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Article: Lost in the World: the Romberg Stance and ME/CFS

Discussion in 'Phoenix Rising Articles' started by Phoenix Rising Team, Sep 21, 2010.

  1. Phoenix Rising Team

    Phoenix Rising Team

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  2. Mithriel

    Mithriel Senior Member

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    Very interesting article. It is so important for ME but rare to read more than "positive Romberg sign".

    I have a bad movement disorder so my proprioception is not good anyway, but the Romberg problem varies. At its worst I fall over every time I blink so I have had some bad falls.

    I realised that it is very rarely that I do not hold onto something. I actually started using a walking stick because of this.

    I find I concentrate very hard on my feet touching the floor and it helps. The problem is that when I was tested in hospital I was concentrating so hard I did not fall over, typical.

    Infuriating that it is classed as a neurological sign so both the CDC definition and the Oxford use it as an exclusion criteria.

    Mithriel
  3. Cort

    Cort Phoenix Rising Founder

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    If you fall over when you blink that would suggest to me, a laymen, that your visual centers are keeping you going but your proprioceptive centers - the sensory receptors in your muscles and the pathways leading up your spinal cord - are perhaps not transmitting signals correctly. As you as you turn the vision your body can't figure out how to balance itself.

    I have heard that concentrating on the feet -without looking at them - can help rebuild the sensory pathways to the brain.

    Actually I don't believe that a positive Romberg stance test is precluded by Fukuda or the update of the exclusionary criteria in the Empirical Definition. My upset is that Dr. Cheney has been talking about it for a long time - I fail the test Eyes closed in a heartbeat - I sway right to the ground - which means to me that most people with ME/CFS probably do fail it, yet the CDC has never included it. On the other hand, Cheney is the only ME/CFS doctor who has tested me for it. (How many people have been Romberg Tested by their doctors?)

    What an interesting test it is and what could it mean? As people age they are more and more likely to fail but what about all the CFS patients who are not old and don't have Diabetes or Parkinson's or whatever - and still FAIL THE TEST?
  4. xchocoholic

    xchocoholic Senior Member

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    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 ... :D :D:cool::victory: :Retro redface:

    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 ... ;)
  5. Merry

    Merry Senior Member

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    Thank you, Cort. Most of this information I had not seen before. Well-written - detailed and yet easy to understand.

    Merry
  6. Cort

    Cort Phoenix Rising Founder

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    Congratulations XChoholic! That's a lesson learned for everyone - check out an elimination diet. Gluten ataxia makes perfect sense to me. Wheat and grains were causing knee and muscle pains, fatigue, brain fog and night sweats for me. Going off them definitely helped. Thanks for the info.

    How is chocolate for you? :confused: (It causes cramping for me).
  7. twopenneth

    twopenneth

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    I have had an objective measured vestibular test (electrodes etc) I have a problem with a significant deficit in my left ear this was taken in 2000. There were some other measured abnormalities and a slight visual deficit (asymmetry). When the finger test is done I have to strain to focus close up otherwise I see two fingers on close peripheral vision.

    Although deficits were observed there was no real diagnosis thus leaving open the psychologising of my illness; furthermore future referrals would exclude objective measured deficits from my significant history giving the opportunity for consultants to psychologise my symptoms.

    There are several subjective balance tests that can be carried out with assistance at home. Do not try alone just in case of falls.

    Here are some tests I have tried which indicate balance problems: these may indicate peripheral nerve neural lesions or proprioception problems

    I cannot complete many of the balance tests which should be carried out bare footed. e.g .

    Standing still with your eyes closed for a full minute without swaying . (a naughty Dr did this test for 5 seconds) I only realised he had not done it correctly after a subsequent test was longer and positive.

    I can’t stand on my heels with my eyes open or shut.
    I can’t walk on my heels

    I can’t stand heel to toe for 30 seconds.

    I can’t walk heel to toe.

    I cannot stand on the outside of my feet.

    I cannot stand on one leg (either leg) for more than 3 seconds.

    In the UK I have been told by one Dr that my Romberg’s was negative another (honest/accurate) Dr said it was positive. My caloric test (objective ECGs) and vestibular rehabilitation in 2006 shows a record of balance issues.

    I have a proprioception problem. It seems whether the neural damage was caused by chemical or (viral biological or allergic/intolerance) toxins, damage can occur which can damage the balance section of the brain.

