I’m Debilitated Because of It - Here's My Story & Findings


(Charleston, SC)

It started out as, well 97%, of what’s listed above, as a child, and then after my pregnancy at age 21 became entirely debilitating. They diagnosed it as Fibromyalgia so I could get on disability, but so much of my problems didn’t quite fit, so they later said I had some sort of Central Sensitivity Syndrome, but never could put a name to it.


I was seen for years by the #1 rated Chronic Pain Clinic in the US, and by the best doctors, inpatient and outpatient. Never once did I hear of SDP though. They just kept telling me I was a train wreck and names didn’t matter in the end. I was told I would never work again and would probably be in a nursing home, or assisted living at best, the rest of my life.

I would have severe attacks, part pain / part anxiety from the fear of the pain persisting past my ability to cope, all because of being SO over sensitive to light, sound, touch, and smell, etc. The only thing I found that helped me was loosing weight, which helped a little bit with everything, but only just enough to maintain my independence.

I’m still on full disability and only work maybe 2 hours a day 2-3 times a week, and I spend probably 80% of my week in my home (a controlled environment). As I’ve mentioned above, I’ve seen the best, and countless specialists, and they have NO clue what causes all of this.

They told my mother when I was young it was all “emotional” and in my head because of the social/emotional aspects associated with it. Though today I have no depression, anxiety, or other mental or emotional issues, and I have gone though years of testing to get to this point, so, I KNOW.

I have a website I made years ago, probably could use an update, but maybe it might help some of the people searching this condition, as it seems to fit me. I mean my jaw just dropped reading this page, seriously. I wonder now if this is related to my chemical sensitivity, as thinking about the two side by side, I see may overlapping features.

All my doctors visits, and all my personal research haven't pinpointed a cause to how SPD works, but we were able to narrow down the overall cause "congenital herbicide poisoning." So, at least on my part, the condition may, or may not, be the result of chemical agents, specifically herbicides and or pesticides. Such exposure would have to be congenital, in my case, my father was exposed with a concentrated dosage of an herbicide.

He was told it was out of his system prior to my conception, but it was only "partially" out of his system at the time of my conception.(When he was told the chemical was out of his system, they were unsure how long it stayed in the system. Later research confirmed the chemical stayed in the system significantly longer then originally thought.)

Any ways, my site is: http://css.dewarlorx.com/senses.html . If anyone has any general questions regarding ways to help with specific issues relative to SPD, you can shoot me an email at: dewarlorx((([at])))yahoo.com. I'd also be VERY interested I any research going on and any treatment options beyond occupational therapy and the like.

Comments for I’m Debilitated Because of It - Here's My Story & Findings

Average Rating starstarstarstarstar

Click here to add your own comments

Nov 14, 2015
Rating
starstarstarstarstar
thank you!
by: Elizabeth

Hi. Thanks for your story. I was diagnosed with FMS about 15 years ago, but still trying to get on disability. I saw a new therapist just a couple of weeks ago who told me that many of my symptoms have to do with "sensory issues" and since then i've found out about SPD. i checked most of those on that list. my siblings teased me a lot for being overly sensitive. I will review your site. I so need to know where to go for help with this. thanks again. :)

Sep 07, 2010
Rating
starstarstarstarstar
=)
by: Anonymous

Thanks for sharing!

Click here to add your own comments

Join in and write your own page! It's easy to do. How? Simply click here to return to Adult SPD .