Hi PainInFL,
I have CRPS in my eye and face, secondary to a severe eye injury that I sustained 10 years ago. It's not your typical CRPS presentation, as it did not begin in one of my limbs, but you can get CRPS anywhere in your body, and a few other ocular and facial cases have been reported previously.
I think probably the most important thing is to find a doctor who is really familiar with CRPS. It took me 9 yrs to get a diagnosis because of my atypical presentation, and in all that time I was placed on medication after medication which failed to help me, and only made things worse with side effects, etc. But then I finally found a doctor (anesthesiologist/PM) who specializes in CRPS. He got me off all of my pain meds, and instead started me on low dose naltrexone and IV ketamine and lidocaine infusions, and it has made a HUGE difference for me in terms of my pain and ability to function. The only downside is that the use of such treatments is not widespread, nor FDA approved. I have to drive over 5 hours every 2 - 3 mo to see my doctor for my infusions, and I'm constantly fighting with my insurance to get them to pay for my infusions (they seemingly randomly will pay for them some months, but not others). But the infusions, especially, have truly been a lifesaver for me.
I would be careful with the neurostimulator. I have had one for the last 6 1/2 yrs, and while it has been of some benefit, I was not warned about
nor prepared for the cost of maintaining the stimulator. Every time I have my stimulator adjusted or assessed (you are supposed to have it checked every 6 mo - 1 yr) I get a HUGE bill from Medtronics, which my insurance company often does not want to pay (despite having paid for the surgery, etc). Also, as you know, CRPS can spread, and surgery is often a trigger. I just went through this myself, as I had knee surgery only a few weeks ago, and my CRPS doctor was NOT happy about
it (I think I'm okay, but I'm not entirely sure). If you do have to have surgery again for either a stimulator trial/implant, or otherwise, there are some things that they can do pre and intra-op to help reduce the risk of the CRPS spreading, but you are still taking a risk.
As for herbal supplements, I have heard a lot of good things about
CBD oil. But unfortunately, they are making it illegal as of next month, as it is a marajuna derivative (which is silly, since it contains no THC, the psychoactive compound in marajuna, but that's the government for you). Please be careful with the turmeric. Most people are not aware, but you should not take it if you are currently taking NSAIDs (including aspirin) or steroids, as turmeric is a COX inhibitor and can cause toxicity issues when taken with other COX inhibitors (NSAIDs) and can increase your risk for gastric ulcers when taken in conjunction with steroids (hence why steroids and NSAIDs should never be taken together).
If you haven't already discovered, them, there are a lot of really good resources for CRPS online. RSDS.org and RDShope.org are just a couple of them.
Good luck. Hope you are able to find some relief! CPRS is certainly a horrible disease.
Skeye
Post Edited (skeye) : 12/18/2016 6:59:13 PM (GMT-7)