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Originally Posted by Maria Rago
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
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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