Guest guest Posted March 20, 2004 Report Share Posted March 20, 2004 Jo, thanks for the reply. I've been to a couple pain specialists who don't want to try the blocks, it seems they are leary I might sue them or something. The guy in April is supposedly an RSD specialist. Why is ice a big no no and how do you survive without it? All my doctors have told me it's fine, whatever makes me feel better, and I haven't read anything about ice being bad. I'm not doubting you, just wondering why and how you stand the burning without it. If I don't have ice on it my knee literally turns lobster red. Let me know, thanks! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 20, 2004 Report Share Posted March 20, 2004 Hey Greybeard, thanks for that info, I got a little worried that I was causing myself more damage then helping myself. So far it helps me immensely, otherwise it burns out of control. I have found in the last month that the actual ice cuff hurts but it helps me so much right now that it is worth the pain of the cuff. Thanks though, I got a bit scared there for a minute! Today my pain was a little better than it has been because I didn't work...I hope you had a good day too = ) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 20, 2004 Report Share Posted March 20, 2004 Thanks , if you find the article let me know. I'm a little concerned that I'm not going to notice if the pain is worse because I always have it on, I can't even sleep without it. As you said, everybody is different but when you took the ice off did it get extremely red and hot? My knee gets so hot to the touch you can feel it even through my pants. I too had to stop pt though, they were doing ultrasound and I was jumping off the table from the pain. Are you in any type of therapy now? I feel like I'm just sitting here getting worse month after month and nobody is helping me. The nurse at my neurologist's office is terrible at returning phone calls, I have to call and call and then after a couple days she calls me back. Do others have this problem too with doctors? Sorry to ask so many questions but this is the first I've been able to talk to others who have RSD. Thanks for all your help - Lori Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 20, 2004 Report Share Posted March 20, 2004 Thanks Barbara, I guess one day I won't be able to tolerate it either. I have been to 2 pain management places. The first one did a nerve block that messed up my back so he sent me to a neurologist. I didn't like him, he wanted $15,000.00 for an 8 week program and I knew I would not be cured in 8 weeks. My new neurologist sent me to the pain doctor that he works with and the guy said he couldn't help me since all he did was nerve blocks, and he did not want to try another nerve block on me. I have been waiting a month and still have about 3 or 4 more weeks to wait and see the next pain doctor. I tried to have my neurologist get me in sooner but he said he couldn't so I'm stuck waiting around. I'm still looking for other possible doctors who will help me but am not having much luck. Believe me, I'm trying, as you know the pain is excruciating and very dibilitating. Thanks for the advice though, I'm going to pray I can use the ice for a while still. Best of luck to you too!! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 20, 2004 Report Share Posted March 20, 2004 Hello Lori, I wanted to take a moment to welcome you. As loads of people have said already, this is a great group of caring and supportive people. You indicate that you are seeing a Neurologist, and will be seeing a pain specialist in April. The sooner you can get in to see the pain specialist, the better. I wouldn't discount more blocks, as the one you had may not have been done properly. You are still in the early stages, which gives you the best chance of recovery. Also, you mentioned that you are applying ice to you knee. Ice is a great big " NO NO " for RSD patients. I've had four surgeries on my knee, and although I would love to, never put ice on it! Jo Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 20, 2004 Report Share Posted March 20, 2004 Hi Lori, Greybeard again, and I think you will find that over time ice will cause pain flare-ups like you would not even believe. Some of us that live in colder regions of the country curse winter even though I love the snow. I am not sure if you are just not susceptible to it, or not. If you can stand the ice it is fine, and I hope further down the road it doesn't affect you as it does the majority of the group. I know that if I use ice the pain is excruciating and progresses all through my affected right arm and hand. With me it feels like there is cold steel rod that goes all the way through my arm, and it takes me days to get back to normal. It is hard to explain, but with me the pain is so intense my arm is really useless, and it takes hours before I can use it. Not trying to scare you away from ice, but ice scares me. I hope you are having a tolerable and substantially reduced pain day. Mark B Why is ice a big no no and how do you survive without it? