Reflex Sympathetic Dystrophy (RSD and CRPS) Reflex Sympathetic Dystrophy (Complex Regional Pain Syndromes Type I) and Causalgia (Complex Regional Pain Syndromes Type II)(RSD and CRPS)


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Old 05-05-2009, 10:10 PM #21
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WOW "AintSoBad". I unfortunately know the deep, dark pain that you speak of and have NEVER read or heard or anyone that really understands the type and sense of loss that I have had to endure with this disease until now.
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Old 05-06-2009, 02:52 AM #22
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I'm very saddened to hear about your struggles and loss.
You've found a great place here though, and you'll get lots of support and friendship!
Although I've had rsd for 27 years, then a head injury a decade ago, (which unfortunately knocked the rsd into orbit), I still find it a challenge almost daily, to try live anything that might resemble a "Normal" life.
PM me if you like! We can talk more. I'd like that.

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Originally Posted by SCourcier View Post
WOW "AintSoBad". I unfortunately know the deep, dark pain that you speak of and have NEVER read or heard or anyone that really understands the type and sense of loss that I have had to endure with this disease until now.
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Old 05-06-2009, 07:07 AM #23
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For the liver i take a vitamin or supplment called Milk thistle it helps the liver clear its self of toxins... It might be worth taking i take it everyday 4 times day.. I dont want to hurt my liver and be on a list for a new one of those... Its scary.. i have also been told that liquid meds are easier on the liver... Its just a reccomindation... Maybe those things will help in my opinon 6 vicodin is not over doing it as long as you and your doctor are ok with it.. i have heard of ppl that take more... its just all on a personal basis..
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Old 05-11-2009, 01:55 PM #24
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Originally Posted by michelles View Post
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
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??
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Old 05-12-2009, 02:41 PM #25
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Originally Posted by SunshineGirl View Post
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?
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Old 05-12-2009, 04:09 PM #26
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Blush Dear MIchelle

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Originally Posted by michelles View Post
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!!
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Old 05-12-2009, 04:14 PM #27
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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
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Old 05-12-2009, 04:33 PM #28
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Quote:
Originally Posted by michelles View Post
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?
Quote:
Originally Posted by fmichael View Post
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..
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Old 05-12-2009, 08:03 PM #29
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Originally Posted by SunshineGirl View Post
Do u guys and girls think I am taking too much hydrocodone? I take about (6) 7.5/325mg a day while working 12 hour shifts and I was just wanting to know your opinion, it seems when i take it every 4 hours instead of every 6 it pretty much makes me comfortable all day. I was diagnosed oct 2008 and It is in my right foot. Thanks LISa

SunshineGirl,

Your question is one that we as patients ourselves can only make a personal guess at... You truly would have to ask your prescribing physician this question.

Please remember that no two of us with RSD are exactly the same and no two of us respond the same to medications or therapies.

I think it is GREAT that you are still able to work!!! I worked for quite a while before this monster went on a rampage and I could no longer stand, walk, or sit for more than 5 to 10 minutes with out my pain levels shooting to the point of me passing out. My RSD has spread bodywide---every inch of my body feels as though I've been left on an iceburg and received a 3rd degree sunburn. Millions and millions of cold hot poking needles per inch of my body, severe muscle tremors and cramping.

I WOULD LOVE TO BE ABLE TO HOLD A JOB... I've had top physicians tell me that this is no longer possible. This was and is a harsh reality for me... I have worked since my young teens and most times held 2 and 3 jobs at a time.

As far as clothes, shoes, and anything touching my body.... I forced myself to pretty much keep wearing the same clothes as I was pre-RSD... It is still very painful but I tolerate it better now.

As far as shoes... I can no longer wear a shoe that ties or is tight....I wear Crocs Mammoth---they are fuzzy lined. I wear socks from the Softest Sock in the World line.

I truly wish you the best and if you have any questions feel free to ask... I will do my best to help you out or direct you to the information you are looking for...


Abbie
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Old 05-12-2009, 08:06 PM #30
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just a gentle reminder that sometimes members can misinterpret what others are saying.

no one seems upset on this thread but rather just members giving their feelings related to the original question.

when it comes to strong pain meds, only a qualified physician can accurately direct as to the correct dose to take
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