Aa
Textile Hypersensitivity- Help!
I have no idea if this is the right forum, or if anyone is going to have a clue what I am talking about...but I am desperate and have to try to figure out whats wrong with me.
Little bit of background, I have a previous diagnosis of Fibromyalgia and now I am being evaluated for Ehlers Danlos syndrome. My mother was recently at the Cleveland Clinic and received a diagnosis of EDS and now I am being investigated by my Rheumatologist, since I scored high on diagnostic scale.
I am not sure if the issue that brings me here has anything to do with above mentioned illnesses, but I had to mention them. I have, for a long time, had hypersensitivity issues, which have worsened as I have aged (I am only 28 though.) I notice it with sounds, and loud voices, they seem to hurt my head, and make me flinch. I heard that can go along with Fibro though, so I figured that was it.
The worst part I have never even shared with my docs because I was worried about sounding nuts. I cannot touch certain textures, or tolerate certain things in my mouth. Like Popsicle sticks, can NOT put them in my mouth, it freaks me out. I can't stand squeezing out rags or sponges, it's too much. I have to force myself to do just so I can clean house. It feels....strange, it is almost impossible to describe the way it feels. Can't use wooden spoons either if the wood is too porous or rough. The reason for all these aversions is difficult to put into words. Not only does it almost hurt my skin, but it feels like it does when you hear fingernails on a chalk board or something. It's WEIRD.
I can't deal with this, it's really a daily bother, although some days are worse than others. There are times I seem not even to notice it. But I HAVE to know whats happening. I am starting to worry about some sort of central nervous system problem. Any ideas???
Little bit of background, I have a previous diagnosis of Fibromyalgia and now I am being evaluated for Ehlers Danlos syndrome. My mother was recently at the Cleveland Clinic and received a diagnosis of EDS and now I am being investigated by my Rheumatologist, since I scored high on diagnostic scale.
I am not sure if the issue that brings me here has anything to do with above mentioned illnesses, but I had to mention them. I have, for a long time, had hypersensitivity issues, which have worsened as I have aged (I am only 28 though.) I notice it with sounds, and loud voices, they seem to hurt my head, and make me flinch. I heard that can go along with Fibro though, so I figured that was it.
The worst part I have never even shared with my docs because I was worried about sounding nuts. I cannot touch certain textures, or tolerate certain things in my mouth. Like Popsicle sticks, can NOT put them in my mouth, it freaks me out. I can't stand squeezing out rags or sponges, it's too much. I have to force myself to do just so I can clean house. It feels....strange, it is almost impossible to describe the way it feels. Can't use wooden spoons either if the wood is too porous or rough. The reason for all these aversions is difficult to put into words. Not only does it almost hurt my skin, but it feels like it does when you hear fingernails on a chalk board or something. It's WEIRD.
I can't deal with this, it's really a daily bother, although some days are worse than others. There are times I seem not even to notice it. But I HAVE to know whats happening. I am starting to worry about some sort of central nervous system problem. Any ideas???
Sorry to hear you have been experiencing this so long, with no answers. I am not sure what would be causing this pressure disturbance, my only thought would be possibly a nerve issue, but you said you had a NCS what were the results of that? Sometimes those tests don't really show much or are not as accurate.
If I were you, I would push for a MRI of your brain, just to be sure that you don't have any lesions, not to scare you but maybe that would cause some hyper sensitivity issues. The Vitamin deficiency alone can cause nerve damage but not usually on only one side of the body only.
Try asking your new pcp if you can see a neurologist, it is worth a try when you have suffered this for so long.
Hope you keep posting, hope this helps! Stacey
If I were you, I would push for a MRI of your brain, just to be sure that you don't have any lesions, not to scare you but maybe that would cause some hyper sensitivity issues. The Vitamin deficiency alone can cause nerve damage but not usually on only one side of the body only.
Try asking your new pcp if you can see a neurologist, it is worth a try when you have suffered this for so long.
Hope you keep posting, hope this helps! Stacey
I can identify with a lot of what was said here. I can't take wooden spoons.... popsicle sticks... certain textile materials.
I am hoping someone reading this can give me added insight.
The most recent problem I have been having is a sensitivity to pressure. And I haven't been able to get any answers. It's my right side mostly being affected. bra straps and waistbands really irritate me- and it's not pain. It doesn't hurt. It's the pressure against my skin. It drives me to distraction, literally.
This started 6 years ago.
