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kafie

Compression Gear?

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So, maybe you guys can help me out here...

My doc told me to just buy the cheapest set of compression socks that I can find, and I'm a little confused here, because I'm pretty sure:

A. I need at least thigh high

B. I need at least 20mmgh of pressure

I'm wondering a couple things though of my own curiosity...

Does anyone use compression for their hands/arms? Do you need the compression on the hands to stop the blood from pooling there (the most obvious place is my hands and it really hurts at times - I do use IMAK gloves, but I'm not sure it's really enough compression), or would just the arm work (from just below the shoulder to the wrist)?

Do just gloves cause a problem with the blood getting stuck around the wrist/forearm as is common with knee-high compression socks?

Is a higher compression better? Does 30-40mmgh do a better job at stopping blood pooling or preventing syncope symptoms than 20-30mmgh?

What's up with abdominal binders? Do these help relieve some of the digestive symptoms?

 

If you have any suggestions for electrolyte drinks I'd love to hear it as well. My doc told me to drink juice, and I've started to do that a little (not sure how much it's helped), but I find coconut water/milk seems to help. I'm kinda interested in the tablets and packets because I could just stuff them in my car or bag and have them always with me (rather than something I have to refrigerate after opening). I've been told they're terrible, but drinking a bit of something terrible is a small price to pay for not being dizzy.

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Hi - regarding the compression stockings: try a home medical supply store - they can measure your legs and advise you on the appropriate strength as well as the size. They really are not all that expensive. If you don't get the right ones then they will not really work. --- For drinks juice would not be my first choice since they also have a lot of sugar and not the greatest amount of electrolytes.. I drink a lot of Gatorade but coconut water sounds really great, I guess it would be healthier than Gatorade. --- I am not aware of something for pooling in the hands. Has your doc suggested anything for vasoconstriction? Are you on calcium channel blockers? They can worsen the pooling since they cause vasodilation.  

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I'm waiting to see the cardiologist, so we haven't discussed medication yet, but I'm not on anything that should effect my veins (I do use nicotine which I believe is a vasoconstricter, but honestly trying to reduce my use (I have halfed my consumption in the last few months - my endocrinologist really wants me to quit)).

I was thinking too that going to a medical supply shop might be the right thing to do. Thank you for that advice! 🙂

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You need to make sure you are measured properly for compression garments or they will not work. This is leg length, thighs, calfs and more to make sure they correctly compress your leg. I was told that you need at least thigh high in order to be effective.

The higher compression levels are harder to put on so I'd not start on the highest level compression except if you really have too. (Doctors advice)

There are cheap compression socks that aren't medically validated which I would avoid. I would start with just a couple of pairs as you might have problems with them, especially summer heat.

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I stopped using compression hose after I found out that changing my approach to salt loading improved my symptoms immensely.  For compression, I started with 20 mm Hg waist high, but I couldn't tolerate how the waistband rolled into a tube at my waist.  Plus, you have to pull them down every time you use a toilet, which means many times per day you risk putting holes in them.  I switched to 30-40 mm Hg thigh high, which you only have to mess with twice per day.  I used open toe, because I am very good at putting holes in the toes of my socks.  I found the cheap ones to feel terrible, but I have a long history of tactile hypersensitivity.  I prefer Sigvaris Eversheer.  Sigvaris soft opaque is acceptable, as is Juzo soft.  I have never used arm compression or abdominal binders, so I cannot comment on them.

For salt, I used to just salt my food.  Last year, though, I felt so terrible that I was seriously worried about continuing to work.  One day in desperation I drank a quart of Pedialyte, and I felt halfway better within minutes.  I drank a quart every day that week, and felt 100% better by the end of the week.  Pedialyte is very expensive, so I refer you to this website:  https://paleoleap.com/all-about-electrolytes/.  About halfway down there is a recipe for DIY Pedialyte, which gives you about the same amounts of glucose, sodium, and potassium for a fraction of the cost.   Apparently salt plus food is not optimal for absorption of the sodium through the intestine walls.  Liquid with glucose and salt works better for me.

