Hi all! I'm new to this community and in the process of learning about scls. I was wondering if any of you suffer from daily generalized edema and/ or fatigue???? I do and when I suffer an" episode" ( i.e. my bp suddenly drops very low , I become naseous, dizzy, cold, sweaty, short of breath, night sweats, stomach pains weak and extremely fatigued every muscle aches) my entire body swells extensively including my neck, legs, the bottom of mystery feet fill with fluid, ankles,knees, upper right forearm ,hands ,wrists, fingers , eyes, abdomen etc. The swelling will go down but I still ALWAYS remain swollen and suffer from generalized edema and my abdomen NEVER seems to return to where it was before the episode! So I continue to gain weight! At times I look like Im getting ready to give birth to our 4th child!Does anyone else experience this????? This all started with ankle swelling! The diuretics my cardiologist gave me didnt work despite the dosages being doubled.I had an allergic reaction to lasix in June and Im now on spirnolactone which is a sulfa free, potassium sparing diuretic and hypertensive medication.While it seems to be effective in helping to manage my hypertension, it dosent seem to help eliminate the fluids.I started experiencing generalized edema after my first episode this past spring. Does anyone experience any symptoms similiar to mine????I feel alone.I am also left extremely fatigued for days after an episode and every muscle in my body aches that I can barely get out of bed.Even between episodes Im fatigued.I have always worked 12 hour days , and otherwise lived a" type A" lifestyle. Now I don't have enough energy to play tennis with my kids and I'm too tired and too dizzy to ride horses. An example of just 2 activities I can no longer enjoy doing.Its also been very difficult to manage my law practice. I cant work the hours I used to.I am so tired and when i exert myself i find the next day i can barely get my legs over the side of the bed .Every muscle in my body will ache and my entire body is swollen .The Bottom of my feet will fill with fluid that it hurts to walk on them . .My legs will get so big i cant get my pants on and my abdomen will become so bloated I cant snap.or button my pants.My feet become so swollen i cant get my shoes on and my hand and fingers become so swollen i cant open and close them. I then have to remain in bed for 3 days. Is there anyone else that is fatigued and/or swollen all of the time even between episodes??? Feeling helpless and alone in Michigan

My husband asked me to read your post. I stay in bed with swelling and pain attack in the whole body and enormous fatigue. It was like you wrote my health history. The tears flowed. I understand and really feel for you. I'm sorry but I have no energy now to write more, but later writes. Read my brief profile. I hope someone will help you with your disease. Best regards from irerolper

Dear irerolper: I hope this email finds you feeling well. Thank you so much for replying.I read your post and it was like reading my own history. It's comforting to know there is someone else out there experiencing similiar symptoms. I was wondering how often u experience episodes? Also have you ever had your blood tested for albunin and/or hemocrit during an episode? Have you been in touch with Dr Phillip Greipp of the Mayo Clinic in Rochester, MN? What medications if any are u currently on for fluid retention? For Edema?For scls? Did your doctors diagnosis you with scls by way of process of elimination or by way of blood I.e. albumin level? Do you also have hypertension? I look forward to hearing from you. Best regards, Susan

Hi Susan. Thanks for the reply. I got my diagnosis SCLS after five months, several weeks of hospitalization with samples and surveys other diagnoses were excluded. I had low Albumin - Blood concentration - MGUS and many symptoms. I got a good treatment then regular medical checks. After a while I started to leak again, and this has continued all these years. I collect my liquid often more or less. Empties about 3-6L at each Diuretica intake. Have used Burinex many years, Spironolactone did not help. I take Furix 2-4 times a week. When the swelling, pain and dizziness is most 2-3 times a month I get in bed a few hours or days. I have Cozaar for high blood pressure. Tenormin for the heart. Blood pressure and pulse varies. At my Medical surveillance check the albumin, MGUS not hemocrit. I have a new doctor that I provided all the information about Dr. Phillip Greipp and the Mayo Clinic and SCLS. We'll see what happens? My wish is to go to the Mayo Clinic, Dr. Greipp. Your post about all the swelling pain o the uncertainty of work and what you can cope with during the day. I understand how lonely and hard you have it in your illness. Wish you many links and much information in this forum. Best Regards from irerolper