I've been to my doctor, on multiple occassions throughout the years. I did tell her this problem and others I have been having-
anxiety, depression, hyperhidrosis, muscle twitches, a constant ache in my muscles and joints- migraines (thank God they're not frequent), numbness in my lower right leg (it sometimes feels like there is a band around my leg right below the calf, and slightly cold and tingly underneath it, waking myself up at night by my legs, or entire body jerking.
After running blood tests and a nerve conductions study- the most she could find is a slight B12 deficiency- she sent me to a therapist and psychiatrist. Telling me that I was too wound up, it was most likely stress.
So I DID tell my doctor and she does think I am neurotic.
So, two years of therapy (diagnosed with OCD, anxiety and depression) and many drugs later I'm still the same (we've tried prozac, lexapro, wellbutrin... the next on the list to try is zoloft) and nothing has helped. Prozac helped some, but I was sleeping all the time.
I am going for a second opinion (different PCP now, and a new psychiatrist/therapist combo) and another nerve conduction study and round of bloodtests...
And am completely frustrated at the lack of answers. And tired of being stuck in dresses (all the odd looks and questions that go along with wearing a dress and if leggings to an active event) or racing home after work to get into a nightgown because I can't stand the feel of my clothes anymore. And not wanting to go out because that means having to get dressed.
Has anyone experienced anything like this?
I've reading about fibromyalgia and sensitivity and pain with clothes- but I am not sure if I fit that because it is the pressure- not pain. And it's only on the right side. My left is usually fine.
I'd really appreciate feedback.
I am hoping someone reading this can give me added insight.
The most recent problem I have been having is a sensitivity to pressure. And I haven't been able to get any answers. It's my right side mostly being affected. bra straps and waistbands really irritate me- and it's not pain. It doesn't hurt. It's the pressure against my skin. It drives me to distraction, literally.
This started 6 years ago.
I've been to my doctor, on multiple occassions throughout the years. I did tell her this problem and others I have been having-
anxiety, depression, hyperhidrosis, muscle twitches, a constant ache in my muscles and joints- migraines (thank God they're not frequent), numbness in my lower right leg (it sometimes feels like there is a band around my leg right below the calf, and slightly cold and tingly underneath it, waking myself up at night by my legs, or entire body jerking.
After running blood tests and a nerve conductions study- the most she could find is a slight B12 deficiency- she sent me to a therapist and psychiatrist. Telling me that I was too wound up, it was most likely stress.
So I DID tell my doctor and she does think I am neurotic.
So, two years of therapy (diagnosed with OCD, anxiety and depression) and many drugs later I'm still the same (we've tried prozac, lexapro, wellbutrin... the next on the list to try is zoloft) and nothing has helped. Prozac helped some, but I was sleeping all the time.
I am going for a second opinion (different PCP now, and a new psychiatrist/therapist combo) and another nerve conduction study and round of bloodtests...
And am completely frustrated at the lack of answers. And tired of being stuck in dresses (all the odd looks and questions that go along with wearing a dress and if leggings to an active event) or racing home after work to get into a nightgown because I can't stand the feel of my clothes anymore. And not wanting to go out because that means having to get dressed.
Has anyone experienced anything like this?
I've reading about fibromyalgia and sensitivity and pain with clothes- but I am not sure if I fit that because it is the pressure- not pain. And it's only on the right side. My left is usually fine.
I'd really appreciate feedback.
Thanks Stacy! Its good to hear I am not the only out there who feels this way! I can absolutely sympathize.
Sounds like you read about the same stuff I did. Some things about tactile defensiveness made a LOT of sense, but others were pretty far off. To me "tactile sensitivity" seems like a better word for how I feel. lol
Funny you say your dad has Spondylitis as it is often linked with EDS. They have the Beighton criteria (diagnostic criteria for EDS diagnosis) , you should google it and see if it applies to you!
Good luck with finding your diagnosis and yes, please let me know if you find anything else out about our weird sensitivity!
Sounds like you read about the same stuff I did. Some things about tactile defensiveness made a LOT of sense, but others were pretty far off. To me "tactile sensitivity" seems like a better word for how I feel. lol
Funny you say your dad has Spondylitis as it is often linked with EDS. They have the Beighton criteria (diagnostic criteria for EDS diagnosis) , you should google it and see if it applies to you!
Good luck with finding your diagnosis and yes, please let me know if you find anything else out about our weird sensitivity!
3 Comments
I have the same thing!
Rough dry fabrics elicit strong fight or flight, goosebumps, especially when natural oil is rubbed off hands (water). But here is my question:
Don't other textures give you intense comfort too? It goes both ways for me.... Condensated glass, thick lotion, soft skin, lamination, soft fur all give me extreme feelings of pleasure and safety, almost as strong in magnitude of the extreme discomfort of dry rough textures. In fact, ALL textures will give me intense and automated emotional responses. And all given textures will elicit the same responses every time no matter when tested in my life. The responses are so strong that I can FEEL what the emotion of touching the texture will be before I even touch the texture.
