I am the Princess and the Pea

Welcome to the club!! I have long been hypersensitive to touch and smell, to the point where every single tag must be removed before I can wear or use something. There are certain materials that I know I would not be able to wear. A lot of my friends are "artsy fartsy" and very eclectic so there's always a sense of mystery about them - hidden secrets I must know.

Good luck with this problem - I hope you're able to work it out!

hugs,
Pam

 

 

I had to jump in on this one.  Donna I am the same way with socks, I learned a long time ago, (actually way before fibro took up residence... hmm) to make sure I put them on just right, or I would be taking a shoe off to fix it.  Two of my kids are the same way with socks, so I wonder if this one is something nonfibromites can have. 

Same thing with anything I lean against, plus whatever I wear to bed always has to be nice and smooth, no bunching up can be tolerated, and absolutely no teeny, tiny crumbs. So  Mrs_Mike your not alone, lol, in fact I have a feeling many more here can relate to being The Princess and the Pea!   Gee whiz, if we get to be a princess, can't we at least choose what kind of princess we want to be?!

 

Another one, and I'm not sure if anyone else can relate, but sometimes my DH falls asleep with his head touching mine, it is only the sleightest of pressure, but it really hurts.

 

Different fabrics do not seem to bother me, though I know they do with many others with fibro, the thing I can't tolerate is for any of my clothing to be too tight, especially around my arms.

 

Ahhh the mysteries of fibro.

I hope n pray everyone truly has a low pain day. 

Yes, all of the above.  A grain of sand in my shoe will feel like a sharp stone and I am a tag cutter, too.  Fabrics have to be totally soft.  When I was growing up, wool slacks were the "thing".  OMG, I thought I was going to lose my mind!  When they came out with cotton/polyester blend fabrics, I thought that was the very best invention!  I have to smooth clothing, sheets, etc, too.  Yes, we do have a Princess and the Pea Club....and also the Snap, Crackle, and Pop Club too!  Well, at least we have each other!

 

Sherrine

Count me in. I always look dumpy because everything I wear has to be loose and cottony - and pretty much no jewelry, at least none that touches my skin.

Even when I could tolerate my husband's snoring, I could never sleep hugging - hurts to have my body in any position except a fetal one. I'm sure I'm not the only one here. Now we say goodnight and I go down the hall to my cold room and electric blanket... (sigh) ... one of the many joys of fibro.

Debbie

i have been joking about turning into the princess and the pea for years, so when i saw this first i thought oh good, i'm not alone. then i thought oh geeze, someone else has the same problem. my skin is so darned sensitive even a tiny rough thread in the seam of a shirt can leave a raw spot within five minutes. trying to find clothes and even sheets that won't hurt my skin is hard, not to mention costly. and if my clothes make me feel like my skin can't "breathe" i practically crawl out of my skin. it's crazy.

everyone who has this problem totally has my sympathy!

Yep, me too! There are so many 'things' that I can't stand to touch my skin, it is just easier to name the things I can touch.

When I was a baby, I had been given a wool car blanket. My mother used it on me once. I had such a rash from this touching my face. My mother had to use Dreft for washing my baby clothes, I broke out in a rash from Ivory Snow. I can't stand anything tight up around my neck. Tags are to be removed, I also like the tees w/o the tag. Great Idea!! Wrinkles are to be taken care immediately, if not sooner. I can't use regular sheets or pillow cases on my bed. I only use flannel sheets/pcs, otherwise it 'rubs' my ears, legs, arms, etc to the point of being painful. If I can get to sleep, it wakes me up and that is it for the night.

I can't wear a bra at all, the pain and burning on my shoulders, back, skin just under the breast will reduce me to tears. I can't wear regular shoes, only sneakers and I have to wear socks w/ them. The socks have to be soft and even w/ that it feels like I am suffocating while wearing the stupid socks. I can't wait to take them off when I get into my house. I can't stand going barefoot. It used to just be that anything I would step on would hurt my feet, now in addition, my balance is horrible. I need the support of the shoes.

I rarely buy clothes, but when I do I have to touch things all over to be sure I can tolerate them. My DH loves wool clothes, I explained how I don't 'do' wool and would not go near him if he wore wool. He got rid of all his wool sweaters and coats. I felt badly, but it is like anyone elses allergies - I can't be near it, it destroys my skin.

I was a teacher in my 'former' life. I worked w/ children w/ Sp Needs. I had 1 boy in particular who had a problem w/ textures of food, clothing, just about everything. His mother would dress him in tee shirts during the warmer weather. He couldn't focus on anything due to the tags on the shirts. We weren't allowed to cut anything on a child's clothing, so I had to take the shirt off and put it on inside out to stop this from bothering him. I wrote a note to his mother that day and she took ALL his tags out of his clothes. She didn't realize the tags were a problem. I told her I had the same problem w/ the tags.

