Hello -my daughter who is now 14yr has been living with RSD since 2006. She sprained her right ankle and from there brought on her nasty monster. She has been through a lot since then, loads of Dr's, many phys therapy appts., she has been unable to walk without a walker at one point, or even use her hands to write. This is truely something hard to watch your child go through every day.

Our latest issue, is she has been having more and more problems with her breathing and being able to take in deep breaths. Her ribs feel like they are broken, some times she has a hard to even swallowing (the feeling of something closing off). We have just spent the past 3 weeks in and out of her primary Dr's office with this latest issue. They tried her on an inhaler, thinking maybe its sports asthma, but that didnt help. Then they gave her steroids (the 5 day course) to take to see if this would help her pain. Now that she can no longer take ibuprofen (has allergic reactions to it). No help from the steroids. Took her to the ER with her having all the dizziness, lightheaded feeling, and the unable to walk straight sensation. They ran more tests, ekg, lab work, even looked up her echo cardiogram test she had done a week prior and more xrays. NOTHING they found! I just love when the Dr's come into the room and they have this look and then the words "there's nothing wrong with her thats showing up on any tests." Of course they are not well educated in the RSD area, so the most they can express is, there is a possibility that its linked to her having RSD. To follow up with her specialist.

To even see her RSD DR, it takes up to 2 -3 months just to get an appt. If we are lucky she will be able to get in by the end of the month.

My worry is, can people get RSD/CRPS in there internal organs? I have been re-surfing the internet again trying to read up on this disease and not finding much of anything that I haven't already read. If you can help explain it would be wonderful.

Thanks ~Karrie

Yes it can spread internally, I'm sure some of the members will explain more about that as they see your post.

how did her RSD spread pattern wise on her body?
it started in her foot?
did it mirror to the other foot/leg or go up the side to her hands/arms?

Does she have the swelling/mottling/color & skin changes/ extreme sensitivity to touch & breezes in the areas you can see?

Did she have an MRI that shows no issues at all going on with her spine?

I'm just asking as some of the symptoms you mention - hand use, breathing, dizzy, swallowing can also be symptoms of thoracic outlet syndrome (TOS)

Is she using the computer or video games a lot?
any previous car accidents/ sport injury/ falls?
How is her upper body posture?
Is her head /shoulders hunched or rounded and forward of the body?

Could she be having muscles spasms in the upper body or trigger points?

TOS is also very tough to get a firm dx on and many drs will poo poo it as they are not knowledgeable on it.

If any of that sounds like it might be a fit, an expert/advanced PT should be able to do a comprehensive evaluation for it - they have much more study of the body/structures than most MDs.

I hate to hear that someone so young has to deal with this.
I have full body RSD/CRPS. It started in my right shoulder.
I have breathing problems. The first time it happened my chest got tight and breathing was difficult. After going through all the test it was determined it must be from my RSD.
When I get anxious or eat a large meal I notice it a lot more. I get short of breath just holding my breath to wash my face.
For me it's been a mind over matter situation. I have to stop what I'm doing and concentrate on the quality of my breathing to help it improve. Sometimes at night when it's real bad I sleep in the recliner in an upright position.
I hope things improve very soon for your daughter.