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12-11-2008, 02:39 PM
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New Member
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Wanted to check in this morning and see if anyone caught my intro to community yet. Not sure if I've set my new profile up correctly or not. Could someone maybe take a peak in and see if I'm on the right track or not please? I would really appreciate it so much.
I have had RSD in my left leg and now foot since Oct 2001 and always wanted to join a support group for this but was a bit nervous to do it. It's hard being the new person sometimes no matter where you go, you know? I have no doubt in my mind this community is filled with loving supportive and very knowledgable people who are ready and willing to type a hug out to anyone in need! Please have patience with me on this as I am breaking myself in right now on set ups and mapping out the site tools also. I might want to add that my spelling can get pretty bad too, I take 18 pills a day currently and some of these I have been on for years so my brain can tend to rob me of neurons sometimes  Well, God Bless all of you and I hold the greatest respect for anyone who has carried and form of CRPS/RSD for any length of time and will never claim to know it all, but have become quite knowledgable in some things regarding the disease by now. Due to life mainly slowing down so much and placing me in front of the internet (years of research on my own) after doctors here locally told me there was nothing else left to do for me that would work anymore! I now go into my doctors with names of medications from researching well respected websites (excellent RSD doctors) and tell them when and why I think we should try these next! My current pain mng. doctor has "finally" admitted this last visit to my husband that "We honestly are very limited in resources here Steve for treating this disease, and really don't know what to do with it anyways. It's such a complicated and misunderstood problem for all doctors and there is no cure, no real treatments, just some hope for "some" successful management of peoples pain if treated soon enough with their onset of RSD". He then proceeded to say "If Traci would have just come to me sooner, I could have done more for her." He said his form of Lumbars, and blocks are very aggresive and long lasting and far different from most other doctors approaches in our area" See back about three or four pain doctors ago, after they had done so many different polks, prods, needles, bigger needles, and then even bigger needles (GBN-"Great Big Needle" they actually call the 6.5 in and 7.5 in needles for our lumbar symp blocks this, or the needles used for the lovely "Rhizotomies" gotta love those too!). After all these and meds, meds and more meds and psyc evals and tests, etc, etc, etc. They came to the conclusion that these where only helping my actual rsd case temporarily. I mean some pain relief would only last a few days or so! They finally did last physical eval and said, "Well, we always said you would be somewhat ok if we could at least hold it at the stage it was in and the limb does'nt start to turn all cold on us!" But, after examining me he had a horrible look on his face which was one of dumb founded, and he said "your limb has now gone cold Traci..." Were sorry we could'nt do more, we're going to send on to another facility for further treatment and possible "SCS" (spinal cord stimulator) but first there will be another phsyc eval of course to check your state of mind... I just sat back and said your joking right? He said I'm sorry, there is nothing else we have left here to try. So I had my (2) psyc evals, and tests believe it or not, I requested a second because I wanted to see if another psyc doctor would eval me same way emotionally or not and if he even knew about this disease! Well, heck no. None of these guys ever have heard of RSD nor will you ever run into any doctors locally in your own areas who have for a long time unless you start telling them about the disease and your own personal experience with it. Needless to say, because the second doctor asked for my report in advance and funny enough met me for 30 minutes only, then proceeded to write the same thing about me as the first. "that I'm hystrionic in nature(actress, dramatic) and a tendency to be a bit hypercondrac (one who complains of pains out of the normal tendencies, exagerrated pains...) sound familiar? RSD is nerve pain that is exagerrated pain that won't shut off from the brain to the original onset of injury. Even after injuries are healed, the pain continues to fester and progresses in intensity over time causing other manifestations of the disease to come on which we wont even start that list. These men have neither a clue nor the compasion to listen, treat or conclude any recommendation or denial for any type of device or other for any individual regarding such things as RSD since they themselves are clueless. We can't blame someone for out right ignorance. But we can blame us for not trying to open their eyes back up to the truth of the matter. Sometimes you have to literally get in their face and shut them up so you can really tell them fine, if you don't want to help me ok, but I wont walk out of here knowing you still have no clue about the devastations of this reality for me, (then if their attention is there, you need to bust it down for them ) this is our awareness responsibility! Otherwise, we are just walking around with all this simply to keep talking to fellow RSD'ers, which is equally important if not sometimes more (please dont take me wrong,sometimes I dont explain myself correctly), but, the real ones in trouble are the doctors who have us walking in to them looking for answers. See, I have this theory..."All the labratory testing and experiments are great, but if the lab rat won't talk back, we're pretty much at a loss". I believe we very possibly still hold the secret to a cure we just have'nt figured out yet! It might just simply be given through an idea to a doctor one day in conversation with a detailed patient who is willing to discuss their "actual" pain, "actual" level of depression, "actual" symptom (which are sometimes so lengthy we are embarresed to tell them,so then start writing them down on paper!) then give them to them on your next visit... I record symptoms of this disease as symptoms reoccur. I then write them down on a log that is dated, and kept until my next appt time. The doctors will copy these and give you back your original so you can also bring this to your other specialists, then do the same with them. It is cruicial that all of your doc's are on the same page! Even if you feel they are not doing much for you now. I have found and it has proven true that because I do this, they now listen to me more, and are open to many suggestions and researched ideas I have and bring in. What else are