sunshinegirl..

i have rsd in my right foot and leg and i do know how hard it is everyday just to walk stand even one step was to much for me. i do not think you question was stupid, i too have asked questions about meds because i want to know is it to much or what works for you.. i want to have a good life i dont want to be siting on the couch all day because of pain. please dont leave this site, keep sharing becasue for me there might be something that you have done that i dont know about that will help me or someone else. take care michelle

Lisa,

I certainly didn't mean to be harsh or anything. I hope you didn't take what I said the wrong way. And I do know where you are coming from. It's RSD, it's mind boggling. You want some help, you need to talk about it...

RSD is hard to deal with, but flat-out questions about how much to take when serious medications come into play, are a big no-no IMMHO. You asked the question like that. We can't be expected to answer these kinds of questions. These are questions for your doctor. These aren't meds for a simple headache. Please please please go see your doctor until your meds are what they should be, and your pain is under control! That is the most important thing right now!

Does anyone want the responsibility of someone taking straightout advice about dosages given here to heart and upping or lowering their dosage with whatever it may bring about? I don't think so. I wouldn't want that responsibility. That's why it's up to Lisa's doctor. Is it wrong to say that?

Yes, meds are often talked about, meds are often compared, but not in this particular way when someone just plain asks what to take.

Yes Michelle I will stay with this site to keep in touch with u also. Do U have any tricks tips or anything to help my feet be more comfortable at worK??

sunshinegirl.. i wish i did .. for me i cant even wear a normal shoe i have to wear this boot .. it is a walking cast, i want so bad to wear normal shoes but my foot hurts so bad to put it in a shoe that i cant. my foot wont bend my toes and ankle are frozen and it is turning inward. i hope that it does not happen to you. can i ask how do you get your foot in a shoe? i walk with a limp now. do you? that it hard also. can i ask what do you do for work? are you on your feet all day?

Well I have had a good doctor or she has given me the right injections/ I don't have much swelling most of mine is the pain and osteoporosis in my foot. I guess mine isn't hitting me as fast as some of u. I have received probably 6 to 8 injections since nov of 2008, I can write them down and send them to u.I think 3 sympathetic nerve blocks for the foot and at least 3 epidural blocks for my back because of the pain in my lower back .I work 12 hours days at the most 4 days in a row, but on my days I work I don't drive my husband does & don't walk any further than I absolutely have to, but I still take the pain med and cymbalta and then on my days off I might sleep all of one day. Then the next day I try to do some housework and things, but the last 6 months haven't got much accomplished. I figure if I am still working, My husband should not be mad at me..I wear 2 pair of the worlds softest socks from Hanes and at least 1 super duty insole or maybe 2 if I have them and they will fit in my shoes.. At work I do get to sit when I want too. How long have u had your diagnosis.?? I have been buying a little bit bigger shoe. and At work I do have to wear steel toe shoes.. That really sucks!!

Hi. This is first an aside to michelles's last post. I too walked around for over 2 years in "ankle foot orthotics" that corrected for the bilateral injury to tendons in my feet on some gym equipment that resulted in CRPS in both legs, before a podiatrist of all people told me to get rid of them, that the immobilization of the ankles was doing me more harm than good. And he was right. Pain that had been regularly at a 9 by early afternoon was down to more managable levels.

So I worry about you wearing a fixed boot all day, especially where you report that your foot is already frozen. That said I realize that, in Idaho, you don't have the same luxury that I have in So Cal., to spend most of my days in sandles.

Now, to SunshineGirl and everyone else, a couple of general points that should be made about CRPS in the feet. First of all it's impossible to overstate how important P.T. can be: I didn't realize how much my feet had constricted into something approaching a fist until I was being worked over (gently) by a physical therapist. Something I can't recommend enough, just avoid anything that comes under the heading of "strength training" like the plague.

Secondly, there are a couple of somewhat novel treatments that SunshineGirl and others should be aware of. I've gotten great benefit in term of the worst of the deep "bone crushing" pain from period infusions of a drug called Zometa, which is a new and imrpoved version of Pamironate, in a family of drugs called bisphosphonates, originally used to prevent the uptake in the blood stream of bone tissue in patients with multiple myeloma. If anyone wants an article to show their doctor, take a look at "Efficacy of Pamidronate in Complex Regional Pain Syndrome Type I," Robinson JN, Sandorn J, Chapman PT, Pain Med. 2004; 5: 276-280, and available for free download off the RSDSA website at http://www.rsds.org/2/library/articl...e_Robinson.pdf. But a note of caution, it is associated with the death of jaw tissue in people who need serious dental work, like root canal, so I know that my pain doc. at least required a sign-off from my dentist, to the effect that I was in good dental health, before we could procede.

The second treatment -- one that I could never have because my RSD is bilateral -- is something called "Mirror Therapy and Graded Motor Imagery." For a quick summary, check out this piece written for lay people in the Spring 2008 issue of the RSDSA Review: http://www.rsds.org/1/publications/r...pring2008.html Basically, it involves putting a mirror between you and the "bad" foot, so all the brain sees are two matching "good" feet. You go through a series of exercises moving only the good foot, and people have reported remarkable improvements in only a matter of weeks. I know it sounds way too good to be true, but there's apparently a lot of deep neuroscience behind this.

Good luck!

Mike

Hey Mike thanks for all the info.. My pm doc did say to keep it moving and they think it is better to keep working if at all possibly, she did say she wanted me to lift leg weights for my ankles and feet.. I do my best but I get alot of flexion with a few stairs and graveled walking areas.. I think It has helped me in the long run.. I sure am tired when I am done working.. Ussually feel like a limp noodle for being only 46.. SSSSSHHHHH Don't telll anyone my age and I have been running 3 and 4 flights of steps for 20 + yrs until I broke my kneecap on concrete step going up it at work in 2005 and then had to have another bonegraft and then I fractured my other foot at the head of the metatarsals which really put me down..

i wish i had all of you with me in my home.. i need the strength to have someone put on a shoe for me.. my husband knows i hurt and he will see me cry and he trys to push me but then i yell at him and he will walk away, i have tried to put a shoe on every week i try but the pain is so bad that i cant, i sound like a big baby,, but it is really hard for me . and then my head takes over what if someone steps on my foot? what if i trip and hurt my bad foot? all of these things start going through my head so what do i do .. just put the boot back on and know that no one will hurt it. so got a question for anyone of you? who wants to come to idaho falls and go shoe shopping

So, so sorry to hear this. The thought of knowing that you have to go through that agony at a set time every workday must often be overwhelming.

There is one more thing though, and that's the use of topical anesthetics. If you've tried everything available over the counter, I can share something else with you. It's expensive, but some insurance plans will pick it up, Medco for one. It's a "compounded" prescription gel, which is to say that your pharmacist mixes it up for you, pursuant to your doctor's instructions. (Don't even think about going to the chains for this one, it's only done out of mom & pop operations.) Anyhow, the gel I use has as its active components the following: ketamine (10%), gabapentine a.k.a. Neurontin (5%) and lidocaine (5%). I don't have pain to speak of in the morning, but by the time I go to bed my feet are really starting to cook, and this takes it away immediately. According to the pharmacist, it should last for only 15 minutes or so, but it seemed to work for me longer when I was still wearing those awful AFOs. And no, I'm not aware of the ketamine in my system, at this dosage it's effect is purely topical.

This might be worth checking out. PM me if you need any further info.



Mike