Reflex Sympathetic Dystrophy Support Group

thanks everybody for the advice i actually did end up getting a 6th LSB shot, it was last week tuesday, the Saterday b4 i was feeling much better so i drove to the movies with a friend and that was it. From the start of it, once i got behind the wheel the RSD sstarted to flare up. Luckly i hadd a doc"s appemnt near by.

i Am having some good das and some bad days, i am not sure why it is like this.Maybe its bc of the wheather now that it is summer time. Every so often i get my hopes up and the RSD just comes and knocks me down.

About specking to a physcitist. My doctors, sister, pt people and my friends all think that it is a good idea for me to see one, its just that i cant go through with it. I went away this past weekend and had somebody push me around in a wheelchair and inside i felt horrible so ashamed of mmyself. i know nothing is wrong with this I just cant do it. so not specking to a physcitistrist is like the last bit of self empowerment i have left. and i dont want to lose it.

Hi Elliot,

I understand that you want to hold on to something that gives you a feeling of "power" or strength. I also understand the "shame" you talk about when talking about being in the wheelchair. I had to be wheeled from my daughter's wedding down a long hall to where the reception was being held, and I was the only person there in a wheelchair. I'd never been in one before and I don't own one. Well, it feels bad mentally. It feels like you've given up or you're different than everyone else. Is that what you are feeling? Elliot, if you saw me in a wheelchair would you think less of me? I don't think you would. Sometimes we just need things like that for a little while. And, sometimes we need them for a long time, but either way, it isn't anything about who we are. It's just a device to help us. Kids breaks their legs and use crutches and nobody thinks less of them.

Elliot, I've seen a number of psychiatrists over the last 12 years after my divorce. I went through terrible depression that sounds like what you are in. Depression is often a PHYSICAL illness, although it feels completely mental. Some people get terrible depression and find out it was really a thyroid problem that caused it. Some people have so much stress in their lives that certain elements get depleted that they need and depression follows it. Whatever the cause of the depression, and yours does sound pretty bad, it does not mean anything negative about you. Everyone who gets RSD goes through so many things and just the pain alone, that depression follows.

Think about what your family and friends want you to do. They love you and want you to be better. If it was your family member or friend that was depressed I know you would want them to get help. You don't have to go to a psychiatrist if you don't want to, but it could help you get medication that will help you feel better than what you take now. That's a good thing to do. Or, just go see your primary care physician. Talk to him about how you're feeling. If it helps, take someone with you. You deserve to feel better. You're a good person and deserve the help that someone can give you. Please think about it, OK?

If I was coming to this group this depressed, wouldn't you tell me to go get help? I hope you will see that the only bad choice you can make now is to do nothing. It all will start to turn around as soon as you'll decide to do something to get better. I do want you to feel better both physically and mentally. Take good care of yourself, OK?

gail

so i know that it is not a smart move that i am not going to see a physicatist. but for me this is the last bit of self control/pride/power i have left and i do knot what to give it up. I know there is nothing to be ashamed off. i know im not explaining it so clearly but im sure you under stand what it is i am trying to say.

on the bright side the overall pain has been decreasing week by week there are still some times where i have a few bad days in a row and i am begging to go to the kedamean treament but as of now i have the ability to walk around (still with my cane) and go places. people actually tell me that can see it in my face that im not in pain im able to smile i feel a little bit energized (and its not from a reb bull everyday time i go to pt i do a little bit more and more

oh i forgot to tell everyone i started to go to another PT guy. he had this crazy (painfully) concept. the idea was that since the foot/ankle/muscle/ligaments was all technically health there was no problem with the foot itself just the nerves themselves were out of control he wanted to get the nerves back on track by trying to show it that nothing is wrong (not that best explanation) so when i started to go to him he had me sit on a chair with my foot facing him just dangling in the air. (reminder my rsd is in my left foot) he would start by putting both hands on my left leg around midway between knee and ankle and slowly being to descend to my ankle he would talk to me ask me random question trying to get mind not focusing on wear his hands wear (did not work at all)and as he go like 6 inches above the ankle the pain started to build so i started to breath heavy and make so weird face holding the pain then he would take off one hand and place it on my right foot (which does not have the rsd) and kept on saying look how im touching it, im not putting any pressure, he would stuff like this over and over again. The pain would still increase more and more but after 25-30 minutes of being (i would call it) tortured i got sorta use to his hand on my leg not sure if i got used to his hand or the pain the next time i went he would do the same thing over and over again and each time he would touch more of the ankle then it became the heel and each time would require less time for me to begin to feel comfortable with he touching my foot. believe me this was hell but now im able to do so much more

i cant say for sure it was bc of him i still am going to my original pt guy and i also got some LSB shots and i pray that it continues to get better (i still cant wear a sock) but as of now the pain has become some bearable

Elliot, it sounds like the new PT with the "crazy concept" was practicing a form of "Pain Exposure Physical Therapy" (PEPT), a technique developed in the Netherlands. While controversial at first, it's rapidly attracting greater numbers of patients since it's so successful in reducing pain and restoring function, even with long-standing CRPS patients.

My web site has a section on PEPT on the "RSD Drugs/Treatments" page. The first publication from the group developing the technique, which explains the concept and documents the results of their first trail, is the first paper in the series. I urge anyone with an interest in this to check these out; to whet your appetite, here's a link to this first paper:

http://www.thblack.com/links/RSD/ ClinRehabil2009_23_1059_CRPS1.pdf

If I hadn't achieved remission, I would definitely look into this!

