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Adrienne Dellwo

Odd Reactions to Textures in Fibromyalgia & Chronic Fatigue Syndrome

By March 8, 2013

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Blog Classic: March 12, 2012

The hypersensitivity of fibromyalgia and chronic fatigue syndrome has an impact on all of our senses. A recent Readers Respond comment mentioned an unusual tactile response that I thought was worth bringing up:

"The weirdest pain by far is, and absolutely no one believes me when I tell them this, wet grass. That's right, wet grass. Touching it esp. in the morning, or even walking through it w/shoes on causes an all-over body pain." -mnt

While I haven't had a problem with wet grass, I can totally understand it as a textural sensitivity. Similar things that aggravate my nerves and can cause an upswing in symptoms include elastic, nylon, steel wool and these microfiber dish cloths I made the mistake of buying a few years ago. They seriously give me the willies and set my whole system on edge. When I shop for clothes, I do it by feel almost as much as by sight.

When something that shouldn't cause pain does, the medical term for it is allodynia. A lot of us have a form called tactile allodynia, which is pain from touch. That's why it hurts just to have clothing against your skin. When the pain comes from movement, such as walking across wet grass or running your fingertips along fabric, it's called mechanical allodynia.

You can learn more about allodynia and other forms of pain in:

What weird textures or tactile things set off your symptoms? How as it impacted your life? Leave your comments below!

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Comments
March 12, 2012 at 8:06 am
(1) Mia says:

As usual something that I never gave much thought of or related to fibro comes to light and makes me realize how long I’ve actually had fibro. I don’t have the problem with wet grass, that I know of. (can’t remember the last time I had my bare feet in wet grass.) But I have the issue with micro-fibro cloths and have other tactile problems that are odd. I can’t walk on concrete anymore…it feels like the entire surface is sharp. I can’t wear nylon socks ….. they feel prickly, I don’t like wearing long sleeves …..they rub the hair on my forearms and it hurts. I could go on and on.

March 12, 2012 at 8:38 am
(2) Brenda says:

The softer parts of my body can be extremely tender to touch. Underneath my arms and over my thumbs really hurt if you touch or rub them. A blood pressure cuff is almost too painful to use now and sometimes I holler and beg them to stop.

March 12, 2012 at 10:17 am
(3) Heather says:

I’m like Brenda,parts of my body are so tender, under my arms and my neck and chest. I cant wear any shirt that rubs my neck. Wearing jeans bothers me, the texture is weird. My skin often feels sunburnt..if I could only go around naked, life would be good lol

March 12, 2012 at 10:35 am
(4) Stephanie says:

If my bath towels are not soft the feel from them causes extreme pain. I even can lay in bed and see the towel touching my body and it causes me to have panic attacks. I hate it.

March 12, 2012 at 11:05 am
(5) Tamzen Benham says:

The prevelence for fleece material to be made into all sorts of things make my skin howl in pain. So many things that would be usefuil to me like jackets, water bottle covers, cuddlys are out of the question for me.

March 12, 2012 at 11:51 am
(6) Phoebe S. says:

I am a long-time ME/CFS patient and have never had “odd reactions to textures”, nor have I heard of that as being a symptom of ME/CFS. Please don’t generalize your FM symptoms to ME/CFS patients.

March 12, 2012 at 12:00 pm
(7) Gini McGowan says:

many and most things hurt, fabric interlock ,my pj’s used to be made well [I used to buy fabric by 100 metres as I was a sewer , so I know it’s gone bad! it now pills the pilling hurts so much I can’t sleep, blood preasure cuff! yep,Mia , bp goes through the roof and nurses can be so rude, my doc understands and knows so I am very lucky. hard if see other doctors… wind hurts , cold hurts, rain hurts if touches skin . oh gee everything hurts!!! need something to help .atm….

March 12, 2012 at 12:05 pm
(8) Christy says:

My husband thinks I am crazy but there are lots of times when I wear a synthetic long johns to bed cuz of the texture of our blanket or sheets. I have to have a smooth surface. I can not remember the name of the material but need to get a top made of it. I have to have sleeves that do not touch my inner elbow too, t-shirt sleeves touch there and I roll them up. It is amazing how ubber sensitive we can be.

March 12, 2012 at 12:07 pm
(9) Tammy Garrison says:

Recently I have an aversion to the shoulder straps of my bathing suit, the dangling ear phones to my iPhone or Computer, and anything entering my mouth. I’m developing a hypersensitive gag reflex and knots in my stomach when I eat. I can’t stand to brush my teeth anymore. I have to hurry up and do it and try not to think about it while I am doing it. It seems that most light touches to my skin “burn” and deeper touches “massage.” I wear soft sports bras and even those straps, especially when the bra is new(ish) really pull on my shoulders and hurt.

March 12, 2012 at 12:07 pm
(10) Kimberly Black says:

I find that I need very, very soft fabrics, otherwise I feel like I’m wearing super rough grit sand paper. I also have issues with grass. It feels like it burns my skin. Fibro is a life of mysteries for sure!

March 12, 2012 at 12:09 pm
(11) W. Christiansen says:

Wow…I thought it was me…I react to certain clothes as well…I hate anything hanging from my neck…Hair bands and barrets can make my scalp ache. Rubber floor matts make my feet feel like their on fire and certain car seat materials can set me off as well. I seldom wear socks or stockings.

March 12, 2012 at 12:10 pm
(12) Cheryl Baker says:

Not only do I have the synsitivity to different things, like bath puffs, I also have problems in the shower with the water beating down on me. My shower head has a setting where it comes out in a soft spray, which is the only way I can take it. I also have major synsitivity with sounds and movements. Repetitive sounds, especially the bass in music is terrible and my son moves his leg up and down rapidly, which also causes me problems!! I thought I was the only one!!!

March 12, 2012 at 12:15 pm
(13) toni cox says:

I wear the oldest, cotteney-est, label-less, softest, overwashed clothes I can find over and over. I also search out underclothes that have few or small seams and no elastic. My weirdest allodynia is rough wood, like popsicle sticks or chop sticks on my tongue and lips. Sends me screetching! It is so hard to explain to people that clothes hurt. Even the spray from the shower hurts, so I bathe. **sigh**

March 12, 2012 at 12:15 pm
(14) Donna Windheim says:

I buy non synthetic clothes- can’t always get all cotton but it must be predominantly cotton- wool makes me crazy, and anything metallic or with too much texture is definitely out of the question! How many of you cut out your tags in your clothes????? -

March 12, 2012 at 12:16 pm
(15) Kathy says:

I recently went two weeks without any medications due to a paperwork glitch on behalf of social security. I take Cymbalta 90mg and Toprol 50mg for fibromyalgia and anxiety respectively. Now I am back on the meds, I remember how sensitive I was. The pain under my arms, the pain in my chest and my neck is intolerable. My sensitivity comes from the shower head. I dread getting into the shower because of the pain it causes me when the water first touches me. Once I get use to it, I am fine, but I will agonize over having to get into the shower because of the sensitivity to the water stream hitting me. Of course the meds do not cure the fibro, but I have been able to manage my days better because of them. At 61, I have been diagnosed for 20 years now and each day becomes a new experience with this syndrome.