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 20, 2004 Report Share Posted March 20, 2004 Lori - I too avoid ice like the plague and would encourage you to get to a pain management clinic as soon as possible. An anesthesiologist who is ALSO baord certified in pain management is the best one do treat RSD/CRPS. My best to you. Barbara Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 20, 2004 Report Share Posted March 20, 2004 I'm thinking that Deb has this in the Links Section in the Group Pages......BUT: Ice can cause the RSD to Spread, or it can also make the Symptoms of RSD Worse. The reason for this is because RSD makes the veins/arteries constrict, which reduces the flow of the blood and oxygen to the limbs. Ice makes the veins constrict even more (get smaller)....therefore, it will make your pain even worse due to the fact that the blood and oxygen flow won't be able to get to the limb no longer. I hope that this is understandable.....right now, my mind is a jumbled up mess because of my recent med changes. But, the Ultrasound that you are talking about.....I had that done before also. And, it was before I was diagnosed with RSD..... When the lady that was doing it would get anywhere near below my knee in the front....where I have a lump at....I'd just about jump off the table!!! I was injured by being hit by a car that was going 4mph in the back of the knee (right knee). I was flagging for road construction when it happened. Well, somehow, although my knee was hit in the back, just about immediately, a lump formed in the front of my knee, just below it. I still have it, 3 1/2 years later..... The Physical Therapist kept trying to use that Ultrasound thing to push it back into my leg every day for 2 weeks straight! Now, The main thing that you DO need to know: If you are in Physical Therapy, and the Therapist does something or has you do something that causes MORE pain then what you are already experiencing.....as in pain that immediately shoots thru the knee/leg and makes you want to fall on the ground right then and there.....That means that what They/that exercise is doing is NOT helping. Some extra mild pain is ok.....that just means that your muscles are still working good and are being worked out. But, ANYTHING that puts you in more pain is NOT good and should be stopped immediately. The Phrase "No Pain, No Gain" DOES NOT Apply to those of us with RSD. Tonia -------Original Message------- know that if I use ice the pain is excruciating and progresses all through my affected right arm and hand. With me it feels like there is cold steel rod that goes all the way through my arm, and it takes me days to get back to normal. It is hard to explain, but with me the pain is so intense my arm is really useless, and it takes hours before I can use it. Not trying to scare you away from ice, but ice scares me. I hope you are having a tolerable and substantially reduced pain day. Lori, I too have had bad experiences with ice, before my condition was diagnosed I was sent to PT, well needless to say I never progressed like I was "supposed" to and in fact some days would be worse than others, my therapist would then give me an ice message, it felt okay as long as it was numb, but when that wore off I was almost in tears the rest of the day, this was when I was still working. So after work I would grab my pain pills as fast as I could. I hope that you don't have any bad effects from the ice, each of us are different, just be aware of the pain when the ice is not on, and notice if it seems to get worse. I was trying to find an article I read regarding RSD and ice but of course when you need something that is when you can't find it but I won't give up and I will let you know when I find it. take care, S. ____________________________________________________ IncrediMail - Email has finally evolved - Click Here Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 21, 2004 Report Share Posted March 21, 2004 Tonia, I have been trying to respond and print out your message so I can bring it to the doctor but for some reason I can't do either. I wanted to thank you for the great advice on the fibromyalgia, I will definitely bring it up to him. I dont' think I've done any more or less with my hands then I've been doing. Luckily I have my follow up appointment with him this Thursday. Believe me I have been trying to reach him for weeks about this and they just keep avoiding me. Thank you again, I will have him check for it! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 21, 2004 Report Share Posted March 21, 2004 Thank for about the questions, I was hoping I wasn't starting to annoy everyone...lol. How did you get started on the RSD Therapy? Was it through a neurologist or a pain specialist? When I saw the pain specialist who said he only did nerve blocks and couldn't help me I asked him about therapy and he just brushed it off like it was not important. I'm wondering if I should keep questioning my neurologist about it or if I should wait until my appointment in April with the specialist. Hope you have a good day today = ) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 21, 2004 Report Share Posted March 21, 2004 Janet, I feel alot of what you described and I wish I could help you but unfortunately I haven't found anything to help me yet. I have to wear shorts because I can't stand pants on my knee, and sometimes I'm freezing even though I live in Florida. I usually put a long shirt or sweatshirt over my t-shirt and end up taking it on and off over and over. I also keep a blanket near me so I can cover