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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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#1 | ||
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the physiatrist I was seeing at the local large university has been promoted and is no longer seeing patients. They refered me to another physiatrist, who can't help me at all, but at least she said so.... not even close to what she works with (spinal injuries)... anyway, while she looks for another doctor that does deal with RSD for me, she recommended I see a pain management psychologist. To learn how to "cope with chronic pain" and biofeedback etc.
I am not sure this will do anything but get co-payments from me. I don't feel depressed. I do some meditation to control pain now.. it has helped me as much as any pain med, as the meds don't work. But, this doctor felt sure I could benefit from seeing this psychologist. SHe said sometimes it "just helps to have someone to talk to about it" - but I really have not felt the need to go to a stranger and talk about this. When I need to talk I come here, to this board, where people really understand. As RSD goes, I function fairly well... I still hurt a LOT, but I do still work, and I manage without regular pain meds (mainly because I have not found anything that works anyway) . I take topamax, namenda and norvasc to control the RSD symptoms. Sometimes aleve. Sometimes tramadol, sometimes a couple vicoden... like once or twice a month. Anyone see one of these doctors? See any reason for me to do this? I have never been one to talk things out, or seek counceling. But, I am also open to anything that will help me. Just not sure what they do, or what to expect. THanks Jules |
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#2 | ||
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Hi Jules,
Talking to someone can always help with the anxiety of what life is giving you right now. Biofeedback can be helpful for some, they just put leads on you and teach you to control your breathing to try to control your pain. You know yourself, but maybe you should give her a try and see if it is helpful, if not you have the right to find someone else. You were already seeing someone, was it helpful? If you feel you need to talk to someone, you should go and give it a try. I wish you many pain free days. Sandy Quote:
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"Thanks for this!" says: | AintSoBad (09-27-2009), daylilyfan (09-27-2009), Dew58 (09-27-2009), fmichael (09-27-2009), hope4thebest (09-27-2009), loretta (09-27-2009) |
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Hi Jules,
It sounds to me that you are managing things quite well on your own. You should be very proud of yourself! I agree with you that this is the place to come where we can talk to like minded individuals about our feelings and experiences with RSD. I'm at the same spot as you, I seem to manage well by applying multiple therapy strategies with minimal pharmacological interventions to help control the pain. That being said I always have in the back of my mind that speaking with a professional might give me some deep insight that I haven't come across on my own. For some people therapy is essential, I've always looked at it as a tool to help put one back on the right track when getting off course. I can't afford therapy right now so it's not really an option at this time for me. That being said if your co-pays are reasonable and if it is with a psychologist who specializes in Pain Management it could well be worth it. If it's simply a matter of a crap shoot on the part of the referring physician who feels bad that he/she can't help you I'd make a pass. Pat yourself on the back for doing as well as you are. MsL |
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"Thanks for this!" says: | AintSoBad (09-27-2009), daylilyfan (09-27-2009), Dew58 (09-27-2009), fmichael (09-27-2009), hope4thebest (09-27-2009), loretta (09-27-2009), SandyRI (09-27-2009) |
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#4 | ||
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Hi Jules,
I was refered to a pain psychologist by my pain management doc several months ago.. Because I have practically no remaining 'sick leave' hours due to injury/surgery and countless doctor appointments I've had in the last three years, I see her during my lunch time..I eat lunch on the freeway on the way to her office weekly!! this aspect is stressful...oh well.... Nevertheless, it took a while for our relationship to be established, and for me to feel comfortable with her..we have different personality types..she is very reserved, whereas I am more animated. At first her demeanor intimidated me...I felt uneasy in expressing my emotions and thoughts... Over time, though, I have relaxed and we have a decent rapport. In several meetings, a floodgate of emotion has poured forth with tears, sobbing, and talking out my frustration, demoralization, anger, exhaustion, and pain. It is helpful to have this interpersonal encounter... I have developed a great appreciation for this hour with her, as it is a time to be face to face with a person who doesn't judge me and who is there to listen to my defeats and victories, my tears, or expression of hope, and the 'RSD loneliness.' She also is teaching me a technique called "autogenics" where she helps me get into a very deep state of relaxaton. She was a physcial therapist for many years, and truly does understand the dynamics of pain. She has also provided me with a great book called "Managing Pain Before it Manages You" as well as a couple of relaxaton C.D.s While she will never truly viscerally understand the experience of RSD pain, and the frustration of limited mobility, it is a place for me to 'unload.' Jules, I would give it a try...it takes time to make a connection with a therapist...sometimes it is instantaneous, and for others it builds slowly..... I am very fortunate that W.C. is authorizing these sessions. It is their 'gift' to me to keep me in the workforce (pardon my cynicism...) I try and manage my pain with meditation, and relaxtion techniques that I've explored on my own..I've declined meds except for neurontin, which has enough side effects of its own...I know at some point, I may have to add more meds...I'm so grateful for the mobility scooter.. If you decide to add this avenue of relief, I hope have a positive experience!! Hope4thebest ![]() |
