build new pathways that can lead to enhanced proprioception.
• An exercise ball can be used enhance proprioception by balancing the abdominal/back muscles. The Balance Ball idea is intriguing idea given the blood pooling that occurs in the abdomens of some people with ME/CFS. Several exercise programs in ME/CFS focus on slowly increasing abdominal muscle tone to reduce blood pooling in those areas.
• (A recent FibromyalgiaTai Chi study published in the New England Journal of Medicine found substantial improvements after a 12 week, twice a week trial of Tai Chi. SF 36 scores were moderately increased while an activity level test (FIQ) dramatically improved. http://www.ncbi.nlm.nih.gov/pubmed/20818876 They still had fibromyalgia but they felt better and did more. Check out Jodys piece on Tai Chi here. )

Do you have to last a minute with your eyes closed? I could probably last and stay standing but not without major bad effects. I start to feel nauseous and dizzy and I sat down a few minutes ago and still have those feelings. I opened my eyes and sat down after about 30 seconds with my eyes closed.

I don't know what poll option to choose, so I didn't pick one.

I shouldn't have tried this... I need a poll option for "regret trying"!

I didn't have any problems at all standing with my eyes closed. I have POTS too.

It sounds like we could have used another option - got sick in some other way....Hope your feeling better.

LOL yeah, me too. Just did it, but now I'm nauseous and dizzy, just as if I have been twirling too much on my office chair. I felt like I was swaying a lot and almost fell down, but my mom told me I was only swaying a tiny little bit, and correcting that swayings with subtle hip movements. So I voted "No", since I was able to stand still, though it certainly didn't feel that way.

I'm not going to take the poll since mine has resolved but from 1990 - 2006, I would've failed with my eyes opened and closed. I couldn't have controlled my ataxia with excercise. When my brain shut down, it shut down. I didn't even know I was falling.

Maybe those who can control this through excercise are dealing with vertigo and not ataxia ? ? ? ... x

Interestingly since I became unwell three years ago I have had balance problems where I topple mainly to the left side. When I did these Romberg tests that is the same way I fell each time. Wonder what the correlation is?

What an interesting response - you are unsteady 'inside' but are steady outside - you can retain your balance.

Never heard that about migraines. I will probably try the balance ball since my abdomen tends to get bloated - it could use some help!

So xchoco - do tell - how did your ataxia resolve?

Hi again ... here's what I wrote on you initial article about ataxia ... I can't think of any other way of saying this ... : ) ... x

Hi Cort,

I used to fail the Romberg but a year after going on the elimination diet and getting the gluten, casein, soy, corn and chemicals out of my diet, my balance and walking normalized. I've been walking perfectly normal for 4 years this month ...

Since ataxia and neuro symptoms vary I'll describe what my ataxia was like.

When I tried to walk, my vision would get so out of focus that objects appeared to be floating; my legs felt too heavy to lift, were wobbly and eventually after say 200 feet they'd forget how to walk and I'd have to think about moving the left then the right and so on; I bumped into anyone or anything next to me since I didn't realize that I was falling. It took hitting the object to realize it. I didn't feel a thing ... I didn't realize until this went away that my heavy arms were part of this too.

All of these symptoms cleared up most of the way one day without any warning. I was at Macy's with my son and I noticed that my legs weren't going out on me anymore. Because I'd been using a motorized cart most of the time if I was running errands, it took me awhile to get my strength up though. If I wasn't using a cart I had to lean on the shopping cart or just sit. I stayed home quite a bit due to this. My visual problems didn't totally resolve until I got my hypoglycemia under control but objects no longer appeared to bounce immediately.

Dr. Hadjivassilou discovered that gluten could cause ataxia back in 2002. He calls this gluten ataxia. Google gluten ataxia for more info. FWIW. I think that other toxins can cause ataxia as well. I'll never know for sure if it was gluten causing mine but since I'm a DQ2 and that gene has been linked to gluten ataxia, that diagnosis fits.

I still have orthostatic intolerance so as far as I can tell these conditions aren't related. Losing blood in the upper part of the body and therefore losing functionality of the brain, heart, lungs, kidneys, etc isn't the same as a neurological reaction to a toxin. Blood loss leaves us sluggish and eventually if bad enough causes us to have to lay down ... whereas toxins cause an interruption in neurotransmitters ... Well that's my take on this anyways ...

