Clothes sensitivity?

[Marco]

OK, I've been holding off posting anything on this just in case I'm the only one having this problem (you know, the sound of tumbleweed blowing as everyone else shuffles out of the room embarassed).

But, having seen this symptom listed on the XMRV+ questionnaire I'm feeling a little more emboldened.

Since the onset of illness, I've become less and less tolerant of the feeling of pressure of clothes on my body, particularly around the waist (not related to any weight gain).

As a healthy kid I was always sensitive to the feel of certain fabrics (wool primarily) but nothing of this nature.

I can't stand any feelings of tightness, around the waist, wrists, collar etc and (ahem) underwear is the worst.

At times the irritation drives me crazy and Mrs Marco is getting a little fed up with my baggy faded underwear.

I've noticed clothes sensitivity as an issue in autism and given the suggested links between XMRV, autism and ME/CFS, there may be something in it. Add to that the Drs Light studies on pain reception and findings that people with IBS are more sensitive to gut pressure than controls.

Please tell me I'm not the only one.

 

[Stone]

I have to say that, while not to the degree you have described, I do find waistbands such as on jeans just about intolerable, as well as anything tight or binding. My wardrobe now includes a wide selection of comfy cotton gowns, yoga pants, big T-shirts and sports bras. I find that the worse my disease is at any given time, the more I hate anything binding on me. It doesn't cause pain per se, I just hate it in general. When appearing in public on occasions where yoga pants just won't cut it, I've opted for more comfortable dress slacks with wide waist bands and kind of flowy things for blouses. People think I'm dressed up, but really, I'm more dressed down, in terms of comfort. You are not alone. And oh yeah, as for the underwear issue, perhaps Mrs Marco would be more pleased if you tried out some dfferent types, and in a size larger than you shoud wear, such as maybe a boxer style. Also, they make some cotton men's sleeping pants that would work as underwear that appear to be comfortable, and if I were you, I would look for something with a drawstring and just snip the elastic band. Just some thoughts. I hope you find your solutions.

 

[Woody]

OK, I've been holding off posting anything on this just in case I'm the only one having this problem (you know, the sound of tumbleweed blowing as everyone else shuffles out of the room embarassed).

But, having seen this symptom listed on the XMRV+ questionnaire I'm feeling a little more emboldened.

Since the onset of illness, I've become less and less tolerant of the feeling of pressure of clothes on my body, particularly around the waist (not related to any weight gain).

As a healthy kid I was always sensitive to the feel of certain fabrics (wool primarily) but nothing of this nature.

I can't stand any feelings of tightness, around the waist, wrists, collar etc and (ahem) underwear is the worst.

At times the irritation drives me crazy and Mrs Marco is getting a little fed up with my baggy faded underwear.

I've noticed clothes sensitivity as an issue in autism and given the suggested links between XMRV, autism and ME/CFS, there may be something in it. Add to that the Drs Light studies on pain reception and findings that people with IBS are more sensitive to gut pressure than controls.

Please tell me I'm not the only one.

I can definately relate. Comfortable, broken in levi's, 100% cottton tee shirts with a loose neck, no watch, or ring, and barefoot when I can get away with it. Swimming/floating in a nice warm pool is bliss!:victory:

 

[flybro]

i'm the same can't stand wool, I like loose neck, no cuffs, and loose waist,

some materials just feeel weird and make me jittery juddery.

all my clothes are cotton.

even bed sheets and pillow cases can create a freaky jittery reaction in me.

 

[Victoria]

I've been "tight clothes" sensitive for many years (actually come to think of it, never wore a ski beanie skiing, except in a blizzard 30 years ago).

Have worn elasticised waistbands & loose shirts for many years.

I hate the scratchy feel of wool in particular. And tight necked tops - forget it.

Marco, I suggest you tell Mrs Marco that tight clothes restrict your uhhmmmm ability to help her around the house.

I love the look of loose cotton/linen pjamary looking clothes. They are so elegant & .

I wish I still had the model thin figure to carry them off as the height of fashion casual gear (instead of looking like a pregnant seal).

PS And Marco, never hold off telling us anything. We're all men & women of the world & understand where you're coming from. We all come from the same place on this forum, so can truly understand your sensitivity about these things.

 

[Athene]

Marco you are SOOOO not alone!!

I cannot stand anything even slightly tight around my waist, I find it agony. I need everything stretchy and soft.
Mr. Athene has often had to put up with the horror of me walking round the house with no bra on (I know in some cases that would be a treat but in my case it is quite scary).

As far as underpants are concerned, would Mrs Marco allow you to just "go commando"?

My son also has CFS (diagnosed first with autism, but I changed his diet and then they changed the diagnosis) and he often refuses to wear clothes at all. I can argue him into a pair of underpants but he cries sometimes that his jumper is too hard and that his trousers hurt him.