Yes I have a similar situation. I start off smallish at the beginning of the day, then my size fluctuates and I get bigger and more swollen as the day progresses. However any stress or heat or exercise, I blow up all over including my face, like a balloon and lying down or a cold shower seems to help. It is also painful as the pressure makes my skin feel as though it will burst. I have emailed Dr Greipp but so far have not received an answer, but it was only a few days ago. I also get severe upper leg cramps that last many hours and make me black out and vomit with the pain. I read that athletes solve this problem by taking pickle juice and it works! It has an effect within about 30-45 seconds.So that is a great blessing. Now I have found this board, I will see my GP and have some of these tests done ( I do have some unusual results from my blood tests). Having read these posts, my symptoms are not as dramatic as other peoples' . I am so sorry for all of you that are having such a bad time.

Dear Windows: Welcome to this virtual community. May you find comfort in knowing that you are not alone in the symptoms you are experiencing. I too continue to suffer from daily generalized edema. I wake up and my eyes may be puffy and my hands, fingers, ankles and legs may be a little swollen. HOWEVER, as the day progresses, and the more I exert myself,the more swollen I become. My face becomes puffy, my legs blow up like balloons and my neck will often become so swollen that I will have difficulty swallowing and my abdomen will become so bloated I literally look like I am 9 months pregnant. I am a petite person (5ft 1") and the weight gain is extremely noticeable. I have always managed to stay in shape. If I put on a couple of pounds, I would exercise and diet and take it off.However, since this illness, I never seem to get back down to my previous pre-episode weight. It is most noticable in my abdomen which never seems to return to its' original state. So, I continue to gain weight which is the most depressing part of this whole illness for me. When my abdomen swells up I become extremely short of breath. I cannot even make it up a flight of stairs in my house. I have difficulty breathing at night and wake up gasping for air. I also have intermittent blurred vision with swelling and my asthma has worsened. A couple of months ago my eyelid became so filled with fluid that it turned purple and black and I looked as though I had a black eye! My superclavicle (I think that's what the doctors called it) is always filled with fluid. My fingers, hands , knuckles fill with fluid and it becomes painful to write or to open and close my hands or manipulate my fingers. It is painful to walk on my feet because the bottoms are filled with fluid. This is especially true when I I get out of bed in the middle of the night 3x to use the bathroom. I usually cannot feel the carpet on the stairs in my house when I am barefoot. When the swelling becomes severe, my legs become shiny and my skin feels like it is going to burst open. I often suffer tremendous foot pain. If I over exert myself i.e. push myself, work long hours, or exercise, or have a very stressful day, ....... I suffer an episode. This has been occuring on a regular basis. My bp drops to 90/58 ; 74/58 etc. I have been documenting these episodes and actually taking photos of my omron bp machine. I suffer from hypertension so my bp can literally suddenly drop from 165/100 down to 90/58. I constantly take my bp and carry my omron bp monitor with me and take it with me to the office as well. If I feel I am having an episode, i.e . swelling up even more than usual, dizzy, light headed, nauseous, sweaty, etc I take my bp. Then, If it is low, I do not take the next dose of my bp medicine (I take bp meds 3x day). I also stop what I am doing and lay down. SInce my illness, my bp has fluctuated tremendously despite being on hypertensive medications. I cannot take the routinely prescribed diuretics such as lasix or dyazide due to the fact that I am allergic to them. (I broke out in hives and my throat closed up when I took lasix and it felt like someone was sitting on my chest). I am currently taking bystolic for bp and spirinolactone which is a sulfa-free potassium sparing diuretic and hypertensive medication. I also have 3 home cooked meals a day delivered to me which contain no more than 1500 mg sodium per day.Unfortunately, I do not see a difference in my swelling. I also am extremely fatigued and after an episode, I am left so fatigued I cannot get out of bed for a few days. Every muscle in my body aches.Even my neck is stiff. I can barely get my legs over the side of the bed. It takes 2 weeks to get back to my "new normal fatigued state." This has been a huge adjustment for me because I have always been full of energy and otherwise lived a "type A lifestyle". I have learned that I cannot push myself the way that I used to. NO more working 12-14 hour days. I have cut back my hours and I am off one day a week. I am trying to listen to my body more. I have identified my triggers as STRESS (which unfortunately is difficult to avoid in my profession), overexertion, exercise, and heat. I also swell up with air travel. Like you, my symptoms are not as severe as some of the other members of this forum. I believe that I have the chronic atypical form. Also like yourself, my doctors ran every test imaginable on me from MRI's, to cat scans, to ekg's to ultrasounds, to dozens and dozens of bloods tests. Although I do have issues with my heart, thyroid and migraines, they ruled out heart, lungs, kidney, liver, allergy, adrenal gland, endicronology, neurology and rheumatology as being the CAUSE of my symptoms. I wish there was more attention paid, more research done, and hence more treatment options available for patients such as ourselves, jorismuffler, sueann, dapshot, etc. etc. and several other members of this forum whose symptoms are similiar to ours and who fortunately do not suffer from the severe form of scls like a lot of other members of this forum, but nonetheless, whose symptoms should not be ignored. Please stay well and keep us posted, Susan

