@eft27 thanks for the reply. I have also considered it might be EDS, or a combination of EDS and something else. Whatever it is, it starts out as muscle weakness which then definitely caused (at least in my case) joint laxity. I sometimes think when the muscles go flacid, a whole lot of other structures do too (such as tendons and ligaments) and then everything gets loose. For me this caused instability in my ankles, knees, pelvis, and spine. As the muscles start to regain some of their strength (which some of mine have, but not all of them yet) these joints start to stabilize, so for me so far, my ankles and pelvis are much better, but still weakness in knees and spinal instablity. Awful stuff, as you know.

Curious for you, did you first get CIDP and then EDS, or vice versa? Just wondering how your symptoms began? Thanks again!

Hi Vrobters129,

Thanks for the well wishes. I too am scheduled for an MRI of my knee next week, though, not sure if it will show anything in regards to the joint laxity – we’ll see.

I’m starting to think much of the laxity I’m dealing with is due to the massive muscle weakening and atrophy. Having serious problems with my right ankle now because my calf muscles are pretty much mush at the moment. It’s so difficult to exerise when the ligments are lax – ugh.

Trying to get an appointment with a Physiatrist and continuing Physical Therapy, but I feel progress is going to be slow going.

Hi Cer100,

Thank you for your reply. Curious, how are you doing now? Are you still in the recovery phase and how long has it been since onset for you? I know how horrible this is, and wish you the best, and for a full and complete recovery.

My first bout with this (2009), it took awhile, but after 3-4 months, I finally, gradually started regaining my strength back, was able to ditch all the braces at 4 months, and was able to walk again on my own. I’d say it took a total of maybe, 8-9 months until I felt like my former self again. I can’t even begin to describe how grateful I was and said I would never take walking for granted again.

Now, here I am again (2017) and it’s 2009 all over again, where I’m faced with trying to just get myself through a day with severe mobility issues, and hoping to god, like last time, I will eventually recover.

I think for me, the joint laxity makes recovery even that much more difficult, because if I do too much of anything (which is hardly anything), I feel like my joints are gonna pop out of place. This in turn puts a great deal of stress on ligaments and tendons and feels like constant injury (trauma), which then later translates to burning nerve pain.

I kept trying to tell the Dr’s (family Dr. and Rheumy I’ve been seeing, who keep wanting to say I have Fibro, when I haven’t even had the EMG yet), that this is also one of the symptoms I’ve been experiencing, like EDS symptoms, but they’d just tell me that was impossible, you don’t have EDS (and of course would never really even examine me for the issue).

When I finally heard of GBS (literally just a week ago), after my Mother ran all of my symptoms by a Nurse/Friend of hers, her friend immediately said Guillain-Barre, which I had never heard of up until that point.

I googled it, and after reading everything I could get my hands on about it, literally went “this is it!” Nothing I had read up until that point described me symptoms to a T as GBS has, and the fact that it can relapse, which is what I am currently in now.

How the Neurologist I saw at 2 1/2 weeks from onset missed this, I have no idea. Except sitting on his table, apparently I didn’t look sick enough, and when he examined me he didn’t have me take the braces off or watch me try and walk without them, and so instead, steered me down the Rheumy path and scheduled my EMG five weeks out.

I have only weakened/deteriorated even more since then, but since he made it sound like it more than likely wasn’t neurological, I’ve only been going round and round with my family Dr. and the Rhuemy, who have done much of nothing to help me.

Once I heard of GBS I called the Neurology Clinic and spoke to a nurse there and told her what’s been going on since I saw the Neurologist and I think what I have is GBS, which my PT also believes I have (who I just saw for the first time this week also).

All this said, it has been a nightmare, to say the least (which I’m sure just about everyone who’s gone through this will attest to), trying to work, not lose my job, and being forced to walk on my legs all this time (seven weeks now), increasing my pain ten fold at night.

Come to find out, after reading up on GBS, joint laxity is and can be a symptom. I came across this information in an online article:

“The most common symptoms of hypotonia in GBS involve problems with mobility and posture, breathing and speech difficulties, lethargy, ligament and joint laxity, and poor reflexes. Some hypotonics may experience constipation, while others have no bowel problems.”

I’ve just been wondering if any others dx with GBS/CIDP have also experienced this as one of their symptoms.

At this point, I think I am so frustrated beyond words. Today I finally go in for the EMG (which was originally scheduled for the 17th but the clinic bumped me up to first available, since I called them), but at seven weeks since onset, I don’t know what it will show.

Hoping for a full recovery eventually, but it is a long process. And hoping I can finally get some Dr’s who will actually help me.