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Hunting down the cause of ME/CFS & other challenging disorders - Lipkin in London
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Clothes sensitivity?

Discussion in 'Hypersensitivity and Intolerance' started by Marco, May 13, 2010.

  1. willow

    willow Senior Member

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    Athene
    That sounds tough. Have you heard of Dr Rind http://www.drrind.com/therapies/metabolic-temperature-graph Unsure if it's possible for you with a 4 yr old, but it might be interesting?
    For me that's definitely a sensory thing crossing over with a cognitve processing. I'm generally unable to converse fullstop but if you think about it conversation, people's movemants and body language at the same time is a highly complex process. In my case I sometimes find using cutlery tricky too (fine motor co-ordination) and then there's eating and separating the taste and other eating sensations from evrything lese that's going on around. All that together is a very 'busy' situation.

    Jewel
    I read that sensory integration was desirable but say a child did manage to contain it do you think that would add to their load of neuro disonance and suppressed stress they carried with them? Asking becuase my experience as an adult is that contained or supressed things have some cost and sometimes pop out elsewhere.

    Although there are lots of positives about being an adult in this situation and being able to make my own choices, I also admire, sometimes even envy the honesty that younger children have about their neuro distress. Seems in some ways this honesty and lower tolerance to whatever causes them distress lowers the burden of strain or stress and allows them more neuro peace and over all more ease.

    Mark
    Can you recommend one in particular. (I bought one mail order but it contained SLS- sodium laureth sulphate a known irritant, and another dubious ingredient.) Thanks.
    I keep meaning to try just sodium bicarb but haven't got there yet!
     
  2. Sing

    Sing Senior Member

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    Athene, I wonder if he is trying to show that he can only deal with one thing at a time., re. meals? Eating is an intense activity. He can't do multi-tasking during it as most people can--i.e., eating a mix of foods while conversing, sitting up properly at the table, etc.

    I can relate to this symptom of needing to do one thing at a time--needing simplicity, silence, aloneness often too.

    Sing
     
  3. Marco

    Marco Old blackguard

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    I'm convinced that there is a very strong connection between the idea that our immune systems are dysregulated e.g, as I posted on another thread :



    "we are all too painfully aware that ME/CFS is dogged by the issue of heterogeneity. On one hand there's the 'stating the bleedin' obvious' heterogeneity resulting from loose diagnostic criteria that allow anyone who is frequently tired to be labelled as CFS.

    More substantively, we are all aware that those with 'true' ME/CFS often differ in many ways. Some have sudden onset, some gradual. Some can point to a viral onset, some not. Some cite vaccinations, heavy metals, organophosphates, (the gulf war?) as precipitating factors and some point to overexercise, diet, or stress. While viruses (and retroviruses) have long been proposed as pathogens, none to date have been found in all those diagnosed with ME/CFS. While XMRV may turn out to be the key, PWCs have already been tested negative and it is possible that many of those diagnosed with ME/CFS will be found not to have an active XMRV infection. Some people reportedly make a quick spontaneous recovery while others become chronically ill for many years and fluctuations/relapses are common. Some report that fatigue, the central and sometimes only symptom considered important in CFS, was not a factor in at least a stage of their illness. Finally, regardless of how we view 'therapies' such as CBT/GET or the Gupta Programme, they are reported to be of some help to some people (bear with me of the last point).

    I would like to propose that ME/CFS, in ALL CASES, is caused by a dysregulation of the immune system leading to TH2 dominance. For want of a better title I'll call it Type 2 Immune Dysfunction Syndrome (syndrome to distinguish it from other specific illnesses caused by TH2 dominance).

    Taking this approach I believe avoids the 'problem' of searching for a single etiology, improves diagnosis and clarifies the treatment options
    ."


    ....... and some, if not all of our bizarre behaviours. I see little difference in principle between 'hair pulling' and clothes discomfort .... both seem pretty OCD to me :

    http://www.forums.aboutmecfs.org/sh...mmune-system-with-mental-health-and-behaviour
     
  4. willow

    willow Senior Member

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    Sing, that's a beautifully simple way to put it. How come I didn't say that!:D:D
     
  5. BEG

    BEG Senior Member

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    Like so many here, I too, get the screaming meemies when I'm in contact with rough, stiff, and binding clothing. Thought I was the only one living in comfy outfits. Sweats in the winter. Cotton jammies in the summer. Tops match the bottoms, so just possibly I can call them capris and T-shirts.

    Jeans are my mainstay for going public, esp. black. They appear just a bit dressier than blue denim. They are very comfortable with the use of fabric softener (fragrance-free), and I buy those with a little stretch. In the summer I change into khakis of all shades for public. I top them with soft T-shirts, flowing, lightweight sweaters or cotton cardigan sweaters. If I get too warm, the sweaters go around my shoulders, but doctor offices are usually chilly. Like most of you, all jewelry and clothing is removed when I get home and I'm back into the jammies or sweats.

