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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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Member
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Can I cry for a moment please?!
![]() My RSD is now FULL BODY!! ![]() ![]() ![]() ![]() It spread up my chest this past night, and I woke up with a red patch on my chest and wanted to scream! I cannot believe that this small thumb injury started the worst nightmare of my life! ![]() ![]() This is SO hard to live with... I am trying to just take one day at a time, breath through it... but my symptoms are getting worse. The other morning my face was GREY! My breathing, passing out, migraines and now more symptoms are getting worse. I wish someone could just tell me for sure "everything is going to be alright". But no one can guarantee even that! ![]() Just having a HARD time, and feel so tired of feeling helpless and feel tired of trying to be positive (though I won't stop being positive!). It is just the fact that I am not even 17, and this is incurable. I know that somehow, even if the pain and symptoms stay the same, I can get a better quality of life and will learn to live with this better. It is just going to be a challenge. But hopefully things WILL improve physically at some point. Thanks for listening! |
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#2 | ||
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Yappiest Elder Member
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oh sweetheart i am crying right along with you.
![]() you have the best attitude. don't give up!! we are here for you hon. you are a fighter. i have you in my prayers. ![]()
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#3 | |||
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Elder
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![]() ![]() ![]() please know these are gentle hugs... i am so sorry for what you are going through. abbie |
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#4 | |||
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Member
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Sorry hun - thinking of you (PM'd you).
Love ya loads and get back up there!!! Froggsy xxxxxxxxxxxxxxxxxxxxxxxxx ![]() ![]() ![]() ![]() |
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#5 | |||
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Member
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Awwwwwww.. Vanessa, I too am so sorry to learn that you have full body RSD. you cry all you want. You are a very special young lady and I want you to know that your allowed to cry, vent, and I am here with you crying and holding you close in my heart.
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I Will Always Believe in Poems, Prayers And Promises Love, Desi . |
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#6 | ||
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Guest
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Oh Vanessa,
There, there, have a good cry, we're here. I suppose you've been tested for Lyme disease? I don't mean the quick test they do if/when one happens to notice the local rash at the time of the bite, I mean the other tests they can do for late Disseminated Lyme Disease (that's when it's left untreated). I ask because of your particular combination of fainting and very severe headaches/migraines with widespread RSD symptoms - the symptoms of DLD and RSD can be very similar. Here are a couple of links: http://www.lyme.org/otherdis/ld_symptoms.html http://www.lymenet.org/ And you might want to read this personal story: http://www.canlyme.com/lauren.html because it has very useful information about how slapdash doctors are in their diagnosis of Lyme Disease, and advice on testing. BTW, ticks carry a couple of other nasty things too (this story is about a girl with 2 diseases from the same tick...yaaargghhh). Anyway, as you know, I'm a great dog-walker, so I'm acutely aware of the ease with which dogs collect ticks, and I've had a fair few tick bites in my time. I know you were around dogs a lot before this happened - it's not beyond possibility that you had your accident around the same time as getting a tick bite you didn't notice or thought was a mozzie bite. Actually, you don't even need to have a dog to get bitten - they live on grasses and get carried on the wind. Frankly, I'd get full tests done, if only to rule it out. If you've already had them - sorry to go on about it! Not that any of that helps you right now! I really hope you can find some way to calm this down and get a bit more comfortable *very* soon, love you lots, all the best ![]() |
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#7 | ||
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Grand Magnate
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Oh IHH, Take a moment and cry. Sending gentle hugs your way
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#8 | ||
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Guest
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Nine Reasons for False Negative Lyme Disease Blood Tests
http://www.lymeout.org/seronegative.html Much Love, Roz |
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#9 | ||
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Member
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Thank you to everyone!!
![]() I just needed some support. Going through this is the worst thing ever! Thanks for the love, hugs, thoughts and prayers. It means so much to me... it has just been one of those days where I feel like no one understands and I need to talk to someone who DOES! I appreciate you all! ![]() ![]() ![]() It is just hard to swallow that I had a STUPID thumb injury (slammed it into the car door) and now I have FULL BODY RSD!! ![]() Thanks again everyone for listening to me, and thanks for the wonderful support! ![]() Artist and Buckwheat- thanks for pointing out the lyme disease... I have only had quick testing done as far as that goes, but this is something I will definitely look into more and talk to my doctor about. The story about the girl with lyme disease made me cry, and I am so glad that it got finally figured out! My mom has had lyme disease twice, my brother had it once, as well as many neighbors and we live near a bunch of wooded areas where ticks jut thrive! So that was one of the things many people mentioned to me... it might be something that I have in addition to the RSD... it is very possible, and even MS seems like it fits me in addition to the RSD. Artist- yeah, I am always pulling the ticks off of Sammy (my pup), and I also have found them on me about 10 times this year alone! (and I rarely go outside!). Our cats get them like crazy too. Ticks= eek! ![]() |
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#10 | |||
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Member
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.... at least a thumb injury is less embarrasing than falling over the cat whilst walking upstairs and caring more about catching the ironing than whether I fell on my right wrist.
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