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#5 | |||
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Jules -
Following specifically on what Mslday and hope4thebest said, there is a clarification from my experience that might be helpful. Too long ago, about a year into this, I was being treated at the pain clinic of a good hospital in town, when somehow or another, I was referred to its on staff psychologist. As it turned out, he was the only person on the clinic's professional staff who wasn't a network provider on my health insurance. (Such a waste of money.) At one point I said that the key issue I was having was an increasing inability to control my frustration/temper, not with family and friends, but sales clerks, telephone representatives, etc. To which he responded there really wasn't much I could do about it, that it "went with the territory" of chronic pain. Shortly thereafter, and for unrelated reasons, I left that pain clinic and began being treated by a wonderful (and now semi-retired) neurologist who specialized in neurological rehabilitation and pain management, to whom I had happened to have been referred four or five years earlier for compressed cervical disks. And he wanted me to see his pain psychologist. In addition to being a licensed clinical psychologist, she is also a psychoanalyst, specializing in pain management. I had one 2 hour evaluation with her, but that's all it took. I told her about the "went with the territory" remark, to which she said (in so many words) that it would make excellent organic fertilizer and then handed me the card of an MBSR instructor, which changed my life forever. Bottom line: there are psychologists who happen to have gotten a job in a pain clinics and call themselves pain psychologists, and then there are those psychologists to whom neurologists (or anesthesiologists or physiatrist) with many years experience in treating chronic pain refer their patients. Wherever possible, I would seek out the latter. Can you get such a referral from the spinal injury physiatrist with whom you spoke? At least in my understanding of the world, chronic pain is chronic pain when it comes to psychology. Mike ps For a great introduction from a meditative perspective, I would strongly endorse Shinzen Young's Break Through Pain: A Step-by-Step Mindfulness Meditation Program for Transforming Chronic and Acute Pain (2005) (1.25 hour CD plus 80-page hard cover book Published by Sounds True). His primary website is http://shinzen.org/ and he has been my teacher since 2003, turned out the MBSR teacher - and still close friend - was also someone who works closely with him. |
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"Thanks for this!" says: | AintSoBad (09-27-2009), daylilyfan (09-27-2009), Dew58 (09-27-2009), hope4thebest (09-27-2009), loretta (09-27-2009), SandyRI (09-27-2009) |
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#6 | ||
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Sandy said "You were already seeing someone, was it helpful?" - Sandy, I think you mis-read my post. I was seeing a physiatrist, which specializes in movement and rehabilitation. He is the one who got promoted.
My insurance will only cover 6 visits per year to a psychologist. Don't think I can get much of a relationship going in that time. LOL This psychologist specializes in pain. I was referred to her by the doc that took over for my physiatrist... that doc specializes in spinal injury... and rehab, so I imagine she deals in pain quite a bit. She really thought that this would help, and was surprised that in the 9 years I have had RSD, no one has suggested I see a psychologist before. Michael - your the one who got me "into" Shinzen Young. Was the biggest help for my RSD yet. I have never felt like I really do mediation fully, or deeply, or what ever - but what I do helps, and that is the important part. The main thing I got from his book was not to be afraid of the pain. Not to be tense about it, because it only makes it worse. I go to the Cleveland Clinic this week, for a check by a doctor I saw up there a few years back. I think she really knew her stuff. She worked with Stanton-Hicks for many years, now runs the pain management at one of the hospitals in the area. Since my RSD has changed lately, I wanted to be seen by someone who has a clue. She is the closest thing to an RSD specialist I have been able to find. Thanks everyone. Jules |
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#7 | ||
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Hi Jules,
I have been seeing a pain managment phsycologist for the last 3 years. He is great and has taught me a lot about relaxing and breathing through my pain. He is also very helpful with helping to sort out treatment options. He has several RSD patients. I noiticed you are from OH. I live is southwest OH and see a wonderful doctor in Hamilton. I wish you the best of luck!! Sherrie |
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"Thanks for this!" says: | AintSoBad (09-27-2009), daylilyfan (09-28-2009), Dew58 (09-27-2009), fmichael (09-27-2009), hope4thebest (09-27-2009), loretta (09-27-2009), Wilbyfree (04-06-2010) |
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#8 | ||
