allodyniabear's interview
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How did all start?
I am not sure how it all started. It could be because of a few things. We are still working on the reason I have it.
Do you already have a diagnosis? How long did it take you to get it?
I have had this for 10 years, but no one told me the term until recently. I thought I was the only one with this problem.
For what medical specialties have you been treated? What has been the most useful specialty for your?
So far nothing really helps. I am doing pain clinic at the moment.
What has been the most useful thing for you so far?
facebook support group https://www.facebook.com/groups/321632581619502/?ref=group_header
What have been your biggest difficulties?
The most difficult thing has been having pain from clothes, and no one understanding this issue.
How has your social and family environment reacted? Have your social or family relationships changed?
Friends and family don't understand so I started my own facebook support group.
What things have you stopped doing?
I stay at home a lot because of the clothes pain.
What do you think about the future?
I am hopeful for change in the future and more better treatments and research towards allodynia.
So far, which years have been the best years in your life? What have you done during them?
Opening my support group has been really nice and relating to people for the first time with similar problems.
What would you like to do if you didn’t have your condition?
I would probably be working.
If you had to describe your life in a sentence, what would it be?
My life is a constant struggle being comfy, but hopeful for the future.
Finally, what advice would you give to a person in a similar situation?
You are not alone. Don't give up. You are welcome to join our support group for this rare condition. https://www.facebook.com/groups/321632581619502/
