Hi All, Was wondering if anybody who has SCLS manages moderately vigours exercise. I mean running around 5-10 Km. I as beause before my SLCS I was a keen marathon runner I would like to try running again despite my neuropathy in my feet. Dehydration I guess is the masin danger but would be interested in people experiences. Thanks, Kevin

Hello Kevin, I am a group fitness instructor with SCLS. I have only had one major attack, but nearly lost my life. I am on a regimine of Theophylline pills and do IVIG treatments every 3 months. It has taken me several months to build up my stamina, but I am back to teaching my spin, pilates, yoga ,and body pump classes. I have not tried running again due to the neuropothy in my feet. I also have some trouble with pilates and yoga poses.I am very vigilant about staying hydrated and have not had any troubles yet. I did get heat sickness a few weeks ago. I am finding that I am more suseptable to the heat and sun now. Luckily it has not thrown me into an attack again. I hope to continue exercising with no problems. Good luck to you and I hope you are able to get back to your running. I know how much exercise enhances my life and I do believe that my fitness is what helped me survive my SCLS attack. Cristina

Kevin and Cristina, I have been able to exercise regularly since my last attack in 2008. It took a while to regain my strength and stamina, but now I am probably in the best shape ever. I am not a runner and do not have trouble with my feet. I do have nerve damage in one leg due to one of the episodes. I cycle and the doctors told me that my condition may have prevented a worse attack or something more dramatic. Hope this helps. Robert

Thanks for the replies. Your comments are encouraging and I will start to try and build up my exercise slowly with cross training (swimming/cycling/running) and see how it goes. I also think my original fitness help me through my original bouts of illness. Cheers, Kevin

Hi All, Recently I subscribed to the community and forum. I would like to know whether there might be a relation between formerly being engaged in sport activities (endurance sports) and the vulnerability for SCLS. And because of still having a severe and rather continous exercise intolerance I would like to know if that problem is recognised by others? Maybe it will be reduced after a longer medication period (now 3 months)? Thanks Hiltjo

I always assumed that CLS did something to our bodies so that fatigue comes quickly. Some have overcome and exercise regularly. I worked out everyday until my first episode in 2005. Since then, I have had to cut back due to fatigue. I continuously try to regain a steady workout. I am also older, so that makes it hard as well. I think exercise will save you a few episodes if not keep them at bay. I am not sure if IVIG adds to the exercise fatigue. Good question for the experts. Walt

Thank for your reply. We both differ 3 years of age. I had à rather quick decline in the ability to perform any exercize because it seems to be à trigger. And still is. I'm on a regime of terbutaline and theofylline and since the start it stabilised à part of it. I don't get IVIG so for in my case that cannot be the explanation. So the question for all is: How about your tolerance to perform exercise in sports but also general living? Hiltjo

Dear Hiltjo: Welcome to our Community! You are our first patient from Holland! I hope that your therapy with T & T is successful in preventing all future episodes of SCLS, but if it is not, then insist that your doctors try putting you on a therapy based on monthly infusions of IVIG. As concerns your original question, no, there is no medical evidence that formerly being engaged in sport activities made anybody vulnerable to the onset of SCLS -- or to having episodes of SCLS, specifically. Otherwise, of course, SCLS would be far more common than it is -- there are many people who practice sports -- and we wouldn't have any SCLS patients doing sports after being diagnosed and treated, whereas in fact we do. I have personally met or corresponded with many patients, and most were not avid sportsmen/women before getting SCLS, and yet I know of a few episode-free patients on T & T and IVIG therapies who are active sportsmen (see the profiles of _rnuara_ and _claude53_, respectively). Therefore, if you are currently incapable of handling sports, it could be because you are still having more frequent but smaller-scale episodes of SCLS -- in which case, of course, your organs are not getting the oxygen that they need, which is why you feel weak. You can have your blood checked anytime you feel weak to see if you are experiencing hypotension (a temporary drop in blood pressure), hemoconcentration (a temporary increase in the concentration of red blood cells), and hypoalbuminemia (a temporary drop in the level of albumin) -- namely, to see if you are having an episode of SCLS. And if you are, then it is likely that the T & T therapy is NOT working. Incidentally, please fill out as much detail as possible on your profile page (e.g., your gender, the symptoms you experienced, the treatments you received, the hospital that treated you, any temporary or permanent injury that you suffered, etc.). The information patients provide makes it easier for us all to have answers to questions like the ones you asked.

Dear mr.Porzecanski, dear Arturo, Thank you for your welcome and long answer and comment on this issue, indeed my complaints could be generated by à long series of small attacks, which suggests à more chronic SCLS, and is also a reason why it took almost two years to come to à diagnosis. I will discuss this matter with my immunologist. I hope it will help to be able to turn to à more normal life again in future, with or without sports. And i'll try to find the button to change my profile :-) Thanks

Dear Hiltjo, I believe that there is no relationship between sport and the presence of a SCLS. Anyway the medical literature does not mention it. In my case, I practice cycling and ski mountaineering for a long time. Neither endurance nor acute stress triggered an acute capillary leak in my medical story since 2003. I think on the contrary that regular practice of a sport provides a better support throughout a resuscitation in case of an acute leak. But be careful, too much muscle promotes compartment syndrome and the risk of a neuromuscular injury in legs and arms when overloaded volumes are infused during a resuscitation. Therefore it is better to practise endurance than acute effort. Swimming is probably the best sport for balanced muscle development. In addition, drugs Terbutaline & Theophyllin have known side effects on the cardiovascular and muscular systems. You must be sure that these two drugs are not overdosed. Claude Pfefferlé

Dear Claude, Thank you for answering. Like you I was used to cycle à lot , but à one week cycling trip through the Alpes and France induced swelling at least 8 kg (retrospectively it did before too sometimes, but less extreme) after which experience, all kind of fysical exercise progressively brought up more problems, for almost two years, so I became home-bound. Primary cardiomyopathy has been ruled out thoroughly, as were all other likely diagnoses. It seems that any kind of ( even simple) exercise triggers, as cold does as well, symptoms starting mostly 1 1/2 day later on, the pattern is suggesting à rather chronic persisting SCLS. Indeed it is different from à lot of other stories and therefore i wondered about exercise tolerance. Your story and others, make me believe it is possible to cycle again in future. Since T&T was started 3 months ago, when diagnosis was set, I regained already à lot as measuring QOL, but it is still on à basic level measuring eg walking distance. Hiltjo