March 12, 2012 at 12:16 pm
(16) kathy says:

The worst for me is taking a shower. The water feels like a million needles are poking me. If the water is even slightly to warm it feels like my skin is burning. And if my towels are not soft enough it feels like im rubbing my skin off.

March 12, 2012 at 12:18 pm
(17) Jane says:

Brown paper bags…the absolute worst. If the paper touches my fingertips or fingernails, It goes all over me; wax paper, corduroy, any kind of wool like texture, even if it is soft.

March 12, 2012 at 12:39 pm
(18) Christi Druilhet says:

My sensitivities come when my hormones are changing. While I was pregnant, there were times I had to stay home because I couldn’t stand to put clothes on. The only thing that didn’t hurt was smooth rayon. Before my period, my forearms are super sensitive to touch. In fact, now that I’m writing this, I’m realizing that my outer thighs have felt, lately, like someone has been beating them with a fly swatter. Now I am wondering what is coming.

March 12, 2012 at 12:59 pm
(19) lisa says:

Been having these symptoms for many years. Ceiling fans or any fans for that matter hurt. Aluminum foil and too many to list. Nice to see I’m not losing it.

March 12, 2012 at 1:25 pm
(20) Laura says:

I have many of these sensitivities as well….but the worst for me is that I can’t wear jewelry anymore. My skin will burn and hurt every time I wear my rings, earrings, necklace, etc., so I only wear my wedding ring now when I go out places then take it off as soon as I get home.

March 12, 2012 at 1:26 pm
(21) Leah says:

I can’t touch, smell, or look at steel wool. I can’t touch some silverware. It has to be very slick and tasteless for me to use. I can’t stand on towels.The fibers feel like thousands of hot needles.

March 12, 2012 at 1:36 pm
(22) BreatheEasy says:

I don’t have Fibro, I have ME/CFS, and I have some of these tactile sensitivities. I have to wear my underwear, and some tops, inside-out because the seams are painful. Most tags must be removed from clothing, and any raised stitching is out (like around the inside waist of jeans (which are generally too rough anyway), or decorative embroidery that is even mildly raised.) Mostly only the softest, natural fibers are tolerable.

The pressure of even the most super-light eyeglasses is insane on my encephalitic head. I have been reduced to putting little rolls of bubble wrap around the arms of the glasses (this only slightly helps, and wow do I look insane) and sometimes even the weight –which is nominal, these are incredibly light glasses–against my nose is too much.

I can’t stand crew-neck anything, or jewelery of any kind, am so grateful for low-waist pants because anything around my waist is impossible.
Often my own hairs in their follicles are painful.

March 12, 2012 at 2:10 pm
(23) Paula-que says:

I remember being a child and hating fuzzy blankets, that is where it started. Then, anything that had pill like fuzzies on it had to go, now that I am in full blown fibro, I can’t stand to wear blue jeans, it hurts so bad to wear a bra, if a shirt and shorts or pants aren’t cotton, I can’t wear them, I cannot wear my jewelry anymore either, it just aggravates me too much, I can’t wear regular socks, only the super soft kind, and tennis shoes are out of the question, so it is flip flops or crocs barefoot all year long. I found out last summer that grass hurts, and it doesn’t have to be wet, it is like paper cuts! If my husband touches me pretty much anywhere on my skin, especially light touches, it drives me nuts, feels like I have a sunburn. I, thank heaven, don’t have a problem with my glasses yet, but lordy, when I do, look out! I have yet to find a comfortable couch or chair to sit in to watch television without covering it with a sheet first, and the sheets on my bed are the highest thread count possible, or I cannot sleep.

March 12, 2012 at 2:53 pm
(24) Eva says:

I have had a problem with ANYTHING crew neck for years, it feels like it is choking me. Now I can’t stand to wear a bra for more than 6 or 7 hours, it’s like being having a tourniquet around me. And around my waist is another spot, after a while it’s like being in a corset.

I guess from reading others comments that my issues are not as bad as many. But I swear there are days when I would join a naturalist colony just to not have to wear clothes.

Some days even my hair hurts to touch much less brush. This condition is so frustrating.

March 12, 2012 at 4:32 pm
(25) Penelope says:

@Phoebe – not all of us with CFS have exactly the same symptoms.

BreathEasy appears to have symptoms similar to my own and I am another CFS, not Fibro, person. People laugh because whenever I am in semi-private I undo my bra, take off my shoes, stop wearing my glasses… If my bedding has a wrinkle in it, it hurts. My clothes are all soft, stretch fabrics. My shoes are usually crocs (new, black ones for formal wear). Temperatures have to be “just right”.

Hypersensitivities all add to the total chronic pain load that already exists due to headache, muscle cramps, joint pain, etc. What I rarely experience is random pain, so I doubt I have a double diagnosis of CFS and Fibro.

March 12, 2012 at 4:44 pm
(26) Val says:

I can only wear knit shirts, because they ‘give’ as you move…can’t stand cotton button up shirts (texture, feel on my skin…). Most bras are torture divices…I have thown so many nice ones out because I can’t stand them. I can’t sleep if my knees are touching, or arms touching…like the touch of my own ski is harsh…yikes!

March 12, 2012 at 5:36 pm
(27) Mary Amero says:

I can’t wear certain shoes, because they are too heavy on my feet. I can’t wear heavy clothing or like winter jackets because it is to heavy on my body. Certain jeans I can’t wear because of their buttons. Some socks I can’t wear because they hurt my toes.

March 12, 2012 at 5:55 pm
(28) Kellie says:

Cardboard and brown paper bags. Since childhood I haven’t been able to bear the feel of them.

Recently I was wearing a wrap on my knee to keep it warm and stable due to my arthritis. (I am getting shots for the arthritis). I was okay for a couple of days, as long as I took it off my evening. One day that ended. By mid day my skin was burning and the residual pain lasted for hours after it was removed. I can no longer wear it.

Elastic gives me a hard time. Certain socks hurt the bottoms of my feet. Hats and headbands are killers.

March 12, 2012 at 5:55 pm
(29) Terry says:

I FOUND MY FAMILY! It is SO wonderful to see I really am not crazy and there are people just like me! I know we are all suffering but thank you so much for your posts. They make me feel less odd. I have so many of the same problems with touch. Seams, jewlrey, ear rings, crew neck, jeans, heavy shoes, coats, can’t wear my hair in any style but down…no pony tails…hurts my hair to be up! Need to sleep with a soft pillow between my arms and one between my knees and ankles so they don’t touch. can’t walk barefoot, my showerhead is extra extra light spray, cannot touch microfiber or eat with stainless steel forks or spoons (can’t take them touching my tongue or lips) I could go on and on endlessly!