    I have light and noise sensitivities as well. I believe the clothing sensitivity is part of that overall hyper reaction thing. All of them are uncomfortable and aggravating. For me, the degree of sensitivity changes day by day. Do any of you find that to be true?
     
  6. serenity

    serenity Senior Member

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    yeh for sure, there are some days i can do things like see a movie & the noise wont' bother me as much, or be in a crowded restaurant, but other days - no way.
     
  7. jewel

    jewel Senior Member

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    Sorry, long post...

    Hi--
    BEG & Serenity-- The notion of sensitivities changing from day to day is hallmark for sensory processing disorders. That is, kids can look fine one day, or at one point during the day, handle the mall or what not; the next day the child is throwing a fit at the mall because everything "hurts my ears," or "is too bright." People assume sometimes that if the child did it one day, s/he can certainly do it the next day, so it is capricious behavior. But, that is not true. ( Ok, it could be true sometimes for some kids on some days. ) But if a child is having a day where the senses are not working well together, then everything would be more work for that child, making some aspects of life unbearable on those days. (Of course, this is true for adults as well.)

    Likewise, when sensory processing includes vestibular or proprioceptive issues, the person may be very "clumsy" on some days, not on others. Or, other aspects of spatial functioning can be variable . The concept of sensory diet makes sense in that it involves activities throughout one's day that help the person's sensory system work in a more integrated fashion. This also leads to more consistency in behavior. However, it is not a quick or magic fix. And, it doesn't seem to "cure" what appears to be neurological "glitchiness", but it does seem to attenuate it.

    Athene, the web link above to the Out-of-Sync Child website is also a title of a book. (The Out-of-Sync Child-- Recognizing and Coping with Sensory Processing Disorder). The author's second book is more focused on activities(Out-of-Sync Child Has Fun : Activities for Kids with Sensory Processing Disorder
    by Carol Stock Kranowitz
    I hope these help; they are out in paperback. The activities are designed to be enjoyable and easy to do. Also, if you do have access to a specialist, perhaps one thing to ask for would be a screening and recommendations for you to carry out at home, rather than the very expensive, ongoing therapy. OTs often also work on the oral sensitivities so that children can more readily eat foods with different textures , if that is a concern.

    Marco, I don't doubt that there may be immunological underpinnings to many behaviors; still the sensory issues are, I think, a little different than OCD behaviors, in their variability for instance. But, it will be fascinating to see how many more conditions are linked to immune dysregulation. (And treatment one can only hope would become more precise when aimed at the immune dysregulation...).

    Willow, --"I read that sensory integration was desirable but say a child did manage to contain it do you think that would add to their load of neuro disonance and suppressed stress they carried with them? Asking becuase my experience as an adult is that contained or supressed things have some cost and sometimes pop out elsewhere."[/COLOR]

    I don't doubt it! That is so perceptive. This is why it helps to respect kids and provide support when they are still young!


    I find this an interesting topic, because even if someone does not have a processing "disorder" per se (controversial term, possibly to be added to the DSM), it does help to understand one's own profile, and especially for parents, one's child's.

    Take care, J.
     
  8. alex3619

    alex3619 Senior Member

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    Hi Athene

    Regarding Willow's comment, clothes heated in a clothes dryer are softer and more tolerated, at least for me. They don't have to be dried that way, just the heating up and tumbling helps. It could be because of changes to the fabric, or because volotile chemicals are released - in which case I would keep anyone sensitive away from the dryer.

    I can relate to many of the issues discussed here. I do not wear long trousers, period, for any reason, and I am lucky enough to live in a place warm enough for me to get away with it most of the time. Other clothes bother me, but not as much, except that I find that I can tolerate freshly washed (with extra rinsing) clothes for a while before reacting. Cotton is best.

    I also could not tolerate wool as a child, but I do like sheepskin.

    Bye
    Alex

     
  9. leela

    leela Slow But Hopeful

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    Wow, Marco, thanks for posting this. I had no idea this could be related to Autism/Aspergers (which I've been wondering lately if I'm not actually in the spectrum somewhere.)

    I cannot *stand* having things around my waist (god how joyous I was when low-rise came back,) around my neck (never ever crew neck anything) or my chest (a bra is like a medieval torture device to me.) But since I got ill it has gotten waaay worse, to the point that during a flare I have to wear my underwear inside out because the seams feel like blades, and sometimes even my nice soft cotton clothes feel like hair shirts, or like someone sprinkled them with ground glass. Forget anything tight, but even loose drawstring things have to sit at the hip. Even a loose-fiitng tshirt makes me feel crazy if it rests against the place where my clavicles meet. How nutty!

    Jewelery/watches are impossible. I have made myself get used to three rings that are of special significance--though sometimes they become too much and I have to remove them.

