Guest guest Posted March 21, 2004 Report Share Posted March 21, 2004 My friend you wont loose your mind. There has to be a med to help with the burning and I know that those on this digest use meds for burning and even though have not read many messages I would assume they have offered the names of meds for burning. I thought Baclofine helped and if not uses something and can ask her and tell you what help her. Just keep trying meds for burning, if one does not work try another. But sometimes might take a week perhaps to see any great relief. Hang in, your not going to loose your mind, you are in pain but you are heading in right direction getting information to help you do things that will help and not hurt as not using the ice even though it makes little sense due to your having relief. But trust those on here they know what they are talking about. And each day is a day closer to the right doctor and right pt. which I had great pt as did kelly and Water therapy, as in a pool is good for you. Was the main thing that got able to walk as her rsd is both legs, feet and upper thighs. The SCS is also a blessing for her. Know others do not have success but alot do so is something you could try as if you don't you might be missing one of the best helps for your pain. Just keep believing and knowing your getting closer to having less pain, it will happen it has happened for each person on here. Not that they don't have flares, they do, but it does usually ease up. Try not to be scared as fear usually causes you to tense up and that makes your muscles around your knee tighten and hurt you more. And if you do have Fibro same thing, just makes it all worse. Not easy to relax and not easy to not fear, but fear won't change a darn thing and besides just makes a person blue and down, so try to go through the pain with something that bring joyful thoughts to your mind however it works for you. Is one thing I know helps, sometimes it helps more than others, but fear will not help unless it is fear telling you something about a doctor or treatment is wrong, that is constructive. But fear of unknow which is normal of course, has no physical benefit. Does that make any sense to you Lori. Sorry, I know write novels, try to do better but think it is just me. Hugs s Momma JoAnn Re: Welcome Lori 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 just could not think of the meds, you are just wonderful to know these and tell her. What a great friend and helper. Gee woman you are just so darn smart. Going to be President and know all this, your kids will be Governors and Mayors and just all great helps to Country. And we can all say we knew her "when". Really, thank you for the names of meds know they help Lori and others. Kellsy Momma JoAnn Re: Welcome Lori 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. Tonia .. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 22, 2004 Report Share Posted March 22, 2004 JoAnn, It's ok about the novels...lol...I tend to write alot too as you can probably see. I am trying not to fear but it is difficult. Finding all of you has definitely helped, just knowing I'm not alone in this and all of the great advice. I plan on questioning my doctor about the ice and hopefully he will give me something for the burning. Again, is it ok to question him and bring him all of this information that you guys are providing? I pray that it will get better. It's just a little scary sometimes when I hear how long you have all been suffering with this and it seems alot of you have gone one disability, and that scares me a little bit. But I'm trying to hang in there for now and still trying desparately to find a good doctor. I went to one of the links on the website to find a doctor and it didn't work. Does anyone know a place to find doctors? Well I really have to get going, I'm running late already, I will be back after a shower. Thank you for everything JoAnn, I pray for you and your daughter too. Lori Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 22, 2004 Report Share Posted March 22, 2004 Lori, I think I might have mentioned that I had four knee surgeries.... the first, I believe started the RSD. I had the same problem with swelling, heat, etc. but was not told early on not to put ice on it. After my second surgery, when they removed half of my knee cap, I had a "cuff" on and thought I was in heaven and would never give it up. The THIRD knee surgeon took one look at me, said RSD and NO ICE. It was difficult for a while, but once the blood vessels, etc. got back to (RSD) normal, it got much better. Of course, I have the hyper-sensitivity there, etc. I still feel as though someone hit me in the knee with a baseball bat as well. Funny, that is always how I decribe the pain to Drs. Maybe cool water on a cloth for a while? Hugs, JO Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 22, 2004 Report Share Posted March 22, 2004 Lori - Just adding to JoAnn's note.....This entire situation that we all have to (try) to deal with is really pretty nasty. I too have constant burning, swelling, redness, horrific spasms, electrical "zings,'" extreme sensitivity to being touched, skin changes (shiny with little punctures), severe muscle atrophy, etc. etc. After having been on a total of 3600 mg per day of Neurontin (gabapentin), I