Reading some of these posts has me wondering about the possibility of a correlation between tight connective tissue (also called fascia) and the tendency for one person's body to leak in one area while another person may leak more in another area. I'm thinking specifically of a correlation with leak-related headaches. Fascia wraps every bone, every muscle, and every single muscle cell. It's very thin, kind of like Saran Wrap. If you've ever cut up a whole chicken, you've likely seen it covering the different pieces of meat. Veins, arteries, and lymphatic vessels have to travel through fascia to get to the cells they feed. If the fascia is tight, it constricts those vessels. I'm a massage therapist and I have a number of clients who have had chronic circulation issues in their lower legs. I have found that their fascia is extra tight in those areas, and that slow, focused massage to get the fascia to loosen up allows circulation to flow more normally. Their legs change from looking chronically bruised, with dark blue capillaries visible, and even some swelling and a few veins that look varicose, along with being cold to the touch, to their legs looking much more normal in color, less swelling, more normal body temperature. This includes a couple of clients who have been to various doctors and even had their veins assessed by vein specialists who could not find a problem with the veins themselves. Tight muscle and fascia is not something the medical community looks at much, and so are an area of health that we lowly massage therapists are actually more expert in :) Over time, the improvements last. Massage can have a lasting impact on tight connective tissue. I'm thinking specifically of those who experience a lot of headaches and even swelling in the neck along with SCLS attacks. It may be that tight connective tissue in the head and neck (or elsewhere) is contributing to fluid build up in those areas. If you can find a massage therapist who is familiar with working with fascia (techniques often called "myofascial release"), it may help relieve some of those symptoms. Of course I don't think it would change the likelihood that you will leak, but it may relieve the tendency of the fluid to build up in the head and neck, and that may reduce the amount of headache you have to suffer with. You can test yourself to see if your fascia is extra tight. Put your hand on the area you want to check. Using a light touch, move the skin back and forth. Normal fascia will allow your skin to move freely back and forth over the bones underneath it. Tight fascia will make your skin seem almost glued in place over the bones - it won't be able to move much, although it will loosen up if you keep trying to move it. There are also deeper layers of fascia connecting muscle to bone, and in between layers of muscle. All these different levels can get tight or adhered to each other. You can find different levels of tightness in different areas of the body. Dehydration also contributes to tight fascia (and often to headaches). At the very least, massage relieves stress and never causes harm when done properly, so it can't hurt to try :)

Cathy, I find this observation of yours to be interesting and possibly valuable. It could also explain why some of us have needed fasciotomies (to prevent muscle and nerve damage) and others not, or why we suffered more or less muscle and nerve damage when we were having episodes -- although of course the volume of fluids being given to us and leaking out into muscle compartments has a lot to do with it also. I'm going to pass your observation on to some of the physicians I know. Arturo

thanks, Arturo. There's also a type of massage therapy called Lymphatic Drainage that helps move interstitial fluid back into the lymphatic vessels (interstitial fluid is body fluids that are not contained within blood vessels, lymphatic vessels, or organs). Lymphatc Draninage most definitely helps reduce swelling in cases or ordinary edema. I feel like this might be helpful to anyone having an SCLS attack, because our plasma is leaking out into interstitial spaces. Getting the fluid back into the lymphatic vessels can help with the hypovolemia, theoretically, because fluid in the lymphatic system gets filtered through the cisterna chyli and then dumped back into the circulatory system through the subclavian vein. Again, just something that might help and doesn't stand much chance of doing harm. Maybe next time one of us in the hospital, they'll call a massage therapist - many hospitals now have MTs on staff :)

Hi Cathy, This discussion is so interesting. I have probable mild but chronic Capillary Leak, and suffer badly from Migraine. I have 3 days of leak and 3 days of retrieve every week. A 3 day migraine follows 36 hr after the peak of the swelling. I have also aways suffered from tight fascia, and ligaments and muscles. Physios are always shocked at how tight I am. There is constant pain from this that I have learned to live with. In addition there is no way to pinch my skin from any part of my body. It is literally glued down. I know this is not normal, as I have pinched the skin on my loved ones easily. I did previously think it was connected to being hypothyroid. I will take this information and discuss it with my experienced and open minded physio, and hopefully it will make a difference. I am interested if other members that suffer from headache/migraine also suffer from tight fascia. If any of you are reading this, can you pinch the skin off the back of your upper arm ? Many thanks Cathy for you observations Annmarie

