Originally Posted by ShellySC

Cindi- How is the Kratom working? I have heard some wonderful stories about it and would love to know if it has helped you. Thanks!!

Originally Posted by cindi1965

Hey Suz,
I too am into my 4th year with this evil disorder and it has also spread to my hips. I cannot stand any massaging on my lege because touch is so painful. I am also at my wit's end with doctor's giving me pain meds and I am now looking into herbal remedies. I know a chiorpracter who is also a neuro-herbalist and she is going to try some herbs on me this weekend. One of the herbs that she is going to try is Kratom. I has the same properties as an opiate, but is use to get people off of narcotics while helping with pain. I am very excited about it and I am so hoping that this will work.

Originally Posted by daniella

Hi I am sorry for your struggles. For me my rsd spread four plus years later too. Actually in the first year I had the least areas impacted. I also know I compensate from my rsd areas with other body parts which is causing problems too.
Have you had any treatment,new meds,etc to help?

Originally Posted by catra121

I find it so sad that so many doctors don't seem to want to cater their approaches to treating patients to the actual patient. It seems like they have their set of things that they like in terms of treatment options and meds and then that's it. Not all of them of course...but it seems to be the case with so many.

Sounds like you are at the point of looking at alternative treatments. I have gone off of most of my meds after they caused seratonin syndrome...that was a horrifying period of my life and there are large chunks of it that I don't even remember because I was so messed up. I've added a couple back in after going off of them all but I have decided that I cannot and do not want to rely solely on meds for pain relief because it just isn't the right option for ME...and I am worried about the long term effects of daily meds since I am only 28.

I find the TENS unit works well for me on my ankle. Doesn't work for everyone but it is a much better option for me than pain meds. Daily exercise and physical therapy has been very helpful as well and I do it all on my own now. I've heard good things about vitamin C infusions. And I am very excited to try tDCS treatment and hope I have even a fraction of the success that some other have had with it because it would change my life...so I would reccommend that anyone try it because it has little to no side effects compared to medications and invasive treatments (and it's far less expensive).

People have had success with chiropracters (though I would steer clear of NUCCA chiropracters personally because I think they are nuts and scam artists), acupuncturists, and massage therapists. Just remember that everyone is different so for every person who has had success with any of these things there are many with RSD who haven't. It's such a hard things to live with. I hope through trial and error (hopefully far less error) you will find some things that relieve your pain and RSD symptoms.

Originally Posted by cindi1965

Hey Suz,
I too am into my 4th year with this evil disorder and it has also spread to my hips. I cannot stand any massaging on my lege because touch is so painful. I am also at my wit's end with doctor's giving me pain meds and I am now looking into herbal remedies. I know a chiorpracter who is also a neuro-herbalist and she is going to try some herbs on me this weekend. One of the herbs that she is going to try is Kratom. I has the same properties as an opiate, but is use to get people off of narcotics while helping with pain. I am very excited about it and I am so hoping that this will work.