First, an update.
OK...so, having been ignored by my previous doctor concerning my suspected RSD spread (burning up both legs and in face/neck/throat), I went to another pain doctor. He was much more alarmist than the first guy, ie talking about eventual amputation, but he still didn't think that mine was spreading. He said he didn't consider it spread unless it physically manifests with stuff like swelling and whatnot. I mentioned the discoloration, which unfortunately was not evident while I was there. He seemed really big on invasive procedures like sympathectomy, which I had the impression was an old and risky procedure (if anyone else has contrary information I'd be curious). He did give my lyrica, which I am now taking. No obvious effect yet but I'm starting at only 75mg (to be increased to 300mg).

Additional symptoms have manifested themselves. I momentarily forgot my precautionary hot-food ban and wolfed down a couple of moderately hot brussels sprouts, and my mouth acted like it was burned afterwards ( I honestly don't know how hot it actually was...it had been sitting for several minutes...but...) It's hurt for the past 3 days, kind of in a buzzy rsdish way, and there's been renewed burning in my face and neck. My mouth also reacted against cold water- it felt numb and frozen even though it was just cold tap water, and it felt like parts of my mouth and face contracted and tightened as if blood vessels were constricting.. And just yesterday night, my hands actually felt "burned" after I washed my hands as usual with warm water, and they still hurt today. They also look all reddish and discolored. In fact my whole body looks just a slight bit discolored. My leg felt like it had brushed a giant icecube when it rubbed up against the cold bath-tub this morning.

On the bright side, if someone says, "would it kill you to take a shower once in a while", I can honestly say, "it might".

YOu can see why this all makes me a little nervous. I'm actually panicking less than I would have expected. My positive theory is that my nervous system is just overexcited or something, in the way that a normal rsd sufferer is vulnerable to spread because of new injuries elsewhere in the body, only maybe to a higher degree. The research seems to indicate that RSD effects the entire nervous system even if the effects may be only in certain places. In my case it may just be more effected than usual. I dunno.

To make things more confusing, my suspected RSD spread symptoms had been improving for 2-3 days before the sprout incident (maybe just the pain med kicking in finally?). My legs haven't bothered me much for a few days now. And my mouth seems to be gradually improving. I'm getting very sick of lukewarm food and water though.

Anyway, getting to the actual question: My last pain doc was really big on nerve blocks. I'm willing to try, but it seems uncertain if it would help someone as bad as me. I understand they work best with newer or mild-stage cases, and that past6-12 months, or in more advanced stages, they have much less success. If I do have full-body RSD, which admittedly is not for sure although it looks quite possible, would a nerve block have a chance of helping? Or would it risk making it worse, since essentially it is sticking a needle in your spine isn't it? IF the RSD has spread to the whole body, what good does shutting off one part of the sympathetic nervous system do?

Having exhausted the supply of pain docs in town and not being entirely comfortable with either of them, I'm thinking of trying either Mayo Clinic in MN(if I'm going to be bankrupted, it may as well be by the best) or the University of Iowa hospital, which has a program for uninsured broke people like myself.

Anyway, sorry I rambled on like that....

Hey there. Not to worry, sorry you're feeeling so uncomfortable. If it's any consolation, the 2nd and 3rd year of my CRPS were the worst, by far, which sounds like where you've landed. In time, the pain seems to lesson up a bit, or it did for me. Then again, the periodic infusions of Zometa from my pm doc didn't hurt either.

As to the questions you pose, there can definitely be a point of deminishing returns with blocks. For a short article written for the lay reader, anand published last years in the RSDSA review, check out "Clinical Q & A: Can there be too many sympathetic nerve blocks for the treatment of CPRS?"
by William E. Ackerman, III, MD, at http://www.rsds.org/1/publications/r...inter2008.html

And as far as pain treatment at the Mayo Clinic is concerned, while I grew up in Rochester and my parents still live there, I've been badly disappointed on the two occasions I've gone back to be seen for the RSD/CRSP: as opposed to virtually any other health condition. Without boring you on all of my personal details, it was made clear to me that last time I was there that the only way they would actually treat me was if I lived in the immediate area, so they could follow up with me on a regular basis. (This was in 2006.) That said, throughout Southern Minnosota, Western Wisconsin and four communities across Northern Iowa (Armstrong, Decorah, Lake Mills and Waukon) the Mayo Clinic has small wholly-owned feeder clinics, known collectively as the Mayo Health System. Here's the webpage for the Iowa clinics: http://www.mayohealthsystem.org/mhs/...MHS&stateid=IA and the homepage of the Mayo Health System is here: http://www.mayohealthsystem.org/mhs/....cfm&orgid=MHS