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I decided that I needed to start talking to someone once I stopped working, because the disability LOA was so hard for me to accept. Maybe it was because I had more time to think about my illness, but I started to have terrible crying spells during the month of July. I have seen my psychologist 7 or 8 times, and we have started to develop a very nice relationship. I really like her. By now she understands a lot about me. It is SOOO humiliating that she is rendering services and hasn't been paid yet. Admitedly, she accepted me a patient knowing the deal with WC because I explained how evil they were the first day I was there, and the entire set-up regarding her bills and how they needed to be submitted. I made sure she knew what she would be dealing with when she took me on, and let her know I had back-up insurance just in case (which will be very expensive for me if I have to use it, and SO UNFAIR). Under the law, I am entitled to psych counseling. I honestly believe that I would not be as sick as I am if I had a better WC insurance company to work with. Every time these guys these guys torture me with a new denial I flare. (she is teaching me the breathing techniques and I should be getting better at dealing with that). Those of you that are WC that have decent adjusters with a conscience and a sense of fairness that approve the services that you are entitiled to should count your blessings. You have no idea just how lucky you are!! Thanks for listening to me vent (for the umpteenth time!) about the Hartford!! Last edited by SandyRI; 09-27-2009 at 02:36 PM. Reason: spelling |
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"Thanks for this!" says: | AintSoBad (09-27-2009), daylilyfan (09-28-2009), Dew58 (09-27-2009), hope4thebest (09-27-2009), Wilbyfree (04-06-2010) |
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#9 | |||
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Dear Jules -
Please excuse my poor memory. It's become an issue in my life. As to deepening your meditation practice, there are a couple of good options that come to mind. The first is an 8 week MBSR (Mindfulness-Based Stress Reduction) class (total cost approx. $500), which is centered around weekly 2 and 1/2 hour classes/group discussions/guided meditations etc., tapes on guided meditations and yoga to be used on hopefully a daily basis in between, and a day long retreat at the end of the program. The program has been run out of the Univ. of Mass. Medical school for over 30 years, for many years by by Jon Kabat-Zinn, PhD, who's a very interesting guy in his own right. Here are the first two paragraphs of his online bio: JON KABAT-ZINN, PH.D., is founding Executive Director of the Center for Mindfulness in Medicine, Health Care, and Society at the University of Massachusetts Medical School. He is also the founding director of its renowned Stress Reduction Clinic and Professor of Medicine emeritus at the University of Massachusetts Medical School. He teaches mindfulness and Mindfulness-Based Stress Reduction (MBSR) in various venues around the world. He received his Ph.D. in molecular biology from MIT in 1971 in the laboratory of Nobel Laureate, Salvador Luria.The MBSR mainpage is at http://www.umassmed.edu/Content.aspx...d&itemid=41254 including a link at the bottom to finding teachers in your area. As much as it troubles me to admit it, nothing I have done since then, including 2 week residential retreats, has focussed me on daily commitment to practice as much as that first MBSR class. A less expensive option is Shinzen's whole new baby, Basic Mindfulness: Home Practice Program Phone-based Classes & Retreats at http://www.basicmindfulness.org/ It's a series of 2 - 4 hour classes, mostly guided mediations taught most by Shinzen himself, that meets over an entire weekend, 2 hours on Friday night and two 4-hours sessions on both Sat. and Sun., once a month. The cost of each class ranges from $10 to $20 each, however, no one will be turned away for lack of funds. The upcoming October program (Oct. 11 - 13) will, however, be taught be a couple of his senior students, where Shinzen will be on retreat in Israel. The techniques is set around a program Shinzen calls 5 Ways to Know yourself as a Spiritual Being - an article laying out the entire structure can be opened at http://www.shinzen.org/Retreat%20Rea...20Yourself.pdf - and while most of the classes have a prerequisite, each month there is one totally intro class open to all. In October it's "Focus on Change: Part 1." The idea being that each of the basic techniques (all distilled from thousands of year of organized practice, and each can be footnoted at legnth). With each of the 5 basic techniques, you take Part 1, followed by Part 2 at a later date. However, if Part 2 of the class you've started isn't available on the following month, you're free to take Part I for any other technique. Then, as soon as you have Parts I and 2 down for any one of the techniques, you can take any "elective" on which it's based. And once you've covered all five techniques, it's as though you have just completed a week-long residential retreat and you're good to go with everything on the menu. I just noticed, for perhaps this month only, there is a 2 hour guided overview of the 5 Ways with no prerequisites, led by Stephanie Nash - who's great - on Friday night, October 9, 2009. (Go to the basicmindfulness.org page http://www.basicmindfulness.org/ and click on the "Monthly Schedule tab at the top of the page.) For $10 this is an opportunity not to be missed. Hope this is useful. take care, Mike Last edited by fmichael; 09-27-2009 at 03:30 PM. |
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"Thanks for this!" says: | AintSoBad (09-27-2009), daylilyfan (09-28-2009), Dew58 (09-27-2009), hope4thebest (09-27-2009), SandyRI (09-27-2009) |
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#10 | |||
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I can't believe what you and almost everyone on WC has to go through: until I got on the boards, I didn't realize how "lucky" I was to have been injured at the gym. RI is small enough state, however, for a couple of determined people to have an impact through it's legislature. It might be worth finding out if there is a WC patient advocacy group already set up, and then getting in your two cents. In the meantime, all I can say is that you are clearly a strong person for being able to cope with this much frustration, as well as you are. (Believe it or not.) hang in there, Mike Last edited by fmichael; 09-27-2009 at 05:05 PM. Reason: typo |
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"Thanks for this!" says: | AintSoBad (09-27-2009), daylilyfan (09-28-2009), Dew58 (09-27-2009), hope4thebest (09-27-2009), SandyRI (09-27-2009), Wilbyfree (04-06-2010) |
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