Gelling Or Extreme Stiffness...

[comfortzone]

Since my entry into the world of EDS and orthostatic issues two years ago after bilat. knee replacements I have as my worst symptom -- severe stiffness. It is at its worst when I first open my eyes after sleeping at night -- and also anytime I'm in any one position for any time and then stop to sit or change positions.

In the morning it takes well over an hour to work out the stiffness. I sometimes manually unfold my hands and arms etc. to get moving. My feet don't seem to move but in little steps just inching alone holding walls and furniture.

If I stand to cook for a time such as at work -- I just push to the end of the shift without a rest break - because were I to do that - I would need help getting out of the chair - or if no help was available - I'd likely manage but it would be so so embarrasing to be seen with that severe of mobility issues -- so no breaks for me - though I know I need them.

I asked an EDS doc about it and he said it was called "gelling" - I tell him after working on my feet - getting in the car to drive home - once home I can hardly make it to my door because of the stiffness.

He said EDS can cause some of that - but especially arthritis. So I googled it and find it's mostly rheumatoid arthritis that has this going on. OA too - but the stiffness with OA they say stops in a few minutes. I don't have RA.

So if I have replaced my knees and hips - why would I still "gel" ? I don't know. Does anybody else do this? I am not red nor swollen at all - just can't move hardly at all. Is it tissue fluid? I don't know much about this other than it is making life harder and harder and I fear I'll be in a wheelchair before long... so scary.

I picture jello and how it solidifies and liquifies - Anyone know if this is part of pots or those mast cell things or eds in it's origin? It is miserable and disabling - I wish I could know what to do to make it go away!

Thanks

[hilbiligrl]

Hi nowwhat!

I have stiffness, then jelly legs back and forth. One day im so stiff that i baby step to the kitchen or barely able to roll over in bed or get up from a sitting or laying position, or heck, just any movement. Then the next day my legs can be jelly and wobbly. But I haven't ever really been stiff like this until this past year as my suspected pots has gotten dramatically worse with no improvements in over a year now, so the stiffness is new to me these past few months. Today im stiff all over really bad.

Im still learning everyday, as i have new symptoms on a weekly basis. I have no idea what's causing it. Seems like the right side of my body is more stiff than the left and hurts more, i dunno why though.

Im eager to hear some other responses though!

'hilbiligrl' (tennille)

here's my stats until i figure out how to do it permanantly: undiagnosed for over 8 years (maybe since childhood) until sept 2010. Diagnosed as autonomic dysfunction at vanderbilt ER. Awaiting testing and appointment with Vanderbilt in Feb. 33 yr old female with 2 kids. Curently taking Lunesta 3 mg and trazodone 50 mg for sleep. I suspect mcad and vasovagal syncope though.

[Noreen]

I have the same issues although I have attributed it to RA. It has always puzzled me, though, that my labs are good yet the symptoms such as this are still there.

[hilbiligrl]

my question is to 'nowwhat!'...... if you don't mind me asking, what are your symptoms with EDS?

thanks

hilbiligrl

[comfortzone]

It's weird with EDS - in that for me the only clue that something wasn't right began with a global or body-wide pain scenario at age 51. Where I had these 2 knee surgeries to propel me into the land of the physically functional people..........the opposite happened. Two years prior I had hip replacements too.

So firstly pain not only in my legs but feet, hands, elbows, shoulders, back, headaches -- just real hurting pain - where I didn't have that before the surgeries ... so as I was trying to find answers - I then began dropping things, getting numbness and tingling in my arms and lots of weakness in my legs....so they thought MS or Myasthenia Gravis - but all tests came back normal.

Well normal labs - xrays, scans, mri's - showed a lot of osteoarthritis, some buckling of ligaments, degenerative disk disease, foraminal stenosis. My new knees weren't doing all that great either - the right one with the kneecap shifting laterally.

Then fatigue knocked me over - where I would have to lie down flat to relieve the fatigue after being up for a couple of hours in a day. This was unusual for me.

Then palpitations, widely labile blood pressure, baseline heart rate of 100 to go up with activity. What I guessed to be dysautonomia issues (that occur frequently with EDS)

Then just plain muscle weakness - hard to get out of chairs, to lift anything and a lot of 'itis' things - tendonitis, bursitis, where I had to get shots of cortisone. And as mentioned this new onset of incredible stiffness ~ almost a Parkinson's type of gait in the morning once walking - totally freaked me out.

A rheumatologist put this together as Hypermobility Syndrome - when she found my Beighton Score of 6...and reviewed my systems throughout my life of varicose veins, hernias, GERD, diverticulosis, SVT, feet issues, dental issues, severe arthritis - things impacted by underlying collagen issues. That was confirmed by EDS specialists - but I'll check out some other things one more time with EDS doctors.

So while it's inherited and I've had it my whole life - things like dental anesthetic working poorly on me - lots of things add up to EDS - but I didn't notice because I had never heard of it - and I never did frank dislocations of my joints (many do). My skin is soft and hyperextensible - but you would never really see it as that much different than most peoples unless you were looking for it or a HDCT doc was looking at it. My scars are just about normal - where some EDS'ers have wide, thin or papery scars. I was always weak though as a kid == never able to do the gym stuff....later I learned that's because your muscles are different - using their energy to stabilize joints - and to help in guiding you in your proprioception 'system' which can be out of whack with EDS. Yet some EDS people are marvelously flexible and seem quite strong to boot.

When the hypermobile joints became painful was the official beginning of my 'syndrome' I guess. For some people a pregnancy can usher in the debilitating aspects of this - for others a surgery -- it's odd how some have clear onsets at an early age - and then you get late life diagnosis d/t symptoms like me. Some have the symptoms their whole life - but don't put it together because it's rare - and doctors are still not yet educated to check for hypermobility when someone has chronic pain issues with an unknown cause.

Have a good night :-)