SPD Support Forum

Let me explain. Yesterday I ended up in the Emergency Room having horrible pelvic pain. Although the pain came in waves, at the top of the wave, the pain was about a 7 out of 10. The attending physician thought I was passing a kidney stone; I wasn't. It was a kidney infection. Anyway, from this experience, I just want to share why I really hate having SPD.

Before going to the ER, I couldn't decide if the pain was bad enough to constitute an emergency. I over react to pain and even when I stub my toe, the pain is excruciating. In addition, I have a really difficult time gauging my sensations. For example, at the ER they gave me an intravenous antibiotic. Now, I'm allergic to a whole lot of things, medicine is one of them. So, the antibiotic was making me feel weird. Strange taste in my mouth, funny skin feelings. And on top of it, I was having anxiety from the whole experience. So the nurse asks me if I'm having an allergic reaction and I don't know! I can't tell the allergic reaction sensations from any other sensations. The nurse looked at me as if I was nuts.

This is just an example. I've had this problem my whole life. Is the pain bad enough to warrent special attention? How bad is bad, when it hurts really badly. It that weird feeling in my chest something to worry about or not? And then, sometimes, I just ignore the weird feeling and the doctors lecture me for not coming in when something changes. How do you explain that everything changes, I always feel weird, and I can't tell a serious sensation from an everyday weird sensation. In addition, I'm always in some type of pain from the SPD. Which is a problem pain and which is just my sensory system having a fit? What is a sensation that needs attention and which is not? It really drives me nuts.

Sorry for the rant, but few in my town really understands what I'm going through and I figured some of you would have the exact same problem. Thanks for listening (or rather, reading)

Been there. Maybe not the exact situation, but the bad pain that you don't know if it is one of your everyday bad pains or a new serious pain that means you have to get checked out.

Even when I get it right and get it checked out doctors often think I am just seeking attention.

I had an OBYGN who thought that about me demanding she remove a fibroid that was causing a pain load that pulsed every few seconds. It was like someone kept knifing me in the groin area. She apologized after the surgery. The fibroid was the size of a softball and it was attached to my uterus with a long cord. It had wrapped itself around my uterus and kept squeezing it as the blood pulsed through it.

I keep track of my regular pains so that when something new or odd shows up I can compare it to the other pain problems. My husband helps me figure out if it is just another muscle spasm or if I actually hurt something.

I could have done with your post last week. My 5 yr old has SPD and is on a wheat, gluten and soy free diet. Last week he banged heads in school with another boy and as he wears glasses it cut his face. He doesnt usually moan about bumps and grazes. We ended up in A and E. he screamed the place down when they mentioned glueing it. Then 2 nights after he was sick only once in bed. Sorted that but on the second day he was complaining of tummy ache. Nothing appeared from it and I was wondering if it could be his SPD. He slept the clock round and then was fine. I worry about him hurting himself and doing nothing about it. Then on the other hand his tummy pains he used to have as a baby. Can't win and as you say people including dr think your mad. The dr in the hospital looked quite annoyed.

Beck, I've tried to keep track of my pains and weird sensations, but they are so many I can't keep track. I keep a journal so that I can keep track of the big pains in my life. I'm not sure how successful that is given that once I pay attention to the sensation, it seems different from the last time.

Strangely enough, I have to have my husband tell me if anything is bad enough to warrent attention. Without him, I would either go to the doctor constantly or never.

I think things would be better if my weird sensations didn't hit my anxiety button and thereby convince me I'm going to die. Even when I was very little (3 years old) and had a strange sensation in my body, I would get anxious because I couldn't figure out what was going on and then became convinced I was going to die. THe thought was automatic even then. It took me years before I could ignore the thought. Though sometimes that doesn't work. Even last week when I had a sensory meltdown (visual), my brain told me that what was going on was going to kill me. It's weird to ignore that thought and then never be sure if what is going on is bad enough to warrent attention. Very confusing. I wish I could trust the sensations going into my body so that I knew what was a concern and what isn't.