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Thanks for the reply Karen,
No we have not noticed any real skin color changes. At first I used to see an area by her ankle change color from Blue to white at times but it did not stay one color or the other. Then I realized that the uneffected limb also had that shade from time to time. Are the color changes perminent or do that change back to normal from time to time? Her skin is not sensitive to touch or air. Not yet anyway. It just hurts during the exams when the doc "pokes" her as she calls it (applies pressure to the areas that cause her pain). At first the Doc thought there may have been a slight diff in temp from her uneffected limb but then thought it could be due to the lack or use and circulation in the limb. Thanks so much again for the response I was worried about the emg. Do you think it will show if their is an entrapment. Do you know what nerves should be tested? |
The skin discoloration that comes with rsd is permanent and is always there. It started in my leg/foot and the only time it wasn't a blue/purple color was when I put the leg up. It's been 5 1/2 yrs now and is still the same. My hands and arms are discolored if I let them hang down at my sides.
The emg will show an entrapment or injury to a nerve or nerves. It'll show up as an abnormal reading. I don't know enough about the names of nerves around the ankle or foot to know what to test for or not to test. A thorough emg test will be done at several points in and around the point of pain. What is her pain like? Like, is she always in bad pain or does the worst pain come only when she tries to use or move her ankle and foot? With rsd the pain is always there. It can vary in intensity depending on the weather, activity level, things like that. But it never lets you forget it! LOL Some days it's a real bad pain day for no reason as well. I hope I'm explaining myself well enough. It's hard sometimes to find the words to explain the pain. Using myself as an example, my pain fluctuates all day long. When I wake up it's pretty bad until my pain med kicks in. It goes up and down all day long too and can stay bad if it's raining or there's a cold front coming through. If I do too much I'll hurt a lot more. It is always sharp, stabbing and shooting. Since almost my whole body is affected it moves around. Sometimes my muscles hurt along with the rest of the pain and at times I can feel the pain in my bones. Taking tylenol or advil doesn't help relieve any of the pain at all. I can't help the pain go down by massaging a certain area or by just not moving it. One minute the pain will be ok, the next second I'll be in tears. Does any of that sound like what she goes through? I hope I gave enough info so you know what I mean. With rsd it's a matter of doing extensive testing and ruling out everything else it might be. It's just there are some "classic" signs that the majority of us have that makes it clear it's rsd. I'd say the top 3 are the constant pain, skin discoloration and temp change. You can have rsd without swelling, without burning and without sensitivity. I've found those without sensitivity of any sort are a minority and might not be present at first but will usually pop up about 2 months. It usually doesn't take too long though. Hope this helps you out. Hugs, Karen |
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The pain she feels is constant, pressure ache (7-8 of 10) all the time but intensifies with activity PT walking long days at school even though she uses crutches. Pointing her foot causes more pain and flexing it causes much much more pain. Motrin 600 mg 3 times a day helps take the edge off the pain for 4 of the 6 hour dose. We are trying Lidoderm 5% patches but they don't seem to be helping. May be too soon to tell. We are taking her to the soft tissue doc today for possible nerve flossing. I'm not sure what that is exactly but feel a need to rule out nerve entrappment before we go back to cleveland clinic in Dec. I'm nervous explaining this to the other Mi docs Thursday. I hope they will still be willing to help do diagnostics like emg to also help rule out entrappment/inpingment. |
247Pain,
I am so very sorry to hear about everything that your daughter is and has been through :hug:. Unfortunately I don't have any answers for you but just wanted to say that I wish you all the best and really hope you can get some much needed answers real soon. Please keep us all updated. I have RSD in my left leg and right arm, I developed it in March 2007 when I was 12 years old, I am now 13. If I can help you in anyway, please just let me know, I am more than happy to help you and your daughter has I know how scary it can be dealing with such an horrible illness, especially at such a young age. About the colour changes, my leg and arm can go from being the normal colour one minute to being purple, black or red the next. It is pretty scary. Everyone is different and not 2 cases of RSD are the same. I have tried many treatments and not many have worked for me, I have tried so many medications that I have lost count and the only one that has any impact on my pain is Ketamine. It is really scary being on such a strong med at my age. I have been on 2 intense Physical Therapy programs and the first one helped me (I was stuck in a wheelchair for 13 months) but the second one didn't help me at all. Am keeping you, your daughter and your family in my thoughts and please know I am here for you Love, Alison |
Please help
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Hello, Could you please provide me with any information regarding this Dr. My sister has RSD and it pains me to see her in the condition that she is in. My family and I are at our wits end, we do not know how to help her. Her doctor does not seem to know much about RSD. Please provide us with how to reach your Dr. so that they can look at my sister and decide if she is a good candidate for them. Any information is appreciated. God Bless. |
Some people get the "chameleon effect". My hand changes colors without warning from yellow to reds and blues. Usually it's shiny when this happens and sometimes mottled.
