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Full Body Muscle Weakness


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hey folks... hope your all doing well.

last night...i wanted to wash my hair at least.. i wasnt up to a full fledged shower....so in the sink my head went and i washed my hair... well once i brought my head upright and came to full stadning i totally felt like i was going to pass out. and my entire body got extremely weak.. i'm taking like my entire body felt like it turned into silly putty... and i was trying to walk to the couch... and i was like falling sideways..i stumbled to the couch and i laid there for about 15 minutes.. hoping that the wekness would subside.. and it did not....

I felt very disoriented and had a strange feeling thru my arms and legs...it was like a fuzzy electrical surgy feeling...

I'm not totally sure what is going on .. i have suspicions...prior to my hair washing adventure.. once i woke from my afternoon nap i felt weak all over but in a different way..if that makes sense. and i was just wrung out and blah all evening.

i keep getting smacked with full body weakness it just hits me fast and hard. It makes me feel like I'm getting benadryl and the strongest sleepy med thru an IV that has instant effects on the body.

geez i feel like i cant move when that happens (different from my paralysis spells i babbled on about before) .

I dont know anybody get this> anything help it subside or simmer down?

i get these darn near daily lately... and i sure dont like it.. they exhaust me more then i'm allready exhausted.. and make me sleep rediculously long.(4-6 hours after i get like that after sleeping all night and throw a nap or 2 in there on top of it!)

grr i dont like feeling like ball of human silly putty! :)

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This sounds like a drop attack, but I'm not a doc, so find one with a brain that looks outside the box, and get checked out.


I have had these, and they do come on suddenly. People with upper spine compression---(like you dizz), need to know this is one of the symptoms, but more so when the spine is unstable near the occipital area----(lower skull), as this can cause brain stem compression. I have both brain stem compression, and instability.

It's hard to find good doctors/surgeons in this area of the anatomy--------(basically, you need a surgeon/engineer----one that understands that bad mechanics in this area isn't good.) I belong to another support site for chiari malformation/

OR related conditions such as retroflex odontoid--(aka cervical/cranial instability), and this is serious stuff. I have read about subarachnoid Hemmorage in a couple of people with on going, untreated brain stem compression.


I don't want to scare you. I just don't want you to go for an extended period of time without the proper medical help. I'm not saying SAH could happen in your case, but folks who go for extended periods not knowing what is causing symptoms related to hind brain compression put themselves at a higher risk. Some have gone to many doctors who haven't taken their concerns seriously, however. This is lack of proper medical care induced by the medical profession, and is of no fault of the patient. In fact it's tragic that some patients with obvious neurolocial deficit don't get taken seriously by many doctors who should know better. There at times when symptoms may not be present at the time of examination, and it's this time that the physician needs to listen to their patients carefully. If they are not sure about ordering expensive medical testing, they should at least watch the patient more closely.

I hope this helps a little.


Maxine :0)

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:(;) uhm yeah maxine something is definately going.. and i honestly am getting mighty frustrated ....But in order to get GOOD medical care i have to travel.. and welll....gRRRRRRRRRRR!

I'm half tempted to call the NSG i saw last october and speak with him...I was talking to my mom last night (she was there with me) after my little adventure.. and we where talking about getting me back to Milwaukee and get this ball rolling on surgery....

Lets face it.. the dr's i have seen cant figure out whats going on... the good dr's I DO HAVE in my corver have done all they can do...Stuff comes back abnormal but nobodys putting the puzzle together!... so maybe I need to take a leap of faith.

Something is wrong.. and feeling the way I've been feeling now (not to mention the last 3 yrs!) in recent wks... somethings gotta give... and i guess i'd rather it be a piece of my anatomy..instead of my life ya know (bad joke..sorry)

I have so many neurological symptoms these days that i dont know what is coming from POTS and what is coming from chiari.. not to mention the other illness i got going on...only that i have it going on...

thanks maxine for the links.. interesting reads :)....


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Uggggg, I know what you mean Dizz. Every decent doctor I have seen for my spine instability & cervical/cranial (CCI)instability is out of town. I'm about to lose my orthopedic surgeon who was the second surgeon to validate my CCI. The doctor from NIH also validated the CCI, but she is a geneticist with NIH who is heading the EDS study. Dr. Grubb, and my regular EDS geneticist also believe I have the CCI. Dr. Grubb is local for me fortunately, but all the rest of the decent doctors are out of town.

Dr. Heffez who did my spine decompression surgery was in Chicago at the time I had my surgery. I've been to NY also-----that trip was not fun----(driving on the NJ freeway was a nightmare with a wobbly neck----- :( ). Thankfully it was my husband driving. I would have crashed, as I'm not used to bumper to bumper trafiic while driving so fast.

It's nice that my EDS geneticist and orthopedic surgeon are only a 3 1/2 hour drive. I hope the orthopedic surgeon will pass me on to another who has the same sense he does. I don't mean to put down docs----not at all. I just state the facts as I see them. Some of them are out of line, and don't follow medical ethics when they don't listen to their patients, sometimes automatically dismissing us as nuts.

I'm sorry your one of those that has to go elsewhere for good medical care. I wish you could at least get it in Cleveland, as this is not nearly as far as Milwaukee for you.

You know I'm here for you if you need me for anything.

Keep your chin up dear--- ;)

Maxine :0)

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