Hi, everyone! My 17 year old daughter has had CRPS for 4 years. It is in both feet on the outsides of the feet. She has managed it pretty well, but last march she got a new symptom which has not gone away. Whenever she hears low frequency sounds she experiences great pain in the sites of her CRPS. Since March she cannot watch tv, talk on the phone, hear a phone ring or text tone, and she cannot go in any stores or restaurants because they always pipe in music. This has been very isolating and sad because now her activities and where she can go are so limited. We were just wondering if anyone else has this symptom, or, more importantly, is there anyone who has been cured of it? We tried HBOT this summer, which helped her feet and functioning, but did not touch the sound problem. We were advised to do a ketamine infusion, which looks like the only option, so it would be helpful if anyone has had one and if you could share about that too. If anyone would rather share privately, feel free to *message* me Thank you so much! Wishing everyone here a beautiful holiday and ultimately the gift of complete healing. Maria Rago

I have problems with certain sounds...but not to the degree of your daughter...sorry. Unfortunately I haven't found much to help with this to prevent it from happening...just the same treatments I do for other flares AFTER it happens. The only thing that helps me somewhat is that I have an iPod with a playlist that helps (songs that don't cause flare up and drown out the bad sounds). If there are other sounds that work if music doesn't...then this could be an option (doesn't help much with socialization though if you have to have the buds in all the time...but would allow her to leave the house and just get out). I have to use ear buds for this to work though...just playing on a speaker doesn't help...not quite sure why?

Only sound and not any reaction to flashing lights? I still have some sensitivity but it was much, much worse when my pain was not being managed as well as it is today.

I went a pain psych doc that taught me some coping strategies when I was at my lowest point (I couldn't walk into a mall without feeling like I was in a pinball machine at the time). Learning to breath deeply helped quite a bit. She might want to bring ear plugs or if there is any type of music she can tolerate, she could use headphones--I struggle with repetitive deep bass or drums in particular, classical music or jazz doesn't bother me.

I still struggle watching commercial tv, mostly because of the actual commercials, but if I'm in a flare I do better with calmer programming even than simply watching with the commercials removed, and tend to watch period dramas because there are fewer cuts in the editing--and yes it's crazy to be that sensitive, but you adjust--PBS is much easier than MTV for me, but that would be rough on a teenager for sure.

It might help if you want to try at least once , Tibetan singing bowls ,somehow I got relax with it and don't need to listen the whole three hours ,just few minutes so see how you brain reacts ,fact is ,we are so tired and our brain is no longer in charge .
Take care and hope you feel better soon,love Jesika .
http://m.youtube.com/watch?v=KeCB8G98XFI

Sound is a trigger for me too!
Any loud sound does it. Even sometimes when my dog barks close to my head.
After the loud trigger my whole left arm, and sometimes my head and face on the left side, will begin throbbing and shooting with what feels like when someone hits their funny bone.
You all know that feeling. I've never figured out why it's called that!
Anyway, I was reading your post and thhought I would chime in...

I cant be around any loud bass. It hurts with every beat, or vibration. Havent found anything to work except to get away from the music. Sometimes those cars with big banging bass speakers cruise by and put the hurt to me.

Allen, I am so sorry that you are going through the same thing as my daughter. It is very isolating and scary. We hear a ketamine infusion may put her into remission so that may be helpful to you too. I hope you will both be able to get into remission. Sending you lots of compassion.

Hi Maria,

So sorry your daughter is experiencing this at an age when she would normally be out having fun without such serious concerns. I have CRPS2 and find my brain/nervous system is centrally sensitized to bass/loud noise, bright light, cold air, etc. I find like your daughter, I miss most social occasions because of my limitations or last only a short time. From a theoretical viewpoint it's worth remembering it's the brain that is oversensitized so reducing stimulation across a range of input modalities will likely increase the time her brain can tolerate input. A few suggestions ear plugs (not very social but I have been known to wear them with long hair over top to lower noise level), timing/increasing my anti convulsant doses (to help down regulate) prior to social/ noisier environments, avoid shopping centres weekends and keep visits short. They don't tend to have doof doof music playing early mornings or mid week etc. When I go to the shopping centre I wear dark sun glasses to reduce input from fleuro lights . Also I have thought it would be worth seeing an audiologist myself about having some specialist ear plugs made up like musicians ear plugs that block certain auditory frequencies. I think you can possibly buy some basic ones to try on internet. Also if you google auditory sensory desensitisation or something like that, some professionals believe you can improve it I think through gradual exposure to noise and music. Anyway, I have a rather noisy 10 yr old son who likes music and I can definitely vote exposure has not worked for me! I could loan him to you, but I'm in Australia...

Best wishes

Booklover

Reading is an activity that is calming. I'm guessing you experience this as well? I carry my nook with me and will find a quiet place to read if I'm overwhelmed in an environment.

I just wanted to also mention while my pain does increase it's not just a reaction to pain, it's almost like my brain is experiencing the fight or flight response.

And while I rarely eat out, when I do I tend to go when things aren't busy, because it's the people in the booth next to me rhythmically kicking, that I struggle with the most.

OP: Has your daughter tried swimming in warm water? It will reduce stimuli and it might really help her.