It did it most back between about the 4th and 6th years but still does it once in a while. I can't really associate it with much of anything though it seems to be more likely after flares. |
hhhmmm, what kind of doc would likely listen to nerve entrapment theory????
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i have never used this forum, so i hope this part shows up........i don't think i have this either.....i had a terrible injury with compartment syndrome as a complication, but i can't believe i now have RSD/CRPS of any kind.....does anyone have an idea for type of doc who would listen????? |
Hello wyldrose,
I copied your post to a new thread just for you, so more will say Hellos -and add their thoughts. your new thread here- :) http://neurotalk.psychcentral.com/sh...242#post483242 |
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Not everyone has significant skin color changes
It's important to remember from a diagnostic standpoint that not everyone with CRPS/RSD experiences significant skin discoloration and/or swelling. I am in this group, although I've had CRPS for 4 years, which is now in the entire right side of my body. I don't experience noticeable swelling, and although the skin on many areas of the right side of my body (particularly my hand/arm/feet/thighs/cheek) often turn red when cold, this redness goes away when I warm up.
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Thanks I needed that !
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Help!!!
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I have just started the road to recovery. I had surgery 12/19/08 for tarsel tunnel release on my right foot. I was told by the surgeon that there was entrapped nerves also that he fixed. After the surgery I was in severe pain on the 3rd day and my son took me to the Doctors office. They removed the wrap and half cast only to find that it was wrapped too tight and the top of my foot was purple. I don't know if it was the surgery or the wrap that did this. I am thinking of going to a chiropractor after reading your story. I have had 4 nerve blocks so far with no relief. They want to put a stimulator in my back, but I am not ready to commit myself just yet to something so permanent. I am asking for any suggestions. I am 48 and very active. I have been out of work and the gym since the surgery. I am going crazy reading all the negative stuff about RSD, Please help! Chrissy |
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I noticed from another thread you are going to see Dr. Maleki. I saw him two years ago and he told me to stop seeing my Chiropractor. I didn't because his adjustments have been one of the best things to help my full body RSD. Dr. Schwartzman approved of my Chiropractor. He is an activator Chiropractor he doesn't use his hands for adjustment he has a small spring loaded tool that he puts on the part of my spine that needs adjusted and the tool realigns the spine. Which I have found essential to maintaining manageable pain. My DC diagnoised my RSD. All the nerves run through the spine and if the spine is aligned then the nerves work better. I don't use any narcotics on a daily basis only for break through pain and I know my Chiropractor is the reason why. Hang in there, Sbowling |
Thank you for this thread
This is my first post. I am here because my husband has been diagnosed with CRPS 2. He ran his hand over his table saw and chewed up his radial and ulnar nerves. No bone damage, just nerves, arteries and muscle. All has been surgically repaired, part of which required a nerve graft from his leg.