I have been given some beautiful watches in my life, I NEED to know the right time. lol But each of these 'good' watches die on my wrist. I have resorted to buying cheap watches and they do last. I used to wear my rings, watch, necklaces, earrings. I can't wear earrings, my ears burn, swell up and hurt like crazy. Necklaces irritate my neck and I can't see to connect them, anyway.    I only wear my watch and my wedding ring IF I am leaving the house. They irritate my skin when I'm in the house and heaven forbid stick my hands into any mess.

Donna, I'm right there w/ you. I, too, believe this DD is progressive.

I may have forgotten one or more of the things that 'bother' me, but I think you get the point.

God bless.  Alice. 

Irish Babe said...
Yep, me too! There are so many 'things' that I can't stand to touch my skin, it is just easier to name the things I can touch.
God bless. Alice.

golly, so much of this could be me talking! i'm always so sorry when i hear about how much people suffer with this blasted disease (and the other diseases or problems that come along with it) but at the same time i think i'd feel as if i was crazy if i couldn't relate to what others experience. i do believe it's progressive, and i'm sure it's genetic because both my mother and maternal grandmother had it. my mother received good medical care based on the assumption that she was suffering from exhaustion, but my poor grandmother suffered terribly, easily as much at the hands of her drs and most of her family as from the disease itself. most of us unfortunately know what it's like to have our suffering written off as hysteria or mental illness or whatever; i can't think what it would be like to have no one at all to talk to who would understand.

i have never been able tolerate wool, even at my most healthy, and i too must feel a garment before i even think of trying it on. i rarely buy new because used clothing are usually much softer, and i can't put anything on my feet without socks first because the texture inside all but the very softest of brand new slippers will drive me crazy.

that and my feet are always cold, even in the middle of summer. (does anyone else have really bad circulation in their feet or lower legs?)

bras are agony, though i have at last found a kind of undergarment that i can tolerate if it's fairly loose ... those little sport-bra/cami combination things that i don't know what they're called but even then, not always. collars don't come anywhere near my neck without me climbing the walls or sometimes even bursting into tears, which is realllllllly embarrassing, and heaven help me if my waistband is snug or my jeans shrink in the wash. i spent years shaking my head over the baggy jeans the young boys were wearing and now i see myself doing nearly the same thing and oh my goodness, getting into a vehicle is a performance with me trying to discretely adjust the seams and waistband of my jeans so it's not hurting me anywhere. also when it comes to vehicles (i'm no longer able to drive) i often get worried looks from people because i can't stand having the part of the seatbelt that goes across the chest anywhere near my face and usually end up tucking it under my arm.

it just does on and on, and the older i get the worse it gets. an older person's skin being more delicate anyway just isn't helping. i think i'm quite an easy-going person, and i know most of my life people have said so, but some days i feel like i've undergone a personality transplant because these things can make so cross and cranky.

my heart goes out to people who can't tolerate so much as a wrinkle. some bother me, but not the smaller ones, those i can tolerate OK. textures can drive me nuts, however. i love good quality cotton or linen sheets but on the rare occasions when i do splurge, the first thing i have to do is wash whatever i've gotten several times til they lose that "new" feel (crisp and rough). i used to love a rough towel after my bath, but now it just hurts too much.

speaking of baths, does anyone have trouble with really sore skin after a bath? especially in winter i have to really limit even a quick shower, because my skin gets all sore and prickly. i've tried all kinds of lotions, thinking it was dry skin, and sometimes i do have dry skin, but lotions don't do anything to help at all.

LOL! i could go on for hours, so maybe i should just stop here for now? i have to laugh at these things that happen to me or i'd go nuts, but it sure feels great to be able to vent to people who understand what it's like.

bless

sami

My husband calls me his princess in the pea lol. I cant stand the seems in clothes specialy if i lay down , the sheets have to be smoothed befor i laydown, i even ware my socks inside out the are comfier that way to me lol ..

 

Sami, no your not alone, my feet are always cold too. Its weird because I can have on warm fuzzy socks for hours but my feet still feel really cold. I guess it must be lousy circulation.

I also hate the feel of the seatbelt strap in the car in the summer when I wear sleeveless tops, or tops that are low enough that even if a tiny bit of the strap touches me it feels like sand paper rubbing me. I have to keep trying to move it off, and it's frustrating because it just slides back again.

Hey since were all princesses how come we can't just lounge around in our PJs all day every day?  lol       Now that I could get use to.  I guess our families wouldn't be too thrilled, especially our DHs.   Oh well, at least it's nice to dream.