Hi Susan Thanks for your long explanatory post! I sound very similar to you and in the beginning for the first few years my PB raced all over the place but is now ( after 8 years) a steady low. However all those triggers you mention which naturally put the BP up, are also my my triggers too - especially exercise and heat. I had a bad episode whilst in hospital for hip replacements last year and I was very distressed and hugely swollen and my Doc had NO idea what to do and I suggested they put me on ice so I was covered in ice for the night, windows open (9deg outside!) and in the morning I was small and better. I was shivering with cold but it worked! I work out a lot to keep myself fit and swim in the cold lake so I do not swell so much. I wish there were more atypical patients here that have chronic problems such as you and me as there has not been so much discussion on this.I am getting worse all the time. My gut instinct tells me it must be something to do with my immune system or auto immune system as I have had asthma and severe allergies all my life. The asthma suddenly stopped and the SCLS began immediately which appears too coincidental However angioedema has been well ruled out by all my specialists so I am at a loss. My sister died suddenly when I was young and as we were at sea t the time, no real cause of death was established.My parents would not discuss it sadly as they were so traumatised and they have both passed away now (of ripe old age) so there is nobody left to find out exactly what happened to her.

Dear Windows: I am sorry to hear of your losses. You raise important issues. Arturo is the expert in this community so he can correct me if I am wrong, but it is my understanding that thus far, there is no scientific research connecting a genetic link to scls.It does not appear to be inherited. In answering your other question, it is my understanding that scls is classified as an autoimmune disease. Again, Arturo and/or Dr. Greipp can further elaborate on these 2 important and interesting issues you have raised. Best, Susan

Interesting-thanks Susan. I have sent another email to Dr Greipp at his gmail address so hopefully will get a reply now.

Dear Windows: Let me add my welcome to this community! It's an honor -- and quite a coincidence -- to have 2 Kiwis as members. Here are a few comments: 1) The proper and more fruitful way to approach a senior physician (in this case, Dr. Greipp of the Mayo Clinic) is not directly but through your own medical doctor. Doctor-to-doctor conversations can get to the bottom of things quicker, and lead to changes in diagnosis and treatment. 2) There is no evidence that SCLS is hereditary, although it may be genetic. (If it were hereditary, it would be far more common!) 3) SCLS is not yet classified as an autoimmune disease, but some of us suspect that it is. 4) If you or anyone would like to read for themselves the 2 survey articles on SCLS that were published in medical journals earlier this year, summaries of which appear in the Disorder Resources section of this site, please let me know and I'll send them to you. My email is aporzeca@american.edu

STRESS, heat, air travel major triggers for me as well!!!! I do believe STRESS is common trigger for most of us!! FATIGUE!! Never goes away. Stay Positive Mary Jane

Hey we are all alive! That is the main thing. Each day at a time... I am grateful for many things

Hi .. I am new to this website & new to this diagnosis. I had three bad attacks - 2000, 2005, & 9/2010. I went to Mayo last month for a diagnosis - finally. Now I have ?? for the members who leak all the time. How do you treat te swelling ? Did u ever have life threatening episodes b4 you started leaking on a daily/weekly basis ? I started the theopiline (?) & the main side effect has been waking up @ night. I apologize for rambling, but I have alot of thoughts running thru my head. I like to Thank everyone on this website because I feel better knowing I'm not alone. You r all in my prayers !

