Compression Sensitivity

Anonymous · March 2014

For those of you who have this, other than trial and error by
changing garments, how did you come to the conclusion it was compression
sensitivity. Are there particular symptoms you had or is there a
pattern that shows for those who have this?

At my recent LEist appt I very briefly touched on Compression Sensitivity (time was short) as Ive had issues with my last Jobst right from the get go which is a very coarse material. Basically its making my arm worse with swelling around the elbow and more recently wrist, then about a week ago I had increasing truncal pain for 2 hours prior to ditching the sleeve and doing MLD. The pain disappeared completely after another 2 hours. Its only about 4-5mths old and has totally given out at the wrist with gaping wrinkles and substantially shrunken lengthways. Id been measured by a competent professional for this garment.

Im confused because on the one hand I was given the more coarse material for "more compression" and now from my understanding of what was said, higher compression is not necessarily equated with more coarse material. Im trying to figure out where compression sensitivity fits into all this and..... how is a sleeve actually graded for compression?

Kicks · March 2014

For me, it was almost immediate that the compression was wrong. I got my garments from my LE Guy, put them on and drove 35 miles to my rads appt. By the time I got there, hand had more than doubled in size. I honestly do not remember what the rest of arm did as hand was so drastic and easy to see. I tried to get ahold of my Guy but he was with a patient but the Rads RN did get him and I was told to take off the garments (already had) and to wrap when I got home. By the time I got home the swelling had gone down considerably on it's own. Saw him the next day, garments were sent back and new ones ordered in lightest compression. Basically his theory was with heavy being so bad, we'd go with lightest and IF that didn't work we'd go to the middle. That was a bit over 4 yrs ago and light compression still works great for me.

According to what I'm told - garments should be replaced every 2 - 3 months if used often/wore daily. I get 2 new sets every 6 mths. AND yes they do loose some compression as time goes on. I keep my older ones for use with doing 'messy' stuff so to not stain/ruin my newer ones but definately with time they have to be done away with as they just 'get tired'. IF you garments are 5 mths old - it may not be too much compression but that you are getting much lesser compression than you need that is contributating to swelling.

My garments are custom as I do not fit into any OTS measurements. My hands are somewhat 'webbed' but never realized it til needing gloves, arms are LONG for 'size' (always knew my legs were longer than they should be for my height but had never realized arms were also). There are 'pockets' that can be included on your garments that there are pads made to fit in IF you need extra compression at certian areas. I have the 'pocket' put on my gloves, not because I use the pads (which I don't) but because it feels a bit more 'stable' without changing the compression level.

I don't deal with trunk LE so no ideas there.

We are all different - just my thoughts/experiences.

Anonymous · March 2014

Thanks for your input.

Forgot to mention, my BC side Jobst is custom. I was instructed to wear garments all day from this time last year. Right now I have on my last "retired" softer material old Jobst (which I wore for a year) and its doing a far better job (not perfect) than the latest Jobst ever did. Its been on for about 6hrs, and theres less of a protruding lump around the elbow area as usual.

I wear OTC Juzo on prophy side and that seems fine. My LEist has always said garments should last 6 months with proper care but I'll look on the doco again. In NZ BTW my sleeve is about $300 and glove the same. I get one each funded per year. Im prepared to pay for another myself, but not if its gonna give me grief. I want to find out what works before I shell out, and compression sensitivity has sure come up on my drawing board.

Binney4 · March 2014

Musical, what a mess! I'm so sorry you're struggling with this.

If your sleeve has shrunk in length, then it's now a bad fit. I've never had that happen, but it sure can't be helping your arm any. Maybe check out the laundering instructions and see if you've been following them, and if so, I sure wouldn't want to order the same kind again.

My compression sensitivity results in rebound swelling when I remove a garment with compression that's too high for me. I also have had problems with my fingertips turning shades of blue, red or purple, and with painful truncal swelling when the compression at the top of the sleeve is too firm. Here's a quote from the "Proper Fitting" page at StepUp-SpeakOut:

The fabric used in your garment may be soft (like Juzo's "Varian Soft") or sturdy (like Jobst's "Elvarex"), or somewhere in between. It may feel flexible or stiff, smooth or rough. All these factors add to your sense of the fit of your garment, and to its effectiveness for you as well. An experienced fitter takes fabric choice into consideration in order to provide you with the garment best suited to your specific needs. A compression sensitive person may need a softer fabric to prevent her fingertips from turning an unhealthy shade of purple, while a person who tends to develop fibrosis easily may do better with a firm and sturdy fabric –even if they both require the same compression level

(Here's the whole section about compression levels:)
http://www.stepup-speakout.org/proper_fitting_of_l...