Great article btw ... X

Ps. Part of the problem I see in how these conditions are diagnosed is that doctors aren't isolating out symptoms that can easily be identified as coming from one neuro problem versus another. IMHO, in a nutshell, that's how the diagnosis of ME/CFS came about ... My healing journey in the last 5 years has all been based on taking on one symptom at a time. I'll get off my soapbox now ...

Everything you ever wanted to know about gluten ataxia ... ; )

http://sites.google.com/site/jccglutenfree/glutenataxia

BTW ... I have a friend who thought she had gluten ataxia because she had gluten antibodies, but who actually has leaky gut. Meaning she has multiple food intolerances, dysbiosis, and nutritional deficiencies. She wasted at least a year by only avoiding gluten. So, I'd recommend that anyone with any food intolerances be on the look out for leaky gut. I myself wasted several years eating those gf foods when I needed to be on a grain free diet such as Paleo diet.

An integrative doc can help you with these tests ... X

Very interesting Xchoco! My first doctor I saw was all about food allergies. I wish I had been more careful earlier. Getting rid of grains definitely did help even if it wasn't a world-mover for me.

Hi Francelle,
You may have a nystagmus. The test for that is called Electronasography, or ENG, and is done by an Ear, Nose and Throat specialist. I would not recommend doing it though, since it is VERY uncomfortable.

It turned out I had a "great, left, beating nystagmus", which means that I was being thrown to the left with each beat of my heart. It has eased over the years of my illness.

I don't know about CFS, but a study on FMS by Dr. Xavier Caro, et al showed that 70% have nystagmus.

klutzo

Confused about how test was administered.....

This test was confusing for me, because when my Physical Therapist and later my Neurologist tested me for this, they did the test differently.

They both had me close my eyes, put my arms out to the sides to help me, and then raise one foot, and counted how long I could stand on one foot. I flunked it badly, when it was done that way.

They told me it is a good gauge of your risk of falling as you get older, and that has been borne out for me. I have fallen flat on my face twice this year, and fell down backwards once.

I've been practicing trying to do it longer, since I was told that would help. A healthy person should be able to stand on one foot with their eyes closed for 25 seconds.

I passed the test the way it was presented here, though I felt a bit woozy with my eyes shut.

klutzo

I did this for sixty seconds each time. With eyes open, I was swaying a bit, but able to correct. I felt the way the pressure kept changing in my feet and legs, and sometimes the legs really clenched to keep me upright. When I did it eyes closed, the same thing, but it became increasingly difficult to maintain balance. At 59 seconds, I toppled backwards, in spite of trying really hard to keep my balance.

Afterwords I had a headache, too. I had a mild headache before hand (I always have one nowadays), but it ramped up quick and hard during the test and is only slowly subsiding and not going back down to the original level.

So what does it mean?

I am seeing a cardiologist. He suspects I have two problems, orthostatic intolerance and something else. Need more testing!

The more I read about CFS the more I see myself, whether it's orthostatic intolerance, inflammation, neck issues, nasal issues, PEM, you name it. I've got every single one of the symptoms on the Canadian Clinical Consensus except POTS -- and I haven't had my blood flow issues adequately tested yet, so who knows?

(3-5) Years ago after being rushed to hospital due to the ME and all my neurological system going haywire (reflexes not responding, pupil sizes different etc, falling over just trying to turn a corner), 2 neurologists had me do this test. They positioned themselves next to me and had me shut my eyes (hands at sides and feet together). I instantly fell so fast that it surprised us all, breaking their promise to catch me both missing me due to speed I went down. They said they'd never seen anyone go down as quick. (in my fright as I fell, I kind of lunge forward at the neurologist to try to get my balance, missing him in the process and hitting floor). I dont know if i even lasted 2 seconds.

As my ME is much better then it was, I know I wouldnt go down as quick .. probably wobble or something first but back then.. I didnt even get a chance to to try correct my balance as I had none at all with no hope of being able to correct it with eyes shut. (too scared to try this test again without someone I trust to catch)