I am aware of that. But it's always good to note that there are alternatives. And my point is, it is up to doctors to decide, not for patients to demand. Besides the fact that we need to be advocates for our own health... it still is up to your doctor.

We have to agree to disagree. My PM doctor praised me for "owning my disease." He said that the people who take charge of their disease are the ones who improve. Frankly if I had left it up to the doctors I saw I would be in pain trapped on aero bed in my den.

Btw, Aqua Therapy is one of my favs.

Hi Tata, I hope what you need isn't getting buried in here too badly. We seem to be getting a little off-topic.


CRPSbe,

Tata specifically asked about LDN as a possible treatment. We are supporting her by sharing what we know. I don't know why this offends If posts on this topic really bother you maybe it would be better to ignore them.

Yes, Bio raves about LDN. And why not? It has helped her tremendously and is a non-invasive, inexpensive, non-addicting, low side effect profile treatment with research behind its efficacy. I'm glad there is something positive for Tata to hear about it. I wish we had more treatments like this to hooray about.

We do talk a lot about different options. However, we have our own bias because if something is working for us it is often the result of a lot of trial and error. We are limited by being able to share what we know personally and what research we've encountered. Naturally the same things are going to come up again and again.

As for CRPS being "very" disabling. There is that possibility for sure, but the statistics support improvement in the majority of cases. I fully agree it is a difficult disease but I hope sharing our knowledge with each other helps us all achieve the best possible outcome.

Hugs to Tata and thanks (we get a little carried away sometimes)

That's why I think it's important to talk about all of it, to give someone options and *perspective*, even if they're "focused" on one thing. Which is not what was happening in this thread, so far.

I know a few people for who the disease was with them for the rest of their lives, and that is a handicap in and of itself.

For me it is very disabling, yes. I have it in 4 limbs. I mean... 2 are totaled and beyond repair, and for 2 help was in time and treatment was successful (but I still need to be careful and alert *every single day* as treatment goes on).

BTW, BioBased, thank you for the info on LDN!

I like you very much as you are very common sense. I am hoping Tata got my response to her as I am just starting LDN last thursday and am new to the group. I started at 1.5 mg and am hoping to move up 0.5 mg every 10 days. My GP got on board and it is being compounded locally with Avicel filler (filler is important for fast release). No bad side effects yet. I also started compounded DMSO 50 percent with rose oil for scent (it can be smelly) on my hand 1/2 teaspoon up to 5 times a day). My hand is less stiff and painful for a small amount of time when used. It will give a faint taste of garlic in mouth. If used don't rub in let it absorb into blood stream for at least 20 min and wipe off excess. This is what I am doing so far in my journey aside from PT and constant movement and just started mental health therapy.