Post surgery he was confined to a splint and not allowed to remove it for two weeks. Then he was sent to PT and allowed passive exercises only which he did religiously every hour, as instructed. About two weeks into the therapy he started complaining about swollen and stiff fingers that made his exercises very difficult. I told him to show the surgeon at his next appointment and my stoic, ex-marine husband said, "He knows they're swollen." When the splint came off two weeks later, the surgeon said, "Hmmm. Your fingers are really stiff. Looks like you have CRPS. Go see our pain management doctor." Husband comes home extremely upset. All he wants is for his hand to be usable. Long story even longer, he had a ganglion stellate block which did nothing. Five minutes in the recovery chair and he was already complaining that the pain was still there, not even minimized. This past Monday they did a brachial plexus block. Five minutes in the recovery chair and he swore he could still feel burning right at the end of one of his scars. I told him that couldn't be true since his arm was numb from his neck to his fingertips. About an hour later he insisted that there was pain although minimal. I decided a 50-year-old man ought to know when he was feeling pain. In spite of that, we had 18 hours of relative bliss, toasty warm fingers, an awesome PT session where they twisted his fingers and wrist into pretzels, and then the block wore off and we're back to the way he was before the block. His range of motion is still better than before the block, which is encouraging, but most of it went away when the block wore off. Our follow-up with the PM Dr. is this coming Monday and I'm anxious to hear what he has to say. We assume the block was a spectacular failure since the pain resumed right away and we also want to hear his thoughts on my husband still feeling the burning. Strange. I plan to ask about the possibility of compressed nerves and neuromas as well as his position on alternative treatments. In the meantime, my sweet husband has not responded to Lortab, Percoset or gabapentin. We are struggling to remain positive but he's just sure his options are dwindling to near-zero. I keep reminding him that we are only ten weeks (since the initial accident) into this and are still extremely early stages. But he wants his results now. I think he would be much more reasonable had any of his treatments worked even a little but but so far we're batting .000. I have no words to express how relieved I am to find this thread. Nearly everything I find on the web is negative, negative, gloom and doom. I love hearing stories of people who have beat this, especially with non traditional treatments. We haven't tried a single one of them yet so still have many options ahead. As head cheerleader of my little team, I need all the ammo I can get! I just cannot wrap my mind around the idea of him having this pain for his whole life. I feel in my bones that his solution is out there, we just have to find it. Do I trust this feeling or am I simply in denial and everyone goes through this...? Speaking of alternative treatments, I've found a site for a pain center in Corpus Christi, TX where they use a painless, non-invasive treatment that stimulates accupressure/accupuncture points. A Dr. Rhodes runs it. They supposedly get great results but they don't post testimonials from people who were disappointed. Has anyone out there heard of this place? Are they good or a bunch of quacks? We live in Oklahoma so the drive down would not be difficult for us. Any ideas how much they charge for these treatments? We have some money saved up and are currently debt-free but are plain, working folks like everyone else. Still, I would mortgage everything I own in order to pay, if it works. Anyway, I just want to say again thanks for the positive posts. They have done more for my husband than any of the drugs or the nerve blocks! I understand that people out there who have dealt with this for a long time may think I'm being a whiner and if so, I apologize. I don't mean to. I don't feel whiney. It's just that this is brand new to us and right now we're pretty much just terrified. |
welcome mjl
Dear mjl1261 -
And welcome to the board! This is a place where you and your husband will find much support. And information. For instance, you ask about Dr Rhodes, we have a thread from June of this year called Dr Rhodes And STS at http://neurotalk.psychcentral.com/thread89188.html (The trick is in using the "Search" function at the top of the page, clicking on "Advanced Search" and going from there.) You don't know it, but you are so lucky that you husband disease was diagnosed early and that he has gotten some relief from blocks. I say that advisedly, based only on anectotal observations that people who had even marginally effective blocks early on (which is when they work: say, in the first five to six months of the disease) appear to have fewer issues of "spread" at the one year mark, and from there on out. But the real reeson I write is because in that same 5 - 6 month window that the blocks work, people appear to be more likely to go into premanent remission from so-called "low dose" ketamine infusions. If you haven't done so already, get the know the RSDSA website reall well. It's at http://www.rsds.org/index2.html and for a nice little article on ketamine written for a lay audiance, check out "Overview of Ketamine Infusion Therapy" by Philip Getson, DO which origionally ran in the RSDSA quarterly newsletter and is now on its site at http://www.rsds.org/3/treatment/ketamine.html One, of many, threads we've had on ketamine ran this last June, under the heading low dose ketamine treatment at http://neurotalk.psychcentral.com/thread88065.html If there's a single take home point to that thread, and the articles cited in the posts, it's that of the folks who get "low dose" infusions (as opposed to the 5-day comas that are being induced in Germany, via Robert Schwartzman, MD in Philadelphia and in Monterey, Mexica through Dr. Anthony Kirkpatrick in Tampa, which appears to offer more hope, at substantially greater risk, to the chronically afflicted) those who have had CRPS/RSD for only a few months tend to have much better long term results than everyone else. Another thread to the same effect (running about the same time) was Article: good news for the newly diagnosed, fair news for the rest of us at http://neurotalk.psychcentral.com/thread88983.html which like the thread mentioned above, was centered in large part around an article bt Dr. Schwartzman, in this case, "The Natural History of Complex Regional Pain Syndrome," Schwartzman RJ, Erwin KL, Alexander GM, Clin J Pain 2009;25:273-2, which is freely available off of the RSDSA website at http://rsds.org/2/library/article_ar...lexanderGM.pdf A third thread (and like the last initiated by me: I tend to have a better memory for things I've written, as opposed to read, what can I say?) is Ketamine, the article that ran a month ago at http://neurotalk.psychcentral.com/thread104838.html That thread was centered on what may be, at a practical level, the most significant ketamine study to date, where it was the world's first double-blind placebo controlled study, "Outpatient intravenous ketamine for the treatment of complex regional pain syndrome: A double-blind placebo controlled study," Schwartzman RJ, Alexander GM, Grothusen JR, Paylor T, Reichenberger E, Perreault M, Pain 2009 Sep 22, available on the RSDSA Medical Article Achieve page at http://www.rsds.org/2/library/articl...n_Pain2009.pdf And the authors were not disappointed: This study showed that intravenous ketamine administered in an outpatient setting resulted in statistically significant (p<0.05) reductions in many pain parameters. It also showed that subjects in our placebo group demonstrated no treatment effect in any parameter. The results of this study warrant a larger randomized placebo controlled trial using higher doses of ketamine and a longer follow-up period.It is studies like this that will lead the way in forcing some now recalcitrant insurance companies (including WC carriers) to cover ketamine therapies without a requirement that the patient first "exhaust" other avenues of treatment, which is to say, put themselves over time out of that group of acute cases who are more likely to benefit from the technique. That said, and possibly because the authors were employing a slightly different techniques than had other low dose studies, the favorable results of the study were obtained from a population of CRPS patients who had been ill for at least six months, and some much longer: There were no significant differences between those patients with a shorter duration of CRPS (11 patients with an average length of illness of 2.6 years and a range of 0.8–4.2 years) and longstanding patients (8 patients with an average length of illness of 12.2 years and a range of 6.8–20 years).And for thread on another treatment altogether that also provided a significant incidence of "long term remission" in patients who had only had the disease for six months at the time they started treatment, check out IV regional block with low-dose tumor necrosis factor-alpha antibody infliximab at http://neurotalk.psychcentral.com/thread91280.html I hope this didn't send you into informational overload, but the point I wanted to make is that time your husband is in good shape in terms of starting one of these treatments while still in the "acute stage," but time is nevertheless of the essence. I know that it's not exactly down the road from you, but my sense of where your husband might be seen soonest, with the greatest likelihood of getting a relatively esoteric treatment would be the Cleveland Clinic. http://my.clevelandclinic.org/anesth...t/default.aspx As in, call today to see what could be scheduled. And in this regard, it has to be noted that the Mayo Clinic is not the place out of town pain patients want to go: I was advised by a pain management physician there that all of the more cutting edge therapies are reserved for people who live in the immediate area, with whom they can follow up on a regular basis. Good luck, let us know what we can do for you and welcome again, Mike ps For future reference, you are more likely to have you post noticed by more people if you use it to start a new thread, as opposed to one that's been around for years, although I understand and appreciate your desire to honor this thread in particular. |
I copied mjl1261 1st post to a new thread here-
http://neurotalk.psychcentral.com/sh...268#post589268 |
Remission
Has anyone seen this:
http://brandyupdate.wordpress.com/ November 20, 2009 Remission! Brandy and Elizabeth both got good news today . . . they don’t have to come back to Dr. Schwartzman for any more treatments unless they need to! They have to come back for a re-check in a year, but basically they are in remission! Hooray! These 2 young ladies went through the Ketamine Coma. Another 2 who have come through this! I have seen 6-7 people who have recovered from this. Very encouraging! With God, all things are possible! Irene |
Would you be available to talk to a friend of mine? He is suffering greatly from RSD and would love to know the name of the doctor who helped you. He does not have internet and wants to know how to contact you. My name is LJ and i can be reached at the following email:**
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I am the unhappy customer of Dr Rhodes. You can do a search of my name and find out some of the story. Charming Dr Rhodes has had his attorny send me a cease and desist letter for telling my side of the story about our less than glowing experience there. I do know that legally I am entitled to tell you my OPINION.