Where am I going with this? If the above made sense to you.... Guys, you don't have a disorder, but instead you have strong synesthesia tendencies connecting somasensory activity to emotional activity in the brain. You have tactile-emotional synesthesia. Look it up.
I have it. I'm supposed to get the fight or flight response from a bear or my crush, but it's automatically induced from touching TOILET PAPER AND DRIED CLAY! My brain automatically induces feelings of nourishment and protection when I rub lotion on, my brain automatically is soothed by glass and comforted by fur and rubber.... And the feeling is the same no matter how drunk I am, tired I am, mad I am, etc or when it's tested in my life... It's megahardwired. I can't escape the connections my brain makes.
And I know the connections are abnormally strong and consistent because i have 4 other senses to compare it to. None of the other senses can I induce a hardwired emotion from just thinking of the sensory input. My brain doesn't even induce a hardwired emotion once actually being exposed to the sensory input!
For 20 years I have spent obsessed with feelings and touch. I make sure I am encompassed by the good textures and I always find myself touching them. I also play the piano, and have insane spatial ability here as well as in sports. I really do not think I have SPD at all.
Ryan
Rough dry fabrics elicit strong fight or flight, goosebumps, especially when natural oil is rubbed off hands (water). But here is my question:
Don't other textures give you intense comfort too? It goes both ways for me.... Condensated glass, thick lotion, soft skin, lamination, soft fur all give me extreme feelings of pleasure and safety, almost as strong in magnitude of the extreme discomfort of dry rough textures. In fact, ALL textures will give me intense and automated emotional responses. And all given textures will elicit the same responses every time no matter when tested in my life. The responses are so strong that I can FEEL what the emotion of touching the texture will be before I even touch the texture.
Where am I going with this? If the above made sense to you.... Guys, you don't have a disorder, but instead you have strong synesthesia tendencies connecting somasensory activity to emotional activity in the brain. You have tactile-emotional synesthesia. Look it up.
I have it. I'm supposed to get the fight or flight response from a bear or my crush, but it's automatically induced from touching TOILET PAPER AND DRIED CLAY! My brain automatically induces feelings of nourishment and protection when I rub lotion on, my brain automatically is soothed by glass and comforted by fur and rubber.... And the feeling is the same no matter how drunk I am, tired I am, mad I am, etc or when it's tested in my life... It's megahardwired. I can't escape the connections my brain makes.
And I know the connections are abnormally strong and consistent because i have 4 other senses to compare it to. None of the other senses can I induce a hardwired emotion from just thinking of the sensory input. My brain doesn't even induce a hardwired emotion once actually being exposed to the sensory input!
For 20 years I have spent obsessed with feelings and touch. I make sure I am encompassed by the good textures and I always find myself touching them. I also play the piano, and have insane spatial ability here as well as in sports. I really do not think I have SPD at all.
Ryan
There is a huge difference between "gray makes me feel sad" vs "gray makes my brain go into an emotional panic and induces the fight or flight response. I can't even think about the color gray without shivering."
See, I'm sure everybody finds some sort of comfort out of soft things and discomfort out of rough things, but their feelings are always comparable to "gray makes me feel sad". For them, textures can be likened to metaphors: but they don't have the ability to alter heartrate by 30% by thinking of stroking a wooden popsicle stick. They don't have to lick their fingers to provide comfort stimulus after a shower strips away skin's natural oil protective barrier.
My touch sense is hyperactive and consequently associated with a sprawling databank of detailed information. It's all fake; a manifestation of the mind... but isn't everything?
See, I'm sure everybody finds some sort of comfort out of soft things and discomfort out of rough things, but their feelings are always comparable to "gray makes me feel sad". For them, textures can be likened to metaphors: but they don't have the ability to alter heartrate by 30% by thinking of stroking a wooden popsicle stick. They don't have to lick their fingers to provide comfort stimulus after a shower strips away skin's natural oil protective barrier.
My touch sense is hyperactive and consequently associated with a sprawling databank of detailed information. It's all fake; a manifestation of the mind... but isn't everything?
The qualifications to be met for synesthesia are:
1. synesthesia is involuntary and automatic.
Yes, I cannot separate the emotions from the touches, no matter my mindset.
2. Synesthetic perceptions are spatially extended, meaning they often have a sense of "location." For example, synesthetes speak of "looking at" or "going to" a particular place to attend to the experience.
