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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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#31 | |||
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Vivid, I am so sorry for what you are dealing with and sorry I am way late in reading this thread. It appears that many have given you some really great advice, this is a great place for help!!!
I have had RSD/CRPS for over 22 years now; I have it thru most of my body. I am one that benefited from nerve blocks at the beginning but only had little relief when they tried tried them later (with new spreads). I did not benefit from PT, it made things worse for me. But I know many on here have found great luck and relief with it...everyone is different in what they respond to. One thing is certain, ice and hot/cold therapy is the worst!!! Desensitization therapy was brutal. My SCS's actually helped with desensitization. Anyway, I hope you get relief soon and I wish you the best of luck with WC. Nanc ![]() |
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"Thanks for this!" says: | vividDC (09-12-2013) |
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#32 | |||
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Junior Member
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anonymous730, I relate to the feelings expressed in your post almost to a ti! Thank you for posting, all of you. This is really giving me some support from others who know what it's like to have this monster attacking your body and mind. Those sudden shock/stab pains are SO UNPREDICTABLE and so bad that I can't breathe. I have been having a horrible week so far. I am concerned the CRPS is spreading up the front of my leg. There is a hairless, purple line, and it started tingling/prickling with electrical sensations about 2 weeks ago. Now it is almost constant and leaning toward burning. This is EXACTLY how the now very, very painful area started. I am sooo anxious about this.
I am having a lot of other stress this week which doesn't help. I called my doc about that new sensation last week, and a nurse returned my call and got me mixed up with another patient. ![]() Well, at PT on Tuesday, I had the worst appointment ever. I was in 8-9 pain range, should probably have not even drove there. It was SO hard to concentrate and interact. I started on the bike and could barely even do the lowest setting without pain spikes. I stretched on the stairs and had lots of pain. Then the PT put me on the table and I was having stabbing pains and it was very intense and painful. Then he came out with a big piece of silly-putty substance and told me to squeeze as hard as I needed and then he put ice pack right on it again! I was so shocked. I have already said multiple times I do not want to do that hot-cold treatment anymore! To both PTs that I have seen there! I was so upset and it was also extremely painful, 10/10 pain, I was writhing around on the table trying to get out of it, felt like I was going to pass out. The pain was so bad I was crying like a baby. It was horrible, and I felt embarrassed crying because there were other people there. The pain was soooo much worse. He said it helped the discoloring (which was atrocious this day), but it didn’t look like it did to me, and it just got worse in a minute. I asked him if he was sure about that cold treatment and he said yes, but I am not. Anyway, I did some ankle movements and then heat pad and left. I need to get more PT authorized from the doc to go back. I am getting weary about that PT place, and next time I will outright demand NOT HOT/COLD or I will just leave! Well the rest of the night really sucked, and it didn’t feel safe driving home, too much pain, I’m anxious that I might lose control of the vehicle. Also I couldn’t get my clonazepam refilled today, has to wait until 9/13, having a terrible streak of bad sleep nights. Then yesterday I met with a lawyer and it turned out to be really great. It was only supposed to be a 30 min free consultation but it turned into a 2 hour free consultation. He got lots of info, comprehensive of my whole situation, took a lot of notes, made copies, even made a tape recording himself and me a little. I asked all the questions I needed to ask and said what I needed to say. This guy has been doing WC law for over 40 years and he is very successful, and he seems honest and like a genuine "i will help you" kind of guy. He even said I don't need to hire him at that time, because no pressing legal issues, except for that WC won't pay my psychiatric care, which is needed directly because of the injury, but I don't want to pursue that at this time because my employer benefits are still in effect and they pay it full, well, except for prescriptions, so I'll think about it. Anyway, he gave me some cards and said he would help me and that I could call and even meet with him for free without paying him a dime. He told me to show a card to my NCM today at my appointment, and say I talked to a lawyer, didn't hire him yet, but he offered to talk and meet with me anytime something important comes up. Maybe that will slow her down a bit. I am DEFINITELY not able or ready to go back to work, don't even think I can do a sitting job. I usually have to get whatever work on the computer I can done in the morning because the pain gets so much worse throughout the day, especially evening/night. Well I feel pretty delirious now from lack of sleep and that prickling sensation on the front of my leg feels like needles are permanently over the area like a needle cloth, not quite poking or burning yet, but definitely annoying and uncomfortable. Wish me luck, going to eat something then head to the doctor. Also I will try to attach pictures later if I am feeling up to it to show y'all the spot where it seems to be spreading, looks very strange, just a hairless, purple line right up the front of my shin going toward my inner-knee. |
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#33 | |||