Also, Dr Rhodes REFUSES to release my daughter's records. I am filing a complaint with the state of Texas as I know that is definitely against the law. For the record, I have TRIED to call, email or mail him my complaints to work this out. He refuses to talk to me, my husband or daughter. Quote:
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I don't know about Dr. Rhodes but have heard such different opinions of this man. I walked in the RSD Walk last year in Central Park, NYC and there was a whole team of people with Dr. Rhodes shirts on and telling his story to anyone who would listen. Just the fact that he paid an attorney to write you a letter, or it's a friend, speaks volumns. Hope you get yours daughters records. Just a quick story I know of a doctor in NJ who lost his license to practice medicine for many things but one was not providing records to patients. Then he ran to NY and practiced there for about 3 years and lost his license there not he's in northeast PA, I believe E. Strausburg. Writing to the Texas Board will shake him up. Medical Boards appearently take that type of behavior very serious. Good Luck. Gabbycakes |
Eventually I will write about my experience. I find it absurd that not only will they not give us our records, they will not give us a copy of the 'signed' policy saying we knew about the 30 day return policy (which we were never told about). They were months late in filing insurance claims and the independent biller was disgusted with them. And now they hang up on me saying they are not allowed to talk to me. Very unprofessional.
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can you help me? husband has rsd but sounds like trapped nerve..can you tell me who y
my husband sounds like he has a trapped nerve as well.. can you please let me know who fixed this for you **
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Spontaneous Remission
I came down with RSD in June 1996 after surgery on my right thigh, and suffered the tortures we're all familiar with. In January 2010, I suddenly started losing my symptoms. It was rapid at first, but then slowed as the remission continued. Now I'm in about 90% remission; the only remaining symptom is that I get fatigued really easily.
My PMD was amazed! She said, smiling, "With your years of chronicity and your age, you have no right to be in remission!" She and I have been micro-analyzing what I was doing, taking, eating, etc., but still don't have a clue why this happened. My RSD was centered in my right foot - actually in the tarsal joints - and I went through the usual series of epidural blocks, had an SCS installed (didn't help much), took lots of Neurontin, narcotics, muscle relaxants, etc. I never experienced any spreading, for which I'm way grateful. I really wish I could nail down what caused this, but no luck so far. One factor, which my pain docs and I had a lot to do with the lack of spreading and maybe even the remission, is that I was a pretty successful runner/racer when the RSD hit. Since long distance runners developed very large veins in our legs and feet, it seems logical to infer that I didn't have as much vasoconstriction as most RSD folks do. Since the remission, I've become a major advocate for RSD and chronic pain patients. I'm a Professor of Medicinal Chemistry, so I started researching RSD as soon as I knew I had it. *edit* I'd be glad to answer any questions, except "How'd you do it"! I still don't know. Howard |
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I was always quite athletic. One doctor was surprised at the size of the veins that feed the heart and an anesthesiologist almost jumped out of her shoes when my pulse got down in the 25 range and B/P not much higher. The doc asked me if I was an athlete and it was very difficult to answer; "used to be". Did you pay attention to things like diet and exercise? Did you go through a lot of depression coming to accept the condition? Did you ever obsess on the condition or getting better? |
My RSD is back, but I was in remission for eight years, so I can tell you what I did to get there.