Yes, It transports my mind somewhere different yet extremely defined.. And it can transport to a vast array of defined locations.
3. Synesthetic percepts are consistent and generic (i.e. simple rather than pictorial). The stable odd feelings I get have not changed my entire life.
4. Synesthesia is highly memorable.
Do you want to watch a video of me inducing goosebumps on my skin just by thinking them into existence? And then thinking them right back out of existence? Yes, all feelings are super memorable and easy to induce.
5. Synesthesia is laden with affect.
Emotional rollercoasters were my life until I learned to sort though which were the good stimuli and which were the bad. I still feel mega emotion from objects, but because I know which objects to touch the feelings are usually positive. I'm usually touching my belly or any grease on my body. I'm usually stroking the keyboard keys while I type. It feels so ******* good.
1. synesthesia is involuntary and automatic.
Yes, I cannot separate the emotions from the touches, no matter my mindset.
2. Synesthetic perceptions are spatially extended, meaning they often have a sense of "location." For example, synesthetes speak of "looking at" or "going to" a particular place to attend to the experience.
Yes, It transports my mind somewhere different yet extremely defined.. And it can transport to a vast array of defined locations.
3. Synesthetic percepts are consistent and generic (i.e. simple rather than pictorial). The stable odd feelings I get have not changed my entire life.
4. Synesthesia is highly memorable.
Do you want to watch a video of me inducing goosebumps on my skin just by thinking them into existence? And then thinking them right back out of existence? Yes, all feelings are super memorable and easy to induce.
5. Synesthesia is laden with affect.
Emotional rollercoasters were my life until I learned to sort though which were the good stimuli and which were the bad. I still feel mega emotion from objects, but because I know which objects to touch the feelings are usually positive. I'm usually touching my belly or any grease on my body. I'm usually stroking the keyboard keys while I type. It feels so ******* good.
Sorry to hear about you and your mothers's health problems, you have found a great place to talk with others with your concerns.
I understand exactly what you are talking about and the only way I can describe it is nails on chalk. I get super sensitive fingers and hands. Certain fabrics are unbearable to touch, especially if my hands ate water logged or over dry. It makes daily things like dressing after taking a shower difficult. I cant take a shower then do dishes or vice versa. Even if someone makes a noise from fabrics, I just cringe.
I believe my mom or dad might have EDS and passed it to me. I have many medical issues the could easily be caused by a connective tissue disorder or even autoimmune disease. So far, No diagnosis in my family except my fathers Ankylosing Spondylitis.
I did a little research and the only thing I can find is TACTILE DEFENSIVENESS but it isnt quite the same thing, its somewhat more amplified. They are linking this type of disorder most commonly with autistic children. Though, I am sure that it is a clinical symptom of Neurological dysfunction of some sort. There isnt much solid research on Fibromyalgia, Im sure once they really figure out this disorder they will make more since if the symptoms that come with it.... hopefully
Hope this helps, I will do more research and I will let you know if I find out anything else. Stacey
I understand exactly what you are talking about and the only way I can describe it is nails on chalk. I get super sensitive fingers and hands. Certain fabrics are unbearable to touch, especially if my hands ate water logged or over dry. It makes daily things like dressing after taking a shower difficult. I cant take a shower then do dishes or vice versa. Even if someone makes a noise from fabrics, I just cringe.
I believe my mom or dad might have EDS and passed it to me. I have many medical issues the could easily be caused by a connective tissue disorder or even autoimmune disease. So far, No diagnosis in my family except my fathers Ankylosing Spondylitis.
I did a little research and the only thing I can find is TACTILE DEFENSIVENESS but it isnt quite the same thing, its somewhat more amplified. They are linking this type of disorder most commonly with autistic children. Though, I am sure that it is a clinical symptom of Neurological dysfunction of some sort. There isnt much solid research on Fibromyalgia, Im sure once they really figure out this disorder they will make more since if the symptoms that come with it.... hopefully
Hope this helps, I will do more research and I will let you know if I find out anything else. Stacey
Have an Answer?
You are reading content posted in the Neurology Community
Top Neurology Answerers
Allentown, PA
ON
Queensland, Australia
Queen Creek, AZ
Find out how beta-blocker eye drops show promising results for acute migraine relief.
In this special Missouri Medicine report, doctors examine advances in diagnosis and treatment of this devastating and costly neurodegenerative disease.
Here are 12 simple – and fun! – ways to boost your brainpower.
Discover some of the causes of dizziness and how to treat it.
Discover the common causes of headaches and how to treat headache pain.
Two of the largest studies on Alzheimer’s have yielded new clues about the disease