March 12, 2012 at 6:22 pm
(30) Jo says:

It seems I have always had a sensitivity to different fabrics, I remember my dear grandmother making me jumpers that I used get so distressed wearing I would rather be cold than wear them, I now live in the tropics where I don’t have to wear many clothes for most of the year, it helps. Most synthetic fibres cause me to be extremely uncomfortable, tags in clothing and even the thread used in seams aggravates me to the point I cannot wear the clothing. Some think I am a bit crazy, but I just can’t wear these things. Sleeves bother me a great deal and if I am having a flare up I can’t wear them. The type of sheets I sleep on is also important, they must be smooth and not itch me at all, I find 100% cotton sheets the best.

March 12, 2012 at 6:25 pm
(31) joann says:

I have problems with rough matieral, like wool and sweaters with that shinny thread in them that just hurt my skin to death. I have no problem with grass, it is mainly things around my feet that bug me: shoes, socks. It comes and goes!

March 12, 2012 at 6:46 pm
(32) Chris says:

Certain types of towels set me off. My daughter & husband say they”re very soft, but I’m NOT touching them!

March 12, 2012 at 6:51 pm
(33) Phoebe S. says:

@Penelope: The title of the article is “Odd reactions to textures”. How is this relevant to your eyeglasses, your shoes, your bra? And btw your symptoms do sound like fibromyalgia. CFS is a neuroimmune disease, FM is a pain disorder.

March 12, 2012 at 8:25 pm
(34) Adrienne Dellwo says:

Phoebe – actually, fibromyalgia is also classified as neuroimmune or neuro-endocrine-immune. The illnesses share much of the same neurological pathology.

And it’s true that not all of us have the same set of symptoms. What Penelope described isn’t a reaction to textures, but it is an aspect of allodynia. Tactile allodynia is what she described, while the problem with textures is mechanical allodynia. They’re both more common in fibromyalgia, but some people with ME/CFS report them a well. (Of course, it’s possible that they also have fibromyalgia and it’s just undiagnosed.)

March 12, 2012 at 8:49 pm
(35) Naomi says:

Yet again reading a Fybro TV post has made me feel less freakish, I’ve always been over sensitive to certian textures, can’t bear light stroking on my skin, it burns but scratch until it’s red then I can cope with light touch scratching seems to desensitise my skin.
I can’t bear my skin touching in bed. All my bedding is silky, I only wear silky nighties, any other style or fabrics make me feel strangled.
As soon as I read “feeling sunburnt” I totally understood.

The more I learn about FMA the more I realise that it’s responsible for so many of the things that have always made me feel a freak, it’s almost a year since I was diagnosed. I’m still coming to terms with the fact that I am not a freak, I am not mental. I am actually ill AND it’s OK that I can’t…
Just “snap out of it” because my problems cause inconvenience to others.
Just wake up one day and decide that I’m going to be well.

I do not choose to be ill.
I do not like being ill.
It’s not my fault that I am ill.
I do everything I can do to try to help myself, the fact that I continue to try to help myself should never be belittled.

I’m slowly realising that although, to “healthy” people, we apear weak; we are a very long way from actually being weak. How can we be weak? The fact that we are all still surviving each day shows just how strong we all really are. How many “healthy” people do any of us know that could live feeling like they were having a really bad flu day every single day and still function?

I put my hands together for all spoonies who manage to survive each day and I pass my hands down to all spoonies who need a hand back up when a really bad day brings them to their knees.

I am really grateful to everyone who posts on pages like this, for me it has given me, for the first time in my life; the feeling that I am not the only one and I can not begin to say how much difference that makes.

.X.Nay.X.

March 12, 2012 at 9:11 pm
(36) Elle says:

The work trousers I wore right before my crash set off the pain in my legs. I’ve no idea what they’re made of though.

March 13, 2012 at 6:38 am
(37) Sher says:

Hello sister Terry and all the rest of you! Even doctors have looked at me like I had horns when I mention how awful my skin feels. I sat crying all one night because my own hair touching my skin hurt so much. Now I keep it very short, None of fibro is fun but for me, not being able to hug or be hugged by family is the worst. That sun-burnt feeling makes it impossible. The hand of a person touching me feels like a hot poker. Cold water or air on my burning skin makes me shiver uncontrollably and the pain is excruciating. Those micro-fibre things are torture. I was diagnosed two years ago but I have had many of these symptoms since I was a kid and that was a very long time ago. Reading all of your posts causes mixed feelings. It is nice to know that I’m not totally crazy but knowing that so many are in such pain makes me sad. I would not wish this on my worst enemy.

March 13, 2012 at 8:05 am
(38) Shawna says:

I’m not crazy! Yay! Jeans, jewelry, bras are impossible. I wear diabetic socks because regular socks are too tight. Must wear cotton clothes. Hanes underwear with the elastics fully covered, inside out so the seams don’t get me. Croc shoes as much as possible. Down or Thinsulate coats, everything else is too heavy and pulls on my shoulders. High thread count cotton sheets. Very soft materials, nothing rough.
I have to fan my hair out above my head on the pillow at night, can’t stand it touching my neck when I’m laying down.
I thought it was soap sensitivities so I switched everything over to pure, fragrance-free, etc. and it made no difference.
Amazing…

March 13, 2012 at 8:09 am
(39) Steph says:

I get the same problems with wet grass, even slightly cold grass, the pain can be extreme – just thought I was over-reacting or imagining it! So pleased to know I’m not alone

March 13, 2012 at 9:24 am
(40) Amanda says:

I have suffered for nearly 2 years now . i still feel that ppl don’t believe me. I try very hard to keep things normal for my children but,every day just gets harder . I feel guilty because of it,feel i have to constantly apologise for myself . :-C

March 14, 2012 at 4:45 am
(41) ab says:

I can relate to almost all of these posts and am also glad “I’m not alone!”

I’m wondering if Adrienne or anyone else knows about the connection (if any) between this and general sensory processing issues. So much of this seems similar to what my daughter had Occupational Therapy for when she was young (for Disorder of Sensory Integration, or whatever the term is now).

March 14, 2012 at 4:56 pm
(42) Doreen says:

It’s so nice to know I’m not crazy and I’m not alone! I have been sensitive to certain materials all my life such as wool, metallic threads, polyester, and others. I have worn my socks inside out since I was a child (I’m now 51). I can’t stand anything on my feet other than crocs or flip flops, and if I wear socks (only in winter) I can’t walk on the carpet with them on because it gives me the willies. Bras are torture devices. Seams in underwear and slacks make me want to strip naked no matter where I am. Elastic is a nightmare.