I was diagnosed with RSD in my left foot in 2003 when I was 22. I went hiking the week before my college graduation. The pain started in my big toe, but quickly progressed to all my toes and then my entire foot. The docs did multiple xrays which showed nothing. I had multiple blood tests for lyme, lupus, rheumatoid arthritis, HIV and gout--all of which were clear. My foot was about 3 times the normal size, and incredibly painful. I couldn't walk without crutches. It was clear something was wrong, but nobody could figure out what. Finally they tried a bone scan. My entire foot lit up like a Christmas tree. I was sent to a rheumatologist and looking at the results of all my tests, his exam, and my bone scan he diagnosed me with RSD. I had all the classic symptoms: swelling, pain, hypersensitivity, temperature changes (which I couldn't tell) and some pinkish discoloration. Now my story gets a little complicated. Originally the theory was that I got RSD from a stress fracture during my hike. However, six months after being diagnosed with RSD, I was diagnosed with Psoriatic Arthritis, which is an autoimmune inflammatory arthritis similar to rheumatoid arthritis, but undetectable on a blood test (you can test for a genetic factor, which I have, but that's not a guarantee you have it). My rheumatologist thinks I had PsA for years before my official diagnosis. Now the theory is that my undiagnosed, thus untreated and uncontrolled psoriatic arthritis caused the RSD. Rheumatoid Arthritis can also caused RSD. I had RSD for about a year and 3 months before it went into remission. It was one of the worst years of my life. Because I had so much swelling in my left foot, I was immediately put on a large blast of prednisone, about 60 mgs for a month. It was slowly tapered over a 6 month period. I also took neurontin. They tried other similar medications. I went to physical therapy 3 times a week. I didn't notice that the neurontin made one bit of difference. The large blast of prednisone helped, but as soon as they tapered the dose to 20 mg and under, I went right back to being in pain. Over the next year I took a variety of different NSAIDS. I delayed going to grad school by a semester. Finally in July of 2004 I had two separate sympathetic nerve blocks. The first nerve block gave me relief for about 2 weeks. The next nerve block kicked it out of me completely. Eight years later, the RSD is back in my left arm, but I got EIGHT YEARS of remission. I know I'm lucky for that, since some people never get a second. |
Thanks for sharing your story. You are an inspiration to me. I hope you are doing OK with the relapse and that it soon goes into remission. Gentle breath of a hug to you!
Mara:grouphug: QUOTE=KathrynL;883703]My RSD is back, but I was in remission for eight years, so I can tell you what I did to get there. I was diagnosed with RSD in my left foot in 2003 when I was 22. I went hiking the week before my college graduation. The pain started in my big toe, but quickly progressed to all my toes and then my entire foot. The docs did multiple xrays which showed nothing. I had multiple blood tests for lyme, lupus, rheumatoid arthritis, HIV and gout--all of which were clear. My foot was about 3 times the normal size, and incredibly painful. I couldn't walk without crutches. It was clear something was wrong, but nobody could figure out what. Finally they tried a bone scan. My entire foot lit up like a Christmas tree. I was sent to a rheumatologist and looking at the results of all my tests, his exam, and my bone scan he diagnosed me with RSD. I had all the classic symptoms: swelling, pain, hypersensitivity, temperature changes (which I couldn't tell) and some pinkish discoloration. Now my story gets a little complicated. Originally the theory was that I got RSD from a stress fracture during my hike. However, six months after being diagnosed with RSD, I was diagnosed with Psoriatic Arthritis, which is an autoimmune inflammatory arthritis similar to rheumatoid arthritis, but undetectable on a blood test (you can test for a genetic factor, which I have, but that's not a guarantee you have it). My rheumatologist thinks I had PsA for years before my official diagnosis. Now the theory is that my undiagnosed, thus untreated and uncontrolled psoriatic arthritis caused the RSD. Rheumatoid Arthritis can also caused RSD. I had RSD for about a year and 3 months before it went into remission. It was one of the worst years of my life. Because I had so much swelling in my left foot, I was immediately put on a large blast of prednisone, about 60 mgs for a month. It was slowly tapered over a 6 month period. I also took neurontin. They tried other similar medications. I went to physical therapy 3 times a week. I didn't notice that the neurontin made one bit of difference. The large blast of prednisone helped, but as soon as they tapered the dose to 20 mg and under, I went right back to being in pain. Over the next year I took a variety of different NSAIDS. I delayed going to grad school by a semester. Finally in July of 2004 I had two separate sympathetic nerve blocks. The first nerve block gave me relief for about 2 weeks. The next nerve block kicked it out of me completely. Eight years later, the RSD is back in my left arm, but I got EIGHT YEARS of remission. I know I'm lucky for that, since some people never get a second.[/QUOTE] |
Crps is going away!