some of my legs if I get cold, and that too goes on and off. I don't think I have water like you do, I'm on Vioxx for the anti-inflammatory but I don't think it's doing a lot of good. I have not tried the Duragesic Patch but they did try Catapres on me and the side effects were too much, I couldn't work and have it on. It made me really sick to my stomach and so tired I couldn't keep my eyes open to save my life. I have a question about the cold weather - as I said I live in Florida so I'm fortunate with the weather but I have no family here, they are all in Virginia. I sometimes think about going home to have my family support me through this but the cold weather always stops me, aside from my job and my health insurance that comes with it. Is the cold worth it to be with my family? I think it is great that your family is sticking with you through this, you are very fortunate indeed. My mom is still kind of in denial about this whole thing. What dosage of Methadone are you on? I'm only on 10mg and I think my doc needs to increase it. As for being numb, that is the only way I can handle the burning pain in my knee, that's why I keep ice on it 24/7. But I can't do that with my arms and hands otherwise I'd have to lay in a bathtub of ice...heh. Good luck with the patch if you try it, let me know how it goes too, maybe I could try it as well. Best wishes to you and your family, have a good day today! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 21, 2004 Report Share Posted March 21, 2004 Janet, Thanks for writing me back, your case sounds so similar to mine, although I'm new to this if you ever just need to talk I'm here for you too. I am on my back all the time as well. Luckily for now my job is letting me work in bed, I only have to go in 1 day a week to go over things. I wish I had my family around, I can't even cook or clean for myself, but I figure I'll try and stick it out for as long as I can. I have nothing really to compare the weather so it's hard to say. I have not gone home since all this started, I was unable to travel at Christmas time and even now the thought of waiting in the airport and being on the plane is unbearable. So I've only been in warm weather so far. However, I've had many surgeries on my knees over the last 15 years and I know the cold weather affected them badly even before the RSD. I too have a horrible rash on my knee and I can only wear men's socks if that, most of the time I take those off too. My knee changes colors from red to bright lobster red if I have no ice on it, to very bruised looking. A friend visited me last night and by 10:30 I was in so much pain so he was getting ready to leave. I got up and he said my knee looked like someone took a bat and beat it to death. Does your rash change like that? Hopefully my doctor will do something on Thursday to help make this a bit more bearable. I pray you have a good day today, thanks for being a good friend, I love this group already. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 21, 2004 Report Share Posted March 21, 2004 Yes, you answered my question. Sounds to me like I just need to keep trying doctors until I happen upon the right one. I have an appointment with a rheumotalogist on March 30th. I'm actually going to her for testing for Lupus. My bloodwork came back with a positive ANA count for Lupus. Has anyone had this happen? My C-Protein came back ok though, which my primary care doctor said it would be high too if I had Lupus. Maybe the rheumotalogist will be a better person then my neurolgist. Some of you have mentioned an RSD doctor, how did you find them? I also have a personal question for the females - have any of you stopped your cycle? I've missed 2 now and am not active to be pregnant. , the advice on asking PT if they have treated RSD is a great idea, I will definitely do that when someone finally gets me into treatment. Hugs to you and a happy day. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 21, 2004 Report Share Posted March 21, 2004 Hi Lori, welcome to the group. I have been down for awhile with my kind of pain and torture with the HORRIBLE BURNING & SWELLING, I have recently went to my doctor and he told me that I am carrying around about 15 pounds of water weight, from all the swelling. I have NEVER been so MISERABLE in my entire life, than I am right this moment. I am going on my 8th year with the RSD, and have recently been diagnosed with FIBROMYALGIA. I have fallen down so many times, because of the extra weight I am carrying and my legs are getting so weak from all the weight. My doctor put me on Lasix (40 mg) and Hychloride it's another water pill, but this one is 50 mg. I take both of these together. I am going back in forth to peee!!!! I also agree with you Mark on the Cold. I too live in climate of cold and it bothers me so much. I love snow, I would give anything to be able to handle sledding again with my daughter as I did before this horrible nightmare came to my life. I am like alot of you, I am in so much pain. I feel like I could die from it. But I keep going for the sake of my family. Without them I would be no where! They make me keep fighting, recently I just lost my workman's comp case, I thought I could die. My witnesses were scared to come to the court to testify, afraid of losing their jobs. They were threatened, if