[wildberry2277]

I know it has been along long time since i have posted.... I had a block down over 3 months ago.... It caused an incrediable flare... Found out i was allergic to it... GREAT ONE THING AFTER ANOTHER... The flare lasted 2 months... I am finally out of intense horrible pain 24/7 to just horrible pain.... The cold weather here in MN is really rough on me .... I wear a glove every where LoL ... Its a new fashion statment... I have also gained 30 pounds... BOOO to that.... Also the meds they have me on have put me in a 24 hour coma... I am up for about 4 hours a day.... The RSD has moved to the left side of my face and i am starting to have pains in my left arm... very scary for me... Lets hope it just stays to once and awhile...

Sorry if i sound a bit down but i am... Its been rough on top of all this my parents are going through a terrible divorce... And at 22 years old i am fileing for social security....

For those of you that dont know me... I have RSD in the Right and Left side of my face for my eyes down the Right side of my neck, right arm, and hand. I also have TOS from an artery perspective on the Left and Neurginic on the Right...

On the upside i have missed all of you and i am excited to get back to posting.... Forgive me for my spelling mistakes... I hope all of you are doing well... I have really missed all of you....


Now on to the question part...

There is something wrong with me.... This may sound crazy but i swear i am not crazy.... so you know when you think in your head just thinking about anything right.... so today for example i was thinking about a light to light a candle my rsd hand started making the motion of lighting it with my hand.... Or stiring soup i was thinking about what kinda spoon i wanted and my brian sent some kinda signal to start strying with my RSD hand.... But i was stiring and lighting nothing it doesnt make any sense to me and its happeneing a whole heck of a lot and i think i might be losing it why would my rsd hand make motions i dont wanna be making.... Does this happen to anyone else or am i losing it.... Its like my brain is misfireing... EVEN MORE! I dont get it...

Please dont think i am crazy i am very confused.... and wondering if this is just a nother crazy thing that happens with this stupid condition .....


Just a bit more information hopefully it more clear with the info below

My body does those wierd ticks and movements but this is just a bit different... Like i was thinking about lighting a candle with a lighter... i hadnt yet got up to do it but while i was thinkgin about it.... and my hand mad the lighter motoin the up and down like lighting but not really.... My brain is doing a very strange thing .....


hope this makes more sense

Thanks for any advice you guys have to offer... Hugs and much love J!

[ali12]

Hi there,
Let me introduce myself because I don't think we have met before... My name is Alison, I am 12 years old and I have RSD in my left leg. I developed RSD in my leg after an ankle sprain. I used to have RSD in my right arm but it is now fully recovered, thank god, I just wish my leg would get better. I am sick of being in so much pain.

I am so sorry about what you are going through ((hugs)), it sounds really bad. My leg doesn't do the movements you describe, but it does twitch. I have dystonia also which means my leg doesn't move that much. I don't think you are going crazy, I totally understand what you mean by the weird movements.It sounds like your brain is telling your hand to do everything you are thinking about. Have you spoken to your PM doctor, Physiotherapist about it??

I really hope things are getting better for you.
Sorry that I can't help you that much
Take care
Love
Alison

[daniella]

Hi. I'm sorry to but can relate to you. Well not on the moving issue after you think it but the other issues and side effects. First your not crazy. I know for me I can often feel that I'm loosing my mind and how can so many fluke things happen to me. I think allowing myself to feel and say these are true things happening and its ok to feel confused and scared. It doesn't help though when docs kind of brush things off or look at you like your from outer space. I agree with ali to talk to your doc about what is happening. I wonder if your brain is sending weird signals and that is why your doing involunatry things. It may be a huge connection or maybe your meds are making your brain process things wrong. Have you called your doc about the meds?I know for me when I was going through different meds I was having so many issues so I had to really keep calling the docs cause for me they didn't realize the severity. I would like to ask you about the reaction you had cause I may have one of these shots actually what kind was it? Also did it make the pain worse?Lastly I'm so sorry about your family and ss. I am going to have to file for some type of assistance to and though I'm older 29 still its hard. If you want an email buddy I'm here.

[Imahotep]

I get so many oddball symptoms that I couldn't possibly list them all. It's been thousands, I'm sure.

What you describe fits in well with my experiences. My sense of it is that major organs and ganglia have a low level consciousness of their own. We're not aware of them but they are FULLY aware of us. Part of their job is to anticipate our needs. RSD seems to be an infection and it can invade the brain. When it gets into the medula it tends to break down the one way communication with affected parts a little and open up a slight amount of two way communication.

