Compression Garments

Mod note: A number of posts have been moved from a useful study on this subject:
Compression Garment Reduces Orthostatic Tachycardia and Symptoms in Patients With [POTS], 2021, Bourne et al



This is very interesting. I use compression wear, and swear it helps keep me functioning longer.

Mostly I’ve just been using the socks, but after reading this last week, I dug out my compression leggings again (they come up quite high over my belly too) and used them at an event over this past weekend.

So, I do agility with my dogs. I don’t run, but I put in a load of effort for the 45 seconds or so we are in the ring together.

I am almost always light-headed as I exit, and I usually wobble a bit before plonking into a deckchair that I leave by the exit. After 5 or 10 mins with my head down, I start to feel back my normal again, though my heart rate takes longer to steady. (Friends know to leave me in peace during this time & my dogs just wait with me. )

I’ve no doubt that this is the biggest risk I take with ME, but remarkably I seem to manage this sort of event better than social situations, where I can crash out quite fast, and take longer to come round, and have more PEM afterwards. Why is that? Who knows!.

Perhaps it is the very short duration of this effort, and the various mitigations I take that help me to cope? So here’s what I think helps:
- compression socks
- compression leggings (and yes, these were an improvement over the socks only, though they are icky uncomfortable to wear all day!)
- electrolyte drinks
- coffee
- I don’t eat before competing. (I’ve tested eating/not eating & definitely the latter is better for me.)
- earplugs - worn all day to reduce the background noise of dogs etc
- hat to reduce effect of light
- I socialise very little, and rest up in our camper van between rounds.
- I take planned rest in the days before/after (my husband always does all the dog-walking)
- ibuprofen taken on the day- I think it helps to reduce PEM later (which is currently fairly well managed )

I guess I’m a bit mad doing this, but it was the first thing I wanted to do once I could walk about some more after my improvements in 2016. I have been training & competing since then.

It is what makes my heart sing:

https://www.youtube.com/watch?v=dN6pXmiI368

PS Two clips here 1st one of Finn my older dog (he’s the one who cuddled up to me during my worst times prior to 2016) and then the wild child Bean (who actually won his class with this round ).

 

Yup… me too. Even have our camper van rigged up so that I can elevate my head. It’s also useful for heart-burn, so I did this through my pregnancies too, long before ME hit.

 

There are things that make life worth living even if we are sick. I am glad you have found ways to make it possible.

 

Thank you! It’s weird, I’m almost embarrassed to admit this is what I do with my spoons, because in many other ways I’m fairly limited.

The compression aspect is interesting though. I think it also helps recovery.

Also I’ve seen Workwell talk about short duration effort. Which holds true here as I find I’m better when I don’t exceed 50s in the ring.

 

I was actually invited to participate in this study and i declined, because the trip alone would have cost me a lot and i didn’t feel it was worth the investment. Compression stockings are not acceptable treatments for me due to being hard to install and uninstall. And then you have to wash them. And then it's way too hot.

 

I agree @Milo they are hard to get on and off, and are not in any way comfortable. And at an earlier point in my illness I could not have tolerated taking them on and off [Edited to add “easily” - I probably “could” but wouldn’t have thought the effort worthwhile ]

Though for my one specific use, I’ll take their ickiness. I sometimes wear just the knee-socks if I am to be out, but I do not use compression wear on a day to day basis.

Compression is a crutch to help, but I wouldn’t see them as a treatment.

 

Yeah exactly, if i needed extra oomph to get me through a special day, i would wear them. These days are far apart, especially with the COVID situation which is not over.

 

I can't tolerate full length trousers most of the time, let alone lower body compression gear. I wear shorts for most of the year and only light trousers in the winter - overheat very easily especially when upright. Something that's well recognised with the hyperadrenergic leaning POTs patients.

Abdominal compression doesn't bother me in the same way though and this study suggests its more effective than lower body compression alone

 

Does anyone know of a good place to shop for this kind of compression gear? Thanks.

 

I wonder if corsets might have started out as medical treatment for POTS (before becoming fashionable). I read that corsets were causing women to faint but maybe that's a misinterpretation and the women were wearing corsets because it helped with orthostatic intolerance which was the true cause of the fainting.

 

Amazon have a variety available, search term "abdominal binder".

I didn't want to spend too much on a trial so went for a £12 "NeoPhysio" brand. They only last a few months before the stitches start giving up though - will go for something a bit better next time.

 

They are apparently available on the NHS but I was advised by consultants that GPs struggle to find them on the system, often easier to just buy commercially.

 

Thanks very much.

 

Those abdominal binders are interesting. Thanks @Ryan31337 - I think one of these might be good for me. I like the idea that I could more easily remove it when not required. Leggings & socks are really items you really only want to apply ONCE in the day, so once you’re wearing them that’s it til you’re done.

 

Corsets started as a way of supporting the bust and keeping in bulges but they compressed the lungs so it was impossible to take a deep breath. Then women wore them from a teenager to compress the bottom of the ribs to have the fashionable tiny waist.

I wore stockings as a young teenager before tights came out and a girdle was really useful. The suspender was uncomfortable as a bottom layer but fell down if it was on top so being sandwiched by a panty girdle saved disaster. Tights were also prone to droop so the same system added security especially with the miniscule skirts we wore

It probably saved me from a lot of POTS symptoms too so it was win, win

 

Sounds like you may be similar to my wife @Keela Too. We have a lovely dog, and my wife does something similar with her. My wife cannot run nor can she walk as fast as would be helpful, but she gets a real buzz from it. It is also clear that her waning energy has another problem, trying to think ahead of our dog, which is important, but challenging even for a fit person.

More generally, we have realised that my wife can potter along doing stuff for quite a long time - hours sometimes - but only if what she is doing involves short breaks, even if just very short but lots of them. So constant walking soon becomes unsustainable, but if stopping often to take photos, then can go further and longer. Or doing her gardening, which is a real passion for her - people who don't understand would just see someone beavering away in their garden for quite a long time. In reality the workflow of gardening, by its nature, includes short low-energy breaks between the higher energy bits, and can be tailored accordingly anyway. She invariably pays for it later, but knows the trade-off and is the choice she makes.

I'm sure that when ME/CFS is better understood, there will be a mode identified for some where short/frequent energy recharge periods help maintain a modest but viable average power availability that allows such an activity pattern.

 

Compression and coffee was a game changer for me. They took me from not being able to be upright for more than 5 min to being able to putter around all day with rests.

I tried a cheap pair of drugstore tights at first. Gave my legs energy and cleared much of the brain fog but made my arms feel very heavy to move. Eventually I found compression socks were good for the legs, compression on the abdomen cleared the brain fog but compression on the thighs is what made the arms heavy and hard to lift.

One thing I did find was it did take a while to find the right fit and compression. Some items are expensive, but ultimately the best fit seemed to be a cheap pair of socks I found at the drug store as opposed to the high compression and hard to get on socks found elsewhere.

 

Yes! I have this issue too. I’m hoping a bit more compression will help that too. I’ve an abdominal thingy supposed to arrive today.

 

I’ll bear that in mind and keep experimenting.