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[QUOTE=vividDC;1014149]Those sudden shock/stab pains are SO UNPREDICTABLE and so bad that I can't breathe. I have been having a horrible week so far. I am concerned the CRPS is spreading up the front of my leg. There is a hairless, purple line, and it started tingling/prickling with electrical sensations about 2 weeks ago. Now it is almost constant and leaning toward burning. This is EXACTLY how the now very, very painful area started. I am sooo anxious about this. [QUOTE]
I have lots of those red/purple lines you speak of on my right leg, below the knee shin area. This is the leg my RSD started in. Although mine (the lines / vessels) are not necessarily painful. I have gotten lots more of them over the years (almost 10 years in now) on that same leg. My left leg does not have any at all… yet. BUT all of my limbs, hands, feet, and sometimes my chest and face have that lovely spotted red color. My RSD / CRPS II is full body. PT: I am concerned about your treatment. Are you going to PT at a hospital? I am concern that they are pushing too much. If it hurts, you should stop. And ice is a no, no. I have found that a warm/hot bath will help to relax my muscles. Epson salts help too. I mean nothing is a cure, but moments of some relief are welcoming. The searing lightning strikes are the worst of the pains I feel. They will literally take my breath away! ![]() ![]() Hang in there girl and perhaps the doctor will be able to help answer some questions for you. ![]() |
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#34 | |||
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Junior Member
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Hey... haven't posted here for a few months... time for an update. Unfortunately, I have no good news to report. In fact, things have got much worse. When I last posted, I was concerned about noticeable spreading starting to occur and whether to continue PT. Well the spreading continued and my whole shin and top of my foot turned red and blotchy over a few weeks, and has stayed this way, with color and skin changes, to this day. PT treatment was terminated shortly after my last post, due to the doctor's and PTs (mostly the compassionate PTs) thinking that forcing this activity was doing more harm than good, as I had no improvement for 3 months of going 3 times per week. I haven't been there for a while.
My last office doctor's appointment at the pain clinic was a downer, and it's been this way since... he told me that we have exhausted all medication options except for opiates, which I have been trying to avoid, but have been consistently taking as low a dose as possible for a month straight now. He said at that appointment that it's procedural from here on out. I had a hell of a time getting the sympathetic nerve block injections processed by the hospital and approved by WC. A cancelled appointment delayed the procedure for another 3 weeks, during which the spreading and increased pain continued to grow. It was all for a disappointment. The procedure itself was textbook, they got an 8 degree response in my foot, the best they ever saw, so they said. I hardly got a hint of relief from the damn thing, and had a spike so bad in the hallway on the way out that they had to wheel me to the car. The side effects of this injection sucked, but they mostly passed... except for one, agonizing thing. I have had pain in new places, my thigh, stronger in my inner-knee, and especially in my back right near the injection site... this pain has dramatically increased in intensity, and now this whole line, from lower back to original area in ankle, is just a raging pain factory, day in and day out it seems like. It was so bad that the doc cancelled the second injection and told me my pain is largely sympathetically independent at this point, and that nerve blocks will not work. I am awaiting approval for a spinal cord stimulator test on January 3rd. I am really nervous about it, and frankly, not very hopeful from what I am researching, although there are some promising success stories. I always seem to get worse after procedural intervention, much worse. I struggle with understanding if the intervention is being perceived as trauma, or if it's just the natural progression of this monstrous condition. I am really in a bind of what to do for this test. The pain in my back is killer and it feels like this has spread far beyond my lower right leg, so how will a stimulator help all the areas at once? My wife does not want me to do it after what has happened with my other procedures, and I can see her point, but it's like, my last "non-experimental" chance (using my doctor's words), and this is so brutal I can hardly take it anymore. At the same time, I don't want more trauma to be perceived in my back, near my organs... My saving grace has been my wife and dogs, my spirituality and a god-send of a therapist who has really helped me keep myself together mentally through all this pain and confusion. I also just found a family doctor who really wants to help me and be there for me and try to make things easier. But as I write this post, my ankle is aching and burning, and stabbing electrical pains run from my lower right back to my right ankle several times per minute. I can barely sit up in this desk chair anymore, let alone walk or exercise. I had such a long, intense and agonizing flare up yesterday (Wednesday) that the pain caused me to vomit and black out in the early afternoon, and my wife had to take me to the ER, where they treated my pain and ran some tests to rule out any other possibility for passing out besides pain, which they did. It was very scary, and I'm not doing a whole lot better today and tonight. That was my first trip to the ER, and there is really not much they can do for a CRPS patient there except for pump some drugs and wait until the flare up passes, but the chronic pain is still there, an unwanted guest infesting your body, signaling a neuronal disaster. "Pain is absurd because it exists." - Charles Bukowski Please offer me your advice about my situation with the upcoming spinal cord stimulator test... |
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#35 | ||
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Senior Member
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Vivid, good to see you back, but I'm so sorry to hear how bad things are now...