they testify they could lose their job. So needless to say, this is how I lost. I couldn't prove it, without them. My witness, called my attorney the day before I was to go to court. I am now facing Bankruptcy, for something that wasn't my fault, I pay for this on a daily basis, I have now for 8 years. It's taken me from my kids that I cherish. I have missed being with my ex-husband. Yes, we live together and my daughter. Can you believe it, even though I had this monster of a disease, he still wants me I feel fortunate!!!!!! This is why I keep fighting everyday, the pain is out of this world but I won't give this company the time of the day to put me in a wheelchair for something that they did to me!!!! I know this don't sound right, but I don't know what else to do when it comes to this. Does anyone get cold one minute, and have to wear a shorts the sametime, I feel like I am always shedding clothes, I wear layers. ha! I am burning up right now, so I had better stop. Also, does anyone take the DURAGESIC PATCH my doctor wants me to try this, I have been on Methadone going on 4 years, it does help alot, but not for all the pain. I have to be NUMB somehow, to handle this hell everyday!!!! What is the best anti-inflammatory to take for the burning pain? Thanks JanetMark D Boone wrote: Hi Lori, Greybeard again, and I think you will find that over time ice will cause pain flare-ups like you would not even believe. Some of us that live in colder regions of the country curse winter even though I love the snow. I am not sure if you are just not susceptible to it, or not. If you can stand the ice it is fine, and I hope further down the road it doesn't affect you as it does the majority of the group. I know that if I use ice the pain is excruciating and progresses all through my affected right arm and hand. With me it feels like there is cold steel rod that goes all the way through my arm, and it takes me days to get back to normal. It is hard to explain, but with me the pain is so intense my arm is really useless, and it takes hours before I can use it. Not trying to scare you away from ice, but ice scares me. I hope you are having a tolerable and substantially reduced pain day. Mark B Why is ice a big no no and how do you survive without it? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 21, 2004 Report Share Posted March 21, 2004 Hi JoAnn, thanks for the advice and you are right, I am very confused on the ice issue. I've tried a heating pad both on my knee and my arms, it did not help. My old PT used to alternate ice and heat to try and get the blood circulating but I had to stop going as everything became too painful to bear. My biggest concern is how do I deal with the pain without ice? I understand it takes time but in between if I don't keep ice on my knee it turns bright, bright red and burns out of control. Without the right blocks and meds and then no ice on top of it I think I will lose my mind in pain. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 21, 2004 Report Share Posted March 21, 2004 Thank you Tonia, I haven't fully explored all the information on the website yet. I suppose I should before asking all these questions, huh?! lol....anyway I do appreciate it and I will definitely speak to my doctor about it on Thursday. I understand the reasoning but somehow the heat has to be under control. Many times it is so hot you can feel it through my clothing if I happen to have pants on, and it turns so red. It happened at my old pain doctor and he freaked out, swore it was an infection and said he could probably fry an egg on my knee. That is why I keep ice on it and I don't know how else to help it, but I will talk to my doc. Thanks for everything and have a great night. Lori Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 21, 2004 Report Share Posted March 21, 2004 oh...also...I'm not in therapy anymore thought I need to be. My pt was not that familiar with RSD so when the ultrasound was so painful - yes I was jumping off the table too! - he said we should stop until I get this figured out. I'm trying to get back into therapy but my doctor hasn't come up with a program for me yet. But I will keep all of your helpful hints for when I do begin again. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 21, 2004 Report Share Posted March 21, 2004 Thanks Barbara, I will look them up. It hurts to have the ice on but it is worth the pain to keep the burning away. I don't know if yours burns like mine but I will go insane. It's actually not ice like cubes but it's a cooler that I got after my surgeries, you fill it with ice and water and it pumps cold water into this cuff that is on my knee. I don't know if that makes a difference or not, perhaps I should have explained it earlier. But I will research it, thanks for the info and have a great night! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 21, 2004 Report Share Posted March 21, 2004 Thanks Tonia, I was on Topamax for a while and then they switched me to Neurontin. I'm on 600 mg 3 times a day but it doesn't take the burning away. I will mention the others to my doc. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 21, 2004 Report Share Posted March 21, 2004 My knee most of the time is a dull red and kind of black and blue, like someone beat it with a bat. However, when I take the cuff off, after about 10 minutes the knee turns bright bright red and burns. