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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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New Member
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I've had RSD since 2000 and it spread through my entire body in 2005. I've been through just about all of the treatments along with drugs, an SCS and a pain pump.
I begin having these episodes of chest pain about a year ago. I can feel it when it’s coming on and it can happen with sitting, standing, laying down, eating and even wakes me up from sleep. My chest becomes really tight with crushing pain. I also get shortness of breath, sweaty, dizzy and nauseated. They last between 7-15 minutes or so and then slowly go away. I started having them a couple of times a month and now I'm having multiple episodes every other day. My family doctor put me on nitroglycerin, which does help after a couple of minutes. I was sent to a Cardiologist, who did a nuclear stress test and an echocardiogram. My results were normal. I asked the Cardiologist if he had any ideas as to what could be causing this and he said that it could be from the RSD, an autoimmune disease or something else totally. He recommended that I go back to the Neurologist and start this whole process all over again. I don’t mind going to see another specialist but I also don’t want to become another lab experiment either. If it's related to my RSD, I can accept that and move on but I've also been losing weight (26 lbs. since Nov.) without trying and I have a lot of fatigue. My regular doctor took some blood tests but everything looked good. My question is, has anyone experienced problems with chest pain due to their RSD? I'd like to hear from you. Thanks! |
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#2 | |||
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I do...and pretty regularly. This started to happen last year after my RSD spread to my upper body and got significantly worse. I also have an a pretty fast heart rate all the time now (always over 100 and often up around 160 when the pain is particularly bad). I had a lot of tests done and the conclusion is that it is related to the RSD...probably a result of the high pain levels since it gets worse when I go into a bad flare.
I have also had the dizziness, nausea, weakness, and sweating (plus balance issues, a ringing in my ears, nose bleeds, and blurry/double vision) and these were all caused by the RSD. It's definitely good to get it all checked out because you don't want to ignore something and just assume it's the RSD because if it isn't you could be ignoring something that could be treated and allowing it to get worse. But if you can't get any answers from the specialists then it could definitely be caused by RSD. I'm sorry that you are going through this...I know it is not a fun situation. I went nuts last year being bounced around from one specialist to another with my symptoms before the conclusion was RSD...and only came to that conclusion after I did the research and found out RSD can cause these things and brought the info to my doctor. The sympathetic nervous system can do some crazy stuff when it is malfunctioning... |
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"Thanks for this!" says: | palarin (04-12-2012) |
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#3 | ||
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I call these heart attacks but I'm sure they aren't. My RSD is in the left arm and hand and the first episode felt just like a heart attack is described in the literature. I took everything I have for pain with no effect so went to the hospital figuring it might really be heart. Nitroglycerin helped me as well. Turned out it was not a heart attack and they grow less virulent with each one and less frequent.
It's not something to play around with of course. It seems to be related to stress and with flares for me. It feels like a thick blanket of pain on my back and surrounding my heart with pain shooting down my arm. Pulse is usually near normal with BP somewhat elevated. |
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#4 | ||
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I'm sorry to hear that you're both dealing with the same issues. I wonder if the RSD could be the culprit in my case as well. It's scary because the symptoms does mimic a heart attack. As you know, the sympathetic nerves can signal pain in any area of our body. I'm going to see a Neurologist just to follow up but I'll also share the information that you provided as well.
Thanks so much for sharing with me! |
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#7 | ||
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A wrap on the hand is critical for me to keep it warm, I think. I also wear a sock on my left foot and sometimes a foam support of left elbow. At night in sproing and fall I have one sleeved pajamas. Diet is critical. Too much or too little salt will always bring on a flare. It used to be hard to hit the right mark with salt intake but the range is wider now so it's easier. Some chemicals like sodium nitrite have to be avoided. Small amounts don't bother me but larger amounts do. Watch out for water laden fish and meats since they use a chemical called sodium trypolyphosphate to get it to suckup the water. I can't tell this hurts anything but my wallet but it interferes with maintaining the right salt levels. Warmth is great and warm water is heaven. Any more than about 45 minutes a day in hot water though leads to panic attacks. I used to have difficulty using a tens because it exascerbated my tremor that keeps me awake but recently it hasn't been as bad. I'm also doing something very counterintuitive and using the tens closer to bedtime. It seems the medication is more effective against the tens induced tremor if it closely follows it. Themore work I do the better I feel. I've always had trouble with exercise but had lots of activity in work and play so it didn't matter. Now I have to exercise because I'm not very active. Work not only reduces the amount of exercise I need but it makes me feel useful. There are just lots of little things I've found that help. Most are really nothing but it seems part of what we need to do is lessen the "load" on the nervous system. Lessening mental and physical stresses are key. Ghinko biloba (~180 mg/ day)(120 in AM and 60 in PM) helps me tremendously. Having a good doc who understands your trouble is really important too. I try to stay comfortable but of course this isn't too easy anymore. I used to be comfortable at any temperature but now 71 can be too cold and 72 way too hot. I use multiple thermostatically controlled heaters to keep the temp in a narrow range and I raise or lower the range as necessary and change attire continually. |
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#8 | ||
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Are you on any medications that may have a side effect of weight-loss, loss of appetite, or anything similar? I know this isn't a lot of information, but I hope it helps some. |
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