    I n my own experience some Drs make mistakes and some are manipulative with the absence of physiological evidence they can psychologise a physiological illness. I feel this is what has happened with the ME/CFS controversy.
    Government psychiatrists have psychologised ME/CFS and various neuro immune diseases. I do pray that the retro viruses’ link is accepted by the government health departments and the patient groups infected with the retro virus and other neuro immune sufferers will be treated with the respect they deserve and some treatment will be available for everyone affected!

    Where people have balance problems they should push for objective testing and an explanation for what these results mean so that they do not remain a victim of the ME/CFS label which means in the UK at least no other examinations are recommended because influential psychiatrists such as SW promotes the idea that ME/CFS is a psychological illness and no other (usually relevant) investigation is necessary!
  8. Cort

    Cort Phoenix Rising Founder

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    Another tough story from the UK...It makes you wonder where's the integrity? Or, how many doctors are just like sheep - preferring to believe that they believe despite evidence to the contrary. This brings to mind stories of doctors rejecting psychiatrists professional opinions that a patient is not depressed (as if the primary care doctor knows better).

    Lots of balance issues but no clear idea of where they come from, I guess.

    Thanks for all the info, including those different tests. We should figure out a series of self-tests ME/CFS patients can do for out patient data repository.
  9. Esther12

    Esther12 Senior Member

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    Thanks for this. Bookmarked for when I've got time to go through it all.

    I've been having balance trouble since I started getting migraines (I've felt like I've had more energy recently and been able to do more but seem to have also started getting migraines and brief bouts of severe vertigo - very strange as I don't normally have changes in symptoms).
  10. Wonko

    Wonko Senior Member

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    back off the activity/stress - both are minor warning symptoms of overdoing it in my case - one of my bodies ways of telling me to cut down on whatever it is I'm doing - obviously, being a bloke, for years I wouldnt let little things like not being able to consistently remain upright (or see) slow me up so i know it gets worse from there - after a while (which is why i described it as a minor warning lol)

    your pacing is probably a little off
  11. Esther12

    Esther12 Senior Member

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    Thanks: that's what I assumed too, but I've played about with it and not found a way of improving things. My pacing has been at it's most consistent recently (and I was hopeful this is what had brought about more energy) so I'm not really sure what's going on. Hopefully it will sort itself out.
  12. dannybex

    dannybex Senior Member

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    It seems to me that the last video is the most accurate demonstration of the test -- it can make a huge difference if one's feet are apart or close together, and also if one's arms are to the side, or folded.

    I got quite wobbly doing the test as presented in the last video (feet close together, arms folded), but didn't do to badly when my arms were at my side and feet more spread apart as shown in the first.
  13. Cort

    Cort Phoenix Rising Founder

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    Danny I think the first video is inaccurate! - now that you point her stance - your feet should be together, I believe. Those were the instructions I got from a website.

    In any case a normal person should be able to pass all three tests.
  14. Cort

    Cort Phoenix Rising Founder

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    '
    This is the time of the year when the weather starts changing that I start regularly getting flu-like symptoms. I tried the Romberg a couple of months ago - in the late afternoon when I usually do better I could almost handle it - now I'm kind of fluey and tired - and I just topple. Anyway, my symptoms increase at this time of the years. I wonder if atmospheric barometric fluctuations could have something to do with it? Or maybe its just the winds bringing in dust and other junk in the air.
  15. Cort

    Cort Phoenix Rising Founder

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    I see about 350 people have checked this out so far but only a few people have taken the poll .... Do some people feel uncomfortable taking the test or reporting on the poll or did they miss the poll or ?????? (the polls are always anonymous, by the way)
  16. slayadragon

    slayadragon Senior Member

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    This is the sort of thing where I feel like I'm right on the borderline between "CFS/NotCFS."

    I didn't have any problem doing this Romberg test today. I wish I'd tried it in 2007, so that I had a comparison point.

    That doesn't mean I'm normal though.

    I was at a yoga class the other day and was able to do all the poses fine. (It was labeled as "Intermediate" but pretty relaxed. I could have done a lot more.)

    The one exception was where we were supposed to lean forward and then raise a leg behind us. I was wholly unable to do that. No one else had any problem at all. And a lot of them were older than I was, overweight, etc.

    Note that while ME/CFS is usually defined by post-exertional malaise, I don't have any problems doing vigorous physical exercise and being active even in moderately non-pristine environments now. So whatever is going on with this balance problem, it seems to be even more integral to the illness (at least in my case).

