I've found alot of information on the acute cases of SCLS, but would like to learn more about the milder cases of SCLS. What were the first symptoms you experienced? Did these symptoms appear gradually? Have they progressively gotten worse over time, or are they about the same as when they started? Are you swollen all the time, or do you have times when you are not swollen at all? Do you have pitting edema when swollen? What are the triggers and medications you have found that help you manage your symptoms? I was diagnosed at Mayo Clinic in Rochester 10 years ago with Idiopathic Edema most likely caused from leaking capillaries. In reading the posts on this site, I see many similarities in symptoms... however, mine are much milder than the acute cases described here. I would so appreciate hearing from some of you that do not have the acute severe symptoms that require hospitalization.

Hi & welcome to this site. I have learned alot ! I started my journey w/ SCLS in 2000 with a serious episode March 2000. I was in the hospital for 4 month with another year of rehab. I was finally diagnosed Sept 2010 @ Mayo clinic. What I have figured out I have been leaking & was mistaking it as doing too much, etc. I swell, but not as bad as you have experienced. I also get tired, short of breath, nausea, etc. After resting for awhile, the symptoms go away. I am on Terbutiline & Theophalline (spelling ?) You will learn alot from this site & sorry to hear of your episodes. Take care ! Dawn

Dawn, thank you for your reply. I have learned a lot already from the site. It is wonderful that so many are willing to share. Prior to your serious episode in March of 2000 were you swelling or having other symptoms that you can now connect to the syndrome? Or did it all begin with that serious episode? I read where TimPro said his wife's symptoms began shortly after her Mother's death... I found that interesting, as mine started days after my Father died. Did you have any emotional trauma prior to your symptoms?

Hello and welcome Bbamber. I am one of the chronic 'leakers' ( see my profile) and am not having too much success in finding treatments I can either manage or that have an effect. I have had mine for 10 plus years and was in a very stressful job at the time it began but that may be coincidental. I also get tired,nauseous etc when I get hot and I do swell rather alarmingly but not as much as the acute cases seem to. The only time i am not swollen is when I wake up first thing in the morning now. It used to be intermittent but has become increasingly worse over the years. A cold shower or lying down seem to help a bit. Sometimes I have no idea what the triggers are. I just feel myself swelling up for no apparent reason ( although I am sure there is one). I have not given Terbutaline and theophylline a fair chance yet as I need a clear run in my life to do so. I would love to share experiences with you