I initially had a fracture that was wrapped too tight from a fracture. The tight wrap caused serious nerve trama that is expected to fully heal in2 months. The, I developed unbearable foot pain - intense burning, aching , inflamed feeling. I could not walk or drive. Mt dr. Diagnosed me with chronic regional pain syndrome. I was in beginning stages, so prognosis was good. I just had my second lumbar sympathetic block and hopeful this will cure me. the initial sot showed 70 %. improvement in my overall foot. Took down swellin, burning flareups were gone. I am hopefully I will beat this thing completely. I am doing upper body cardio 4x week and water therapy every day for 30 min. Taking gagapentin and motrin too. I have been terrified through all this, but have found was to calm myself, which has helped as well.
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Just in response:
QUOTE=InHisHands;51136]The best study about the outcome of RSD and the advanced stages of RSD has been written by Dr. Poplawski from Canada which was published in 1983. He showed that RSD diagnosed in the first 2 years has a chance of successful treatment in 80% of the patients and after two years each year drops the percentage of the success significantly. From Dr Hooshmand's RSD puzzles (puzzle #057~ "The Stages and Outcome of RSD")...
It seems to me that if you are a) young or b) diagnosed early along you will usually recover. I am young, so I am hopeful that I will recover from RSD. I was just looking for other people's sucess stories, so they could tell me what they did to recover. :) RSD puzzle#022- Possible Timelines Of RSD Recovery "Will RSD always be with you even if you recover from an original injury? If RSD is treated early and properly, it will not hang around forever. It will definitely improve and in better than 80% of the cases when treated in the first 6 months it completely cleared up. After two years the percentage of success drops precipitously. The main exception is among children and teenagers. In this group there is such a strong recovery power that the prognosis is usually excellent and it is hard to mess them up with improper treatment with these patients the sympathetic dysfunction after successful treatment becomes asymptomatic. On can always pick the abnormalities up on thermography or in occasional cases on bone scan tests in a patient who is otherwise asymptomatic, but these tests show sympathetic dysfunction. The sympathetic dysfunction alone is not the same as RSD (Please see RSD Puzzle #1 "What is RSD"). H.Hooshmand, M.D. I guess I just wanted to add to these statements: I was in my mid 30's when I was hit with this disease after surgery. It was so hard and fast that I woke up from surgery with some symptoms and all symptoms were out with in 2 weeks and there was no other diagnosis from any doctor other then RSD. Since I had no idea what the heck it was I listened to the doctors and did and went everywhere to get it in remission. To my dismay, it has stayed in play and has spread continually throughout the years. The one thing I have learned is that nobody can be grouped in a basket with this thing and the researchers have to get more money for their job because just treating the symptoms doesn't fix it. The other idea is that the very doctors that you have to go to should at least know what the heck they are talking abt. Thanks for listening, cuffs558 |
nerve entrapment
where is the ulnar nerve..im newly diagnosed..4 and half months progression.. and looking for any ideas on getting control of this before it worsens..pleeeeeeeease...i ask about the nerve because even when i get the movement back in the ankle/foot argh..under the foot,little toe side,about quarter way up theres a point of argh..that doesnt got away even with the tramadol ,could it be trapped nerve..what nerve,muscle,tendon, whatever is in this area..that could be damage..any info would be sooooo great.x:hug:
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It runs along the underside of the arm and also involves the little finger, ring finger and part of the middle finger. http://i288.photobucket.com/albums/l.../Ulnanerve.jpg |
Full recovery from RSD/ CRPS
I would like to keep this thread active and invite members to please come back and share with us what type injury they had and how they succeeded in gaining remission or full recovery from RSD.
