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! I am determined to get the best quality of life somehow no matter what, even with this, and I WILL get through it and get on with more normal things. I am determined to find something that helps me more than what I am doing now.

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!

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. gentle gentle hugs.

please know these are gentle hugs...
i am so sorry for what you are going through.

abbie

Sorry hun - thinking of you (PM'd you).

Love ya loads and get back up there!!!

Froggsy xxxxxxxxxxxxxxxxxxxxxxxxx

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. and prayers sweetie! Love and God bless you, Vanessa Love, Desi

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

Oh IHH, Take a moment and cry. Sending gentle hugs your way

Nine Reasons for False Negative Lyme Disease Blood Tests



http://www.lymeout.org/seronegative.html


Much Love, Roz

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! Cry I did... it is just so hard to look back and see that at this time a year ago I was grooming dogs for my neighbors, I was running around and training my own dog, planning to start a home business with training/ grooming dogs... and now? I cannot even walk unassisted. Even then I fall. It gets overwhelming sometimes, and that is when I get on here and just read and know that these are all people who can relate to me. And I can email my close RSD teen/ young friends who are going through the same thing. That helps me make it through this. Sometimes it is doing something other for a day or two, or even just a few minutes of something else to get my mind off of the RSD. But bedtime has been the worst. My pain is highest at night now, and so laying in bed without anything to distract me from the pain is tough- though meditation helps somewhat.

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!! No one can fully comprehend (other than other RSDers) how such a small injury could off set THIS monster! And I cannot believe I wouldn't be aware enough not to shut my thumb in the car door... I guess it happens to the best of us! But it is hard to swallow just because I am so young.

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! Those things creep me out!!

.... 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.

xxxxxxxxxxxx