Reflex Sympathetic Dystrophy (RSD and CRPS) Reflex Sympathetic Dystrophy (Complex Regional Pain Syndromes Type I) and Causalgia (Complex Regional Pain Syndromes Type II)(RSD and CRPS)


advertisement
Reply
 
Thread Tools Display Modes
Old 07-10-2011, 12:53 PM #11
elijjennings elijjennings is offline
Junior Member
 
Join Date: Apr 2011
Posts: 64
10 yr Member
elijjennings elijjennings is offline
Junior Member
 
Join Date: Apr 2011
Posts: 64
10 yr Member
Default

I also have a VERY hard time with loud noise. It sets off my RSD ALL THE TIME. Having two young children in the house isn't a very quiet environment, so I have to spend lots of down time in a seperate room. Interesting to know so many others are also affected. I wasn't able to attend the fireworks, but still the booming sounds (as they are fairly close) really bothered me.
Wish you the best,
__________________
Eli

.

.
elijjennings is offline   Reply With QuoteReply With Quote

advertisement
Old 07-10-2011, 06:48 PM #12
kathy d kathy d is offline
Member
 
Join Date: Nov 2006
Posts: 327
15 yr Member
kathy d kathy d is offline
Member
 
Join Date: Nov 2006
Posts: 327
15 yr Member
Default

Hi Eli,
I was wondering since you have two small kiddies in the house...would some type of ear plugs help you?? I know I can hardly handle one child (kids have so much energy) but two wow...you have your hands full. Just thought maybe it could help you out AND allow you to spend time with your family. It is soooo hard when they are small and then to have rsd is just a nightmare. Good luck.
kathy d
kathy d is offline   Reply With QuoteReply With Quote
Old 07-11-2011, 01:46 AM #13
hannah1234 hannah1234 is offline
Member
 
Join Date: Jul 2009
Location: Los Angeles, California
Posts: 280
10 yr Member
hannah1234 hannah1234 is offline
Member
 
Join Date: Jul 2009
Location: Los Angeles, California
Posts: 280
10 yr Member
Default

ohhh man rsd... welcoming the joys of RSD into life. Loud noises... sometimes I cant even handle when people talk at a certain pitch. I say shhh and make them talk in a lower tone because it just huuurts me. This happens on a daily basis of me telling people to talk quieter, to talk in a lower tone of voice, to turn music down- so frustrating because its like i go into caulastraphobia if it doesnt stop NOW. I cant do fireworks, the rumblings, the loud noises... the everything... yep. you arent alone!
hannah1234 is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
cindi1965 (07-12-2011)
Old 07-11-2011, 10:23 PM #14
kathy d kathy d is offline
Member
 
Join Date: Nov 2006
Posts: 327
15 yr Member
kathy d kathy d is offline
Member
 
Join Date: Nov 2006
Posts: 327
15 yr Member
Default

Hi Hannah,
Boy do you sound just like me haha. I am glad to hear from everyone else's postings that we are all in the same boat together. I tell people to lower their voice, others want to come up and hug you and it hurts so bad when they do esp now I have rsd AND neck and back damage. I had graduation party a few weeks ago and just could not do it as I had one the week before and barely made it through about three hours there. It was horrible and how much pain we have to deal with afterwards...most of the time (if not all) it is just not worth it to me to go out at all. I have a hard time with driving in the car. By the time I have all the pillows to sit on and blankets in the winter months it is a mess. I have tried to explain to everyone how voices, or any sound/vibration hurt me and they so "Oh." Then look at me puzzled as they just do not have a grasp about what we go through. I guess it is hard for most people to understand it since they have not experienced it and how everything we hear or feel makes us feel worse. Oh, the lovely side effects of rsd haha. Hope everyone has a quiet and calm evening.
Take care,
kathy d
kathy d is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
hannah1234 (07-11-2011)
Old 07-12-2011, 01:48 AM #15
daniella daniella is offline
Magnate
 
Join Date: May 2007
Posts: 2,998
15 yr Member
daniella daniella is offline
Magnate
 