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 21, 2004 Report Share Posted March 21, 2004 Tonia, No, I have a cuff that velcros on but I do have to fill it with ice many times a day and my hands get all red and then some of the fingers get extremely white. Also if I"m in my office I only have an ice bag so sometimes I hold it on at work. I just googled RSD and Ice and all I can say is wow, from what I read why in the world did my doctor say it was ok. He is a Neurologist / Pain Specialist and Pschiatry. I asked him how many cases of RSD he has dealt with and he told me many, but he told me to use ice?? I'm so upset, really thank you all for the heads up, I really don't know what to do. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 21, 2004 Report Share Posted March 21, 2004 Lori I do not know if written you but please know that what the others are saying about ice is an absolute as far as rsd doctors for me or my daughter who also has rsd knows. My daughter lives in Houston and I live close to Memphis, TN and have checked doctors in 3 cities around me and none will even think of giving ice. Now it is possible to find doctors that will give you a speech of it doesn't hurt do it and others of if you are taking physical therapy it has to hurt to get better and both are wrong. You don't do physical therapy that hurts you and don't do ice as the side effects are a price your not going to want to pay. I cannot provide you with written pages as just know from others and know from experience. And the experience of hundreds and hundreds of others. Know this can be confusing to you having doctors not wanting to give blocks and giving ice to you but you just like almost all of us have not gotten to the correct doctors yet. Takes some of us a year of going to many doctors to find the one that really understands rsd and knows how to do block right and knows how important they are. Hope this helps some. Don't let it scare you that ice is wrong and that you have not the best doc's yet, just let it be a good thing to learn so that you will stop doing things to harm you and start to find the best doctor for you. Know you want this done as of yesterday, and pain gone, but it takes time to get doctors, blocks and the correct meds to help. But it will happen, so don't give up, and don't be scared, this will get better just have to be deligent and hold on to truth that things will improve with correct doctors. Have you tried a heating pad on your knee? Sometimes they help. s MommaJoAnn Re: Welcome Lori Thanks , if you find the article let me know. I'm a little concerned that I'm not going to notice if the pain is worse because I always have it on, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 21, 2004 Report Share Posted March 21, 2004 Lori - JoAnn and all are correct about the the "no ice" thing. If you go to google and type in rsd and ice, you will see a large number of articles that advise against it. While it might feel fine when you're doing it (though I can't imagine how!), it does lead to problems later on down the road. Please re-think all of this. Many of the RSD/CRPS "gurus" (e.g. Stanton-Hicks,etc.) strongly advise against the use of ice. My best. Barbara Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 21, 2004 Report Share Posted March 21, 2004 Lori, The bright red coloring is either a "normal" RSD thing, or, it could be because of the ice. To get rid of the burning pain.....tell your doctor to try one of these: Topamax Neurontin Gabitril Zonegran What these are, is Anti-Seizure medications that are originally for People with Epilepsy or other seizure disorders. But, the meds also helps us out by getting the burning pain, stabbing pain, muscle spasms and cramps all under control. So far, I've noticed that just about everyone is on one of these or another for the Burning Pain and the Muscle Spasms. I was on Topamax for a year because of the burning pain.....and it worked Great!!! Tonia -------Original Message------- Hi JoAnn, thanks for the advice and you are right, I am very confused on the ice issue. I've tried a heating pad both on my knee and my arms, it did not help. My old PT used to alternate ice and heat to try and get the blood circulating but I had to stop going as everything became too painful to bear. My biggest concern is how do I deal with the pain without ice? I understand it takes time but in between if I don't keep ice on my knee it turns bright, bright red and burns out of control. Without the right blocks and meds and then no ice on top of it I think I will lose my mind in pain. ____________________________________________________ IncrediMail - Email has finally evolved - Click Here Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 21, 2004 Report Share Posted March 21, 2004 Lori, If you have had to hold the ice on your leg with your hands.....then I'm going to just jump in and say that yes, the RSD has spread to your hands because of the ice. I had this happen to mine during the first 6 months of my own use before I knew I had RSD. Tonia ____________________________________________________ IncrediMail - Email has finally evolved - Click Here Quote Link to comment Share on other sites More sharing options...
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