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Kids and teens who get chronic pain from environmental stimuli

Apr 14, 2017 3:36 PM

I wanted to start a group for people under 21 who get pain from their senses ex pain from sound,light,smell,touch etc or for people that get sick from things in there environment ex people who get very sick from the slightest of germs etc I have found lots of adults with these types of conditions but not many people in my age group I want to meet more people like me so that we can exchange tips and advice give each other support and talk about what it's like being a kid or teen with these changes

Apr 14, 2017 5:39 PM

hey I'd love to join in! I get a lot of my pain stimulated by environmental causes mostly smell and and sound.

Apr 14, 2017 5:45 PM

What's your name I'm Jemma I'm 12

Apr 14, 2017 5:49 PM

How old are you what type of pain do you get where is it located I get migraines from sounds I have a condition called hyperacusis I can also have seizures from sound

Apr 14, 2017 6:15 PM

oh I'm 17 and we're not really sure what's wrong with me exactly, but I have a lot of allergic type reactions to environment stuff, perfume soap certain fabrics you get the idea. I get nasty headaches from light and sound stimuli sometimes but the main issue for me is that it will always push me over the edge of whatever other issuies i have going on

Apr 14, 2017 6:38 PM

I'm sorry to hear that have you tried getting your protection and sunglasses and perhaps wearing a noseclip like the kind that divert wear

Apr 14, 2017 6:39 PM

Your username suggest that you have the extremely painful condition will your bones break very easily is that true

Apr 14, 2017 6:42 PM

I've actually never broken a bone believe it or not! I just have lots dislocations and painful joints. not a fun time.

Apr 14, 2017 6:50 PM

You poor thing

Apr 14, 2017 6:52 PM

eh, I deal. just have to work with what you've got right.

Apr 14, 2017 7:03 PM

What's your name

Apr 14, 2017 7:38 PM

Ariel, I'm gonna assume yours is Jemma

Apr 14, 2017 8:01 PM

Yes I love mermaids I like your name have you tried tens units before or physical therapy

Apr 14, 2017 9:38 PM

I'm doing physical therapy as of now, I haven't tried a tens unit yet though.

Apr 15, 2017 4:27 PM

They can be very helpful do you have sunglasses and headphones and a nose clip have you gotten an EMG done do you take pain medicine

Apr 15, 2017 6:33 PM

yeah, I'll often wear earplugs during class to block out all the extra noise. I'm thinking of getting tinted contact lenses to wear under my regular glasses to help.

Apr 15, 2017 8:51 PM

Don't your family understand your condition I have a hard time because my family doesn't really understand

Apr 15, 2017 10:15 PM

They don't really. They end to think I'm a hypochondriac. But it's alright. I think it really helps that I know I'm not the only one who has issues with their family.

Apr 16, 2017 10:56 AM

I'm sorry 😐 happy Easter 🐣 if you Christian like me I can't go to any family gatherings because it's to loud what about you

Apr 16, 2017 2:06 PM

Jemma I am proud of what you are doing for kids/ teens your age. I wish I had someplace to turn when I had major back surgery at the age of 15. Keep up the good work you are awesome!

Apr 16, 2017 6:08 PM

The reason that I started the group is because I have a condition called hyperacusis which means that I get pain from the sound although there is a hyperacusis network it's mostly full of just the dogs I've been searching for a group of kids and teens to get chronic pain from sensory stimuli just like myself since I couldn't find one I decided to create one and so I thought then I'll be able to get in contact with people my age who have similar conditions

Apr 22, 2017 12:20 PM

Hey Jemma,
I'm 18 now and have had multiple condition's since birth, even more from the age of 7 and then more still since the age of 14. I will write about them for you if you'd like but I thought I'd say hey and that I hope this time the under 21 group stays active

Apr 23, 2017 11:31 AM

I think that's a great idea. The challenges teens and young adults face are different from the ones those middle age or older face. Wonder if you created one if there would be a way to link the two together. You could be like a "sister" site. Just rambling here.

Apr 24, 2017 6:39 AM

That's a good idea Mimikay. I tried doing this a long time ago but it fizzled out. I might try looking for an app that we can use as a group chat like thing for us young adults. Of course we'd still use this app as it's incredibly useful and you all have a wealth of knowledge and kindness but the app would enable the young group to bond a bit more too

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