Hello all - Have had RSD since 2005, in my lower right leg with no transference or expansion, and as everyone suffering from this SOB disease, have had my ups and downs. I last posted in this forum after a horrible flareup last February. My truly excellent PM doc, Dr. Spagnoletti in Marlton, has been my partner is trying to give me back some semblance of my once busy and fast paced life.

I had my first lumbar sympathetic nerve block last March, which relieved the pain from my ankle to halfway up my shin. I went back for a 2nd block 5 weeks later and that took care of the pain in the rest of my shin. Shortly after, I started experiencing the strangest thrumming type of pain in both of my legs, which we fairly quickly tied to a herniated disc that I didn't even know I had. Two epidurals pretty much controlled that pain, along with a lower-dosage drug cocktail than I had previously been taking. Between the nerve blocks, the epis and the drugs (fentanyl patch 50mcg every 48 hrs, 15mg oxycodone plus 30s when I need them, SOMA for sleep when I need them), I've been pretty much controlled since last March. Until about 3 weeks ago.

That deep burning heaviness in the bone in my right shin started rearing its ugly head almost a month ago, and of course, at first I thought to just ignore it. Many of you know how this goes ... something works, and the pain is almost gone, controlled almost completely by pain meds, and there's that ever-optimistic part of my brain that dares to whisper "Maybe that's it, maybe we've got it, maybe my central nervous system has finally settled down and I'm on the road to full recovery." Alas, not so. But still, I tried to ignore it, until the burning got worse and the heaviness got heavier. We tried an epi because the thrumming pain came back with a vengeance 5 weeks ago, but not one iota of relief from that. So, on my monthly visit to Dr Spag, we decided I'd have Dr. Rosen (another incredibly sensitive and aware RSD doc in the Philly area) do another nerve block. I always get so scared before these treatments, not of the treatment itself, but that it won't work at all this time.

I've been out of work since last May, left a job where my boss was just a complete and total jerk. After the flare up I had in Feb 08, Dr Spag sent in family leave forms basically saying that RSD is a condition that typically doesn't allow the patient to forecast when the pain will be too bad to work, and they really didn't have any choice but to accept it. But the boss sure didn't like it, and took every opportunity to punish me for the time off, despite that my work was always done, etc. Finally, in May, it became clear I think to the big boss that I had gathered enough evidence to file an FMLA complaint, so they made me a good severance offer and I took it. After leaving the job, my stress levels went way down, and of course, so did the pain. I started an event planning business, and have had pretty good success, but it scares me to the core that the RSD will take this away from me too. I hate this disease, with a passion. It's not just the pain, as all of you here know. People who don't have it just can't understand. There are days, when I'm in flare-up, that I don't even have the energy to take a shower, let alone get dressed and put some make up on. I feel totally and completely depleted, and I can't string two intelligent and cogent thoughts together, let alone talk to a prospective client about planning the wedding of her dreams. And the specter that peeks around that corner is the very real possibility that I won't be able to make this business work, and I'll be back to trying to find - and keep - a full time corporate job. Truth be told, I'm really incredibly scared. Which leads to stress, which leads to not being able to get a good night's sleep for weeks on end, which leads to ... you guessed it, more pain, more brain-fuzziness, the whole RSD banana.

I do want to stress that, for those of you haven't tried a nerve block, it's definitely worth a try. The difference for me has been dramatic. I had my 3rd one today at 4, and for the first time in almost a month, am able to sit here and type this, keeping my thoughts centered and not having to keep scrolling up to see if I'm making sense. Right now, the pain is almost non-existent. The procedure is really simple, not painful (with the exception of minor discomfort at the injection site). As I said, definitely worth a try. Because I have a doc who listens to me, when I go in and say "It's bad" he immediately addresses it with meds or trigger point injections ... we have a conversation about what might be the best approach.

Early in my RSD diagnosis, I was on Lyrica. I'm glad to hear that it's working for some people, but it made me so sick, and did nothing for my pain. I got to the point on that drug that my critical thought process was completely destroyed. I couldn't drive into a gas station and figure out how to pull in so that the pump was on the same side as my gas tank. It was awful; I'll never go back there.

One other thing that I haven't seen in the posts I've looked at tonight that some of you may want to try is a topical cream that Dr Spag has been prescribing for a few months. I'd used topicals before with absolutely no effect (for instance, I have 2 boxes of lidocaine patches in my closet, that do nothing at all - NOTHING. Might as well put a wet paper towel on!). This new cream is called Glucosamine HCL/MSM VP-E5 10/10% 100GM. It's from a compounding pharmacy, Hill's, in Milford OH. A medium sized tube costs about $55. The doc faxes the compounding pharmacy a script, I call and provide my payment method and they send it via UPS. I was really skeptical, but this stuff REALLY works, even on the burning bone pain, unless I'm in an extreme flare up. I'd encourage RSD folks to give it a try, even if you've used topicals before that didn't work. Dr. Spag told me at my last visit that this pharm also has a morphine topical that he's seen pretty dramatic results with as well; the morphine doesn't absorb overmuch into the skin, apparently. If you'd like the address or phone # of the pharm, drop me an email.

So, that's my story. Sorry about the length, it's just been so long since I've shared anything with people who know what it's like, and once I started, I guess I couldn't stop ... til now ...

Thanks for listening!