Hi everyone.  I was diagnosed in 2010. Had about 20 episodes before diagnosis. The episodes increased in frequency after the first in 1999. Each "episode" required weeks in hospital. In between these attacks, the swelling and symptoms continued with varying degrees of severity. I started IVIG in 2010 after diagnosis at Mayo at Rochester. I received monthly infusions for about 5 years and had only one more hospital worthy attack. The rest have been more chronic, less defined, mostly legs. I stopped infusions 4 years ago.

Recently, swelling is back and pretty awful. Lots of vomiting, headaches, short of breath, weak etc. 

My question right now: my calves will get so tight that the skin breaks and they leak clear fluid. Socks get wet, often soaked. I've put off starting back on IVIG because the side effects were difficult, especially the needed pre med steroids. I had just recently felt "normal" again post steroids, etc.

The swelling in calves makes walking painful and walking increases swelling! My calves are very painful but traditional pain meds seem to worsen swelling. At present, I can't take any meds by mouth as it results in a ridiculous amount of vomiting and burning pain in chest. No thank you! Has anyone else noticed an increase in swelling almost immediately after taking any typical prescription pain med or aspirin or NSAID? 

During the first IVIG treatments, I was married. This go around, I live alone. No family to help. I'm scared to death of going back on IVIG and becoming even more "sickly" even if for only in the short run. At least right now, yes, my feet and legs hurt but I'm not feeling flu-like and miserable. 

I worry about Compartment Syndrome and possible Rhabdomyolisis  (sp?), from breakdown of muscle tissue. I've had a 25 lb weight loss since GI symptoms started about 3 months ago. Now, with increased swelling, I've had 15 lb weight gain in two weeks. The gain is clearly all fluid. The initial loss was some fluid but a lot of muscle loss. I was put on permanent disability right after diagnosis. At that time I practically lived in a hospital wing.  I got better after 5 years of ivig monthly and i felt more stable and healthier. No episodes for 4 consecutive years. Only chronic milder symptoms. After stopping IVIG 4 years ago, it took some time but i almost had a normal looking life rebuilt! Any pain management info or compartment syndrome or Rhabdomyolisis input would be so helpful. Thank you! (Sorry if this is sounds confused - I'm writing on my phone and can't really see what I'm typing too well)

Cases of chronic SCLS and related chronic swelling disorders are currently the most difficult to diagnose and treat. Given what you describe, I think you are right to worry and need expert medical attention ASAP.  If I were you, I would have made an urgent appointment with Dr. Druey and team at NIH, and also would go back to the Mayo Clinic for their advice.  It wouldn't surprise me if they told you to get back on IVIG and see if that helps.  Please fill out your profile page with these and other details of your medical history. We're still learning a great deal from one another.

Hola Carole, ... siempre es doloroso saber de uno de nosotros que no funciona bien, cuéntanos como sigue hoy, adhiero a los comentarios de Arturo, tener la suerte de estar en los Estados Unidos es lo más recomendable. Lo intuitivamente lógico es que volví a IVIG ... no dejes de mantenernos al día. 
Ariel