Join Date: May 2007
Posts: 2,998
15 yr Member
Default

Quote:
Originally Posted by kathy d View Post
Hi Eli,
I was wondering since you have two small kiddies in the house...would some type of ear plugs help you?? I know I can hardly handle one child (kids have so much energy) but two wow...you have your hands full. Just thought maybe it could help you out AND allow you to spend time with your family. It is soooo hard when they are small and then to have rsd is just a nightmare. Good luck.
kathy d
Like I said I wear ear plugs again basically all day. I am not wearing the wax ones which are better but I think were causing ear infections. The foam ones are not as good. The issue though is I seem to be getting more sensitive to noise since I have been wearing them so much. Just thought I would add that.
It seems the RSD does the opposite such as I can walk less,see less,yet hear more where it is painful the noise. Hope everyone feels better
daniella is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
cindi1965 (07-12-2011), SandyRI (07-12-2011)
Old 07-12-2011, 11:55 AM #16
cindi1965's Avatar
cindi1965 cindi1965 is offline
Member
 
Join Date: Jul 2009
Location: West Virginia
Posts: 375
10 yr Member
cindi1965 cindi1965 is offline
Member
cindi1965's Avatar
 
Join Date: Jul 2009
Location: West Virginia
Posts: 375
10 yr Member
Default

Thanks for posting this as I drive my family nuts when they make certain noises. They look at me like I have lost my mind. I cannot tell you all the sounds that make me be in excruciating pain.
cindi1965 is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
SandyRI (07-12-2011)
Old 07-12-2011, 03:02 PM #17
SandyRI SandyRI is offline
Senior Member
 
Join Date: Dec 2008
Location: Rhode Island
Posts: 1,056
15 yr Member
SandyRI SandyRI is offline
Senior Member
 
Join Date: Dec 2008
Location: Rhode Island
Posts: 1,056
15 yr Member
Default

My ears are a holy MESS - loud noise makes me nuts. Its become one of the worse problems with my RSD. I have the foam ear plugs, they are a hideous blue green color. I need to get new ones and can't find any that I like. Any suggestions on where good ear plugs can be purchased would be appreciated.

I find that I can watch archived TV shows and movies via Netflix most easily on my IPAD, because I have my own volume control and there are no commercials (which anyone with sensitive ears can tell you really ARE louder!!).

Ketamine has helped some - I am somewhat better after my infusions. But nowhere near all the way better.

I HATE leaf blowers, garbage trucks, FEDEX drivers, school buses, lawn mowers, screeching children, cars that drive by with their radios turned all the way up, people that talk too loud, loud TV's at night, etc etc. I can't do loud parties or bars and most restaurants anymore. Quiet dinners with my friends are about it. But I'm usually too tired for much else anyway so that works!!

I have heard that one of the seizure meds might be effective for the ear nerve sensitivity (I forget the name, it's not one of them that we commonly take). I already take Topamax, which I know I need because when I tried to wean off of it I started getting migraines again. I really don't want to take 2 seizure meds at the same time - imagine the kind of zombie we'd turn into!!

Take care, Sandy
SandyRI is offline   Reply With QuoteReply With Quote
Reply


Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is On
HTML code is Off


Similar Threads
Thread Thread Starter Forum Replies Last Post
Has this happened to anyone else?? Ms CJM SCS & Pain Pumps 19 03-06-2011 11:11 AM
the strangest thing happened pud's friend The Stumble Inn 12 09-06-2009 07:39 AM
Funny thing happened while making dinner tonight suzyqz_2007 The Stumble Inn 22 04-01-2008 06:09 PM
A funny thing happened to me..... Megan Peripheral Neuropathy 1 10-03-2007 08:33 PM
Ruling may unlock key data on doctors...A Good Thing or a Bad Thing? Stitcher Parkinson's Disease 0 08-31-2007 06:54 PM


All times are GMT -5. The time now is 11:51 AM.

Powered by vBulletin • Copyright ©2000 - 2024, Jelsoft Enterprises Ltd.

vBulletin Optimisation provided by vB Optimise v2.7.1 (Lite) - vBulletin Mods & Addons Copyright © 2024 DragonByte Technologies Ltd.
 

NeuroTalk Forums

Helping support those with neurological and related conditions.

 

The material on this site is for informational purposes only,
and is not a substitute for medical advice, diagnosis or treatment
provided by a qualified health care provider.


Always consult your doctor before trying anything you read here.