Weak hands

[angie797]

Does anyone get weakness in thier hands? I get so weak in my hands that it is hard to hold anything even a feather. I also have moments when my fingers just stop working and there are times when my hands shake for no reason. Does anyone else have these problems?

[selmaS]

cool idea!!!....did u use helium or air to inflate the balloons?...just wondered if the paint weighed down the balloons.


No worries...my biggest concern was having energy and doing all the prep for DD's wedding...I wanted to dance at it with DH...that did not happen, I didn't even dance with the groom...my feet were to swollen...but, it was beautiful and I was able to enjoy being there. I did have a dance with DD...so that meant more to me than all the other things I could have wanted to do at this point. We have to make choices...and cut back....if I did not do all the flowers I may have been able to dance...but doing the flowers meant more to DD than getting them elsewhere so I made it a priority to myself.....

Sounds like ur DD may have a reason to be looked at, but unless it is affecting her lifestyle....do not push it unless she has a problem and starts to miss too much school or functions u know she wanted to attend.

"selma"

[angie797]

I am the same way I do everything I can with my daughter she is the love of my life and hate that look on her face when I say mommy cant my head hurts too bad. There are many nights that I lay in bed crying because I feel like I have disapointed her. I know that Chiari is genetic and I was wondering at what age should my daughter get tested. She already gets headaches and I noticed when she bends down to pick something up she gets dizzy when she comes up.

[niki3350]

Great advice as always selma, Wow you are a rock to so many of us.

Angie.... Yes the guilt is a terrible thing my yoingest is 13 an still wants help with girlie things, curling hair etc was doing this on Saturday and without her knowing I was crying inside my arms just could not cope and I was resting them on her shoulders at certain points.  Im 10 weeks into a flare of sx at moment a really think an active holiday brought it on, we could not afford to go abroad this year and stayed in England had a week in Wales where through guilt on my youngest i played badmington,swam with her everyday, played golf, did archery, went bodyboarding in the sea etc etc.  Since then I have had horrific pain, headache, blurred vision and lots lots more.  But just had to do it as my girl was so enthusiastic for me to join in...

Next time I will listen to my body and slow down....

[angie797]

LOL my mom works in customer service and this is customer service week. We were making "golden globes" they are decorating thier office in a hollywood award theme. Cheapest way to make golden globes was to use white balloons and spray paint them gold. It was something I could do with my daughter that was somewhat fun.

[selmaS]

...I know what u mean with the guilt not being able to do the things u feel r important for ur kids....I did deal with that not knowing y I couldn't....my DD understands now y it was hard for me back then and is very appreciative of what I did do.

I would "save" up energy to do special things.....

But right now I have to know...y were u spray painting balloons????

"selma"

[angie797]

I was trying to spray paint some balloons yesterday and could only get through 2 before my arms and fingers became so weak that I couldnt hold the can anymore. Trying to curl my daughters hair is useless, I get so weak I am afraid I am going to burn her. I am not sure how many of you here have smaller children (mine will be 9 in December) but how do you cope with the feeling of guilt that you cant do all the things you want to with them?

[niki3350]

I seem to get weak arms more than weak hands, It is a struggle at time to dry my hair,drive my car or do anything that involves raising your arms.

I do experience coordination problems in my hands and really struggle with fine motor skills, cutting sewing and writing.  I also cant tell if things are hot or cold in my fingetips,usually until its to late, have so many burn marks now its unreal.

[selmaS]

I am sorry...but chiari does seem to follow that pattern.....I would also caution u to look at ur activities to see if altering some may help cut back on the progression of ur  symptoms.

"selma"

[angie797]

Most of the time I cant lift anything above 1 pound. I dont have a chiari doctor. I tried calling Dr Oro (he is only 3 1/2 hours from me) but they are not on our insurance and they never called me back to see if they would become a preferred provider and he is out for 6 weeks. I have a NS here who it a firm believer in the CSF flow and I had that MRI last week which shows appropriate flow. I am to see him on Thursday but things seem to be getting worse by the day. I am not sure what to do. They have tried many different medications to help with the pain but non have worked.

[selmaS]

Hi...yes...my fingers even feel like they r too big and clumsy to pick things up....sometimes they even feel stiff....not flexible to pick things up......

Upper body strength is a typical chiari symptom...so u may find it diff to lift a pot with water in it even smaller pots....

Have u found a chiari dr yet?

"selma"

[jacmurphy]

My son gets weak arm and hands. When the weakness comes he can't lift anything and if he has something in his hands he drops it. He finds it hard to open bottles now and got himself locked into a children's bathroom at the hospital because he was just to weak to turn the handle. His fingers never stop twitching (jerking)