Mrs_Mike said...
WOW I am kinda glad that so many can relate to me. Though I don't wish this on anyone. My husband, daughter and I played musical beds last night. I NEVER buy T-shirts with tags anymore. The sheets that best agree with me are 400 thread count egyptian cotton *rolls eyes*. I've tried the cheap-0 200 thread count cotton/poly blend and they feel like sand paper. I've tried 1000 thread count egyptian cotton and that just makes my skin crawl. I feel bad for my husband nearly always having to look at me wearing the same terry cloth sweat suits. They sure are comfy!! I might as well be wearing my jammies!! Hugs to all princesses!!

i know what you mean about other people being able to relate. i spend a lot of time wishing no one had to live with this stuff, but since there's a lot of us, it's great that we can at least connect and talk with each other. in the old days that would never have happened, and i hate to think how it would have been like to feel totally alone and as if maybe they were just crazy like everyone was telling them

where do you find t-shirts without tags? i've never seen those. then again, i do most of my "shopping" for clothes at a recycle place or at 2nd hand stores where i can usually find clothes that have been worn and washed so many times in a lot of cases the tags have all but fallen off. in other cases, i spend a lot of time removing tags, though even then it's not enough because there's still the seam

my favourite outfit for at home is either my super-soft flannel jammies ... if someone stops by i tell them i'm having a jammie day ... or a pair of those flannel men's pj bottoms with a t-shirt and a cardie over that i can take off or put when my body jumps back and forth between too warm to too cold (sigh), though i do have some super-comfy old sweats and a couple of really soft old sweaters that i can wear when it's a bit extra-chilly.

having to do shopping or errands is a wardrobe nightmare. i have one pair of jeans that are tolerable, and a couple of tops that aren't too bad, but of course at my age i have to wear something underneath so i have a huge collection of cami-bras and cotton sport bras (the pull-on kind). depending on my weight (even a pound or two can make a difference!) i use one or another of them when i absolutely have to because even the least uncomfortable of them makes me feel bruised and sore all over. i see them a lot in 2nd hand stores so if they look like they might fit, i grab them. money's tight for anyone on disability, but i figure a couple of dollars on "foundation garments" that don't have me in tears from pain is a good investment.

but it gets worse from there. even brand new socks can have a single tiny rough fibre which can create a raw patch within half an hour, and sometimes i'm not able to wash my comfy tops in time and have to fall back on the least uncomfortable of my other tops (bearable, but not for long). as for coats, oh don't let me get started! LOL! i love living in the north, i love winter (from my window), but i hate when i have to drag out the winter coat. there's nothing like a cold zipper tap rubbing my cheek to make me crazy. i'm a really easy-going person, but anyone who sees me when i'm about ready to climb the walls because of a cold zipper tab would never know it.

that and the fact that even a breath of cold air on my face will make it burn for days. a couple of years ago someone asked me if i ski. when i got through laughing ...

well, i could go on forever, and i really just started this as a kind of "i know what you mean" post (blush)

i must say your story of the musical beds made me LOL, though with total sympathy. i think a person has to be able to laugh at all the stuff this disease throws at them or go crazy. i have a lot of stories, and unfortunately sometimes i forget and tell them to people who are healthy and think i'm exaggerating about how sick i am, but whatever. people who know what it's like understand what i'm saying and why i'm saying it the way i do.

LOL! i don't think i should try to write anything remotely intelligent this early in the day (early being any time before 10 am and "late" being any time after 11 am )

one thing i'm wondering is does everyone experience the same level of sensitivity all the time? reason i ask is that there are times when things don't hurt or irritate nearly as much as others. with me a lot of it seems to be seasonal, though that's not a hard and fast rule either, and sometimes, for no reason i can think of, i have a few days where one of my less comfortable pieces of clothing doesnt bother me.

how weird is that? (not that i'm complaining!)

YEP!! What Shirly said, newer T's usually don't have tags in them. I just picked some SUPER SOFT, pre-worn out (haha) T's at Old Navy (Maybe that's why they call it "Old?"). They were on the clearence rack for $1.75. I LOVE to find bargains. But I also love shopping at goodwill, salvation army, etc. Especially when I travel with my husband, it's neat to see the different styles in different towns.

And I'd have to admit there are days where seams, tags, wrinkles don't bother me too darn much. But that has to be a day when the stars are aligned, some planet crosses some moon's path (just trying to sound like i know what I am talking about) and there has to be a full eclipse. OK, slight exaggeration but you get the picture. actually, today is turning out to be one of those days. After I got over not being able to sleep last night, I started to feel pretty good. and considering it's a droopy cold mess outside, I feel GREAT today!

And I definitely chuckled at the "10am" early thing. Holy cow I have changed since this dreaded disease got me. I used to be such a morning person. And in a way I still am. My hubby brings me my coffee at 6 something and it takes me till darn near 10am to make myself look presentable. I used to be able to whip myself into shape in 45 minutes flat from bed to walking out the door including makeup, curled hair, breakfast, etc. Oh to reminise about the good old days.