told my doc that it seemed pointless to keep throwing something into my body that didn't appear to be offering relief of any significance. For me, I'm a firm believer in "less is better." My work, although very demanding, is my world....or at least a big part of my world. Narcotics are not an option for me because they effect my mental clarity and alertness which is problematic with the kind of work that I do. Sooooooooo, after much bantering back and forth, I agreed to go with Valium for the spasms (since neither zonergan nor soma nor tinzanidine worked for me). I also use the lidocaine patches from 7AM to 7PM so that my pain and treatment are "invisible" to others during the day/work hours. My first go-around with the SCS was a terrible waste....only becuase it had to be implanted in the cervical/thoracic are and was too positional to offer any benefit. Three months later (a week and a half ago) they removed the whole system and re-implanted it using a more invasive technique. Well after many years of wrestling with this bear, I'm in luck. The SCS doesn't cover all of the pain, but it cuts it enough to make life easier. If my neurosurgeon clears me this morning, I'll head back to work next Monday. Yea!!!!!!!!! This new SCS is still a trifle positional but I'm pleased. We can only hope that one day the medical research world will arrive at a better understanding of this condition and ways to more successfully treat it. In the meanwhile, I will suck it up, get help and support where I need it, and try to not to let the pain and frustration get to me.....as I'm certain that it could. Not to sound earthy-crunchy, but I find meditation helps as does distracting myself with pleasurable activities. In no way am I minimizing the excrutiating pain that faces each of us. My best suggestion to you is to hook up with the most competent and compassionate group of docs that you can find....work with them to find a regimen that works best for you (though know that it will likely not totally work) and keep breathing. Seriously, I think the folks that are able to say "I have RSD but it doesn't have me" fare the best in the long term. Hey, JoAnn....quite a novel for me, eh? My very best to you, Lori. Keep asking questions. We're here for you. Barbara Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 22, 2004 Report Share Posted March 22, 2004 Thank you Barbara, I appreciate your inspiring words. I wonder sometimes too why I'm taking all of this medication and not getting any relief. It is very frustrating as you know. I think I would feel alot better if I had a doctor who at least responded to my phone calls and if I was getting some additional treatment along with the medication. At least mentally I would feel like I'm doing something to fight this. I used to do alot of things to keep my mind off the pain like reading, cross stitching, word puzzles, etc, but have not been able to do these thing since my arms and hands started hurting. I bought a bed tray to at least help with reading, but I have not figured out a solution to the cross stitching and I used to do that nightly while I watched tv. So not to complain but the loss of my hobbies has me a bit down now too. Hopefully I will get this all under control somewhat. Thank you for listening to me and being so helpful. I'm so happy I found all of you and I feel a bit better about the future. What exactly is the SCS, maybe I could ask my doctor about it? Lori Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 22, 2004 Report Share Posted March 22, 2004 Well when I say "Ice" I mean water really. I'll describe it and you can let me know if it is ok, at least until I get different medication. It is a cooler that you fill with ice and water. There is a pump in there which pumps cold water into a cuff that is around your knee. Of course I put a towel inbetween too so it is not directly on my skin. So it is not actually ice, it is just cold water....what do you think? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 22, 2004 Report Share Posted March 22, 2004 Water temps for RSD people should be between 92 and 104 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 23, 2004 Report Share Posted March 23, 2004 , that was a big help, thank you! I didn't know what it stood for. I would definitely have to find someone experienced, I know I am not in the right hands now for that kind of procedure. I will keep it in mind for the future though. Thanks again...Lori Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 23, 2004 Report Share Posted March 23, 2004 , Thanks for understanding, it is frustrating. You give up everything outside of the house that you might have done...even shopping is difficult...and you find things to keep your mind off of it, then you can't even do thoese. I hope it gets better in the near future! Luckily I got presents done for everyone in my family last christmas of cross stitching before I was unable to do it. Anyway, I'm going to keep faith that I haven't given it up forever! Have a great day...Lori Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 23, 2004 Report Share Posted March 23, 2004 Thanks for the info, the water definitely is not between those temps. Lori Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 23, 2004 Report Share Posted March 23, 