cold, touch & lights and loud noise

[Kathleen M]

When Dr. Belzberg gave us his talk on pain management and issues relating to bpi injury he explained why some of us do not like to be touched on our bpi arms.

Touch to most is just touch on the bpi arm a pain message is sent to the brain. It was an eye opener for those of us who have this issue. It is great to have someone explain the medical reason for our reactions to simple touch on bpi arm. I now understand that this is a reality not unique to me. As a child I would get so angry if some one tapped me on the arm and over react sometimes I would hit them because to me it felt like an attack. I understand that I had to learn to control my reaction to touch and as I matured I have somewhat. But only because others did not understand and would react to my ouch with annoyance. Statements like "gee I hardly touched you and whats the big deal" were their response when I told them not to touch my arm... that includes my husband who just did not understand it either. I hate it when any one touch's me on my right arm while talking to me or to get my attention because the message my brain receives is Pain instead of -- gentle touch. It is so annoying when people do this and react insulted when asked to stop touching your arm... but now I am ARMED with information as to why I feel pain when I should feel touch... that made camp worthwhile.

I wonder if any of our medical experts have notes on the exact explanation.

My arm is freezing even when I am working or typing and especially when I am asleep.

I hated the circus and flashing lights and loud noise when I was a child. I ducked out of going to the circus with my kids... I suggested they go with their Dad just to spend time alone with him.
When my friends went to Rock and Roll concerts I was not allowed to go and, as stubborn as I was, I never fought my Mom on it. It was a great excuse not to go with my friends without feeling silly. Because I did not understand why I disliked being in large crowds and at concerts it just made me so uncomfortable. Now I understand. Of course over the years I avoided them and as we mature it is acceptable to say we just don’t like them. But as a teenager who loved music it was more difficult.

And this is all bpi related.
I wonder if the lights and hating the flashlights at night is related to having T1 injured causing Horner's? At the bonfire I had to get my husband to stand next to me to block some of the lights. I wanted to have a melt down but am too old to do it! I found it quite overwhelming.

I understand that many of the children have the same problems and I was wondering if it is only the ones with Horner's or all of the kids?

Kath

[Francine_Litz]

kathleen - you just touched me in a big way by writing this.... I wonder if Maia's fears are NOT fears at all but what you are describing!!! (taking a deep breath!)

I guess I won't really know until she gets a bit older and can talk to me more about this.

[Dean-na]

Kath:

I wasn't able to go to camp (boo!) because I had the mod quad less than a month ago (YEAH!). I would of loved to hear that about the touching. I DO NOT want anyone to touch me on my right arm. Even when it is harmless. People will come up to me during a conversation & touch that arm & I just about freak out. It sends like electric pulse to my brain saying not to do that. I had a guy at work to slap (in a playing matter) my bpi arm. I looked at him & I told him if he ever does that again he will be picking himself off the floor. I may be 5' 2", but I don't think I would of had a problem doing it.

The lights, I am very sensitive to lights. I wear glasses that have the no reflection stuff on it. At night the lights just about blind me. When the eye doctor looks into your eyes with that bright light, that sends me into orbit.

Sounds? Well, being that I have 2 loud kids don't seem to bother me like the other 2 above. If someone was to make a sharp, unexpected noise then that bothers me a lot.

Thanks for the info!!

Deanna

[Andrea53]

Thank you!!I have bpi in both arms but can use hands some.Touching on my left only bothers me at certain spots but my right upper arm is very sensitive.My mother playfu;lly hit my rt arm and I ye;lled.Her reply was she thought I had no feeling because it's numb.It felt like an electric shock.I'm 50 and i'm still teaching my mom about bpi.Thanks again.

[Judy-T]

I never knew that my arm felt cold until my daughter told me that my arm felt nice and cool to lean against(it was a very hot day). I also experience pain when my arm is touched. Some people think we are whimps,I was beginning to think that also until Dr. Belzberg's talk.I learned so much from his session. Today I am in extreme pain.Wish I had some meds to help. I will probably drink myself to sleep tonite. Guess I will have to write another ode to pain.

[phaliscak]

My son Michael is 6 yrs old and has ROBP. C5 C6 and C7 were injured. He has always hated loud noises since the day he was born and will cover his ears whenever there is a loud noise. As far as feeling pain or cold? No. His blood pressure is a little lower than the other arm, but thats about it.

Patty

[Kathleen M]

Julie

I think it is sensory intergration. I know that I hated crowded place and would cry... being moved to the outside of a crowd really helped when I was little... this seems a little odd to write about now because most of these problems are so far in the past. Camp was the first time in years I was exposed to night light with flash lights etc... and it was such and odd feeling...

I come from a very large family of aunts, uncles and tons of cousins besides my immediate family so I guess I had no choice but to outgrow it. I also had three children and all were teenages at the same time... soooo.... I got use to noise.... now I have 4 grandchildren and two of them are 2 year olds... Lots of noise in and around me all the time... I had no choice but to get over it.

But I did avoid taking my kids to circus and things like that... One Star Wars movie and the next few my husband had to take the kids... again the lights... but I never realized it had anything to do with my eyes or bpi -- I just thought I did not like dark movies with flashing lights and that was OK...
My kids use to laugh because for 15 years we had a beach house... but I hate sand and could not stand sand on me expecially if I was wet... even the babies first lesson on the beach was don't touch me with sand on you... LOL... how they loved to make fun of me for being so finiky about sand... now I know why...

We out grow it or work our way around it and many people have lots of little quirks. I don't usually talk about mine because they are no big deal... well except for the touching of my arm... Its just that this information is important not only for the new obpi who find the message boards but for parents to help understand the kids reaction to touching their arms.

Kath