Hello all, Your descriptions are perfectly valid and helpful. However from a communication point of view, it would be easier for us to understand if you used the term, " fascial compartment". The fascia is not very stretchable at all, and the tightness you describe is due to swelling inside the fascial compartment. Think, - a balloon blown up tensely as opposed to a flabby balloon. Now, when the compartment is under great pressure, the blood vessels entering it become compressed and cut off its blood supply. This is "compartment syndrome" and can need emergency fasciotomy to relieve the pressure. In the early stages, massage may well help greatly and prevent the need for fasciotomy, but this decision is very difficult. It can be aided with the use of ultrasound, but if delayed too far, it may result n amputation. Some 50%of attacks are associated with muscle pain which may be a reflection of this. However, the basic problem is not the tightness of the fascia, but the leakage of oedema fluid into the fascial compartment, and at this stage the leakage can only be helped with IVIG. The IVIG may work by stopping the capillary leak, or purely by osmotic suction, pulling the fluid back from the compartment or extravascular space, or both. Spare some consideration for those SCLS patients who do not leak into fascial compartments, but other areas such as brain, neck, lungs, and pericardium. Unfortunately, they cannot be helped by massage. John

Thank you, John. I've read lots of your posts and am reassured by your knowledgeable input. I really find it helpful. Sorry to say I am from the fuzzy-headed world of massage therapy, and we as a lot don't tend to use correct anatomical terminology as accurately or often as we should. I think our view on fascia in the body is probably not technically accurate, either, but it does have some conceptual merit. We are taught to think of fascia as a continuous web or network which behaves like any true network system: change in one area affects the entire system. Fascia holds patterns of tension, but it's different than typical muscle tension. It's the motor nerves that tighten up muscles, but it's the proprioceptors (nerves that sense pressure, vibration, and help you orient in 3 dimensional space) which affect the fascia. The type of massage that specifically targets fascia is very different from the typical massage that works knots out of muscles. And the type of massage that works on lymph is very different from both of those. While I would never suggest that massage should be someone's first line of defense when they are faced with a life-and-limb-threatening situation, I will say that if my IViG ever fails me and I have another attack, I will most definitely get Lymph Drainage massage *During The Prodrome Phase*. I was lucky in the attacks that I had - there was a nice, long build-up over a couple of weeks (the prodrome), which started in the lower legs, and then the arms. Whether or not Lymph Drainage would make a difference remains to be seen, but I would try it. I do believe that my limited knowledge of how to work with the lymphatic system made a difference for me in those attacks I had. And I freely admit that's just my opinion and not any kind of tested or verified treatment scenario. I also appreciate it being pointed out if I've said anything that might lead someone to put themselves in a potentially dangerous position. As a massage therapist, I have no real medical training and don't want to give the impression that I think I do. Thanks much :)

Hey Cathy, Please do not get me wrong....I am a strong supporter of massage therapy.. So much so that I routinely get remedial massage when the limb pains start. (Fortunately not as often these days). I trained her in anatomy and mentored her through college, and support her in her studies (which never stop) in China. Please never see remedial as a lesser disipline? It's just that I have spent a lifetime bridging the 'jargon gap', on the basis that understanding your condition is 80% of a cure. Most people are intelligent enough to understand the limits of medical science, as long as they understand what is going down. Keep happy John