I'm so so glad you are not doing that PT anymore, ice is SO bad for CRPS, and your therapist, however nice they were, sounds like they were doing all the wrong things to treat your actual condition. It's a terribly sad situation when you can't trust medical professionals ![]() I don't know what to advise about the SCS, because as you say, there are so many different stores and opinions....it's really is something only you and can decide. I hear you on the 'opiates or nothing else left' as far as the meds go, it really sucks when you realise how little they really have in terms of pain relief options. The SCS is invasive, but as you say it has worked well for some....if your pain is terrible already, maybe it is worth a go? I wish you loads of luck whatever you decide. Hang in there Vivid, and don't give up hope of there being something that can help you with this horrible disease. I'll be thinking of you. Bram ![]()
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CRPS started in left knee after op in Aug. 2011 Spread to entire left leg and foot, left arm, right foot. Coeliac since 2007. Patella femoral arthritis both knees. Keep smiling! . |
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#36 | |||
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Hi Vivid,
welcome back, but sorry it for all the bad reasons. I'm so sorry nothing is touching your pain! I did a trial of the SCS back in July for 5 days. I'm happy to share my experience with you. No time at the moment buy I'll get back to by days end. ![]()
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RSD/CRPS and contracture of left hand and arm after surgery for broken wrist. |
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#37 | |||
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Junior Member
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thanks that would be nice
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#38 | |||
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Member
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Hard decision even to do trial SCS. My Pain Mgt. Dr. was like a bulldog & finally got insurance to approve it so that got rid of that excuse. I'm sure you know what I mean. After you read all the horror stories of what can & does go wrong your're a little shy about the proceedures. But then, you think to yourself "you want to try everything you can to get better right?"
So for me the trial insertion went o.k. The next I went back for the SCS Rep. to program in all the settings on the "control" that came out my back. My RSD/ CRPS is in my left arm & had so the lead wires had to go threaded from my lower back all the way to my neck area. My P.M. figured the chance of 'spread" would be less if they started in my lower back. Anyway I had 6 programs to choose from & had intense physical therapy during those 5 days. They suggested i try all the programs to see what "torture" I could withstand during therapy to try to regain range of motion in my hand and wrist. Well, some progress was made and some of the pain was replaced with the electrical impulses of the SCS. It sucked because I couldn't shower during trial implant & I'm an extremely clean person so I took some weird measures to be clean. Since you are so very sensitive to anything invasive, maybe you should even avoid the trial. I decided NOT to get the permanant SCS implant 1. because it did not give me that much pain improvement over the nerve blocks. 2. because I've read that the permanent implant of the SCS is more of a true "surgery". To me I'm afraid the CRPS/RSD would have a way better chance to spread becau8se of that. 3. I've read that multiple surgeries are required sometimes because of "lead migiations" or batteries burning. Please do research for your self and talk to your wife. Everyone's experience is different. Some people are grateful for the pain relief provided by the SCS even if a few years later they have it removed. ![]()
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RSD/CRPS and contracture of left hand and arm after surgery for broken wrist. |
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"Thanks for this!" says: | Brambledog (12-21-2013), RSD ME (12-22-2013) |
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#39 | ||
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#40 | ||
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Senior Member
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Hi Vivid, I'm sorry you're suffering so much and just wanted you to know that I was thinking of you and hope that you'll feel better soon. My pm dr was pushing for a SCS for over a year but my neurologist and gp they thought it could possibly cause an infection and a chance of spread of my rsd. After weighing the pros and cons I decided not to do it. But it's definitely a personal decision. I know some people who said it helped them and others who said it didn't. I was also told that after two years of having rsd the chances of it helping were minimal anyway. I have had rsd for almost three years now so it's something I will never do. I was also warned from some of my drs that some drs push for the SCS because it's a very expensive procedure. It's something they wanted me to beware of. Whatever you decide to do, I hope you find something that helps you to feel better soon. Take care.
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RSD ME . |
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