To elevate or not to elevate , that is the question ? - ( at least Mike and scanfield want to know)

Ok , this answer comes from my experience as a physio and a patient with EM .As usual not much research out there that is very specific to us, so I am trying to apply things I know as a physio and postulate how they may apply.

If we think about what happens with flares ,then the why elevate begins to make sense. In em nerves appear to over react - in particular to heat but at times , strangely ,also to cold. In response to heat there is a huge , completely over the top signal sent to the blood vessels that the part urgently needs cooling . The body allows a vasodilation response so that lots of blood can flow into the area that is perceived as overheating. This is of course the correct mechanism to prevent local overheating i.e. send a rush of blood to sweep away the heat.But with em the nerves don’t react normally,and the blood just keeps on rushing in,until the veins cant sweep it away, and what was an initial response to heat becomes HEAT itself . ALL THAT TRAPPED BLOOD PULSING AWAY - ITS PAINFUL( thinking that somehow I’m preaching to the choir about now)

I have also found that just normal sitting can also lead to a lovely deep purple,red flare - as does standing for any period . I think that this again is the inability of the circulation to maintain vasomotor tone.As Dr Cohen notes vasomotor tone is linked to circadian rhythms and tends to be higher in the morning and lower at night . This explains perfectly why many of us find standing easier in the morning and worse at night ,or indeed why we experience more flares at night . It seems that our nervous systems have trouble maintaining correct vascular tone . When tone is lost the blood vessels flop open - not really ,but they do widen , in other words the dread vasodilation that leads to a flare.
In sitting or standing gravity is acting against us ,especially if vasomotor tone is disordered. Blood pools easily in these positions. When you walk the calf muscles act as a pump to assist circulation and help blood back to

The unfortunate side effect of this rampant vasodilation is more blood pooling in the limb - it feels like horrible pressure and it is. It is enough to cause physical distention of vessels and exudate to leak into surrounding tissues. This is why after a flare or lots of walking your feet may be swollen.

FOR SOME THIS SWELLING IS SIGNIFICANT AND PAINFUL IN ITSELF !! When the flare is over or in the morning some patients may hobble around in dreadful discomfort but no flare, just residual swelling under pads of feet or ankles ,stretching tissues in the foot and causing pain. Feet and hands are delicate jointed structures with little room to accommodate swelling - they ache ; the joints stiffen if the inflammatory exudate remains . This is why physios cant stand to see swelling and this is were elevation can help !!

Elevation of feet or hands can stop a flare by using gravity to get pooled blood out of the limb . I have heard some people find pain on elevation and am now just addressing the more typical EM result of relief. I can not sit for long with my feet down - but find if I meet friends in the morning I can manage awhile - I ALSO TEND TO MOVE MY FEET A LOT.I move my feet from heel to toe on the floor and wriggle my toes busily under the table but, hey it lets me sit longer.
(will upload this for a start-because i need a break) Continued - this is taking ages , please read part 1 first!

So we have gotten to the bit about about elevating , at last I hear the collective sigh. Most em patients find elevation works simply by countering the effects of gravity on decreased vasomotor tone . Raising the feet allows the pooled blood to circulate back toward the heart . This helps relieve the feeling of heat and pressure - allowing sensation to return toward normal . If the flare hasn’t completely faded, or its later in the day ,or if your Em is particularly bad then lowering your feet will cause the blood to rush back and many patients end up back to square one.

If you get good relief from what you are doing -keep going ,but if you find you need to elevate most of the day , I would like you to consider this theory.I think that the body adjusts very quickly to new norms , so that if continual elevation happens ,then perhaps loss of vasomotor tone is exacerbated.Just as a muscle weakens when it is not used . Your legs are used to being exposed to changes in blood flow and pressure almost constantly in a normal day , elevation exposes them to only one state. My concern is that it will ultimately impossible to lower your legs unless they are exposed to changes. Most of you are probably moving in and out of leg elevation through the day and thats good .

Those patients who are stuck elevating and find lowering very painful , I sympathise as you are probably the worst affected. But you can try to retrain a bit, especially if you haven’t been doing this for too long . If you need to raise your legs above 90degrees then just try going from whatever elevation you are using and return one leg at a time to horizontal. REPEAT THIS LIKE AN EXERCISE . Alternate legs up to usual height and down to 90 degrees , move your ankles up and down firmly to encourage the calf pump to assist circulation .Initially you will be very aware of blood rush , try not to panic - pump those ankles up and down. Do this as often as you can tolerate maybe 20 times every 30min . Once you feel confident and hey ,may take weeks, leave your legs at 90 degrees as long as you are able - try and increase the time . Use your foot and ankle exercise once discomfort creeps in to see if you can increase your time with legs lower. Repeat frequently eg every 30min.

For those of you who use a recliner ( at approx 90 degees)- don’t get too comfortable.Getting up and down frequently will encourage vasomotor tone . While you recline do some foot and ankle movements - pump up and down , circle feet - you don’t get to sit for hours - scrunch your toes down , move them back . Keep your circulation going as you sit - you my even find it REDUCES A FLARE MORE QUICKLY.For those with difficulty lowering feet to the floor ,do your foot and ankle exercises as you practice lowering each leg to the floor in turn. DO this frequently as an activity and try to build up time spent with legs down.

My general rule is not to elevate for more than 30min without some foot and ankle exercise or more than an hour without getting up for a short walk - I find a SIGNIFICANT increase in pain otherwise. I DO RETURN TO ELEVATING after my little stretch and walk(just a few steps around the house even)

Elevation is vital to reduce swelling but more about that another day.
I think its almost impossible to manage EM without elevation ,but just balance it with as much or as little activity as possible ,so that vascular tone is maintained . This is not going to make EM go away - it is a way to manage it.

If you are attempting to increase time with your legs down I am sure you can succeed even if its baby steps to start with - good luck

Please ask any questions and I will do my best to answer -Tizzy

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Wow that explains so much and is identical to my symptoms. I just cried to personnel at work that I cannot stand in one spot and work. (I shouldn't be working at all, sadly) Although being on my feet is bad enough, if I walk the pain lessons. Standing in one spot is excruciating. I constantly move my feet because of the pain, and lift my legs up into my chair when I'm sitting to stop the discomfort from them hanging down. Also after standing, when I sit, it's like my feet explode into pain, and then the only way to get relief is to remove my shoes and socks. It's like the nerves are irritated and are screaming in pain.

I know this is an old post but I hope you see it. I have noticed my feet turn reddish/pinkish when I'm sitting and I don't have PAD (peripheral arterial disease). I've been foam rolling to see if it helps at all because I do have some sort of muscle thing going on, and wonder if it could affect the nerves or blood vessels.