Hi John - please help me see if I'm understanding this correctly: does "fascial compartment" refer to those areas of the body like the forearms and lower legs, where muscles are wrapped more tightly with fascia than other areas? Or is a fascial compartment any muscle, wrapped by fascia? As I understand it, compartment syndrome happens in the forearms and lower legs because of the dense tight fascia, and the bones, which are both are such strong barriers that if too much fluid builds up, it has no way to get out of the compartment. Then the pressure gets so extreme it stops circulation and the muscle tissue "dies". So the problem for SCLS patients is not that the fascia is tense- the problem is that there is too much fluid coming into the compartment, therefor relieving tension in the fascia is not going to stop compartment syndrome. That makes sense to me. But I was thinking that tension patterns in the fascia might be what forces the leaking fluid into one area rather than another......It sounds like you're saying some people don't leak into the extremities - that they leak into the head and visceral organs instead. Is that correct? I have all the deepest respect for remedial massage and would pursue it solely if I thought that my hands would be strong enough to do nothing but that for the rest of my life :) thanks so much Cathy

This is an interesting discussion. With my "episode", I had tremendous edema in my lower body. My brother suggested massage and although I only went once, it was the lymphatic massage you suggested. It was the first thing that actually facilitated the reabsorption of the fluid. The other thing that was helpful was water aerobics. The water allowed me to move my extremities more freely without so much pain and seemed to also help with reabsorption.

I too fins this" meeting of minds" from people who actually have the condition, useful. I am sure you are correct. As the capillaries leak, there is a pressure build up in the compartments, especially when it occurs in the compartments with strong deep fascia. But the fascia is not all that strong. Massage ' drains or pumps' the fluid through the tense compartment walls. It's a bit like squeezing cream cheese through a dense muslin cloth (an old fashioned analogy). That's one of the reasons deep massage may hurt.. You are building up pressure temporarily to get rid of the fluid, but when you are finished that stroke, the overall pressure is diminished. However this leakage can also take place in areas without the dense fascial compartments. My main leakage is into my lungs, which accumulate 2-3 l inside of an hour. There are others with a suggestion of cerebral oedema, and also the loose fascia of the neck. Massage is also excellent at relieving the pressure caused by other conditions, such as corked thigh, hamstring tears with bleeding into the compartment, haematomas under pressure around spinal muscle tears, and of course, gentle massage to disperse the pressure of a black eye....but only after specialist check of the eye. And this is the 'rub'.. (Sorry).. With SCLS, you would want to be sure the person is haemodynamically stable and not still in the leakage phase, therefore after physician assessment. Another point. Water aerobics will also work as the active muscles gently pump the fluid out of the compartment. It really is 'horses for courses'. (It also works on horses after training) John

I have also found that monitoring for adequate protein and fluid intake is helpful along with regular exercise. It is difficult some days because my joints usually hurt but I find that "if you don't use it, you lose it". After two falls with concussions in less than a week and bilateral neuropathy from compartment syndrome, I can't afford to lose any more. I am grateful that this community exists so we have each other to discuss the subject with. There is a certain aloneness that comes with rare diseases.

thank you so much for sharing that, janiegrrriaz (Janie? :) ) While it doesn't prove the theory will work for everyone, it gives me a lot of encouragement and hope to know lymphatic massage did seem to help someone. Just to clarify: the lymphatic massage I'm thinking of uses very light pressure to encourage fluid to move into the lymphatic vessels. It's very different from deep pressure massage, which I would hesitate to try if I had any leaking going on. Deep pressure massage encourages circulation, and might effect the capillaries in some way we wouldn't want to have happen. Was the massage you got the light pressure variety?

John am I reading that correctly? You get 2 to 3 liters of fluid in your lungs within an hour during an SCLS attack? May I ask: how did you clear it from your lungs? I constantly marvel at what people are able to endure and recover from.

Cathy... Oh yes.. A bit of work with CPAP. A sort of pulmonary massage. My inspired air is at high pressure. Instead of sucking air in, I get it blown in at high pressure. (Continuous Positive Airways Pressure). A bit like blowing bubbles through a soda, or the circular breathing of a didgeridoo player (or flute, clarinet etc.) My sats go down to 65%, and I Really have to breathe hard! My tidal volume is >1l. But I come through. As I get on top of it, the lasix helps. I need that to get the kidneys flowing again, but it is a balance between hypovolemic shock and the rest. No more than anybody else here has to go through. What amazes me is the speed of the recovery. One minute, I am working, and in a lot of pain; the next minute I can sit up on the trolley and ask for a chardonnay! lol John