I also can’t stand crew neck, cowl neck, or turtle neck shirts. If I forget to cut out the tags I go out of my mind until I do. My clothes have to be as soft and as seamless as possible. I kept my hair long for years just so I could tie it back off my face because otherwise it would irritate me to death (I finally cut my hair super short).

All my life I have avoided massages because they are so painful. I had an uncle that used to love to stand behind people and rub their shoulders, but I used to have to tell him not to do it.

On top of all this, I have dermatographism which causes my skin to break out in hives when pressure is applied (ie, hanging a bag over my arm will leave an itchy welt in the shape of the bag handle).

I hope they find a cure for this crazy disease. It’s amazing how many aspects of our lives are affected by it.

March 16, 2012 at 8:08 pm
(43) Spookiesmom says:

I really perked up when someone mentioned sensory intergration disorder. My grandson has been dx’d with it. Is/can there be a connection to fibro? He is almost 7, his parents have been told he will need to repeat 1st grade. He gets OT,PT, and speech therpy from school.

March 16, 2012 at 8:53 pm
(44) JennyG says:

Finding clothes & shoes that don’t set my nerves screaming is a constant struggle. We’re traveling oversees for two weeks next month, and my biggest worry is what clothes I can take to stay comfortable (or tolerate, at the very least) days of sight-seeing. My sensitivities are usually turned “off” in the morning and get worse as the day progresses. They settle down after I come home from work, take my pain medicine, and begin to relax…

Here’s a different one– I went to an electric jazz concert a few nights ago, and I could feel the music in my nerve endings (not in a good way)! Tried to explain it to my hubby and felt crazy.

I take a ton of supplements & meds, but must recommend Savella for this particular symptom. It has made it possible for me to wear bras again– a good thing! ;)

March 16, 2012 at 10:28 pm
(45) Cabby says:

For many years I could barely stand a hug. I always thought that it was because the other person was being too rough.

Clothing wise, I only wear natural fibers, mostly cotton. I avoid cheaper wools because they drive me nuts with itching. If I wear wool type sweaters at all it is alpaca, cashmere or silk. They are all very expensive so I don’t own much. I also need high thread count sheets or it feels like my skin is being sanded.

I also avoid having any rubber touching my skin. It is hard to find bras and underwear that don’t have any but if it is covered I usually can tolerate it.

The good news, if you can call it that, is that I am on disability so can get away with no bra most of the time while I am at home. In the winter with bulkier clothing I can even avoid it in most situations when leaving home.

One good thing about falling into the senior citizen category is that you are anonymous out in the world so you can get away with these things. (((( :

March 18, 2012 at 7:19 pm
(46) Debby says:

Adrienne, I love you for the subjects you bring up. It helps us to know we are not weird. LOL. I remember my mother could not wait to take off her bra when she got home. Off came the bra and on went a soft, loose mumu or nighty. I did not understand 50 years ago, but I do now. And it seems the list of things that is uncomfortable, scratchy, and gets on my nerves grows the longer I have fibromyalgia and CFS. I prefer wearing soft cotton, have found a supportive wire-free bra, and I am uncomfortable on the 250 thread sheets that were what people used to use all the time. I have enjoyed the 600 thread sheets so much. Oh yes, I have to mention those awful tags they put in clothes–they drive me up the wall with their sharp little corners. I cut them out of my clothes. I find that my sensitivity is worse sometimes than others, mostly when I have a flare, but I am not entirely sure why it is not always bad.

March 20, 2012 at 11:24 pm
(47) Nicole says:

I find that I am more sensitive to light. I didn’t notice anybody else mention high heels. My shoes feel tighter than they used to. I always leave the lights off or low if necessary. I was surprised to see others mention paper bags. My scalp is more sensitive to high heat. I can’t wear the sports bra that crosses in the back. Good news: I tried the ahh bra(as seen on TV). It has made wearing a bra more bearable. I found it at Wal-Mart for $20.

March 21, 2012 at 12:59 am
(48) David, Yup, a GUY says:

I am a 54 yr old male. I see this is quite unusual for this forum. I understand, however, it is not rare that men can also be diagnosed with FMA. I was diagnosed about 7 years ago. I was working at the time and had a hard time getting along with others because loud noises and lights, made me feel awful. I tried to wear a tie but couldn’t. Wearing clothes, nice cotton shirts and chinos and slip-ons hurt. I resigned about six years ago because I couldn’t take it any more. I was a professional with a JD. My boss told me I was goldbricking and never believed anything was physically wrong with me. Even AFTER I was diagnosed.
About the time I was diagnosed I started staying home most of the time. Now I rarely leave the house. Sunshine hurts my eyes. I take all the tags off my clothes. I switched from briefs to boxers. All I wear is the Costco gray socks and boxers around the house. I feel like some kind of slovenly man, sweaty and not wanting to touch things. An awful picture comes to mind. Self-esteem suffers. My wife is a saint.
I can’t use the rough sheets because they hurt, but also can’t use the high thread count ones because they don’t breathe and make me sweat. I no longer control my body temp, the outside air and the fabric against my skin do that for me. Constantly on and off with flannel shirts. I can feel hairs out of place. Before I ever read about FMA I told my doctors I felt I have hypersensitive skin. Kaiser Docs. Nice people, the ones I go to, but they don’t seem to know what to do with me.
Sorry if I ranted a bit. I feel better reading about all of you.

March 21, 2012 at 1:27 am
(49) clubman says:

Asking questions are truly good thing if you are not understanding
anything entirely, except this piece of writing gives good understanding even.

March 22, 2012 at 3:37 am
(50) Alisha says:

I have to buy sheets by touch. I can’t stand anything but the softest of soft. Everything else, literally, feels like sand paper. Clothing has become soft t-shirts and soft, baggy pants. Socks have to be very soft as well. If my dogs aren’t washed frequently, I can’t stand the to touch their hair because it feels like wire. I can’t stand having my hair touch most of my skin. I usually wear it up, even though that often makes my head hurt, because it feels like needles stabbing me and it is too hot. I can’t touch ice, it hurts. There are just all sorts of weird things that have changed for me since I developed Fibro. It’s very frustrating.

March 23, 2012 at 5:55 pm
(51) Marian says:

I too have discomfort from a range of textures. In fact, no-one in my family can stand the feel of things like velvet, chenile or cotton wool. I also have difficulty sleeping if there are little bobbly bits on the sheets (or a crease or a crumb). It’s impossible for me to settle in flanelette sheets. The feel of socks on my feet makes me claustrophobic – not sure if this is the texture or the pressure. Some fabrics bring me out in welts around my neck. In fact, even thestretchy paper the hairdresser puts around my neck under the cape thingy has me pulling at it so that it doesn’t touch my skin. It’s helpful to know we aren’t alone with these strange symptoms. Not everyone has every symptom and not everyone experiences a sympton the same way. No wonder it is hard to understand for people who are looking form the outside in :)

March 23, 2012 at 9:11 pm
(52) Chris` says:

I have to have shaved legs – can’t STAND the feeling of little leg hairs against pants or against my legs when I sleep. I guess it could be worse – I always have shaved legs!