I don't think it's so much a matter of the coarseness of the fabric as the amount of containment. I can't wear very many brands successfully--too stiff/thick/heavy a fabric just makes me swell more. I use custom Gottfried garments (with an extra-soft fabric lining the entire elbow area to prevent chafing) and that works for me.

My garments go the full 6 months before I need to replace them, and even then I can still use them at times. We're all different, so unfortunately experimentation really is the route most of us have had to take. I'm just grateful there are so many choices available to us--didn't used to be that way.

Do let us know what you discover. Gentle hugs,
Binney

Anonymous · March 2014

OK been back to stepup for a refresher. Thx Binney as always for weighing in. I knew you were C Sens. Im encouraged that you've never had shrinkage. It means either Ive been doing something wrong (very likely) or its just par for the course for the particular material (Elvarex) Jobst used ....OR BOTH! In any case it means there's options. Iv'e been fighting with this instability for a year. Grrrr.

So... just looked at the instructions on Jobst and it says:

- wash if at all possible every day but at least every other day. - Room for improvement on my part.

- Wash in liquid soap in warm water rinse well. - I wear rubber gloves as I hand wash with a very mild soap and rinse well. Sometimes Im tired and confess to guessing a little with the water temp coz I can't be bothered wrestling with getting gloves on less than bone dry hands.

- roll up in towel to get excess water out - YAY I do something right!

- No direct sunlight - put my garments in the hotwater cupboard but never near direct heat. It just gently airs things out overnight.

- dont bring garment into contact with greasy oils etc unless reco'd by Jobst -

- Shelf life - WOW didnt know this but "serial products" have a maximum storage of 36 months. Made to measure have no expiry date but are intended for immediate use. Both have a useful life of not more than 6 months.

Very interesting about your rebound swelling Binney. Strangely once my fitter wrestled my sleeve on for the first time, other than the usual discomfort at the inside elbow area, I was OK with the firmness of the sleeve. I expected that the red mark would disappear as usual after the break in period but not in this case.

Kicks it looks like your case was so cut and dried it left you in no doubt. Pleased that worked out for you.

Im so up in the air and confused about what my LE is up to its like holding a slippery eel. For the 1st time this a.m. after getting up I noticed my ulna was slightly more rounded than the other and slight swelling at the wrist. Could be a one off on how I slept. See what happens tonight.

Binney4 · March 2014

Musical, I was going to an NLN conference a few years back, where all the garment makers have booths and show their wares, and because we'd had such a struggle to deal with my compression sensitivity, my therapist said, "YOU shouldn't even be in the same room as an Elvarex!" Obviously that's not true for everyone, but I can't handle fabrics with that kind of "containment" factor.

As per your run-down of the care instructions, I hate to bring this up about rolling it up in a towel, but it all depends on what you do with it when it's rolled up in the towel--twisting it is a no-no (sigh!) You can lay it on a flat surface and PRESS the moisture out a bit, but compression garments don't take well to wringing. Fussy, stupid things--grrrr!

There's hope! Hang in there--we have choices, thank goodness, and you'll find the right one for you.

Onward!
Binney

hugz4u · March 2014

Ok so I do roll mine up in a towel and then step on to absorb as much water as I can. Sounds strange and I hope I am not wrecking it.

As for compression sensitive, now you have me wondering because with my Medi 95 or Medi espirt sometimes I get a bit blue and cold fingered if I don't put big fat sharpie markers into each finger which my glove is wet.

I am having a custom glove and sleeve redone and we shall see what happens. Oh …I was told after the 2nd making there are no returns. Is that true? I had Elvarex which I finally decided squeezed the heck out of my arm so I am getting their next brand that is more friendly.

Anonymous · March 2014

Binney its so great that you have something that works. There's no better story to this than that!

Ok so I do roll mine up in a towel and then step on to absorb as much
water as I can. Sounds strange and I hope I am not wrecking it.

Same here Hugz to a T.... but please speak up anyone if you think this does harm them. To be exact, after I stand on the "sausage" resulting in it being flattened I then 1/2 turn it (if that makes sense) and stand on it again. I imagine there would be no "stretching" as I stand directly on it and don't twist with my feet or do anything other "tread water". Its a very good point Binney for those who might overlook this, but thankfully I've never twisted lol though its VERY tempting....

The other day our HW cylinder packed a sad and was totally replaced. Because the insulation is so much more effective these days on cylinders, you dont get the same airing capability and Im gonna have to think about how to safely dry my garments overnight. This a.m. I noticed they were ever so slightly damp and its not even winter yet. Back to the drawing board on that one.

My fingers too can go blue, motley, and the like, at the drop of a hat....more so in winter. My new glove did this for a while, and LEist told me if you push the blue/red fingers and the colour doesn't return reasonably quickly, just beware you could be blocking the circulation too much. The sharpie trick is good one if needed.

Compression Sensitivity

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