I had the strangest experience the other day.

As y'all know, I have RSD in my hands/ arms/ shoulders, feet/ legs and back.

Well, the other day I was at physical therapy, and my day was going so-so... I wasn't in agonizing pain, and I was able to do my exercises fairly well. Well, after 90 minutes of exercises my physical therapist moved on to our hands-on time- desensitization (my favorite- NOT!). Well, after rubbing my one arm with different textured fabrics, he moved down to my leg on the opposite side. All of a sudden I felt something I NEVER have before-- it started in my right hand, crawled up it all the way into my shoulder, and then moved to my other UE, and then to both of my feet and legs-- it was SUPERRRRR HARDDDDD tingling and it felt like all of my muscles in those areas were stuck, tight and stretching... I told my therapist "something's not right", and explained this to him, and I told him, "I cannot move". My hands were bent and stuck in a clawed position.

Plain and simple, my fingers, and everywhere would not bend. I kept trying to move, but I COULDN'T! Like I was paralyzed, but I had the feeling in my body (I had it because I was just as hyper-sensitive as usual when he touched me)... I told my therapist this, and he started moving my fingers.

He also had me hold a soft squeezy ball, and try and relax (since I was in terrible pain at this point, being "desensitized"; I was crying and breathing really fast, hard and not at all correctly)...

It lasted about 45 minutes and then gradually I could move again!

What happened? Does anyone know?

I was so worried, as was my therapist... he even asked me if I wanted an ambulance. I just waited and things improved. That evening in bed the same thing happened to my left leg (which is the worse one of the two) and the rest of the evening and the next day I was weaker than usual and felt like moving was harder than it should've been.

I am utterly confused.

It hasn't happened since the two incidents in the same day!

See, at first I just thought that I was all tingly because of the after-feeling I get from things touching me (pain along with tingling), but I realized when I tried to move that it was worse than that!

I would love your thoughts and input!

Hey

I have this and another person our age has it too. I personally feel it is the brain just firing madly about the level of sensory input you're getting. I am probaly totally wrong, but I kind of think that your brain gets so fed up of screaming out pain pain pain that your body just goes bank... and stalls ... did you find that all your muscles contracted really strongly?

it is scary - with me I'm pretty much in that situation all the time. Have you been evaluated for the dystonia levels with the RSD? and are you in muscle relaxants?

hope things have calmed down!
love

FRxxxxxxxxxxxxxxx

Hey there!

I think I agree with you on it- the mind does seem to be going blank from the amount of sensory input, and as I had mentioned, this occured after desensitizing one limb and moving on to another! And it started in the limb that was just "desensitized"... interesting... this is really blahhhh! Do you think it will occur more??!

I did connect the sensory input thing, because I get that tingling/ pain sensation after things brush up against my skin... hmm...

Yes, my muscles did contract really strongly- that is the word for it! I was trying hard to explain that, but wasn't sure how to!

I haven't been evaluated for dystonia levels... how does a Dr do that?

I am not on muscle relaxants... I have found that epsom salt baths, magnesium and exercises help me a LOT with the spasms normally. I figured, hey, if I can control them without meds. all the better.

Thanks for your thoughts, Rosie.

Hey IHH

I'm having a very hard RSD time at the moment so I apologise if my emails are not overly sensical..

I guess one thing I see on this forum is that everyone is affected by RSD in so many different ways - therefore I can't suggest whether yours may happen more often or less often or anything..

The only thing I can think of is to start pacing yourself so that you aren't doing 90mins physio followed by 90mins desense.. try ad have a break at some point and pace through the treatments. Oh, something else, passive movements - getting someone else to stretch your joints out SOMETIMES helps...

nowadays for me we try to keep the sensory load down as much as possible - when my muscle spasms get really bad we know the RSD can't take it anymore and that I have to stop for a minute before having another go. for instance, when the carer brushes my teeth it can send my head and jaw in to spasms - we tried an electric toothbrush but my brain went in to sensory overload.. That's just made me think - that might be why I cannot tolerate TV well? bizzare. It's also why my joints do that especially if they are being splinted and when my splints are off.

hope this is some small help and that things improve!