March 23, 2012 at 9:15 pm
(53) Shelly says:

Micro fiber cloths, absolutely! It feels rough and sticky at the same time!
And real fur, (not on a living animal). If I touch it, it hurts up my arm like little shocks!
Wind blowing my hair hurts my head and I usually get a headache.
Weird, strange things…I’ve gotten used to it.

March 24, 2012 at 9:54 am
(54) Kristi says:

When I was little and my mom would take me shopping for clothes, I would always pick out my clothes by touching them. Actually, it was a running joke in my family the way I would pick out my clothes. I’m 40 and I still pick my clothes out this way. My mom began to notice that I would complain about tags and seams. I also complained about hurting. She took me back and forth to the doctor for years. She was told to take me to a psychiatrist because I had “mental issues” My mom being the fighter she was refused and let the doctor know that if I said I was hurting then I WAS hurting. We found a new dr shortly after that but it still took years to be diagnosed or even believed.

Now, simple touch hurts. My husband is wonderful, but before he was educated on this illness , he would get aggravated because when he would touch me it would hurt. The smallest touch on the inside of my arms drive me nuts. Water hurts even getting into the pool hurts because it feels like pressure all over my body.

The worst thing I experience on a daily basis, other than the constant pain, is when I’m driving and the sunlight beats down thru the windshield…UGHHH…that makes me dizzy and nauseated. But it gets worse when I drive and go by a patch of trees and the sun shines thru so you get shade, sun, shade, sun. When I get home I am im in so much pain and so dizzy I have to lay down immediately. Then I have to deal with the sheets hurting. It never ends….

March 24, 2012 at 2:39 pm
(55) fibropainsme says:

The shower is the worst. I can never get a comfortable water temperature and the shower spray is always too strong. Drying off bothers me, as does my skin being wet or sweaty. Perspiration stings me immediately, and if I am not wearing cotton when I sweat, my skin burns. Around the house, it’s only soft socks and comfy, loose sweats. If I could wear my broken-in, soft snuggly blanket wrap everywhere, I would! I wish I could tolerate crisp shirts and blazers, with creased pants for work meetings, but I have to wear soft knits. Thankfully, I work from home, so 90% of the time I can wear whatever I want. It’s such a great feeling and relief to put on the comfy clothes that I know I can tolerate…gives me one less fibro side effect to deal with.

March 26, 2012 at 6:45 pm
(56) broncogrrl says:

certain earbuds for the cell phone or i-phone definitely make my ears hurt. I have found that Sony makes a wonderful little earbud that stays in the ear, it’s small and has great sound. The other wierdo thing that that causes me great pain is my c-pap mask. The sleep apnea doctor thinks I’m nuts because I’ve been thru every mask they have and they all cause my face, ears or nose to be extremely sore. I found one that works ok but every once in a while if I sleep wrong I’ll wake up feeling like somone pounded me in the nose with a hammer.

April 4, 2012 at 11:07 am
(57) Susan says:

Since becoming afflicated with firbromyalgia and chronic fatigue. I find I am getting more like my youngest son who has asberger’s syndrome. I had worked as a pharmacist previiously and now I find I want very expensive superior cotton pajamas to sleep in. I got a pair cheat (40 dollars at at discounter) and these have worn out. I admaired the pj’s in Gtumps cataloge which wer of this type of material but wher 140.00. My husband is a practical enginaeer and bought the similiar color at boscov;s for Christmas- These have polyster and the seams bother me.I told him I wanted the expi8nsive cotton ones and had to explain why- I am still wearing them and they are practically worn out. I was a pharmacist and had a very high income and never would justify paying so much money on clothes. It is ironic. I am fighting Cigna and trying to get disability. At the time I have the least money- I want the most expensive fabrice because how they feel against my skin.

April 4, 2012 at 11:07 am
(58) Susan says:

Since becoming afflicated with firbromyalgia and chronic fatigue. I find I am getting more like my youngest son who has asberger’s syndrome. I had worked as a pharmacist previiously and now I find I want very expensive superior cotton pajamas to sleep in. I got a pair cheat (40 dollars at at discounter) and these have worn out. I admaired the pj’s in Gtumps cataloge which wer of this type of material but wher 140.00. My husband is a practical enginaeer and bought the similiar color at boscov;s for Christmas- These have polyster and the seams bother me.I told him I wanted the expi8nsive cotton ones and had to explain why- I am still wearing them and they are practically worn out. I was a pharmacist and had a very high income and never would justify paying so much money on clothes. It is ironic. I am fighting Cigna and trying to get disability. At the time I have the least money- I want the most expensive fabrice because how they feel against my skin.

April 4, 2012 at 11:07 am
(59) Susan says:

Since becoming afflicated with firbromyalgia and chronic fatigue. I find I am getting more like my youngest son who has asberger’s syndrome. I had worked as a pharmacist previiously and now I find I want very expensive superior cotton pajamas to sleep in. I got a pair cheat (40 dollars at at discounter) and these have worn out. I admaired the pj’s in Gtumps cataloge which wer of this type of material but wher 140.00. My husband is a practical enginaeer and bought the similiar color at boscov;s for Christmas- These have polyster and the seams bother me.I told him I wanted the expi8nsive cotton ones and had to explain why- I am still wearing them and they are practically worn out. I was a pharmacist and had a very high income and never would justify paying so much money on clothes. It is ironic. I am fighting Cigna and trying to get disability. At the time I have the least money- I want the most expensive fabrice because how they feel against my skin.

September 25, 2012 at 12:51 am
(60) blueskies says:

It’s a relief to hear others have these problems. It’s now nearly 10 years since this burning skin pain (like sunburn) started and sensitivity to clothes, sheets, towels, touch began. I was controlling it in a big way with a special eliminating diet (which makes it very hard to eat healthy as the chemicals in natural foods I react to are salicylates — veges and fruits – amines and glutamates) has left me eating high fat and high sugar food for the most part.The same few foods every day, over and over. I’m now very overweight too, and I used to be slim when this started. When I deviate from the diet the burning skin kicks in and sensitivity to clothes etc. But in the last year or so I’ve been experiencing the burning skin and clothing problems and can’t pinpoint the reason (ie been sticking to the diet). I’m so tired of it. I have a form of dysautonomia — a dysfunction of the autonomic nervous system. Many people with this disorder seem to have fibromyalgia too, but no doc has ever suggested it to me. Food intolerances are one possible symptom of dysautonomia. Just wanted to write this here. I don’t mention it to my family anymore because they just roll there eyes. So it’s good to get it off my chest by writing it down here. I’m nearly 57 and have had these particular symptoms since I was 47. Medical opinion is that an adverse reaction (not allergic –although I’ve had those too, including anaphylaxis) to a medication bought this on. Thanks for reading.