Thank you! |
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:rolleyes: |
I did it !!!
I have never posted on a forum like this before but if this can help one person it will be worth it. Over 2 weeks ago I broke my left leg in 2 places and my left ankle. I won't go into all the details but truckloads of pain relief (without relief) and 1 week of not being able to even think because of the pain I was diagnosed with CRPS. I had never heard of it before so googled it and cried for 1 whole day. They put me on a ketamine drip for 2 days which helped me think a bit more clearly. That was one week ago. My pain relief team were brilliant. The head anesthetist told me on day one of diagnoses that being upset makes the pain worse and that I had to feel calm for the best possible result. He advised me to meditate and that so much of this is connected to the mind. On day 2 - after diagnosis I decided that no matter what, I was going to fully recover. Having CRPS was not an option for me and only health was. I have never been more determined about anything in my whole life. I told the doctors I would be home from hospital by Saturday and that I would be fully recovered. They tried to advise me of the negative things that could happen when the drip came off and that I shouldn't get my hopes up about leaving hospital so soon. I told them I didn't want to hear. They told me that I had to have a spinal block and I told them I wouldn't need it. The day the drip came off I imagined all day what it would feel like to have no pain (apart from the normal fractured bone pain). I practiced the feeling of being healthy. I wrote pages about all of the good things that happened as a result of breaking my leg as I have never appreciated my life this much ever. I started to know that I would be fine. They took the drip off at 8.20pm and after I watched the clock for 30 minutes I cried and cried with relief and joy as I knew I was cured. There was no pain. I did it. The doctors came the following morning and saw me beaming from ear to ear. I went home that evening on my crutches. I've been home for 3 days now and I'm fine. I still have the recovery of my ankle and leg but I can do it easily. I fully intend to be running within 4 weeks and when I go to see my surgeon in a month I want him to be scratching his head in surprise as I'm not even supposed to be walking by then.
I am a very positive person and I was so determined to do this. I know that the power of the mind is beyond the power of everything. I believe that with our thoughts we emit vibrational signals and we live the result of these signals. The only signal I gave off after my diagnoses was health. Nothing else was an option. I kept telling myself I was cured. It worked and I expected it to. This might seem far fetched and not for everyone but each to their own. This worked for me and maybe it can show someone that it's possible to recover quickly no matter what the diagnosis is or what your doctor might say. Happy recovery to all of you readers - how would you feel if you were cured ?? Liz |
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Reading your story certainly gives hope that in this world there are doctors that know what they are doing right at the onset of this disease. They sound like a great team of doctors. |
rsd gone
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I wish you the best!! Abbie |
My daughter is 13 and was diagnosed 9 months ago. It sounds like the same thing that has helped your daughter has helped mine - lot's of exercise and psychotherapy, mostly aimed at taking her focus away from the pain. Her breakthrough came from an intensive program at Mayo Clinic in MN. She is in the school full day (something that Mayo absolutely insists on), but very much wishes she could just go half day. In terms of coping, I find I do better when I am able to balance the amount of time I focus on her issues (i.e. researching, spending time on this forum, taking her to appts, etc) and doing other things (working, having fun, cleaning the house). It's not good for either of us when I get sucked into her illness, but sometimes I do. I know that's probably not much help, but I at leasted wanted to let you know you're not alone.
Lori Quote:
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Hi Sage
I sure would want to hear from you too about this. I have RSD in left foot, ankle and calf. I so much want to be free of it. ginnie
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Re: about RSD
I don't know, maybe this is what happened to me. I sprained my foot badly, and was misdiagnosed with anterior tibial tendon disfunction(2years). The burning started. I then had two ganglion cysts removed, that were deep into the structure of the ankle. At last I went to a orthopedic surgeon, who told me I have three torn tendons. Including the archilles, one on the right of the foot, and one on the left, which colapsed my foot. Nothing seems to stop the pins and needles, burn, but I do have a lotion with Katemine in it that helps. Is there any other kind of specialist who might examine me? The ortho would not do the operation to correct the structure of my foot, for fear of making the RSD worse. I am stuck. ginnie
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