- CASE FILE
Over 100# of weight gain from systemic swelling in 1 month. Causing severe pain and complicating EDS. Specialists confused and blame me.
ABOUT THIS CASE FILE
I am a 36 year old woman who hopes to find answers to why I swelled over 100# in one month. I have been in constant pain from the swelling and I feel like I am an exploding pilsbury dough man. I have several chronic illnesses including Ehlers Danlos Syndrome, Intracranial Hypertension, Renal Failure that I acquired from diuretics, major depression, chronic Lyme and Bartonella, hypothyroidism, antiphospholipid Syndrome, and being worked up for cervical instability. I have a ventricular plural shunt that manages my Intracranial pressure well. The swelling is the thing that we have no idea what is causing it. I have seen so many experts and have had so many labs run. I have failed Fyrazir, and Ruconest trials as we thought that perhaps I have hereditary angioedema but have ruled it out. The swelling started in May of 2018 and has remained with fluctuations of about ten pounds. Because of the severe swelling my EDS is out of control as my already lax joints are swimming in fluid I am subluxing and dislocating them constantly increasing my pain and hampering my mobility. I was also diagnosed with chronic Lyme disease last fall. I have been in treatment first with the triple threat antibiotics, then since then I have been using a herbal protocol as my body could not handle the antibiotics as they increased my GI symptoms and caused increased laxity in my joints causing me to tear my anterior meniscus while on them. I also have had chronic diarrhea for at least the past three years. I am also post hysterectomy due to severe ovarian cysts and endometriosis. I also had a saddle pulmonary embolism after my last shunt revision where we placed hardware to fuse my ribs where the shunt insertion is as my ribs kept slipping and crimping off the shunt tubing. Shortly after that surgery and recovering from the PE a screw from the hardware eroded through the rib and collapsed my lung. The only thing that has has been somewhat helpful but only for a few hours is lymphatic drainage massage. With that treatment I will reduce by about five pounds but by the next morning that weight will be back. I haven’t been able to have a full body massage like I probably need as I only have about thirty minutes with my physical therapist to address the swelling, subluxations and attempt to strengthen. The swelling is preventing me from doing any strengthening to support my hypermobile joints. The swelling is threatening my mobility due to the constant subluxations and pain. I already use a service dog for mobility support but because of the swelling I am to heavy for my current dog to help me. I am trying to train a new service dog but the pain, mobility issues and fatigue. I am terrified to end up in a wheelchair. I had to go out on disability after my first shunt surgery and have never been able to return to work. I live off of SSDI and a monthly allowance from investments. It is not enough to cover the medical bills and everyday bills. I would love to have an answer and treatment for the swelling so that I have a chance to treat the EDS. In one month the swelling caused my weight to jump from 175# to 298#. During this time my renal function has been the best it has been in years and my nephrologist feels certain it isn’t my kidneys causing the swelling.