Howard

Hi Elliot,

I understand you not wanting to go to the psychiatrist, but maybe your pain doctor could give you something like Cymbalta that is an anti-depressant but also it helps pain. It would be worth asking about. And, I'm really glad to hear that your pain has been a little bit better. I read the paper that Howard mentioned and it is similar to what your pt did. I hope it continues to get better.

Hi Howard,

Wow, another post that is SO interesting. I don't know whether I feel excited or sad after reading the paper. The task of going through that, of getting off all of my pain medications and then adding to the pain sounds like more than I could bear. Yet I think of the outcomes of almost half of the patients who did really well and most of the rest were helped... it sure is tempting to find out how to do this and do it. I don't have a partner or anyone I could get to do it with me, however. Plus, finding a PT that knew what to do might be challenging. With my pain being lower extremity, the study talked about the lower extremity patients being able to walk 4k by the outcome of the study which is amazing! I don't know what I think about it!

I hope that others will read that study and say what they think about it. The most amazing thing other than the outcome was that they did a maximum of 5 sessions if I understood it correctly in a fast reading, at only 45 minutes a session. I didn't catch what the time frame was. I've wondered about neuroplasticity and why we can't undo the things we have wrongly learned about processing pain, but I simply thought that new pathways had been made which couldn't be "un-made" but clearly I don't really understand any of this. Wow, to think of the possibilities!

gail

im on cymbalta for 6 months and ametatriplain 50 mg (not sure how to spell it) for 3 months

Hi Elliot,

Well, you might mention to the doctor that prescribes these for you that you've had some problems with depression lately and see what the doctor says. It can't hurt and he might be able to help you some. I'm glad you're taking something. Is the depression any better or any worse? And, Elliot, if you ever get really severe with the depression, please do go seek more help, OK? I've done that several times in my life and it has been very helpful to just get me to feeling more "normal" and not so sad. I'm so glad that I got help those times. There was a time in my life when admitting that I use to be depressed would have made me feel some shame, like you seem to feel, until I realized that there was nothing to be ashamed about. And, when I did go for some help, it did help. Now I'm not depressed anymore even though I can have a bad day from time to time, especially due to the pain. I wish you the best, Elliot. I hope you'll get help if you feel like you need it! Also, know that the group cares about you and is here for you!

gail

Post edited by: maddiesgram, at: 07/02/2012 03:36 PM

Dear Elliot:

I hope all is going well for you. Thanks for the info regarding Pain therapy. I will bring this up to my new therapist at the end of the month.

I usually feel depressed when the pain is high all day long. my attitude is low and I just dont feel like I can make it through it or even want to. This is a normal reaction to chronic pain,it is not normasl to have pain all the time. Our bodies were not made to tolerate constant pain all the time without a bad reaction to our emotions. It is totally fine and reasonable to get help whenever you need it. Please know that you are in my prayers for a better tomorrow! Thinking Of You, Thiamarie

Hi Elliot (and everyone, really) -

There are several good reasons to break down and see a psychiatrist, other than that everyone close to you feels that you should.

A quickly expanding field in medicine is pharmacogenomics, which is the study of how someone's genetically-dictated mixture of metabolizing hormones and other substances affects their response to a given drug or combination of drugs.

I came upon this field several years ago, when a routine urinalysis at one of my PMPs came up negative for methadone. I had taken several 10mg tabs that morning, and the test was around noon, so I was floored! Research revealed that there are four known classes of methadone metabolizers - from "very slow" to "ultrafast".

After more research and another "failed" methadone urinalysis, I obtained a genetic screening and - to no one's surprise - it showed me to be an ultrafast metabolizer. I can take 10mg of methadone and show up clean four hrs. later.

Why's this relevant here? I was growing leery of venlafaxine (Effexor) for a long time, since it was prescribed at the time my CRPS was diagnosed. I don't know what it does or doesn't do for me. Turns out that it's metabolized by the exact same enzyme controlling methadone metabolism; the implications are obvious.

In my experience, only psychiatrists are up to speed on this area, despite the seminal book, "Psychiatric Pharmacogenomics", being published in 2010 (I have one).

We CRPS victims take such a large mixture of drugs, that - in my opinion - not to have someone knowledgeable look over the specific drugs/dosages in this way may be sabotaging their own drug therapy. I'm looking for a chart that's not copyright-restricted that I can post, but meanwhile, do a little search yourselves on the keyword pharmacogenomics.

Hope this helps!

Howard

Howard,

That's so interesting and I've never heard of such a thing. I've had two anesthesiologists tell me that redheads have a genetic difference from others regarding their ability to tolerate pain and they must be given more of a medication to achieve a similar state of pain relief or to get them "under" with anesthesia. So, I was a tiny bit aware of how genetics could play a fact in how one metabolizes medications. That is pretty crazy that you were methadone-free in 4 hours! Did they say if that was very unusual? Also, have you read about redheads and medications before? And, one more- my pain doctor seems to be pretty savvy regarding medications. Would you still think that I should get a consult with a psychiatrist trained in pharmacogenomics? I'm afraid that it would make my pain doctor unhappy and possibly threatened or thinking that I might try to get medications elsewhere in addition to those I get from him. I wouldn't, but I'm concerned that he would be less trusting of me and we've built a good trusting relationship. What do you think?

Thanks!

gail