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Reflex Sympathetic Dystrophy (RSD) (CRPS) Message Board


Reflex Sympathetic Dystrophy (RSD) (CRPS) Board Index


[QUOTE=dedwards;5074043]I have been suffering from it so long that I believe it has cause my body to hurt all down to the bone. Sometimes my bones hurt so bad that I don't want nobody to touch me. I don't think there's nothing it don't destroy in the end.[/QUOTE]

What you said just sums up the disease quite right it destroys everything in the end.. At first it attacks your nerves (and Depending if it spreads or not cause some it doesn't spread at all if they catch it early enough others like me it spreads everywhere), then your muscles, your bones, then its your skin & nails, then its your organs and everything else you can imagine. We just have to hope that we can make it through each day and that our loved ones stay by our sides, and that some kind of miracle they start spending money & doing research programs like Canada & Denmark are doing with Pain Programs that are free here like in Canada and Denmark do if you're a citizen though or at least a care card (medical card) I even think you get a temporary one if you're visiting for a long time or a study or work visa.. Anyway's these programs work wonders and the studies they are doing are working one that if they get enough people in to get RSD put on the list for us to use at home in a spray form that you spray it up you're nose and it automatically remembers that it mapped out your nerve pain system and your severe bouts of pain are gone for a time being. Ketamine is a horse tranquilizer drug mainly used to put horses down or sometimes it was used on the streets as special k the drug of use in the early 90s. Anyways, how this works is you have to go in for a set amount of times to be able to get you to a level of ketamine where you can get up to a pre-set amount of ketamine and once you are at that level for 2 weeks so to let it program all your nerves. Once you go through that and they think your RSD is bad enough to warrant it they will give you this device that you spray up your nose when you are having your crisis or crash or whatever you want to call it I am not sure of the correct term is truth is RSD likes to play with your memory or the time it takes to remember you have already pressed the send button and then it pisses you off lol. I have personally went to this program twice and it works, once for four weeks to figure out my meds, did different types of therapy that didn't hurt you and they figure out what the best thing is that you need at that time. My second time was for three weeks on a ketamine infusion, to see if I could tolerate it and if it would work for me, to do physio (so my atrophy wasn't so bad) and walk a little further then I could, could I tolerate other therapies that I couldn't in the past. Right now they are using it for people to do physio, and to be able to participate in the program they have set up for you individually. I made some positive changes from the program and can't wait to go for my next stay in the Pain Program at the hospital for at least two weeks and use their therapy program with the Ketamine infusion so I can do some more Physiotherapy and Occupational therapy, Psychological therapy and other treatments they do, like sort you out on the proper medications or therapies that are better for you not anyone elses theory of what you should be on but, what you actually need to be on. And that's the new plan for me personally now to go in so many times a year for a bolus infusion (bolus means you can go home with it) or I can keep going back into the program anytime I want. Personally It takes me a long time to write messages cause I have a hard time with my fingers spasming, they hit the wrong keys and they always drop stuff makes me so angry... This has taken me two days to type this out for all the mistakes I make lol Got to laugh sometimes about yourself or you will go bat **** crazy lol





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