January 18, 2013 at 11:12 pm
(61) Justin says:

Not sure if this is the right place. I guess if you know what I am talking about, please tell me. When I touch things like silk cloths, some fleece with my fingers or that mesh stuff that running pants are made of, it feels like it catches on my fingers. I have soft hands, but those things make me cringe. My wife thinks I am nuts.

January 19, 2013 at 10:22 pm
(62) Alyssa says:

I can’t wear chains on my wrists cause it feels like theyre pinching everywhere they touch. And if anything touches the inside of my elbow I can barely breathe as if something was on my chest, and my whole arm and throats itch. It drives me crazy. Jst little things like that.

January 25, 2013 at 6:43 pm
(63) Mark says:

I was diagnosed with fibromyalgia about 14 years ago.
I didn’t know this hypersensitivity was related to fibromyalgia, I learned that today reading these posts.
Mine is that I can’t stand anything touching the front base of my neck.
I can’t stand metal watch bracelets.

My doctor thinks I have aspergers so I don’t know if my hypersensitivity is due to fibromyalgia or aspergers.

Everyday I’m in pain but it comes and goes and moves around.

My doctor finally believes me but specialists don’t.

The most painful part is that I look young and healthy so people think I’m lazy.
And being a male it’s more isolating to have this condition as a young healthy looking male I’m expected to be strong and to move.
The pain wears me down and I get tired.

Last week I paid for a food sensitivity panel as I think it’s certain foods that trigger some of my pains.

February 1, 2013 at 5:16 pm
(64) elaine says:

Heat sensitivity!!!! as soon as the heat gets above 65 or if the suns rays hit my skin, or reflect into a room and i get any of the rays, my skin on my face lips/hands start to burn. Any one else like this to heat? I did have extreme sensitivity with textures, vibrations few years ago, couldnt drive my car without something soft on the steering wheel, due to small vibrations.

But reacting to the sun/heat is really getting me depressed…… any feedback?

February 1, 2013 at 5:32 pm
(65) elaine says:

Blueskies, YOur reactions sound very much like mine, I have done alot of diet changes as well, but sometimes it gets so confusing, Have you reacted to being in the sun? or when the room temp. gets high? I found this all intensified when i hit menopause….

February 20, 2013 at 7:14 am
(66) Andy Brown says:

I thought I was alone with this problem. In humid conditions when my hands get hot I absolutely cannot touch anything made of nylon or rubber, even cotton is unpleasant . It doesn’t hurt, it just makes my flesh crawl. It’s a real nuisance, especially on holiday if we go to countries where its humid. I’m 49 now but have had this problem since I was a child. Does anyone else have this?

February 20, 2013 at 9:26 am
(67) Valerie says:

you all may have a gene mutation called mthfr that causes you not to be able to metabolize folic acid or folate. research mthfr. Without folate your body can not work right at all and many neurotransmitters are affected. It is very common as 50% of people have it. I suffered for years till I was diagnosed and started taking the advanced metabolized form of folate 5-methylfolate. My restless leg went away immediately. This gene mutation causes asbergers and many autoimmune diseases. It is really a vitamin deficiency disease that results in cfs and fibro. You must convince your dr to run a mthfr dna analysis to confirm this diagnosis.

March 8, 2013 at 8:03 am
(68) WingsLikeEagles says:

Oh my goodness, so glad to see this. I have always had tactile hypersensitivity, long before the fibro started (of course, I think the underlying syndrome was always there). I have trouble with tags so I remove them or get tagless clothing. I can’t wear wool or linen but it feels as much like an allergy as hypersensitivity because it makes me itch. I can’t wear most socks unless their texture is super smoothe and silky. Seams often bother me, mostly on pants. Spandex bothers me in tops (bottoms are fine). I have to wear v-neck or similar shirts as nothing can touch my neck in the front. I can’t wear necklaces or bracelets but have found a couple of watches I can tolerate I can’t have hair on my neck so I keep my hair short (I used to pull it up all the time). Fabrics must be soft. Bras are the worst, most are just a problem – only sports bras, and Elita bras for me. I could go on. Clothes shopping is a very time consuming experience for me.

March 8, 2013 at 3:35 pm
(69) Sharon says:

There are some days that it positively HURTS to wear clothing. I try to explain the pain but people just don’t get it.

March 8, 2013 at 4:06 pm
(70) Julia says:

I can NOT stand to couch cotton balls, I can’t use Q-tips unless I wet them first and even then it is iffy. They give me the willies, chills and shivers big time.

I also hate it when I get my hands even a little bit dirty and the dirt drys on my hands. I definitely have to wear gloves while doing yard work.

On the other hand, I go gaga over really soft textures and I can’t get enough of them.

I didn’t realize until I read this article that my tactile reactions were related to my Fibro/CFS. Interesting!

March 8, 2013 at 8:03 pm
(71) Debby says:

Lately, the smell of bacon bothers me. This morning my husband made some, and I had to get up because the smell was nauseating. After he ate, I cleaned the kitchen and turned on the vent over the stove. I wiped the stove down with some lemon cleaner. I can hardly believe the repulsiveness of that odor, and I usually like bacon. There was not anything wrong with it. It was me.

March 8, 2013 at 9:59 pm
(72) kathy runnals says:

it is getting to be funny, how many times i have said ‘wow, it’s not just me’ when reading posts here !!

for me it’s: my hair on my face, tags in clothes, crazy itching all over, micro fiber kitchen towels, etc etc.

but almost the worst thing is sounds. i can’t stay in the same room with an animal licking it self, or a person smacking gum. clicking their nails together, the sounds people make when eating-i feel like i will go insane if i can’t get away from those sounds fast enough. this stuff is so weird.

March 9, 2013 at 2:55 am
(73) Nancy says:

I too have many of these symptoms. One thing I particularly had trouble with was finding a comfortable pillow and pillow cases. All the pillows I tried were too thick and caused neck pain, and I was sleeping on a very old, stained pillow for years.

I finally found one online that is only 2 inches thick and I really like it. Then I was having a problem with trying to find replacements for my old, worn, soft pillow cases. I used one over and over for a long time and tried many different materials but ended up returning them.

I tried percale with a high thread count, satin, and flannel, but finally ordered some that are 100% silk. These are wonderfully soft. I wish someone would have mentioned this to be a long time ago.