Windows - I am very happy to share my experiences. I hope you and others will do the same. Maybe something we share will make life a bit easier for someone else out there. I haven't found anything that has made the swelling completely go away - but have gotten pretty good at figuring out what helps and what makes it worse... at least for me. I've tried almost everything that anyone has ever suggested over the course of the 44 plus years I've had this problem, so can also tell you what didn't work! Feel free to run anything by me - I've probably tried it! Here is what has been most effective for me: I eliminate salt from my diet as much as possible. I try to cook fresh foods & veggies - nothing processed or canned, if I can help it. I've gotten pretty good at seasoning foods so that they don't need salt. I have a huge spice cabinet! I stay a little bit dehydrated most of the time. I've found the more I drink, the more liquid I have to eliminate. I drink mostly water - with a splash of fresh squeezed lemon or lime. For me, elevating my legs is a huge help. I rarely sit with my feet on the floor. I prop them up on something without even thinking about it. I stand as little as possible, for some reason, standing is really tough for me. I've figured out a career on the computer that allows me to work from a recliner with screens that tilt out over me so my feet are elevated the entire time I am working. This has made a HUGE difference in my daily swelling. I swell when I get hot. I keep my house cool, sleep in a cool room, and spend time in the pool or in the water when I am out enjoying the Florida sunshine. The pool seems to compress the swelling from the tissue. I avoid the hot tub - and on the occasions that I do use it, I don't crank the temperature too high. I have found it hard to exercise, because it makes me swell more. I have a Palates machine that I can use without swelling as it puts me in a reclined position - I need to use it more often!! I can walk along the beach if I am walking in the cool water. It seems to keep me cooler, and the water compresses on my feet and legs which helps keep them from swelling so much while I am on them. I've found that taking diuretics at night seems to make them work better - so if I have a day where I need to start out with as little swelling as possible, I just plan on waking up at night. For the last 4 years or so, I have been on the amphetamines, and they have really helped me. They don't stop the swelling, but certainly slow it down a lot. I can do more before I start to swell, The down side, they make me much hotter, and make sleeping a challenge. Higher doses might do more, but I have enough trouble sleeping with the minimum dose. I've found that if I am not feeling stressed, I don't have too much of an issue taking them However, if I have a period of stress, they seem to make things seem 100 times worse. I have to remind myself that it is meds and things are not as bad as they seem. I've found that if I get too swollen, my sinus will stop up and I will start feeling like I am getting a bad head cold. I will start sneezing and this is usually followed with the stomach bloating and feeling like my digestive system stops working. If I take Claritin D at the first sign of the congestion, it will usually go away within a few hours. If not, it can develop to the point I have to go to bed. I feel like I have so much fluid in my abdomen that it makes it hard to breathe and it can also make my heart feel like it is working harder than it should. About a month ago, my Dr. decided to have me take Allegra D daily. It is too soon to say for sure, but I have had several days with extreme swelling and it did not progressed to the bloating stage. Normally, this would happen 3 or 4 times a month... I am excited to think that this may be managed with the Allegra D. I've read on here that Singulair is being used by some - I will mention that to my Dr. too. Compression boots help me to get the swelling out of my feet, ankles, and legs when they get really bad. When I travel, I take this gadget with me, since I swell on all flights. I just put the boots on as soon after landing as I can. I also have a small one person infrared sauna that I use when I am really swollen. I feel worse before I feel better when I use it! Heat does makes me swell - but I am lying down, so that makes me not swell as much with the heat. I feel my hands and feet swell initially, but eventually, most of the swelling will melt away. It takes most of a day to get the swelling out - but is very helpful when I really need to eliminate the fluids. My bed can elevate my feet and I sleep with my feet elevated if I have been up on them a lot during the day. I've found it help to keep them out of the covers - so they stay cold and the rest of me is tucked in! Oh, one more thing for the ladies - I found that moving to a tropical climate made it much easier to find shoes! Flip Flops always fit swollen feet and are the in fashion thing here! Well - there you have it - a lifetime accumulation of tips on what has worked for me - until someone finds that magic cure!

Hello Bbamber ! Please have a look at my profile to learn more about me so as I am one of our community longest-living survivors of SCLS, 22 years after diagnosis (1988/1989) having a great expertise by this rare disease and we can do or not to be more confortable. But I am a french woman (67) and I had to translate in english some documents they I wrote in french for my doctors at the beginning of my troubles + a lot of tricks to overcome. I will come back to you in a frew days, perhaps this week-end. I resolve my shoes problem : I always carry a second pair of shoes with me ... one for the morning, the other bigger size in the evening ... so as for my dresses also in 2 or 3 sizes ! Best regards, Maggy

I do too Maggy. I have a morning set of clothes and an afternoon one. Same with a hot day and a cold day one! I never look the same! Sometimes I am a tiny person, sometimes a ..er ...bigger one!! I too, will reply BBambe.r. I am just flat out at the moment

i'm now counting my blessings. I do swell somewhat during the day, but not where I need to change shoes or clothes. When my first episode hit me in 2000, it was during an extremely stressful time with a business partner. Noone had any clue when I went from feeling fine to "smurf" blue within 16 hours. My hubby was told I had a 5% survival chance. We currently own a retail greenhouse operation. I do what I can, and if gets too hot there, or if I feel tired I am able to go lay down with my feet up - it's amazing how an hour or two of rest & I can feel like a real person again !

Thank all of you for your feedback. I have two different sizes of shoes in my closet - but don't swell enough in a day to have to change clothes... I can't imagine how tough that would be. What is the typical weight change in a day for all of you? Mine varies from 3 to 8 pounds in a day. Maggy, I look forward to hearing more from you on how you manage this. I am on the edge of my seat - hoping for something that will work better for me. Dfye, owning a greenhouse operation would be very tough... Lots of walking and standing and in warm conditions... You are a hero! I am sure those rest breaks are vital. I would like to know more about your first symptoms - when you thought you were just doing too much. Can you remember the first time you swelled? Did it start out in your feet and ankles and migrate to other parts of your body over time? How long did you swell before you had the attack that put you in the hospital? Did you swell every day prior to the attack? It is interesting that both you and Windows report that a high stress situation started your symptoms also. Have any of you mentioned this to your Doctors? I have not... I don't know if this is just unique to us, or if started this way with others. If other also can tie this to high stress it might be a clue for the researchers...