Temple Grandin (high functioning autistic university professor) wrote that she remembers as a child crying for hours because a silk petticoat felt like barbed wire scraping on her skin. I am sure you're right that the autism/CFS link is there.

 

[helsbells]

On top of the long list of acronyms I am accruing I have also been diagnosed with Aspbergers, this seemed to be a big questions in the interview actually - did seams bother? was there certain fabrics I couldn't wear. oddly i don't sound as particular as everyone so far, won't wear jewellry or watch and always wear casual clothes, hate being cold, flat shoes...oh wait a minute perhaps I am LOL

 

[jace]

Marco, I'm with you. I live in pyjamas, when I go out I change into street clothes, but they have to be loose and comfy, and as soon as I get home it's back in my pyjamas again. I can't even bear socks.
(shh don't tell anyone )

 

[_Kim_]

Marco,

Thank you so much for your post. We hoped that one of the potential values of the survey might be for people to recognize that there are others out there with the similar symptoms. When we asked for input on the survey, we got some interesting responses, like this one about not tolerating clothing.

Add me to the intolerant list. Soft cotton clothing, sheets, and towels for me. No jewelry at all and even my glasses that I started wearing 2 yrs ago drive me crazy. I have thought about contact lenses, but I'm afraid that might be even worse. You are definitely not alone.

 

[Marco]

Thanks you all for your responses.

I definitely don't feel quite so odd now although Mrs Marco is still threatening to post photos of my "old faithful" underwear.

Athene. I fear my 'going commando' might be even scarier than your going bra-less. With always wearing loose waistbands its an accident waiting to happen.

Interesting comments about jewelry which I'd never thought of previously. I tend to wear my wristwatch so loose that it turns round on my wrist and I'm always damaging the glass as a result. I also recall taking years literally to get used to the feel of my wedding ring.

Personally I wonder how much of the discomfort is due to pressure or the materials per se and how much of it is an intolerance of 'novelty'. I certainly find particular clothes that I wear to death and feel very uncomfortable in other clothes until I become habituated to them over time and they become the new old favourites.

I'm sure normal people have the same sensations but its drastically exaggerated in us.

Its a great pity as it is many years since I got any pleasure from clothes or shopping for clothes. In fact clothes are more of an enemy and 'dressing up' to go out (on the rare occasions we do) is up there on my list of pet hates (along with tucked-in shirts).

Kim

Without sounding like a broken record, would there be any chance in the future of opening the XMRV survey up to all forum members. I feel the data on the whole cohort would be invaluable.

 

[willow]

Oh yes, count me as one of the afflicted.

Have any of you tried organic clothing? It can be expensive and some of it is scarily tasteless but if you choose well or are afflicted enough to ditch pride and also buy at sale time maybe it's worth a shot. It certainly helps me. I think my favourite is gossypium yoga pants, you know the type with a deep non-elasticated waistband. They last for ages too....But more for Mrs M than Mr

Cotton is one of the most sprayed crops grown and all the bleaches, dyes, finishes and dressings that are applied to clothing, bed linen etc.... well it's no surprise they might also add to the clothes sensitivity problem.

Here's some companies I know that sell at least some organic clothing/bedding
http://www.gossypium.co.uk/
http://www.seasaltcornwall.co.uk/
http://www.ascensiononline.com/
http://www.naturalcollection.com/category/fashion/
http://www.peopletree.co.uk/
http://www.thenaturalstore.co.uk/index.php
http://www.bynature.co.uk/erol.html
http://www.frankandfaith.com/default.asp

Allergy/eczema clothing might also be worth a shot. Here's a couple
http://www.eczemaclothing.com/Department/Organic+Underwear/
http://www.allergybestbuys.co.uk/ebuttonz/eczemaclothing/index.shtml

 

[Woody]

Marco

Athene. I fear my 'going commando' might be even scarier than your going bra-less. With always wearing loose waistbands its an accident waiting to happen.

Marco, be careful of the tumbleweeds if you go cammando!

 

[Min]

Oh clothes - they itch, scratch, hurt, irritate - and bra straps and wires drive me crackers with pain

hooray for dressing gowns (bath robes?) & pyjamas

(watch out for nettles and thistles too!)

 

[_Kim_]

Kim

Without sounding like a broken record, would there be any chance in the future of opening the XMRV survey up to all forum members. I feel the data on the whole cohort would be invaluable.

As you know, the goal of the XMRV survey is to answer the question: What do people who are infected with XMRV have in common? As a byproduct, we now have a comprehensive instrument that can be modified to other answer other research questions.

Let's see if this current survey works okay and gives us some answers. After we iron out the wrinkles (had to get a clothing pun in there), we can start to talk about other applications.