March 9, 2013 at 4:48 am
(74) Bonnie says:

As the 74th person to say ditto, I wonder why researchers are so reluctant to do research on this stuff. If we have all taken the time to write perhaps there needs to be a second and a third look at some of these symptoms.

During my bed rest my socks left rings around my skin after THREE minutes on and I had to pad the bed with pillows because it became “to hard” to lie down in. Bar’s of soap left burn rings on my hands. The whole time I thought I was going mad now I understand that what is really wrong with us is that our ability to “digest” things becomes unstable. It won’t be long before it is understood that this one thing is causing all the other problems and all we need to work out is why this one thing “breaks”. It is nice to learn the name of this condition and I am a card carrying member of the club. But what I want to see is the person who did the research on how to “fix it” come forward and say the light at the end of the tunnel is over here…..

March 9, 2013 at 8:42 am
(75) Nancy A. says:

I have very similar issues to others who have posted here.

One other problem is that I have to keep my fingernails very short because if I scratch myself accidentally, that hurts!

Then again, what doesn’t hurt?

March 9, 2013 at 11:26 am
(76) mbloom says:

I think that Valerie has an answer for many of us with her Folate 5 methylfolate statement. Folate is necessary for healthy nerve endings and ours are a mess. I plan to order it ASAP

March 9, 2013 at 11:30 am
(77) almosthuman22 says:

My husband bought microfiber sheets at Costco. They went back immediately. I don’t know how anyone can stand those things.

On a happier note, things that used to hurt me, like my skin when I laid on it, no longer hurt me. My feet don’t hurt in the morning like they used to. Also, one of my first symptoms was feeling like something was dripping on my leg or foot. That is also gone, and hopefully the doctor that sent me to a shrink because of it is also gone.
I rarely buy anything besides cotton with a little spandex in it.

Most music and loud TVs are physically painful, although I did have a couple of months when I could enjoy music.

March 9, 2013 at 7:34 pm
(78) April says:

@fibropainsme

I am like you with the shower. I can’t stand being in the shower and the feeling of water on me. I know I have to take showers but I just shudder thinking about it.
I can’t have anything itchy on my skin like lace or wool. I have to take off my outside clothes when I come home because they all rub and make me itch. I only wear loose tank tops or nightgowns around the house.
I have psoriasis and eczema so have flair ups from things rubbing against my skin. I get red and irritated from the elastic rubbing in between my legs from underwear and under my breasts from bras. My mom was the same way and could never wear bras.

My son has great tactile sensitivity too and never wants to wear clothes.

I love all your posts. Keep them coming please!

april

April 18, 2013 at 9:53 pm
(79) Donna says:

Ok here’s my thing over the last year in a half i have become sensitive to cold on my skin .If i even touch my cold hand on my skin I will scream out in pain. Sometimes are worse than others. Well a few days ago I took some hamburger out of the fridge & put it in a bowl & proceeded to mix with my hands & to me the meat felt like it was frozen in my hands it was so painfullI tried to ignore it cause I’m thinking what the hell . I have Fibro & CFS & gaulbladder problems My neverous system is so shot I am sensitive to everything. My underware even are hurting me now. Does any one have any Idea about the cold being precevied as pain? I would appreciate any info thanks.

April 19, 2013 at 11:39 am
(80) renee says:

I have recently discovered i have morgellions syndrom all with fibrmyalgia should research this disease its a global epidemic after trying everything recently started nutrasilver its working my great im not tired or sore many people with this have been misdiagnosed with fibromyalgia please learn more by doing some research

April 19, 2013 at 11:45 am
(81) renee says:

Try looking at morgellions syndrome u have been misdiagnosed believe me ive been through it i had all the same symptoms

June 14, 2013 at 6:14 pm
(82) http://trangcongnghecao365.com/lam-the-nao-de-ban-khong-bi-lam-khi-chon-mua-may-quay-phim-chat-luong-cao/ says:

Can I just say what a comfort to uncover someone that truly knows what
they’re discussing on the net. You certainly know how to bring a problem to light and make it important. More and more people ought to look at this and understand this side of the story. I was surprised you aren’t more popular given that you most certainly have the gift.

July 6, 2013 at 9:15 pm
(83) Erinlee says:

I have just started looking into all of this as my doctor has suggested could be the cause of many problems and this makes a lot of sense with being touched and wearing clothing.
My husband has a hard time after many years understanding that his gentle loving touch of just rubbing his hand or fingers along my arm or leg brings an intense burning pain and itching sensation.

July 26, 2013 at 3:34 pm
(84) Kim F. says:

I always have had a strong aversion to walking on grass…in fact I hate it. It hurts my feet and gives me the willies. It is so good to hear that I’m not just a nut. I’ve always been told I’m too senstive and it’s in my mind. I also cannot stand wooden spoons, Popsicle sticks, or any thing like that. I have always left a bunch of ice cream on the stick to avoid touching it. I also have to have a certain fit and material for shirts. Basically just very soft tshirts. I’m happy to see I’m not alone and there’s an explanation for all my “quirks”.

August 4, 2013 at 2:46 am
(85) Michael says:

If you want to get well – amygdala retraining works! Do a google search. It’s the only game in town for ME/CFS/MCS. It’s not isolated people recovering, but common place. I dare the author and others to give it a go just to prove it wrong. This is not an ad. I have suffered myself. I recommend. Gupta. Best of luck to you all!

August 22, 2013 at 9:27 pm
(86) mark says:

Hello everyone. . I can actually share something that is somewhat new and actually works for me. Lyrica is the only thing I have ever used that helped, just not a lot. However, recently I began taking dextromathorphan and quninine. Wow. Wow. Wow. There is a drug that will soon be introduced by the name of Nudexta, which consists of these two medications. Again, this is for the tactile part of this illness. I have suffered for 30 plus years. If I can help anyone with information please contact painresearchformark@gmail.com

November 1, 2013 at 7:59 pm
(87) Lily says:

All I can say is I’ve had this all my life. I have to have rather bulky cotton clothing. If it’s a shirt that’s nylony or clingy I swear it’s like frickin’ torture. You couldn’t pay me 1,000,000 to get through a day in stockings anymore. I suffered enough. I also need the shower spray to be gentle. And I can’t use super soft blankets or anything that feels ‘dry’ to me. LOL it’s crazy but it’s nice to know I’m not alone

November 1, 2013 at 8:02 pm
(88) Lily says:

And yes, yes and yes to gum cracking sounds, dog barking sounds, water filling up a glass sounds. Forget it. It’s really not easy having this hyper-sensitivity to life.

November 1, 2013 at 8:04 pm
(89) LIly says:

Breatheasy – yes my light glasses feel like wearing a pound of concrete on my face. I had shingles between my eyes as a kid. maybe that got the nerves going but I’ve worn the same glasses for 12 years cause I know new ones will be a year of painful adjustment. p.s. wellbutrin helps me a little with some pain. Not this stuff though.

