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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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Hello ..nice to her from you..Sorry our thread is making you want to cry. My first neurosurgeon who was scheduled to put my SCS implant in was a "believer" of who said..RSD does not spread..He waited so long that my RSD had a chance to spread...I switched surgeons and had my implant in in a matter of two weeks..the original Dr. had already blown thru 5 mos. and still no implant. AND I had a herniated disc which he missed due to not reading my "pre" surgurgical workup... so he missed that too..... When he told me his feeling about the "no possible spread", and I was feeling pain and symptoms in other parts of my body.... I immediately called my RSD/PM Dr. .. he was fuming mad and said it does spread..absolutely..!!!!!!!!!!!!!! Now we can say our symptoms and pain don't lie!! I am sorry to say but it does spread and we are the reality of this illness. Some of these docs haven't the faintest idea of what it is like to walk in our shoes.... they just collect their paychecks and go home crab about us "whiners" of a little pain!! Right???..right! Your story of waking and moving your 10 lb. dog off your bed is a common one as we move thru the stages of RSD... I , too hate the feeling of these movements, although our dog weighs much more, just a little humor there.... and as far as my forgetfulness..well..I hate that too but it's very real! Heres wishing you a better nights rest than I am having!!! Gentle soft hugz for you for a good day tomorrow... ![]() k |
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#2 | ||
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Hi K, Thanks for your words of wisdom and reassurance that I know exactly what my body is telling me. I have been saying this for over five years. I knew nothing about this illness, I only know what my body was saying, and it wasn't prettty. The pain, anxiety, tremors, spasms just kept increasing and of course I did get depressed but mainly due to the fact that my doc, who had the knowledge to diagnose the problem and then never treated me. I look back now and I really do not know how I was functioning at all. I was taking two Vicoprofen a day and zoloft. I would ration my medication, on the days I did not work, I would lay around trying not to antagonize this pain to save my medication for the days that I worked. I seen this doc for over three years. Finally, I did seek a pain specialist who confirmed the diagnosis but named it Causalgia type 11, but it was too late for the injections and it had already began to spread through my right leg and left foot. I do have a lot of structural damage to my feet due to the trauma so I am now seeing a great foot and ankle surgeon who is very knowledgeable with RSD. I am so grateful. I am having my left foot fused in April. My right, there is nothing they can do but amputate, I would like to save that for my next life!! Anyhow, K, I hope you remember who I am...LOL and it was great talking to you and I wish you many peaceful nights, it does help us cope better through our sometimes miserable days. And don't worry about the crying I think I needed to get that out. Jeanie |
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#3 | ||
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I am getting tremors in my pinkies and lips- it is so weird. RSD is like a Duracell battery- just keeps going and going-lol
Debbie |
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#4 | ||
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I know what all of you are talking about. I wasn't sure if some of these symptoms were normal, either, but have experienced them. I have dumped more than one cup of coffee or bowl of soup in my lap due to a spasm or jerk...luckily it was always at home on the couch. Good laughs from my kids, though. Ha! Also, I worry about my memory lapses; especially since dementia runs in my family. I wonder if the RSD will make it worse or come on quicker. I know that the Lord is in control and do alot of praying. I also cannot take meds so pray when I feel down. It is comforting to "talk" to you on here and read your encouragements. I pray for you guys frequently too. Anywho, I hope you are doing better and that your spasms become less. Take care of yourselves and thanks for all the good insight that each of your bring to "the table."
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#5 | |||
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I feel like a big baby for even bringing up my tremors as they seem so minor in comparison to what others here experience. I've developed a tremor in my left eye and deep in my rsd foot. The eye tremor has been increasing in intensity and frequency for the past couple of months and I feel like I must look like a freak when it happens and I'm talking to someone. I video taped it so I could see what it looks like and it doesn't look as bad as it feels. My doctors don't know what to say about it.
Warm wishes. MsL
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"When humans learn to be gratefully present every moment, they become angels. It’s not the wings that make the angel, but the message of courageous presence and creative acceptance, no matter what the moment brings: “Fear not!”" Gratefulness.org |
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#6 | ||
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Great to hear from you all.. I think the most comforting part of RSD I can come up with is it feels so wonderful to have met such nice friends here on this forum... We are here for eachother and we are never alone, as lonely a fight this is with our illnesses..we are still...........never alone!!! Love, KS ![]() |
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"Thanks for this!" says: | hope4thebest (01-10-2010), Mslday (01-10-2010) |
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