    Also, while a different issue (I think it is connected via the general inflammation pattern of ME/CFIDS), I sometimes find even my fluffy down pillow to be too much pressure on my head.

    So don't let anyone mess with "old faithful"! Make a shirt out of sandpaper for Mrs Marco to wear for one day. Then she shall worship at the tattered hem of your Old Faithfuls!
     
  10. camas

    camas Senior Member

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    Glad to know I'm not the only one sitting here with my undies inside out. :D
     
  11. onebush

    onebush Guest

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    This just started with me. The elastic in my PJ's drives me nuts. I have even wondered if I have become allergic to elastic. I don't like tags in the back of shirts either and never have.
     
  12. Sing

    Sing Senior Member

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    I cut the elastic in my long john bottoms, which double as pj's in the winter--not just one place but a number a cuts evenly all around the waistband. This makes it tolerable.

    One problem I have is that my pants are so loose that they slip down--never all the way before I tug them up again--but this adds to the general look of dishevelment and my feeling of having gone completely to seed!

    I can relate to one person saying that even cotton sometimes feels as though it has sprinkled glass in it. This just happens to me with the slightly rough cotton. Before this problem developed, I would never have called those cottons rough, but now I know. Fortunately, I can still wear the softest cotton.

    Sing
     
  13. Marco

    Marco Old blackguard

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    I wonder how many of us with clothes sensitivity have any other sensory processing problems and if these pre-dated ME/CFS?

    Pre - ME/CFS I can recognise social anxiety, mild clothes sensitivity, eye contact avoidance, problems with facial recognition and mild problems with multi-tasking.

    Post ME/CFS, the clothes and muti-tasking problems are much worse, and, is IBS a sensory processing problem?
     
  14. Athene

    Athene ihateticks.me

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    By rummaging about to follow up on Jewel's excellent informatin, I found this checklist

    http://www.sensory-processing-disorder.com/sensory-processing-disorder-checklist.html (scroll down a bit for the lists)

    of all the different types of sensory processing disorders, which are of course very common among people at all points on the autistic spectrum.
    I was reassured that my son is a very mild case of this, though alarmed to realise my ADHD nephew is a pretty severe case.
    You should be able to whizz through it to decide how much you are/were affected by it.

    Re IBS, there was a theory that IBS was a sensory processing thing and it was therefore called "spastic colon" by some doctor but this was only ever a theory. In reality I am convinced it is undiagnosed (therefore untreated) SIBO. Sensory processing all seems to relate to nerves controlling vol.untary muscle whereas the intestine and its peristaltic movements involve involuntary muscle.

    Sorry about my typing. I seem to have a Word Proceessing dosorder at the moment.
     
  15. Marco

    Marco Old blackguard

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    Athene

    I seem to recall a fairly convincing study where they used an lightly inflated 'ballon' inserted in the colon of those with IBS and controls. Those with IBS experienced much higher degrees of discomfort and 'need to go' suggesting increased sensitivity (which of course doesn't rule out inflammation or other pathology). Which is somewhat similar to the Light study findings?
     
  16. jewel

    jewel Senior Member

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    I like the term "word processing disorder" :) J.
     
  17. longbow

    longbow Guest

    Wow. I thought it was just me. I wear loose clothing all the time. I found several years ago that I could no longer abide anything tight/heavy and discovered the best way to hold up my pants is suspenders. I wear an oversize everything and that helps. In summer wear Birkies or moccasins, and the whenever I am home I wear those Indian pants that some call sleep pants or yoga pants, they are even more comfortable than shorts. I'm amazed to find this thread. I really just thought it was just a personal pecadillo.
     
  18. glenp

    glenp "and this too shall pass"

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    I am happy to see this post

    I never thought of this as a symptom of our illness.
    -I've always been one to dress cimfortably too - I hate those cute ll underpants!!!

    I also only like all cotton for shirts, i cant stand the smell of many fabrics

    Athene - I feel for your lil guy. I wonder. I have a dog that thinks he is more human then dog. He pulls the covers down as has to go on the sheets in my bed. If I put anything with my scent on it on the floor he immediately goes and lays on it. I wonder if when you washed your sons clothes you could slide some in his bed and maybe after sleeping with them, he would be more comfortable with them? My dog has symptoms of this illness too.

    glen
     
  19. leela

    leela Slow But Hopeful

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    I kind of love the idea of this secret society of people all over the globe, lying around in their pjs, sporting inside-out threadbare underwear.
    At least we haven't reached the level of crazy where we are wearing our underwear *over* our clothes..
     
  20. Athene

    Athene ihateticks.me

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    Glen, I'll try that dog-basket idea with my son's clothes, who knows if it could work?!!

    Leela, Maybe we SHOULD put out underwear on the outside? Perhaps we could develop superpowers? Any it might be even more comfy!
     

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