Hypermobility and Lipedema go Hand in Hand – It’s Time to Get Serious About Saving Mobility!!

Hi friends!

If you’ve followed me much, you know two things about me:  I’ve had several surgeries to treat my stage 3 lipedema (and I’m incredibly grateful), and I swim like a beast for compression in the water and for exercise I can do heavily.   Before my surgeries, my knees gave me problems.  Before I became the crazy, driven self researcher I am today, I said they were ‘flipping inside out’ and didn’t really understand that this was not normal.  After I got involved in the lipedema community, I learned about Hypermobile Ehrlers Danlos Syndrome (hEDS) and that dislocations and subluxation are also part of lipedma for me.  Both are loose connective tissue diseases.

It turns out there’s a term for it when my knees act up (not flipping inside out), subluxation or dislocation.  When it happens, I feel it slip sideways first, then it locks up for some time (it’s getting longer) and then it will hopefully pop back into place.

And believe me, when it happens, it’ll bring me down.  It hurts actuely at first during the locking and popping, then will swell and be sore for 2-3 days after a subluxation. It’s not a super fun experience.  Sometimes when it happens, I cry, either from pain, or from fear that I won’t be mobile much longer.  And I’m an active gal.  I travel very extensively, hike, swim, kayak, etc.  I want to do all the things for my whole life.

After I had surgeries that removed massive amounts of fibrotic and diseased tissue from my calves and fat pads arounds the knees, unfortunately my knees began slipping more and more often.  At first it was when I would lay on my side or roll over, then when I was doing certain swimming and free floating in the pool, and know it happens on stairs, and is progressing to when I’m standing or walking normally. If I lay flat on my back without a pillow under my knees, they hyperextend backwards, like a very slight letter, “U.”  I thought the growth of my legs would take my mobility, but now I’m terrified that my joints not staying together and how much it hurts so actuely, wil do it.

My theory on what caused it is that my connective tissues stretched out with years of nodules being on my knees, pushing them out.  Now they’re loose like puppet strings.

I’m still working on the lipedema treatments, but now’s the time to fight for my mobility, and to prevent dislocation and resulting pain by increasing muscle strength.

• Tomorrow, I’m making an appoinment to get a genetic test to verify a formal hEDS diagnosis (there is a test for that, but not for lipedema…yet), and discuss some prescription therapies I heard a hint about at the Fat Disorders Resource Society 2022 Conference that are being used for hEDS (I didn’t get a drug name).
• I’m ordering two sets of knee braces to wear (man, do I hope they fit!), one that can be for the pool, and one for big walking days.
• I’m meeting with my physical therapist and have already gotten assigned some basic exercises to strengthen surrounding muscles (leg lifts, side leg lifts, and a very shallow, very aligned standing squat, for now.  Trust me, I’ll post a video soon).
• And I swim almost daily, for a couple of hours.

https://youtube.com/shorts/dRhKjiMuQ2k?feature=share

I have a couple of routines from my occupational therapist, and sometimes I freestyle my workout. Some of the muscle and core stabilization exercises that I perform during aquatic therapy are:

• Knee extensions
• Flutter kicks
• Shoulder flexion and extensions
• Horizontal abduction and adduction
• Windmills
• Punches
• Triceps press
• Push pulls with the kickboard
• Reverse abdominal curls
• Prone hip abduction and adduction
• Prone flutter kick
• High knee walking
• Walking
• Jogging
• Dancing like a fool in the water to bad music

I’m determined to do all I can to stay mobile as long as I can, travel as long as I can, and work as long as I can.  For those of you who are hypermobile, share your ideas and what’s working for you!  Here’s a great article with all kinds of information on this condition, including non-surgical and surgical remedies.

Until next time, stay well and fight hard girls!

Susan