Love

FRxxxxxxxxxxxxxxxx

Dear FRxxxxxx -

(Sounds like a bad abbreviation on the title of a German matron, doesn't it.)

Seriously, your description of agony from sensory overload is on the mark, as awful as your experience is, and I'll confess, much more extreme than my own. That said, at my worst times, I too can't stand the sound of the TV or the touch of my 9 year old son - who just wants to give me a massage - even though I don't have any allydonia per se. It's the essence of the vibratory experience that's the problem. Fortunately, I'm able to simply bear down with a lot of meds and that usually takes care of the issue, but then again I'm not a university student, having to get my work done. As ill as you are, you continue to amaze me.

Mike

Hey Mike..

Everyone is different - for me, i can stand to wear stuff and can just about tolerate touch etc - but the sensory is worst and living at uni sure doesn't help it! Sounds like you feel similar to me! - when mine is bad all i want is silence, darkness and nothing moving.. (so instead I live in student halls......mm. clever one there hey?)..

in a bizzare way l'm glad you have the TV issue too - my friends always think I'm so bizzare because of having alot of problems watching TV etc. I'm lucky though, i can cope with the radio, I know others that can;t.

I think that sensory overload (with me anyway) causes more set backs/ replases/ flares than overdoing it... just cos my nervous system then goes insane. I think.

Hope you're ok! Any thoughts for a better name?
Love

The amazing bouncing frogga

xxxxxxxxx

better?! LOL though then again....

Hmm... do you think any of this could be related to me having trouble at times iniciating movement of my left leg?

Hey IHH

I guess it could be.. all the neuro issues with RSD are messed up.. the list is endless of what could be causing it. If you are worried about it it might be worth getting a neuro to check it out.. but as they don't understand the aetiology of RSD they are unlikely to find much (in my understanding). When do you start Aqua therapy? lots of people find that really useful. Also, with your toes have you tried thinking about how to move them before trying? my dr swears by it - doesn't work for me... but thought I'd pass it on any way... (well, it does to a degree. but I can't think I'm walking! and then walk.. which is the results I want!).

the amazing non bouncing frogga xxxxx

I haven't found a pool yet, unfortunately, so I haven't started anything in the pool...

I try and think about putting all my effort into moving my toes... hasn't really helped. Though maybe that along with the PT has been what is helping me to move the toes on my right foot. Toes on my left won't budge! It's strange-- sitting there and looking at my foot, and not being able to move at all! Like, how in the world did I lose the ability???!! Crazy RSD!

Hope you are feeling at least somewhat better. Thanks for all your help and thoughts!

My daughter suffered alodynia, hyper-signals reaction to nerve activity. She had several diagx, but her clawing up was classic. When it happened in the specialist office and he nailed it. The nerves can handle so much in signal activity, when it goes past a point they try to protect their self, the muscles will creat a splint around them and tighten.

He called the position, shrimp something (She would at times as in his office get it in both hands and arms, spasming against her chest, so it has a name...

I would have to find each trigger point, as sometimes it went back up into her face and neck in huge muscle tightening so tight you saw every muscle in the neck...scalense.
But, I could press on the inner elbow for her hands, the back of the shoulder and along the traps for the higher up spasms.

It would freak her out. SHe could be just reaching for a drink, and stretch to far for it and end up with it clawing up mostly in her hands, but more severe times, into the neck and face.
IF I did not do the trigger point realse and massaging she would have stayed like that in misery a long time.

I would never suggest you do the desentizing he is trying as the nerve are over sensitized and it will counter-react in you.Too much stimulation and the nerves are going to go nuts.It is doing the opposite, not all PT is good PT for everyone.....that was a huge Bell Ringing.....

Try valium as a muscle relaxant. I take 5 mg to 10 mg a day. 10 mg the days I work to keep thing loose. My daughter would take klonopin,
Did you ever get any diagx of brachial plexapathy for the cervical nerve compression? Over stretched over injured nerves act like that.

Just my thoughts,
Dianne