One of the things I discovered early on is that even imagining exercise is tiring for my hand. It just seemed that if the problem is with nerves and it hurts when exercised then perhaps fantasy exercise might help. ...it didn't.

I've also gotten what is called pseudoparalysis almost from the beginning. This is a very difficult condition to describe and I find it excessively disconcerting. It feels like it's not even real while I have it but I can't pick up a salt shaker. It feels almost like it's the hand imposing its will on me. It's very difficult to describe but it may be an example of this two-way communication.

[Imahotep]

Perhaps I should add that I'm quite nuts but as John Astin would say, "I'm much better now.".

[wildberry2277]

it feels like my brian is wrong or something i am very confused.... i dont know whats going on.... Its like i feel slow not all there... i am afarid of what you just said could you please expalin a little more... Thank you... I think i am crazy to lately.. Thanks for your response



Much love and hugs J

[Imahotep]

It can be hard to separate the effects of the drugs from the effects of the disease. I didn't mean to trouble you and stress can cause a worsening of symptoms. I take gabapentin and this drug severely impedes my ability to see connections between barely related events and wierd coincidences. I don't notice when I take it but when I stop these things will come flooding back. Don't get me wrong, my whole life is like one big Twilight Zone episode with few voice overs by Serling and the music's always playing, but it's moreso without the gabapentin. I kindda miss it.

It's similar with some of the other drugs. Tizanidine eases the tremors but probably affects my thinking. Depakote reduces my ability to obsess which I also miss a little. Fortunately it's primary effect seems to be as an analgesic for me.

But there are numerous things that make this seem like an infection. When in the hospital for a probably related problem they were pumping me full of powerful antibiotics. At the time it felt like the RSD was trying to go away! It came right back when the drugs stopped. A lot of the sensation that it's infection is the two way communication type events. At one point it seemed like the amygdala was involved but this didn't last long. I often felt like I was in a sort of fugue state at the time. It seemed like I operated my legs to cause the world to walk by.

It does seem that this thing prefers other nerve fiber than brain though. Like I say this is just the sensations I get and I'm sure a doctor would use other terms to describe it. Even were I entirely correct it's probably more important to not worry about it than to understand it. I still have a lot of trouble concentrating because the pain starts up if I don't pay attention to it and comes flooding back when I quit. It's no real problem though, I just break stuff up into smaller increments.

My best bet seems to be to just try to stay on top of the triggers and to try to keep stress low.

[ali12]

Ali's mom here
Do you mind me asking what type of block you had
Alison had a Guanethedine Bier Block four months ago and hasn't been able to coordinate her legs to walk since - the PM Consultant says the block wasn't to blame but I suspect it was
I'd be pleased to hear from anyone else who feels a block aggravated their RSD

[wakegirl]

the movement you are describing actually makes sense, to the point that i am suprised more people dont have a similar complaint. for the same reason so many rsd patients experience dystonia involuntary movement seems plausible. in addition to the muscle atrophy, the nerves also show signs of injury. the messages that are supposed to go from an area of the body into the associated area of the brain. the simple path the messages used to follow have experienced an unexpected obstacle. just think of a train cruising along the tracks until someone throws the lever that switches the track. the train either bounces off the rails and crashes or it proceeds in a different direction. as a result the envisioned motions that normally would have remained in the mind until another image replaced it instead resulted in the actual behavior being played out. there is no filter so we act when others simply pondered the possibility.

[wildberry2277]

First of all, Ali's mom... I had a Stellate Ganglion Injection.... It was put in to my right arm. My doc blew it off too until my face was so swollen it was hard for me to swallow as if i was chocking... They gave me some epi. and i was much better as far as the swelling but since the block i have been 10 times worse then i was before i went for the procedure... The burning and crushing is so much worse... If you want any more information you can PM me or my MSN is Jclem131318@hotmial.com.... I would be more then honored to talk to you about your little girls... She seems so postive.... She is very young i am sorry she is having to deal with something even adults dont understand...I comened you also as her mom it takes alot of strength...

Wakgirl... What you said made so much sense... You made me feel not crazy... Because my doctor basically looked at me as if i was ... He is typically very understanding thats what made me feel so crazy... It makes sense... If our brian is misfireing to cause all this pain why cant the signial also be confused with movment.. DUH! Expalined the way you said i am suprised others also dont experince the same thing....There are so many things these days that make me feel like i am losing it.. However i figure if i can get through this last flare after the block i can get through just about anything ... its just so random and ecspecially at night in my dreams i am doing it and just thinking about random things like the candel and there you go ... got crazy action going on lol

Thanks to everyone who has answered my post much love and very warm hugs!