New numbness in toes & legs

[AmyFS]

I'm in the middle of a flare up and I'm having some new symptoms. About 3 weeks ago, when I woke up the morning my toes on my left foot would be numb.  They also felt like they were swollen but didn't look that way.  They felt big or puffy. A week or so later, it was both feet. The last few days it has moved up to my legs, like up to my knees.  
I've had problems before with numbness in my toes before but it due to the Raynouds Syndrome (not sure if I spelled it right).  This is different.  
Does anyone else get this type of numbness? I'm trying to see if its Chiari related or just like a pinched nerve or something.  
One other thing: one of my usual symptoms that also has returned in weakness and tingling in my right wrist & forearm.  That I know is from my Chiari. I wonder if somehow the two (the feet & the arms problems) are connected since they are both flaring up at the same time. Any ideas? And I guess more ipmortantly has anyone found anything that relieves it? I am not on any meds other than regular ibuprofen. Thanks!

[cash242]

I havent been dx with EDS yet but I do get numbness over my whole body and I dont know why. I use neurotin that helps alot it is always worse at night I would love to know the cause but am just dealing with symptoms

[Sexybare]

I also have raynauds, nl diagnosed it. Fingers and toes go white and numb.
Mainly in cold weather or stresed. Hasn't happened in awhile.

Selma- you say this may be related to eds? When I'm in shower my right hip feels like its poppin out, it hurts so I excercise it right away. Its always when I shave. I also have tmj and my thumb on left hand is doubble jointed. My pinky toes are curled sideways and nl says left side is more mobile than right side. I've never been tested for eds. Dr oro didn't feel the need to either. I'm really thinking I could have this?!

[LisaRiu]

Hi, Yes I also have the numbness which affects my toes, feet and hands. For about 4 months I also had an area around my right hip which was numb and altered sensation. I couldn't put anything in my pockets because the sensations included burning, freezing cold, stabbing etc. That has gone now, but I still get it in my hands and feet. Sometimes when I walk for a few minutes, I cant feel my feet. It is definately worse in the cold weather. I have a sryinx too which I suppose is the cause.
Hope you get your answers soon.

[selmaS]

  Yes hypermobile joints....but not all types of EDS have the joint issue, so that should not be the only thing u look at.

Yup-
Sleep disturbances are common in EDS. Chronic pain often disrupts sleep and dislocations/subluxations may occur regularly during the night. I have issues falling asleep. Some dislocate joints turning over in bed and either have dreams about being stuck in A&E or it wakes them up throughout the night and then  can’t get back to sleep afterwards. Migraine headaches often start in the early morning hours. Various sleep disorders associated with EDS created by nocturnal myoclonus/periodic limb movement disorder and restless leg syndrome (RLS).

[AmyFS]

Hi Selma,
Yes, my primary care dr diagnosed me with it.  I was having a physical done and I had an incident happening when I was there. A "dead" toe as I call it.  It happens in my fingers & toes from time to time, especially it seems when the weather is colder. Not much in the summer.
I've never been checked for EDS.  Isn' that the one with the over-flexible joints (I can't think of the right term).  I don't have any symptoms like that but I will look into it more.  I think you & I have other symptoms in common if I remember correctly from posts over the years, so you may be onto something there. Does EDS affect the nerves & cause things like restless leg syndrome and the tingly crawly feeling near my shoulder blades? I get those, too.

[selmaS]

  Hi Amy...u mentioned Raynauds, were u dx'd with it? The reason I ask is Raynauds Phenomenon is a symptom of Ehlers-Danlos Syndrome.....

With the joint and muscle pains u can feel like u have swollen areas when they r not.

Just wondering since I have had some of these issues and was Dx'd with EDS.