Although he does not have CRPS (Complex Regional Pain Syndrome) resulting from an injury or procedure, I found some interesting information about an experimental treatment for this in Italy using osteoporosis medicine as an off-brand treatment.
It is only available in Italy at this time, however, from what I've read. Thought I'd put this out there, because some here are suffering terribly with this.
posted
Thank you for this. I will pass it along to others.
I hope you find help for your son!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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Rumigirl
Frequent Contributor (1K+ posts)
Member # 15091
posted
Thank you hopingandpraying for posting those links. Thank goodness your son doesn't have CRPS! Are you sure though? I have no idea, of course, I only say that because CRPS is so terribly misdiagnosed. Gee, where have we heard that before?
I was interested when that research came out, but it apparently only worked in people who have just recently acquired CRPS, and only CRPS Type 1, that is without nerve injury. So that leaves me out plus all of us who were misdiagnosed until we had passed the early window when treatment is most effective. Again, where have we heard that before?
BTW, last night I emailed the people in your link who posted in the UK in 2016, but no response yet. I wanted to know the experience of the people who had it long-term and went to Italy for the treatment. I think that if the response had been good there would have been more press about it.
hopingandpraying, how is your son doing? I presume not great from what you said.
Posts: 3771 | From around | Registered: Mar 2008
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posted
Rumigirl - you're very welcome. Hope it helps! Keep us posted if you find out any more information about this.
Thank you for asking about my son. Actually he is doing better, thank God, but still has chronic pain and fatigue, irregular sleep patterns and memory issues. He is being treated by a really good LLMD and naturopath (in the same practice) for several years now and has seen improvement.
The pain he is having is not from CRPS - hard to discern if it's nerve damage from Lyme Disease and co-infections, Bb in nerves, inflammation or a combo of all of these.
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