I don't know what to do anymore

by Cassy
(Cali)

Hiya. I'm 16 years old and I have no idea how to cope with this. On some days, I can't help but cry sometimes because my clothes are burning me and because I can't eat this and that and because everything hurts.




I don't have no one to talk to about it, because apparently its rare and some doctors have never heard of it... :[ We've been everywhere. I've kind of just lost hope now. The rest of my life is just going to be pain full...

I am so lost... everything just kind of seems hopeless. :( x



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Dec 20, 2010
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starstarstarstarstar 		I can empathize!!!
by: J.R.

Hey Cali,

I am 27 years old and currently have no 'official diagnosis' but definitely have had SPD (especially tactile defensiveness with clothes and textured materials) since always. Sometimes are easier than others, sometimes seem unbearable!!! (but here I still am... with a good job and a pretty good life). I currently live in Alaska and it is winter - so I HAVE to wear tons of layers of clothes (that stick together and rub against me and make me feel like i am being strangled and want to scream and rip them all off) so that I don't perish from the way colder than freezing air. It feels AWFUL sometimes, like not only are the clothes touching me and hurting me, but my SKIN is touching me. I want to rip it off!!! I have found that exercising helps a lot to dissipate some of that crazy energy. And some days, I gotta talk myself through getting dressed so I don't panic. Like, ok, it's just some pants. Take a deep breath and tell myself that I need to wear them to stay warm, that they are helping me, not meaning to hurt me. Even so, sometimes when it is bad I still cry!!! But that helps a bit, to get some release. Just want you to know that you are not alone, that there is someone who understands the kind of things you're going through. I try to just take it easy and remain as calm as possible so I don't freak out and hurt myself (which I always regret later!). Deep breaths, and I am hopefully going to look into getting some kind of therapy so I can cope even better! But for the record, I am WAY better able to deal with these symptoms now than when I was 16. So there is hope. Good luck to you, lady!

Hearts,
J.R.
Mar 31, 2010
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starstarstarstarstar 		Burning skin
by: Anonymous

Hi, Cali.

Please realize that there are answers and ways to support yourself with compassion and accessing various professionals. Have you had this burning your entire life or is this something that has emerged in recent years? I understand this pain and wonder if perhaps stress can also be making things worse, as teenage years are full of stress and hormone level fluctuations. It would be important to find a health care provider that is willing to work with you and your family in understanding and diagnosing all of the contributing factors (dermatologic?, endocrine?, allergy?, SPD?, etc.).

I would wonder, if this is relatively newer, if there is an internal or external sensitivity / allergy or medication sensitivity and what kind of coating can possibly be put on the skin to calm the skin/ pain. Explore what textures are more tolerant; loose clothing better than compressed? temperatures? and put this in your world. Find more ways to cope (relaxation training,etc.) & spend time doing things you enjoy :) Take care.
Mar 22, 2010
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starstarstarstarstar 		I'm sorry...there's hope though
by: Jessica

I'm so sorry you're going through this. My son is 7 and I just learned what this was called a year ago. Not many doctors do know it yet.

The comments you've gotten so far are very good - do follow them if you can. It will make your life much easier.

There is hope, I promise. My son goes to an Occupational Therapist who specializes in the same thing and they do work with him. There are also books, websites & blogs, tools, etc. that will help you.

I agree about the clothes - find natural clothes with few seams and no tags - that will help. Also, wash in dye & perfume free detergents and no fabric softeners (as mentioned earlier).

You'll get through - it will be a learning journey, but you will. Make sure to keep a journal (also mentioned before) so you know what is and isn't working. This will also help get your feelings out so you know when you are most vulnerable.

Hang in and post anytime you need to talk. You'll always have support here. -Jessica
Mar 22, 2010
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starstarstarstarstar 		an appeal help for her!
by: Anonymous

I have pain in my heart for the problems that describe.io hope that somebody who is available and can help you. not lose hope.
Mar 22, 2010
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starstarstarstarstar 		there is hope
by: Anonymous

Cali,
First of all, take a deep breath. there is hope for you. Ask your mom or dad to take you to an OT that specializes in Sensory Integration aka Sensory Processing Disorder-
They can test you- and help you.

I would also suggest (and I am not an expert) that you find some material that doesn't bother you as much and start making a list. You can get through this.
Mar 22, 2010
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starstarstarstarstar 		Coping with tactile defensiveness
by: susanfrom

I'm sorry to hear your in such pain. I'm 53 & have had tactile defensiveness all my life. I only learned about what it was called when I was doing research into Tourette syndrome and was stunned to find a description of what I had. Tactile defensiveness is when you can't tolerate things that touch the skin. My sister has it too but she didn't suffer as much as I did because I paved the way with my mother. My mom was tough & never understood. She was also strict & bought all our clothes even underwear even when we were teens.

I don't know how much you know about your clothes & how they're laundered. Me, I mostly wear cotton. That works for me. I have to be careful about what I wash them in, & never use fabric softener.

You need to find out what exactly is bothering you & avoid it.

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