November 1, 2013 at 8:08 pm
(90) Lily says:

Wait, here’s my best one. I absolutely cannot be barefoot or walk in socks. When I walk only in socks it’s like the sock dries my skin out immediately, so I keep sneakers on all day and at night I have to put special socks with VASELINE on my feet to sleep and sometimes if I wake up to pee (of course) and the Vaseline is dried up I have to glob more on to sleep. VERY annoying but have had it all my life so no sense thinking twice about it really. I just do it. I also put hand cream on like 75 times a day.

November 1, 2013 at 8:14 pm
(91) Lily says:

this is too funny… now I’m thinking, this is why I have the same pj’s, the same shirts, bras, clothes. Finding something new is just too hard. I’ll wear something comfortable for 10 years if it’s right for me!! Forget jeans. Just forget them. May as well be a sheet of glass on my skin.

November 1, 2013 at 8:23 pm
(92) Lily says:

Dear Mark – just wanted to say the young and healthy thing is a particularly hard thing to deal with. I mean it just rips at you that you ‘look’ young and healthy or pretty or handsome or whatever and feel like you’re dying. I suffered very much with that ‘you’re too pretty to be in pain’ thing. It rips the heart. Not sure how to tell you to deal with it – just know you’re not alone. Oh and not all people expect men to be strong and move. I never did but that’s also cause I am who I am and understand I suppose. Hang in there.

November 29, 2013 at 6:48 pm
(93) Betsy Timmerman says:

A gentle breeze used to hurt me as did the wrinkles in my pajamas. After detoxing with an altered pain signaling medical food (drink) made for fibro symptoms allodynia resolved. However I went nine years wanting to be anywhere but in my body.

December 21, 2013 at 2:39 am
(94) Connie S Ritter says:

I can’t stand to have my husband rub on me…it sets me hurting all over. Does anyone else experience this. He’s a touchy felt person and I used to be before I got sick with this mess. He is told over and over how it affects me and he forgets and repeatedly does this.
Newlyweds in Tennessee

January 11, 2014 at 10:01 pm
(95) Jae says:

Hello, I’m a fashion student in New Zealand and my recent project is to design clothing for people with your condition. I came across this forum while researching. As a person without allodynia I am trying to understand what you guys go through everyday. I hope I don’t sound insensitive but i just wanted to ask a few questions.
In which season do you have the most problems with clothes; summer or winter?
What parts of the body is most effected by wearing clothes?
What kinds of clothing do you wish was out there that catered for your needs?
Some of the things I thought while reading your comments was; no seams inside, no tags, soft cotton or silk lining inside jeans?

January 27, 2014 at 7:57 pm
(96) Kim Arndt says:

Oooh, I really like both of those. Which would you be more comfortable in? I know that you like wearing tights and those types of tops, although the maxi would be really summery!

February 3, 2014 at 11:26 pm
(97) Cindy says:

I have Fibro also so I can relate to all of the above plus hundreds more symptoms/ problems :( I found myself directed here all because I just got out of the shower and the skin on my legs was burning so bad I couldn’t stand it!!! I noticed it hurt when I first got in and the wTer hit me but then it went away.
I to have to have everything as soft as possible.I recently found my dream bedding!!!!!! Yay :) I bought a sheet set and comforter online from Nomorerack,very cheap too by the way,I paid like $30 for a complete sheet set and like $25 for the comforter.OMG I am in love with my bed now,no lie!!! For such a cheap priced set, it’s amazing, and holds up well in the wash to!!! They are super soft and stay that way!!! Check it out everyone,they advertise online all the time,the price stays the same.You won’t regret it that’s for sure!!!!

February 3, 2014 at 11:27 pm
(98) Cindy says:

I have Fibro also so I can relate to all of the above plus hundreds more symptoms/ problems :( I found myself directed here all because I just got out of the shower and the skin on my legs was burning so bad I couldn’t stand it!!! I noticed it hurt when I first got in and the wTer hit me but then it went away.
I to have to have everything as soft as possible.I recently found my dream bedding!!!!!! Yay :) I bought a sheet set and comforter online from Nomorerack,very cheap too by the way,I paid like $30 for a complete sheet set and like $25 for the comforter.OMG I am in love with my bed now,no lie!!! For such a cheap priced set, it’s amazing, and holds up well in the wash to!!! They are super soft and stay that way!!! Check it out everyone,they advertise online all the time,the price stays the same.You won’t regret it that’s for sure!!!

February 8, 2014 at 11:47 am
(99) jan norton says:

I have found that doing the MELT Method helps calm my nervous system and rehydrates/restores the fluid flow in my connective tissue system which add up to a calmer state of my tactile body.

it is quite simple to do, deep work and amazing in its results. Find a teacher who works with Fibro/CFS and other sensitive body issues.

You learn this in class/workshop;/private session and then can do it at home on your own. It works.

February 22, 2014 at 5:49 pm
(100) Kay says:

I don’t know what my problem is but I CANNOT stand bobbled sheets. It’s soo irritating on my skin and feels soo rough! I can’t sleep Aand every time I move in bed I feel like crying. I get myself so worked up coz my partner can’t feel it and with him being a man and quite hairy makes the bobbles even worse. I don’t know what to do . Where can I get super soft bedding that won’t bobble easily?

March 19, 2014 at 10:13 am
(101) Brandi says:

First of all, I was amazed to find this sight when looking for the name for the pain or teeth on edge feeling I get with certain fabrics. I was diagnosed with juvenile fibro 12 years ago (but have had symptoms since the age of 8) and have learned quite a bit about it & how to live with it. But I never knew that my textile allodynia was part of it. Probably because I gave up on finding a doctor that truly understands fibro, and have used mainly natural methods to deal with the various symptoms. I’m just so glad to find I’m not the only one with this “strange” problem.
Lastly, to Kay and any others having the problem with finding comfy bedding. A long time ago I made the switch from cheap sheets because of the feeling of sleeping on stiff sandpaper. Now I have to have at least an 800 thread count. Yes they are expensive, but so worth it. And of course my husband fussed about the expense of the sheets, but after sleeping on them the first night he was hooked. Now if we stay at a motel or something he’s right there with me complaining about the stiff, cheap sheets…haha!
To everyone, thank you for contributing your experiences. Please know you are helping others not feel so alone in this!

April 7, 2014 at 9:11 pm
(102) patricia says:

I was diagnosed with fibro today..relieved to know what the problem is but also wanting relief from pain!!!!

April 15, 2014 at 2:26 pm
(103) Linda says:

Jae, God bless you for wanting to design clothes we can actually wear! I am still searching for underwear that don’t hurt the top of my thighs. If anyone out there has a suggestion, please share!
I can relate to so many of the symptoms you all have mentioned and it is good to know I am not alone. Keep up the fight.

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