2004 Barbara, Thank you for your uplifting words. I hear what you are saying, I am a piano player too, since I was like 5, and I can't play at the moment either. I still have my piano but I may get rid of it sometime down the road. The hardest part for me is these are the things I started doing since I couldn't do the things I normally love, and now those are taken away from me too. I rack my brain to think of things to keep me occupied. To lay here and just watch tv leaves my mind to open to the pain. I'm sure I will find other things soon, and sometimes I can cross stitch for an hour or so though I haven't since my hands started hurting. I do work alot too and that keeps me busy and happy, I love my job. Thank you for the info on the SCS, it is not something I want to do right now after reading what it is, but it is good info for later on. Have a great day...Lori Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 23, 2004 Report Share Posted March 23, 2004 humm lori if you can tell me where the water temps should be i would appreciate it, you may have more updated temps then what i do, I get most of my info thou RSD org. or from U.K. as the have had one of the biggest and most info sites out there. Lynn Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 23, 2004 Report Share Posted March 23, 2004 Lori think I read what you wrote wrong. sorry i stay confussed.lol Lynn Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 23, 2004 Report Share Posted March 23, 2004 Lori - I know all too well that the loss of being able to do some of the things that I used to enjoy. When this all hit me 12 years ago, I had been playing piano. flute, abd guitar for almost my entire life including having taken 25+ years of professional piano study and 20+ years of flute lessons at the university. I purposely didn't make a career of it because I never wanted something that fed my soul to turn into "a job." All of that was gone in a blink of an eye and a horrific fall down a flight of stairs. I guess the way that I got through it was I kept trying for a while (unsuccessfully) and then gave myself time to grieve the loss. After a walloping pity party, I gave my piano, flute and guitar away to friends with the understanding that they had to commit to having at least one of their kids take professional lessons. I then let go of my sadness and anger. Don't get me wrong. There isn't a minute that I don't miss the life that I previously led, but I have gradually found other interests and activities.This whole thing is one damned dirty trick and there are times when I feel extremely betrayed by my body. It sucks canal water. I've thrown myself, however, into my work and have pursued a variety of interests outside of the career that I enjoy. I have some activities for "good" days, some for so-so days, and some for the crappy ones. For the really downright horrible nasty days, I just go to work, come home, and crash with the hope that the next day just might be a better one. I really hope that I don't sound like I am pontificating. It just sounds like you're so new to this and if I can somehow soften your heartache then it might be worth it. As for the SCS. They typically don't approve it right off the bat. Check out the websites for both Medtronic and Advanced Neuromodulation Systems (get that google going, girl). As the major manufacturers of spinal cord stimulation systems (also known as dorsal column stimulators), they can explain anything and everything you might ever want to know about the SCS. In simple terms, the system scrambles the pain signals and replaces them with a more agreeable (although not totally pleasant I have to admit) pins and needles feeling called paresthesia. I frankly hate the sensation but it beats the dickens out of the extreme pain. It doesn't take away all of the pain. I'm not aware of anything that does that.....but it does reduce it to a more manageable level. In fact, if it doesn't reduce by at least one-half during the trial period of 3 - 7 days, they won't move forward with the final step of the implantation procedure. The are of the spine where they do the implantation of the electrodes varies depending on where your RSD is. My RSD is upper body.....I only have relatively minor issues with my left foot and even that appears to me (and my docs) to be more related to nerve damage (another story too long to add to this already ridiculously lengthy "note.)" My SCS is implanted in the cervical area. Hang in there.....Life IS good. Barbara AlwayzLoRi@... wrote: I used to do alot of things to keep my mind off the pain like reading, cross stitching, word puzzles, etc, but have not been able to do these thing since my arms and hands started hurting. I bought a bed tray to at least help with reading, but I have not figured out a solution to the cross stitching and I used to do that nightly while I watched tv. So not to complain but the loss of my hobbies has me a bit down now too. What exactly is the SCS, maybe I could ask my doctor about it? Lori. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 23, 2004 Report Share Posted March 23, 2004 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 Hi Lori, Did your PT use the alternating ice/heat where you put your hands, etc, in different tubs of water? They tried the contrast baths with me where I had to keep both hands in ice water for a minute and then to the warm water it was horrible, the pain was so bad I refused to try it again. With RSD the old saying "no pain, no gain" does not apply. Hoping for Pain Free Days,Sandi Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 23, 2004 Report Share Posted March 23, 2004 LOL no problem! I get confused myself!! Lori Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 23, 2004 Report Share Posted March 23, 2004 Lynn, I'm not the best person to help you with this, as I was just recently told that ice was very bad for me! I'm not sure exactly where the water temps should be. Sorry!!! Can anyone help? Lori Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 23, 2004 Report Share Posted March 23, 2004 Sandi, This was done on my knee so the used a soft gel ice pack, and then like a thick heated pad which they would alternate. I couldn't imagine putting your hands in a bowl of ice....ouch!!!! I can only stand water, not hard ice. I hope you are feeling well. Lori Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 23, 2004 Report Share Posted March 23, 2004 WOW Barbara, not even doing the correct thing and erasing anything you said. Just so darn proud of you woman!!!!! You did a fine job for your first almost novel and I am clapping for you my friend and also saying many prayers of gratitude to God for healing you and you getting back to work. Now that is worth a big Praise. So happy for you Barbara and Lori she is one smart, kind, wonderful, most loving person and she has certainly given you great advise. If you will take it and learn from her will do you well as it has me. Take care both of you. s Momma JoAnn Re: Welcome Lori Lori - Just adding to JoAnn's note.....This entire situation that we all have to (try) to deal with is really pretty nasty. I too have constant burning, swelling, redness, horrific spasms, electrical "zings,'" extreme sensitivity to being touched, skin changes (shiny with little punctures), severe muscle atrophy, etc. etc. After having been on a total of 3600 mg per day of Neurontin (gabapentin), I told my doc that it seemed pointless to keep throwing something into my body that didn't appear to be offering relief of any significance. For me, I'm a firm believer in "less is better." My work, although very demanding, is my world....or at least a big part of my world. Narcotics are not an option for me because they effect my mental clarity and alertness which is problematic with the kind of work that I do. Sooooooooo, after much bantering back and forth, I agreed to go with Valium for the spasms (since neither zonergan nor soma nor tinzanidine worked for me). I also use the lidocaine patches from 7AM to 7PM so that my pain and treatment are "invisible" to others during the day/work hours. My first go-around with the SCS was a terrible waste....only becuase it had to be implanted in the cervical/thoracic are and was too positional to offer any benefit. Three months later (a week and a half ago) they removed the whole system and re-implanted it using a more invasive technique. Well after many years of wrestling with this bear, I'm in luck. The SCS doesn't cover all of the pain, but it cuts it enough to make life easier. If my neurosurgeon clears me this morning, I'll head back to work next Monday. Yea!!!!!!!!! This new SCS is still a trifle positional but I'm pleased. We can only hope that one day the medical research world will arrive at a better understanding of this condition and ways to more successfully treat it. In the meanwhile, I will suck it up, get help and support where I need it, and try to not to let the pain and frustration get to me.....as I'm certain that it could. Not to sound earthy-crunchy, but I find meditation helps as does distracting myself with pleasurable activities. In no way am I minimizing the excrutiating pain that faces each of us. My best suggestion to you is to hook up with the most competent and compassionate group of docs that you can find....work with them to find a regimen that works best for you (though know that it will likely not totally work) and keep breathing. Seriously, I think the folks that are able to say "I have RSD but it doesn't have me" fare the best in the long term. Hey, JoAnn....quite a novel for me, eh? My very best to you, Lori. Keep asking questions. We're here for you. Barbara Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 24, 2004 Report Share Posted March 24, 2004 , Sorry to hear that you have not been feeling well. No need to apologize, I understand, I'm trying to get through some tonight but my hands are killing me, don't know how many more I'll do. I hope you are feeling better now, take care!! =) Lori Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 25, 2004 Report Share Posted March 25, 2004 I couldn't imagine putting your hands in a bowl of ice....ouch!!!! Lori, The PT tried contrast baths for my hand/hands, they had two large dishpan like things and one was filled with cold water and ice cubes the other with very warm water. They put my hands in the cold then the warm. Not fun at all. Never again! Take care, Hoping for Pain Free Days,Sandi Quote Link to comment Share on other sites More sharing options...
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