It is so good to see you posting again, just so sorry you are having such a rotten time right now. I read the letter from your friend, it really addresses the issues of what RSD does to the body, but also to the mind. I can tell by your website that you have always had a lot going for you--I listen to the music -love the healing music!!! You still have so much to offer, I pray you can get past all this and on the path to feeling better real soon Do you know how Vicc is doing? We also miss his wisdom!! Healing prayers going up on your behalf Carose

sandra,
i feel that way when i see the doctor who cause my rsd. he told me to 'just go back to work'. did he not see the broken hip appliance he out in and the brace and the cane i was using and still am using??? he saw what he wanted to see. i was an intensvie care nuse, how do you go back to work like that? the people at the hospital said .. what is he talking about? you can't work! then off to Boston for a new hip i went, but the damage was done. i did write him quite a letter a few years after it was done. i got out what i needed to say about his lack of compassion after the surgery and how i hope he never does that to anyone again. but i was not so nice in the letter ... ha!

joan

Dear Allen,

I know you have discernment. I am so sorry you had some five and dime Doc., I really am. Hang in their and make sure you get one that took their oath seriously. Much Love, Roz

Hey Al,

That sucks! but I'm glad that you have emergency insurance, that's great! and that you are seeing a pain dr. Fingers crossed they help you! This pain is truly awful especially as it gets worse and worse and worse.. and as the stupid RSD spreads.

It is hard looking back. To think I am like this because of a fall. To forgive my friend that made it spread into my left side and who laughed after being told that it was now full body because it being that side. Who couldn't believe that the RSD osteoporosis was so bad in 6 months that just dropping something on my arm broke it. It's hard to forgive another friend that broke my ankles accidently after dropping me and who put me in the wheelchair, to forgive the dog bite that caused the flare that made me unable to eat, to forgive broken elbow that worsened the RSD (my sister and I had a fight) etc etc etc....

However, to go onwards we have to forgive, it's the only way I have found is to try and get peace. I still get angry going to hospitals where my pain was not adequately believed although the RSD was, to going to doctors that believe that stress all plays a part, or that to not cry means to not have pain. AGH! But life goes on and life moves on, maybe not the way we want, but things always work out good in the end.

Love ya babes

Froggsy xxxxxxx

Side Note to Frogga -

You speak of RSD induced osteoporosis. I've also heard you mention bone crushing pain.

I don't know if you tried it, but I've had about a 50% reduction on my deep bone pain following infusions of Zometa (zoledronic acid), which is in the pamidromate family, a class of drugs designed to inhibit the uptake of bone tissue into the blood stream in patients with multiple myeloma. (I thought that would get your attention.)

According to my pain dr. - a prof. at a local medical school - they don't have a clue as to it's mechanism in treating RSD, all they know is that it works. I may have mentioned this article before, but it's definitely worth checking out: "Efficacy of Pamidronate in Complex Regional Pain Syndrome Type I," Robinson JN, Sandorn J, Chapman PT, Pain Medicine. 2004; 5: 276-280, a copy of which is attached. See also, the attached copy of "Pharmacologic Therapies for Complex Regional Pain Syndrome," Mackey S and Feinberg S, Current Pain and Headache Reports, 2007; 11: 38-43, and in particulr the discussion under "Bisphosphonates."

I personally didn't gain any relief after my first infusion, but after the third in three months, things got much better. The only downside is that you can't need or anticipate having any major dental work done while you're on the stuff, e.g., root canals, where it's been linked to jaw necrosis.

I would definitely have that one checked out.

be well,
Mike

Attached Files

	Efficacy of Pamidronate in Complex Regional Pain Syndrome Type 1 - Robinson.pdf (90.5 KB, 77 views)
	Pharmacologic Therapies for CRPS Mackey and Feinberg - 2007.pdf (114.4 KB, 127 views)

Thanks Mike!! Is this the same as pemidronate? I had it to start with and it wasn't useful but hey, I can try again. It sounds awesome! The bone crushing is so hard to handle isn't it? I will attempt to get my PM dr to LISTEN! (Well, new one in.. October... so fingers crossed!!!

Love ya and thanks sooo much

Froggsy xxxxxx

Hi Allen,
Sorry to hear that you are having such a tough time. I know about the breathing and having to get your feet up. I want to spend more time on the computer and physically can't. I think alot of us can sympathize with you there. It was a physical therapist that caused the spread for me. I'm in CA and was encouraged to sue. The attorney dropped the case at the last minute and is now suing me for outrageous expenses.
I hope this new doc can do something that gives you some relief.
Linmarie

Dear Frogga -

Yes. Zometa is a pamidromate. My apologies for putting in the wrong article in the first post: I confused zoledronic acid [Zometa] with Zicontide [Prialt]. (I guess there are many reasons why I'm not allowed to write script.)

Anyhow, I corrected the last post and attached a couple of articles to it. Check them out when you can.

Mike