    Maybe it's the result of pathogens still being buried in the brain. I've been taking some various herbal things recently and getting a substantial amount of die-off. That's another thing that I'm on the borderline of "CFS/NotCFS": I can take more of these substances than most CFSers and get die-off that's not all that intolerable, but a normal person (meaning even people who are sick with all kinds of other diseases) wouldn't get any die-off at all.

    Barometric pressure changes conceivably could have an intrinsic effect on people, but it's my experience that (at least in my case) they're 100% due to the environmental biotoxins. Mold and cyanobacteria colonies tend to release their spores when the barometer is dropping, apparently because the subsequent rain makes it more likely that they will be able to form new colonies. Also, UV light tends to degrade biotoxins, so cloud cover during barometric pressure drops adds to that.

    This is precisely the time of year this starts to become a problem in many places. Just yesterday was the first time in the past few months that the weather has had an effect on my condition here in Chicago, for instance.

    Where are you right now, Cort? Sometime if you're in Las Vegas and you start feeling that downturn, try driving out of the city a ways. For instance, Pahrump seems invariably to have great air quality, regardless of the weather. The Red Rock area just west of Summerlin is pretty good regardless of the weather. Death Valley is invariably great.

    If you can make symptoms go away by changing locations (even though the altitude remains unchanged), I would posit it's something in the environment having an impact on you.

    Best, Lisa
  17. Cort

    Cort Phoenix Rising Founder

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    Thanks Lisa, I've done alot of camping - alot of getting out of the city and it does help. I liken camping to eating good food or bad food. If I eat bad food I'm more tired; if I eat good food I feel a bit better but still with ME/CFS.

    My problem with camping was that I became sensitive to the odors of sages and other plants that release volatile chemicals so except for sparsely vegetated areas I actually do better in the city where there aren't such concentrations of chemicals! ....What a bizarre thing to be suffering in an absolutely pristine desert 70 miles from any city..... (and you'd thought you'd heard it all ;))

    Still in the right environment I do do better and I think you're right - its something the wind brings in..I often have trouble when its windy and after it rains I often feel noticeably better - all that clean air.
  18. Enid

    Enid Senior Member

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    Thanks Cort for a most interesting article explanations etc. We don't have these things here and go through most alone so it has been a great help.
  19. Cort

    Cort Phoenix Rising Founder

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    Glad to hear it Enid (that its helpful - not that you don't have such things there :eek:)

    Thus far 22 people have taken the Romberg Test (out of the 600 that have read the article! but anyway :)) 86 percent have failed the test; remarkably a third of the people couldn't maintain their balance with their eyes OPEN.......Something is going on with proprioception!
  20. biophile

    biophile Places I'd rather be.

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    If you pass the Romberg test you shouldn't be worried that you don't have "authentic ME". This procedure is not a litmus test, and according to a study by Dowsett & Ramsay et al published in 1990, only 6% of 420 ME patients failed the test. I don't know why the obvious majority of people here have failed the test when only a small minority of patients in the above study did so. I wouldn't be surprised if a proportion of the "healthy" population fail the test as well, nor would I be surprised if people like Wessely would explain away positive Romberg signs as "simulated" or caused by a lack of motivation or functional dizziness or whatever. But I haven't looked into the issue much so what I just said could be wrong and ignorant.

    I have occasionally failed the test by toppling and often failed by swaying, but other times I can stay relatively balanced. My balance is worse without vision and there seems to be a delay between closing the eyes and the impact on balance.

    At the end of Cort's article, retraining the brain is mentioned as a way to compensate for balance issues. My childhood balance, vision and coordination were not particularly good even before developing CFS symptoms as a teenager and I spent years growing up compensating for them, so I don't know if all this is a factor in swaying or being able to avoid toppling over most of the time. I imagine that it would be more effective to compensate for some deficits as a child when brain plasticity is better.

    There have been times where I have stumbled over when trying to stand up and other times where my balance was obviously not that good in other scenarios, but overall I don't think I have major balance issues in general because in terms of balance I can still technically and briefly ride a bicycle or carry a box up a flight of stairs if I really had to and tried hard. For me brainfog and exertion intolerance are more important obstacles for doing these things. I have a friend with cerebral palsy who has serious balance issues so I'm just grateful my "balance issues" are nothing like his.

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