I hate Lipedema

Hi Jeannie,

I was lucky enough to live near a lymphedema specialist who diagnosed me.  Try going to http://www.lymphnet.org/ , you can click on the "patients" tab and clck "search for treatment."  Sometimes a vascular specialist can diagnose it.  Good luck to you - many doctors are not aware of this condition!  If you find a therapist in your area on the NLN website, you can call them - they should  be able to refer you to a physician.  With this crazy condition, it is often the therapist who spots it first.  Good luck!

Nancy

I hate Lipedema, too.   It is by far the most difficult thing I have ever had to deal with in my life.   And that is saying a lot since I also have Multiple Sclerosis and several other painful conditions.  

I was diagnosed with Stage 3 Lipedema with Secondary Lymphedema in August of 2011 and my bariatric surgery was in 2004.  My legs have gotten progressively MUCH worse after my surgery.   My Lipedema has gotten so bad that it is now affecting my arms.   I eat hardly anything yet my legs and arms are growing.   I have been on steroids many times for the MS and the Lipedema doc says that can cause it to worsen also.   

It is nicknamed "Painful Fat Syndrome" and it is definitely the most painful thing I experience on a daily basis.  I have had manual decongestive therapy by a PT so the lymphedema part of it has improved.  I had to travel 10 hours to find someone who knew how to diagnose it, none of my local doctors even knew what it was.  It's hard to find any doctor willing to learn about it even though it was first diagnosed in this country in the 40's at the Mayo Clinic.  For some reason it is not taught and most lipedema patients are misdiagnosed with Obesity because that's an easy thing to label someone with on first sight if they aren't willing to dig deeper.   It's sad how many of us have gone through this.  It's mentally and physically  painful to live with this condition.   People judge on sight and don't consider that someone has done everything in their power, including bariatric surgery, and is still suffering.   

My doctor who diagnosed it is a Lymphologist.   There are hardly any specialists so it's hard to find them unless you are in a larger area.   I'm in a rural area with smaller towns so it was difficult and I had to travel.   The traveling was worth it though because she changed my life and hopefully now my daughter will be saved from the same fate now that we know what it is.  She told me that I need to have a specialized type of liposuction on my legs.   I put it off at the time but have to seriously consider it now because the Lipedema is affecting my mobility and causing damage to my knees.   

I am hoping to contribute to spreading word about this debilitating disorder and help to increase knowledge within the medical field.   Putting a name to something that has haunted me most of my life was a life changer for me.  It may not make me more comfortable to wear shorts or a swimming suit but it changed how I felt about myself.   Learning that it wasn't my fault--that I wasn't a failure--and finding out that my daughter may not have to live this way definitely made that diagnosis day one of the best I can remember!  

hi Nancy,

I too have Lipedima. I had GBS in 2000 and lost 240lbs. It felt great to have the weight off. in 2004 I got Lyme Deases. My bodyas crashed from it. No one will listen to how it has changed my life. Everyone say's Lose weight...I have now gained 100lbs back and can not move. I need to find a Dr in MA who knows about lypedima to help me. I have been trying. Your post caught my eye. My legs and arms are a whole different size than my top have of my body. Lyme left me with this as well as fibro and CFS. I wish you luck and feel free to contact me. I have always had "sturdy" legs but after GBS I never really lost them but know they have blown up.  best of luck,

Jane

Hi Jane,

 

Are you on Facebook?  I belong to a really great lipedema support group.  Just search for "Lipedema Sisters USA" to find it.  It is a really active, helpful group.  A few of our members also suffer from Lyme also.  Good luck!

 

Nancy

Just want to post hello! Posting from phone want to be able to find post on computer tomorrow.

Hey Miss Jean....thanks for the reply.  You inspire me and I will try the pool soon.  I just feel silly going in a t-shirt and shorts...I know I need to get over it.  I will wear my bathing suit with some trepidation. :-)  I also work in a hospital! I am a palliative care social worker and coordinate hospice and palliative care at our facility. I also spend a lot of times on the units meeting with patients and their families as they transition to palliative care.  I have watched the Little Couple and have always been impressed by Dr Jen in the NICU.  I will try to catch you if that episode re-runs!

Had you thought about pursuing surgery for awhile...I thought I read on your profile that you had lap band surgery first and it did not work.....I have read a lot of posts about this and that is one of the reasons that I decided to pursue gastric bypass....have you known anyone that got the sleeve?  The surgeon who I will probably have likes the sleeve....my insurance does not pay for this right now and I am still thinking RNY is the best option.  I met with the dietician today and she was very nice.  Lots of appts through this process but I will make it through......

Have a great July 4th!