 

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Does anyone have side effect of compression stockings raising your resting heart rate, or heart rate in general?

I got knee high medical compression stockings initially due to my blood clot issues. Sometimes my resting heart rate is in the 80's-90's with them on. I take them off, and somewhat later in day, it goes down to 60-70's. But other days, my HR is fine with them on. So I'm not sure if they cause this issue, or something else is causing my heart rate to be elevated.

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There are a couple of online places like brightlifedirect and ameswalker which sell cheap compression stockings.  Their customer service is very helpful if you call.  The more expensive brands like Juzo and  Jobst are more comfortable than the cheapies.  I suspect you will have to try brands and compression levels and see what works the best for you.  Everyone is so different - it is a lot of trial and error.  Also, when I was sick and needed compression I used different levels based on how I was feeling.  For dysautonomia, most people wear compression stocking on the legs which can be thigh high or waist high.  Some people experience pain from abdominal compression.   I haven't heard of too many dysautonomia patients using compression on the arms, but if that is where you are pooling then it is worth a try.  

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I realized I am pooling in the feet too, it just took longer standing for the color change to be noticeable. I spend a lot of my time on my feet walking, and that helps the blood flow so they only get red in the toes and around the edges (like the bottom and sides of my feet and ankles). After a minute of standing still they turn a beautiful shade of lavender (or a deep purple in the shower). My hands and arms pool all the way to my elbows (it looks like a sunburn). I've just got other problems with my hands and the blood pooling there puts extra pressure my joints. My feet don't hurt nearly as bad as long as I keep moving and take breaks frequently... but my hands basically have to be strapped to my head to get relief and I'm over that.

I figure I'll go with the same stockings I wore through my pregnancy (except obviously smaller) which were plenty comfortable (I think they were Jobst brand), but there doesn't seem to be much for the hands/arms. I was wondering if I could wear the lower grade compression gloves (like IMAK) I have now and add some medical grade sleeves and not just be screwing myself over by helping the blood get trapped in my hands?

Thanks for the links too! @yogini

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@kafie - has your doctor ever considered medications that cause vasoconstriction? They could very much ease your pooling and improve your tachycardia. 

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10 hours ago, Pistol said:

@kafie - has your doctor ever considered medications that cause vasoconstriction? They could very much ease your pooling and improve your tachycardia. 

I'll ask him about it when I see him. We haven't really gotten that far. Thus far he just suggested electrolytes and compression socks. The electrolytes are helping though (not with the blood pooling but with the lightheadedness).

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I am in the UK and get compression tights on prescription.  I have noticed others in different countries including the US getting compression wear on prescription so first of all see if this is an option at all for you.

I wear sigvaris magic full tights, class 2. Any tighter and I wouldn't be able to get them on. I think they help a very little, but I need every little help I can get. They are machine washable and very hardwearing. They don't tear easily like normal ladies' tights. 

For me, knee highs weren't effective at all, thigh highs kept rolling down (and I am not very mobile, so if you walk this would probably be worse.) I have heard of people buying glue and things to hold them up, but it didn't seem worth it. 

Abdominal compression alone was horrible. I felt like it was actually trapping blood down in my legs and stopping it from getting back up. The tights have graded compression which gets lighter from ankle to waist, to encourage the blood to flow in the correct direction. 

Of course, everyone's experiences and preferences are different, but this was what I found. My brand of tights (they also make stockings in various types knee thigh etc) can be ordered online without a prescription, but would work out very expensive for an item you wear daily. 

I hope you find something comfortable and affordable!

B x

 

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Hi, I also get mine perscribed, and the are made for me. Waist high. I am measured yearly for optimalfit. My insurance (The Netherlands) covers two pairs a year and they are 30 - 40 mm Hg. They are quite hard to put on, I use cleaning gloves. I wish the kind I have were available with open toe. 

They are black and look like semi opaque panty hoses. When it is hot, we recently had a heatwave with temperatures up to 38 Celcius, I probably need them most but also most inconvenient to put on and to wear.

I am considering compression leggings and I have heard that someone was recommended spanx by their docter.

Hope this helps a bit

Good luck. 

 

 

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