Yes, I was going through a very extreme time of stress in my life at the time of my first initial attack. It was Oct., 2005, Dec. 2005 went to Mayo and was diagnosed with SCLS. STRESS I believe is hugh factor!!! I too wish they could find out more about this, it seems to be a factor with most of us. Enough to warrent some research, I hope. I take T&T therapy. Had severe attacks three in a row Dec. 2009,. At that time received IVIG. I do not do monthy treatment, at this time holding my own on T&T. I do have a port, and I see my doctor every month for lab work, and she is keeping close watch. I monitor blood pressure daily, and sometimes, when needed I take steriods. Seems to be working for now, hope and pray it will continue. I too swell, have to keep home really cool, and cannot stand the heat. Nice hearing from all of you, hope a cure will be found.

Hi Bbamber ! My first symptom before my first attack in 2000, was a severe bloody nose that lasted a long time. This was unusual for me. Later that evening I was really tired & thought I was coming down with the flu. By the morning I was so weak I couldn't lift my leg over the bathtub. I talked to my husband, went back to bed & by noon he took me to the ER because I was sooo cold & turning blue. I would start swelling in my foot & it would move up my leg. I always thought I was just overdoing whatever -- I didn't realize I was actually leaking until I was diagnosed Sept 2010. I didn't swell up evry day - only when I was pushing to get more done than my body wanted to do. I'm not doing that anymore - when I'm tired - I rest. After my first episode, my right leg was amputated above the knee & I don't have much feeling in my left foot due to nerve damage. I have a c-leg & wear an AFO on my left foot so I do walk as much as I can, but use a power chair for the most part in the green houses. I'm very greatful everyday that I am alive & live life much differently. I don't sweat the small stuff ! Prayers to all my SCLS friends & the people of Japan ..

Dfye, Am I understanding you correctly - you didn't swell at all until after your first severe attack that started with the nosebleed?

Hi ! Yes, I was actually at my healthiest @ 36., in 2000. Eating good, had stopped smoking 2 years prior, exercising on a regular basis, social-weekend drinker. Then the bloody nose - then 4 months of hospitalization & 1 year of rehab to learn how to talk, walk & figure out how to be independant again. I was at the UW Madison hospital & they had no idea what the illness was & weren't sure why I suddenly turned around & got better. My second attack was in 2005. Not as severe - 1 week in the hospital. Then again Aug 29, 2010 when I had 3 attacks in a row. I went to Mayo & was finally diagnosed. When I became ill in 2000, I knew my business partner was getting ready to fire me. This started in Oct 1999 & the weird part was I finally figured out what "to do with the rest of my life", was when I got sick. Hmmm. I

Sorry to hear that, dfye - but your life is not over yet! You are just a babe at 45:). It is a strange disease. My first obvious symptoms came when we went to Vale Co and I am guessing it was the altitude that triggered it and I swelled up like a balloon and was quite sick though not hospitalised. I have learned to adjust my life around it but it has cramped my style severely as I have always been very athletic and fit and an outdoors girl. Now I have to do everything early in the morning and evening to avoid heat which is a major trigger as it seems to be for most here. Now you cannot drop a clanger like that without explaining what you were going to do with the rest of your life! Spill the beans:)

Maggy, Do you take medication in addition to the acupuncture? In reading your profile, it sounds like you credit much of your success to acupuncture. I've tried it in the past with no change in my symptoms at all. Does your Dr. use a special technique? Is this something he would be willing to explain to another practitioner? Has anyone else ever tried acupuncture?

Hello Bbamber, I don't have any other medication for SCLS, only acupuncture initiated by a very high level acupuncturist, with more than 30 years practical experience in acupuncture what make the difference. Dr TRAN VIET DZUNG is also teacher at the Faculty of Medecine at PARIS, and at the University of SAO PAOLO in Brazil so as by various acupuncture training courses for MD in USA or other countries and international lecturer. So I know that other SCLS patients are at time treated by acupuncturits having learnd his methode : 2 or 3 in USA and 2 or 3 in BRAZIL and under his supervision. All the patients are well, so like me, and don't had new crises at yet. Other patients are also treated by MD acupuncturist formed by him. No problem for him to explain to an other practioner, who must be an experienced and willing MD because the complexity of this rare disease. If you want more information, please send me your e-mail address. Best regards, Maggy

How do I send you my email address?

To MAG.H@wanadoo.fr