I am new too, dfye,and I am a 'chronic' SCLS person. In fact I have just been outside gardening in the evening sun and came in due to feeling nauseous and very unwell and weak and saw myself in the bathroom mirror- unrecognisable. My face was so swollen, arms tummy, legs etc.and my eyes almost shut. It was not until I felt sick outside that I realised what was happening. I came in and had a cold shower and took some Sudamyl tablets ( about 3/4 hour ago) and I can actually feel myself "draining away" for better explanation. with a kind of pins and needles sensation.I am by no means normal yet but feeling alot better:) I will be seeing my GP this week now I am armed with more information and will try Theophylline but I used to take Amesec caps for my asthma 40 years ago and I believe this is Theophylline and it used to make me jittery and kept me awake too ,as you describe. I also take Tranexamic Acid (Cyclokapron) when I fly or when I know I am going to have stress and combined with the Sudamyl it helps a lot but keeps me awake too. I have tried to juggle meds as within a few days, my body seems to adjust to them. I had a few strange things happen before I became a chronic leaker and I honestly do no know whether or not they were related to SCLS or not. I was sent to the emergency department a few times at the hospital by ambulance as I could not stand up or walk due to a severely swollen stomach, with really severe pain. They did not do blood tests but put me on a drip and took X rays (OK)and I was discharged within 36 hours. It was not long after that that I had my first few swelling episodes. Are you an acute or chronic case? I am soooo glad I have found this site where other people are like me! I feel like a weirdo, changing shape all the time!! So you are not alone either which is nice for all of us.Do you have chronic attacks as well as your acute episodes?

It takes sometime to adjust to having slcs. I am in the hospital again, slsc, blood clots in both lungs and pneumonia. I sure wasn't excepting that when I stop by he Docs because my legs were fatigued. Be as strong as you can, and try to choose a postive attidute, it helps. Ritz

I have had the 3 acute attacks .. This Sept, I actually had 3 attacks in 2 1/2 weeks, which is why I requested going to Mayo. I was in Green Bay & they were quite honest to say they had no idea what was going on. I was very impressed with Mayo & was thrilled when they had it figured out in 2 days !! I'm slowly starting the theop & just started on 300 mg. I have been getting tired during the day, but not sure if it the medication, or that I started working FT after coming home from the hospital. I may ask to reduce my hours if it gets any worse. Day by day is the best ! I generally keep a positive attitude, but I also get frustrated with people who whine over a headache or small inconveniences of life. My boys were 3 & 5 in 2000 during my first episode. I'm glad to say they are very compassinate & caring young men towards anyone with a disability or any differences. I'm very happy to be a part of this website !!! Take care everyone !

Ritz I hope your hospital stay is over .. Thinking about you !

Yes , all the best, Ritz. I hope you are improved.

Ritz, You are in my prayers. sincerely, marilyn

Sarah , Thanks for the tip regarding ice packs.I also turned tne heat way down in the house. Kids are getting used to. But I think the pipes may freeze. My bedroom is in the 30 degree farenheit range at night and now Im not AS swollen in the morning. Only problem is its too cold for my husband now in the bedroom. Also I no longer use heat in the car either.I also cannot tolerate taking hot showers or my entire body swells.

Same here, Susan. A hot shower or worse a bath, makes me swell badly. I swim in the ice cold lake here and am the only person in the water as it is freezing but it is a good way for me to exercise and not have the swelling problem which is all over my body including my face My husband thinks I am from another planet!!