[FaithMom]

Hi, I'm new here, just came over from another board. I recognize some names which is a nice start.

Our daughter was diagnosed with RSD at 15. She's been in and out of remission 4 times and is back in remission now. We've had good success with Hyperbaric Oxygen Therapy but she does continue to need repeat treatments.

Anyone have kids with RSD? Why are so many people getting this??

I'm sure we talked on another forum, it's not that so many more are getting it just that more are being diagnosed earlier but not enough,according to a paper published last May there may be as many as 460,000 un/misdiagnosed in the UK. Other countries are doing better at finding sufferers. In spain it is taught in medical school

[SloRian]

Hi FaithMom! It's so good to see you! and I'm SO SO glad your daughter is back in remission!!! My daughter is, too - the "booster" round of Calmare worked well.

Re your last question - my sister heard one interesting bit of info - there seems to be at least a loose correlation between RSD and electronics (not radiation, but rather how electronic use affects the brain's wiring). Anyway, it's not supported by any major studies yet, but both RSD and electronic use are certainly on the rise.

[FaithMom]

Hi, SloRian. I've been trying to figure out how to send you a pm but haven't figured it out yet, lol.

Yes, dd is ok now. YAY!! And your dd is too!! Another YAY!!

I haven't heard that about electronics. Do you have more info?

[SloRian]

I'll ask my sister next time I talk to her. She did hundreds of hours of research on the internet, and that's one of the things she came across. Not that we'll be able to take anyone's electronics away!

[ali12]

I'm 18 and have had RSD since I was 12. It affects my left leg, right arm and possibly back.

If you or your daughter ever want to talk, I'm here I know how stressful it is going through something so horrible at such a young age, especially when dealing with school, friends not understanding etc. I think talking to someone of a similar age who understands really helps sometimes

I hope your daughter is doing better

[Dubious]

Originally Posted by SloRian

Hi FaithMom! It's so good to see you! and I'm SO SO glad your daughter is back in remission!!! My daughter is, too - the "booster" round of Calmare worked well.

Re your last question - my sister heard one interesting bit of info - there seems to be at least a loose correlation between RSD and electronics (not radiation, but rather how electronic use affects the brain's wiring). Anyway, it's not supported by any major studies yet, but both RSD and electronic use are certainly on the rise.

Not sure that squares with Dr. Silas Weir Mitchell, the civil war doc who sort of put RSD on the map (not a lot of electronics in the 1860's)

[SloRian]

Originally Posted by Dubious

Not sure that squares with Dr. Silas Weir Mitchell, the civil war doc who sort of put RSD on the map (not a lot of electronics in the 1860's)

I was talking about what might be behind the increase in RSD cases

I'm aware of the Civil War doc's report - very interesting, and I'm glad that it has that long history - sometimes it helps people understand a little bit more that it's for real.

[Dubious]

Originally Posted by SloRian

I was talking about what might be behind the increase in RSD cases

I'm aware of the Civil War doc's report - very interesting, and I'm glad that it has that long history - sometimes it helps people understand a little bit more that it's for real.

I would think that because of increased awareness and changing treatment approaches, it is a little more up front on the diagnostic radar than it once used to be. The problem is that while all primary health care professions (MD's, DO's and DC's) learn about RSD/CRPS, it just is so rare in the bigger picture that it rapidly fades from the differential diagnostic considerations, especially from those who are not surgeons. Of course surgeons always knew about it as they would be one of the first to begrudgingly see it as it was sometimes associated with a testament of their surgical skills. I believe surgeries are up generally, so it might make sense that incidence of CRPS is up as well.

[cartee4613]

Hey! I am so sorry to hear your daughter was diagnosed at 15. I was diagnosed at 13 and am now 21 and know how hard the journey is. I tried the hyperbaric oxygen chamber and unfortunately had no relief. The fact that she is having a good reaction to it is awesome! I know how expensive the treatment is but with RSD if you have found something that works (even temporarily) I would stick with it!

Has she had any other treatments that helped her? Has she tried medication? I know for me Cymbalta has helped me more than any other med out there. My doctor told me the other day that with neuopathic pain like RSD that when they prescribe meds they are happy with even slight pain relief. She said a 30% pain reduction is considered a success. I hope you find this helpful and are able to keep your little girl in remission as long as possible!