Hi all,

I do have osteoarthritis and osteoporosis in this foot so it could very well be a mechanical issue of some sort. It's not like me to go to emergency but the pain was rapidly firing every 10 seconds or so for over 24 hours. It feels like I have broken something as I have a horrible time with weight bearing especially when it's cold. It has calmed down somewhat today but it's still coming on strong even at the most unexpected moments.

Mrs D, I had an x ray yesterday but the emergency doctor didn't think there was anything significant, just sent me home. Fortunately he did order a bone scan and that should tell us if this is a mechanical problem or not. I'm to call tomorrow to get my appointment booked.

Mike, I waited 6 years to have my screws removed, scared about the possible worsening of my RSD too. Ultimately they just were working there way out on there own as they became loose causing more havoc making it much worse in the long run. I wished I had acted sooner because possibly they could gotten all of them out. There are ways to manage the potential RSD flare from this type of procedure. Give me a shout if you decide to go through with having them removed. Thanks for the tip on the Voltaren Gel, I'll ask my doctor about that when I see him.

Hi Ada, I don't think we can get lidocaine patches up here but I will ask about them too. I do get lidocaine infusions, had one last Tuesday but it's not helping this time around.

It was once recommended by a consult doctor that I could try methodone. He says he's had great success with it, basically that is the primary drug he he prescribes for pain management. I'll go there if I have to but I want to see what the results of the bone scan are before I get into trying any new drugs. I'm glad to hear it is helping you.

Thanks all for your and suggestions. We have such a great group here, I feel very blessed to have your support.

MsL

Hi
I wish you well on the bone scan,,I had one done,but all it showed was alot of hot spots thru out the body,,all my dr's looked at the scan and did nothing,,the pain med dr,wanted to send me to see a reheumatologist,,but my insurance said no,and i was kinda glad,,I thought it would be a wasted trip,,I have a lot of hot spots in my ankles and feet,heel area too,,i believe its the rsd,,,Trying a different set of meds may help ,or you may end at the same place later on,,,but everything is worth a try,,Im glad that your moving and exerciseing,,and my faith is that God will lift you up out of that chair,, 1st peter chapter 5,,,,,,,,,,,,keep us posted ,you are in my prayers,,,bobber

I have what you are feeling in both my shoulders & arm i'm on oxy but find it does nothing for that kind of pain i use Darocet for this that what the ART doctor said to use they are fing out some poeple bone pain that the oxy does't work also try to get nerv blocks and see if that helps when i have a bad bad i also will get a shot of Trodal and if that does't work i will get morphine and viseral sorry for the spelling guys hard to think having bad night

Hi MsL,
I have a consult next week with a Dr. to do a nerve block. My neurologist told me it should help with the pain in my feet. I was reading the posts and see you have had them in the past with good results. It may be a good idea to have them again. I don't have the deep bone pain in my feet just the intense burning. I am hoping the block helps if he decides I am a candidate.
I hope you find some relief.
hopeful

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!

Dear Mslday -

Recalling our dscussion a couple of weeks ago in your Fear and Funtionality thread, http://neurotalk.psychcentral.com/thread103593-4.html, I would once again endorse the use of Zometa as the ONLY effective treatment I have have for the previosly debilitating "deep, bone crushing pain" in my feet. (Please see my Post No. 35.) That said, I recognize fully that you had a different experience with Pamidromate. (Post No. 33, above). Nervertheless, as set forth in my post, the two are different drugs with different risk profiles. I would strongly urge you to discuss the relative merits of Zometa with your physician.

A link the the FDA approved U.S. prescribing information sheet for Zometa is included in my prior post: please note that it bears little resemblance to the risks of Pamidromate to which you had referred/linked. Once again, only your physician is qualified to speak on whether a severe reaction on one drug would preclude trying the other.

And for what it's worth, I found out yesterday that my insurance company's prior objections to the use of Zometa were being overridden, and that I had the green light to proceed with further treatments, subject of course, to getting a clean bill of health on my kidney functions.

Mike

Dear MsL,

I use Voltaren gel on my head and neck when I have severe head pain, especially later in the day and during the evening, or when the weather is cold, wet and rainy (like right now). I like it a lot and think it helps calm down the pain. It is fortunate for me that my hair is short!

Methadone was prescribed for me back in May when I was suffering from severe head pain and Percocet alone wasn't touching it. My initial dose was 5mg 3 times a day. It made a HUGE difference in my pain. I am currently dosed for up to 6 5mg Methadone a day if I need them. A pain doctor I saw in NYC told me that, in his opinion, Methadone is one of the very best drugs for RSD because it works on your NMDA receptors, or nerve pain.

Let us know how you are doing. Hopefully your weather is better than what we are forecast to have for the next 4 days in the NE USA.

Good luck and take care, Sandy