they going to do. Like they have the time to do all this and take care of the thousands of other patients with so many other individual problems. Nope! I can only take care of me. So I decided a long time ago to be proactive. Along with my faith in Christ, I have lost 70 pounds, gotten off the couch and my limp is pretty much non-existant now! The pain is very much here still and wont go away! However, all that does is tick me off more, then I go do even more crazier things now like buy a bike with my husband and started to bike ride little by little. Trust me, my arthritis is all over body, and spurs every where now, I have to wear braces during this and take two lorcet 65os, and wear tens unit, and my legs still go numb and cold with pins in matter of 5 mins. its scary. But, this is how determined I have become over the last couple years to keep my legs! I have had a few times where I have now rode a length of almost 15 miles with my husband!!! No exageration! We had to break so many times and i thought that I would die. I could'nt shut up about the pain the whole time, but I kept going to see seriously just how much I can truly take. I end up putting my self in the bed for 2 or 3 days! Yes, I know you are all saying stupid, stupid, and it should'nt even be possible if she has rsd! Im telling you it is. I at one point was on 14 vicodins a day, 2000mg of nerotin day, spinal injections, and was'nt walking but from my chair to my bedroom and maybe to the car and back each day and that was pushing it! I almost lost my leg! See, I got my RSD from falling and fracturing my kneecap, and a doctor had to do 2 knee scope surgeries to repair soft tissue damages. Needless to say, He says he now relizes I had rsd from onset of the fall and never should have operated. Lovely. So, one day out of desperate faith I desided I want my legs back and will do as much as possible to keep as much of them as I can no matter how much it hurts! Once I asked the doctors if I would make them any worse by working them and they told me "well, you wont break them" and if you dont use it, you will lose it"! That is true and they are right. It onlly takes a few weeks of plopping on the couch and not wanting to really push my self to do something active and somehow this stupid stuff just gets worse than it is already. If it could be possible.... So, no matter what condition you are in, soak your body, or limbs in epsom salt baths (warm) daily. take your prescribed meds, and never try to quit all of them like I did on my own (Im that radical I guess-Yeah, I once dumped like 8 different medications down the toilet and quit cold turkey and almost had a heart attack/I was sick of being a slave to pills you know?) FYI-dont ever try that either, it will just make your condition progress or some of it get more aggressive, or come out or your so called remission. Its a big no no for all you die hard folks... Soak, soak, soak, and move, move, move. No matter how crabby it makes you, how much it hurts, etc. If you have to, find someone else who has a health problem also who can buddy up with you and walk along with you! Better yet, try and help someone else who is hurting like us in some small way. If its calling them, stopping by, writing a card, telling jokes, letting them vent to you and you to them. this will help you take some stress of yourself that person and at same time relieve those you love at home from some of the pressures they have had to see or hear for so long too. I talk way to much as you surely can see here, and have so much to share with people also. So, if anyone wants to throw a line my way, I won't just nibble, I will jump right in! God Bless you for listening to my story, I would love to hear all of yours  Traci |
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12-11-2008, 06:26 PM
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Young Senior Elder Member
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Hi Traci and welcome to NeuroTalk..here is the link to our RSD forum.http://neurotalk.psychcentral.com/forum21.html
I'm glad you joined us.
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12-12-2008, 12:52 AM
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In Remembrance
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Wow, Traci! You do talk, don't you?
 I bet you'll have this whole site down in no time! It's kinda late now, but I hope to see you again! 
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12-12-2008, 01:45 AM
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Legendary
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 Hello and welcome to NeuroTalk. Great to see you have come to be with us. Just let us know if we can be of any help. We are all here to assist each other as possible. Again welcome, looking forward to seeing you around. Darlene 
__________________
. "Life without God is like an unsharpened pencil -- it has no point.
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12-13-2008, 09:10 AM
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Wisest Elder Ever
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Hi Traci and welcome to NeuroTalk!
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These forums are for mutual support and information sharing only. The forums are not a substitute for medical advice, diagnosis or treatment provided by a qualified health care provider. Always consult your doctor before trying anything you read here. |
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12-14-2008, 12:18 PM
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Magnate
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Hello and Welcome to Neurotalk, Traci! You will meet many great people here who I am sure will be more than happy to help you in any way they possibly can and answer any questions you may have!
I am so sorry to hear that you have RSD . I suffer from RSD in my left leg and right arm also. I developed it when I was 12 years old after I sprained my ankle and I am now 13. I understand how scary it can be at times dealing with such a life-altering condition so if you ever want someone to talk to who understands, please know that I am here for you. Take care and I am sending you many pain-free hugs and hope to see you around the forum more soon! Alison
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To the World you may be one person, but to one person, you may be the World. |
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12-14-2008, 06:06 PM
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Senior Member
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Hello traci and welcome to neuro talk ... there are lots of friendly and supportive people here ... join in where ever you feel comfortable ... i hope to see you around on some of the threads ... again ...
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. . chicago,il . |
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