If one of these four Iowa clinics is close by, you just might qualify for Mayo Clinic pain treatment as a local, through the Division of Pain Medicine, which I was advised the last time I was there could include "low dose" ketamine, either on an outpatient basis or in a 5-day inpatient infusion, more likely than not starting with an in-patient lidocaine infusion, assuming that you don't have any conflicting health conditions, primarily problems with your heart. That said, here is the webpage for the Mayo Clinic's Division of Pain Medicine: http://www.mayoclinic.org/anesthesio...t/painmed.html As you can see, it's pretty conservative, and apparently relying significantly on it's behavioral pain therapies and chronic pain management programs (a 3-week program not unlike that of the University of Washington in Seattle that attemp to teach techniques of simply dealing with chronic pain without resort to opioid medications (a famed peripheral neurologist at the Clinic, Peter J. Dyck, MD has for many years been a real hawk on the use of narcotics for chronic non-cancer pain) as well as listing two other techniques which have now become somewhat controversial/disfavored, chemical denervation and radiofrequency ablation.

To be entirely honest, and in light of my own personal experience, were I reborn in your shoes, I might think about the Cleveland Clinic instead. For some information on that I put up the other day on that, under the "Radio Frequency Injections???" thread, you might want to check out my post # 12 dated 10-24-09 at http://neurotalk.psychcentral.com/thread105973-2.html

Good luck sorting this all out. And feel free to keep firing away with any and all questions, that's what we're here for.

Mike

That is helpful. Kind of leaning towards University of Iowa because it would be free and I have relatives I could stay with. But the Cleveland clinic looks very good, and I suppose being thousands of dollars in debt and being cured is better than being a debt-free cripple.

Anyone familiar with clonidine patches placed over ths spine? Was reading about them on Dr Hooshmand's site- he seemed to think they were a non-invasive substitute for a nerve block. Probably not as effective, on the other hand, considering my upper body is so sensitive I can't even eat hot food or drink cold water without getting an RSD-like reaction, I'm a little nervous about the consequences of any invasive procedure.

I hope that you are feeling well enough today to take a little joke..........




That's what you get for eating brussel sprouts....ewwwwwwwwwwwww !!

I'll have you know, they were garden-grown sprouts with sauteed mushrooms- actually very good. But yeah, most sprouts aren't that great. Canned sprouts are terrible.

Don't apologize!!!! Good God, sounds like we had the same guy. Obnoxious with nerve blocks-in 3 years with the total lack of care, and when you do get it, everyone is angry with you, as if you had some kind of planning in this, scream at you that you are medicating with opiates (uh, what else is there, just curious, since Tramadol is garbage to my system-I lack chemical pathways necessary to process opiates, and for whatever reason tramadol does nothing when I feel like the fire of h*** is beginning to burn.

I got a "green" card for the CRPS pain. But when one has T7 to S1 grinding on bone on bone, a collapsed hip from a failed surgery, and the full spread has the highly painful atrophy screaming up my leg, and I am ready to smack (not literally, brother, like I need a cop at my door, for God's sake!

But say anything that indicates you are having less than a stellar day?

I hear Dr. Li, Seattle Pain is good. I am making an appointment ASAP.

For the bone pain, the opoids help me at times, but nothing takes it away. Good way to tell who is being honest about what IME.

Sorry if that felt like a dump folks, but I am sick of the ignorance that runs rampant, that when I see a hospital, clinic, etc? I am practically phobic.

They are twisted to take a body screaming "hands off" and never actually listen to what our body is trying to tell us. After I am done at the clinic, I have been accepted at Bastyr to see what naturopathic medicine can do for me. But toss them both? No, I think that both kinds are meant to compliment one another is all.

Kind of tired of feeling like a waste dump with what they give us to take, if that makes any sense?

Western WA? Huge thumbs down in RSD care. I don't dig the ketamine, but I had a lifethreatening reaction, so unfortunately I am not only facing a "morotorium on procedures" (Thanks doc!!! Genius as far as I see it!) and also a "No sorry" on NDMA receptor medications based on what happened following a brief trial of another when the ketamine put me in ICU for a night.

Sheesh, like what is left-scream for a cure, and I am one...but it hardly feels at times that anyone is looking too hard, and sometimes I wonder.