I wish I could be out and about but it's just too yucky out today. I'll just have to catch up on my posts !

hisfaithful1 said...
Sami, no your not alone, my feet are always cold too. Its weird because I can have on warm fuzzy socks for hours but my feet still feel really cold. I guess it must be lousy circulation.

I also hate the feel of the seatbelt strap in the car in the summer when I wear sleeveless tops, or tops that are low enough that even if a tiny bit of the strap touches me it feels like sand paper rubbing me. I have to keep trying to move it off, and it's frustrating because it just slides back again.

Hey since were all princesses how come we can't just lounge around in our PJs all day every day? lol [img]/community/emoticons/smurf.gif[/img] Now that I could get use to. I guess our families wouldn't be too thrilled, especially our DHs. Oh well, at least it's nice to dream.

hi. i'm sorry i somehow missed this one before.

i spend a lot of time trying to figure out why my feet are always so darned cold, and i think it's partly low blood volume and party due to circulation damage from getting a bad case of frostbite when i was really young. i think that's part of it because my feet were feeling cold since before i got sick, but it's gotten much worse since then. i usually wear socks even in summer, though if it's really nice out, i'll go sit in the shade and stick my feet out. it feels sooooooooooo good when that warm sun thaws them out a bit

i used to hate having to wear socks (i'm the original barefoot kid; the soles of my feet were like leather and i didn't put on a pair of shoes except for school or when there was snow on the ground), but now i'm practically obsessed. the time i spend choosing a pair of socks is just insane and i'm sure people must think i'm nuts

i have found a few things over time that can help, though most require a bit of extra effort or get a little pricey:

* foot warmer inserts - "patches" about the size of my palm with adhesive that you can put inside a pair of shoes or slippers. i don't know what they're made of, but it's something that starts warming up on exposure to air. sometimes they start feeling a bit tooooo warm, but when that happens i just pull my foot partway out for a bit. they last up to six hours, depending on what type of footwear you have on. i use these sparingly as they'd get pretty costly using them every day. i should add that they're kind of uncomfortable to walk on because even though they're quite thin, i feel feel them, so i tend to use them only when i know i'm going to be sitting a lot (e.g. watching tv). in winter especially i wear at least three layers of socks, so if i have to do something that's not going to take a lot of time, i just take off my slippers, go do whatever, then put them back on when i sit down again.

* "magic bags" - those bags of rice or grain that you can throw in the microwave. i have a big square one that i often heat up and will put under my feet when i'm sitting at my computer (like i am now) or slip into the foot of my bed. there's been nights where my feet were so cold they hurt bad enough i literally couldn't get to sleep, so that home-made magic bag is a godsend.

* hot water - i run about 4 inches of hot water in my bathtub, grab a book, and just sit for as long as i can on the side of my tub and soak my feet. it can take literally hours to get my feet to where i can feel them with my hands and not feel cold coming from deep inside, but sometimes the super-hot water soak reaches the really deep cold.

* good old-fashioned hot water bottle - not my first choice because they cool off so fast and are a pain to refill, but great when i need a bit more warmth.

i'm also saving up for a pair of slippers i saw with gel inserts which can be warmed up in the microwave. just thinking about them it feels like heaven. i have to save up because they're insanely expensive, but i think they'll be a good investment IF the inserts hold up. (note to self: find out about inserts)

you give a perfect description of how those seatbelts feel. also, i've always had problems with anything near my neck, and some of those seatbelts are set up in such a way that i feel i'm being strangled. i think my height distrubution can cause that second problem. being really long in the leg and short in the torso makes me "short" when i sit in most cars, so it's almost like a kid wearing an adult-sized seatbelt.

golly, whatever would i do with my time if i wasn't busy trying to figure out how to solve all the crazy little problems that most people never even think of

i'm dx'd as "severely" disabled (due to combo of health conditions) so i can get away with spending a day or several days in my jammies; changing out of them into day clothes and then back into them for bed is often more than i can manage on top of other things i need to do. because i live alone (my kids are all grown, and hubby split when i became inconvenient) i need to spend a lot of time "resting up" for the next time i have to go shopping, run errands, see the dr (grrr, don't let me get started on my GP!) or absolutely can't put off a household chore for another minute. this means i'm spending a lot of time sitting around or lying down, which at least is better than bedridden, which i was for a couple of years when all this stuff landed on me with both feet, but it's hard to get comfortable and even harder to stay comfortable, and my jammies are the most comfortable clothing i own, so i wear them a lot. there's hardly ever anyone who's going to see it anyway, and those who do sometimes look a bit suprised but laugh when i tell them i'm "having a jammie day". (i know some people just think i'm lazy or a hypocondriac, but that's their problem so long as they don't try to make it mine )

LOL! what a life, eh?

but the bright side is that we're Princesses. that makes us royalty, which means we can give ourselves "the royal treatment" ... um, right?

bless

sami