 

[Sunday]

What an interesting thread. I don't think my intolerance is as high as some of you, but now I'm understanding why some of my sheets now feel unbearable scratchy. I thought I'd stopped wearing earring just because it was another thing to think about and do, not very high priority, but now I'm wondering. I've never worn a watch, because I'm one of those people watches go screwy on (high em force field), and I don't find my necklace a problem.

But I am definitely there with the underwear issue, I've mostly quit wearing it since I got sick; the feel of it bothers me. And yes, you're all right: it's the elastic, the binding quality. I hadn't realized that until I read this thread.

Marco, I had hoped to give you a link to some boxers which fastened with adjustable buckling cloth straps, but this store has quit selling them. They used to advertise them as French-style boxers. However they do have "seamless boxers", so here's the link http://users.sa.chariot.net.au/~dna/kefirpage.html in case that's useful to you.

OK, did more search and found them, at Brooks Brothers! You'll see that they button in front, no elastic, and have tabs for the fit. (My search was on "french back boxers". The first, search, on "french boxers", got me lots of burly surly men and dogs.) They are very classy-looking, if pricey, so maybe Mrs. Marco will be pleased!

I'm sorry I can't provide a similar service for the bra question, but I've considered them instruments of torture long before this illness, and am fortunate to be small enough that I don't have to wear one. I wear double-thick shirts, shirts with pockets in strategic places, underlayer with a camisole. Woven fabrics are more concealing than knits. I've heard rumors that there is such a thing as a comfortable bra, but never found any evidence to support it (so to speak).

What an interesting lot we are in our sensitivities. I can't help feeling that we are just louder versions of the human indiosyncracies all around us.

 

[Athene]

Hey Marco,

Get a load of this Men's Underwear Repair Kit !!!
http://www.stupid.com/fun/REPA.html

Now you can just carry on wearing those old drawers you love so much...

 

[jewel]

Yep, clothes with soft texture and a comfortable fit are the key. Who cares about fashion? Seriously, though, these are the types of reactions common not only in kids with autism, but also in children with more general sensory processing or sensory integration issues. When I think back to my childhood, I definitely think I had some characteristics of sensory sensitivities as a child, especially hating those fluffy, pinchy puffed sleeves and scratchy petticoaty material (crinoline?). Seriously, my grandmother would buy my older sister and I matching dresses. My sis always took very good care of her things, so once she outgrew hers, I had the privilege of inheriting them... my coping strategy was just to continually stick them in the laundry hamper-- until I was about 11, when I took over doing my own laundry. Ok, sorry to be so free associational with this topic. My one serious question: Are these sypmtoms for you ones that appeared with your illness (co-vary with the other cfs issues) or did they predate the illness? If the latter, have they worsened?

 

[Marco]

Thank you so much Athene.

I've just ordered the Repair Kit. What a relief.

Jewel

The only clothes sensitivities I recall from childhood was an aversion to pure wool. No food aversions, no asthma, and the only other sensitivites I can recall were a bad reaction to mycn antibiotics and frequent hives from eating too many oranges. The clothes issues plus food and chemical intolerances definitely started with the onset of illness.

However, thinking about this and after following the autism threads I can see patterns prior to the onset of illness that, while not obvious to others, might fit in with the autism spectrum.

I was a generally pretty healthy, in fact very healthy, person up to the age of 23. But even prior to this I would say that I had social anxiety. I had a few good friends but disliked crowds and meeting new people. In fact for most of my life I've felt a little like an 'alien' - not completely comfortable with others and not really fully experiencing life as others seemed to. Again perhaps everyone feels like this to some extent?

I have also always been happy with my own company, am happier (and good at) tackling a single task in depth rather than multitasking and have a moderate issue with face recognition. I really only noticed these things from the age of around 10 or so which is probably the age at which we really start thinking of ourselves as individuals and compare ourselves to others.

At an earlier age, I was apparently a very slow to speak and barely said a word until one day when I asked, in perfect English, what we were having for tea that evening?

So nothing really that would have led anyone to suspect anything like autism but suggestive.

It does make me wonder if the pathogen (assuming there is one) was present at a very early age but isn't expressed as full ME/CFS until triggered by something else?

 

[Athene]

Just to add my experience,
I never had any clothes aversions or any of these symptoms as a child. No allergies, no sensory issues, really normal.
It all started when I got this illness in my late teens.

However I do have a significant number of relatives with these issues, generally at the very mild end of the spectrum - Aspergers/ADHD hyperactivity. I wonder if this is the genetic factor to the illness, and XMRV pulls the trigger?

I think there has to be some explanation of why my husband has no illness after 6 years of intimate contact if XMRV (assuming I have it) it a contagious virus.

OK, I know I'm waffling off the subject and we're supposed to be having a constructive discussion about Marco's underpants conundrum. Sorry.

 

[Marco]

OK, I know I'm waffling off the subject and we're supposed to be having a constructive discussion about Marco's underpants conundrum. Sorry.

Perhaps the underpants are just the tip of the iceberg?