Compression Garments

The abdominal binder I got is a wrap that is stretchy and joins using velcro. It is MUCH easier to get on than the socks or leggings which are a real pain.

I used it when outside today, by just wrapping it round my indoor clothing, then adding my coat over the top. Worked just as well.

 

Reading this thread highlights how important it is for access to forums to share information like this; to develop a collective repository of the science, of what products are available and of different people’s experiences, good and bad.

Ideally specialist ME services would provide a mechanism to gather and share such information, to develop experience and expertise, and to suggest useful research projects. Unfortunately when we look at such as the UK specialist services, they have just blindly focused on GET/CBT and failed to become centres of excellence.

If a specialist service was providing practical support for orthostatic intolerance would this come under the role of a nurse, an OT or a physio, or would anyone of these as a specialist key worker be appropriate?

 

Absolutely Peter.

And if they could also collate enough such stories that the list could be used as the basis for asking for funding to test the ideas in a trial. We can dream.

 

I bought the compression tights, but i cant tolerate the intense sensory input of the squeezing on the whole leg & hip/tummy area. They're not very tight & i am not feeling at all well today, so i will try again on a better day, but it just feels like sensory overload at the moment, no benefit from the compression. - i only mention this here for info for anyone who is very sensory sensitive - as i am. The belt doesnt seem to have the same impact, am waiting for the socks so will feedback here when they arrive.

It may be that they are too large though & thats why i felt only the compression & not the benefit ??? I chose the size based on waist measurement, but i do have issues as i have pretty much flat hips/bum so normal trousers are always either too baggy on hips or too tight on waist, & these were very easy to get on, no more difficult than a pair of thick fleece leggings, so i'm guessing they maybe too big

 

My PoTS doctor is writing to my GP to tell them to prescribe compression tights (not stockings). So it has to go up to my waist. I had a few questions for those of you who know more about compression:

- did your GP prescribe compression garments or do they get confused and say they can’t do it? They said some GPs say that so then I might have to buy my own. I’d rather get it on the NHS if I can! Edit: they seem really expensive to buy!

- does wearing the garments, irritate your skin and cause rashes or problems? Because it doesn’t let air through for the skin to breathe properly? And how long do you wear them for, before taking them off?

-how often do you wear them, is it meant to be every day?

- also I see above some people struggling with the sensory input. Is there anything I can do to mitigate that!? (I’ve been told to wear grade 2 stockings, not sure what that means).

 

I can't answer very comprehensively, @lunarainbows, but I'll have a go.

Under the guidelines, my GP can only prescribe if there's evidence of venous incompetence, but each clinical commissioning group may be different. I started out by finding someone on eBay who I think was claiming them on a free prescription and then auctioning them. That gave me two batches of three pairs for less than £30, which was a great start, especially as they last ages. I gradually added a few more at the commercial price of about £13 a pair for the stockings I wear.

Only silicone hold-ups aggravate my skin, which won't apply to waist-high tights anyway. I have quite irritable, eczema-prone skin, but no problems with the stocking themselves. I just wear them until they make my legs ache, then take them off. I often get through most of the day, but not all evening as well.

Bearing in mind that I'm much less severely-affected than you, and don't have POTs...I only wear them when I'm having a bad patch with OI and dizziness. I'll often go weeks and even months without them if I'm having a decent run.

I'm autistic and don't have sensory problems with stockings, but this is probably a very individual thing—I would have a problem with something that was tight on my midriff. As I haven't been prescribed my stockings by a specialist I only wear Class 1, which is less tight.

I wear compression shorts that are really designed to hold stoma bags in place, so they're not nearly as tight; these are fine, and do help a bit with OI. They're probably no use for more severe symptoms, and to be honest 40% of my reason for wearing them is that I'm absurdly long in the body, and get freezing gaps between my trousers and tops when I'm sitting down! They come up almost to where my bra would be if I wore one, so no more chilled kidneys. (The other 60% of the reason is that I have a painful fat disorder, and light compression reduces the pain nicely.)

Finally, you may find all-in-one tights difficult to get on and off, specially for loo visits. If it were me, and if the right garments were available, I'd much prefer a stockings-and-cycle-shorts combo. I suppose they might make tights with an open gusset, though, so you can wear knickers on top of them instead of underneath? That would make life a lot easier.

 

There are also various clever devices for helping you get the darned things on and off (they are really tight, and not very stretchy) which I believe you can also get on prescription/the NHS. I was talking to the inventor of one of them a few years back, but I'm not sure I still have the details.

 

Do you usually use the medium level support or the light support, for the Comfizz? The company looks good as the garments do generally seem quite comfortable.
And when you say cycle style shorts I’m guessing you mean the boxers?

https://comfizz.com/collections/light-support/products/comfizz-boxers-level-1-support-unisex

 

yes! I found this selection of products for putting on / taking off compression garments easily, I might get one of them when I buy the stockings:

https://www.mediuk.co.uk/shop/product-categories/accessories/donning-doffing.html

 

I was given something similar to use to get stockings on, but its muchwider than my leg so it was more difficult for me to get the stocking onto the device, than onto my leg! i didnt have the hand strength to stretch the thing that wide, it was very irritating/frustrating trying to hold it & pull the stcocking onto it. But if you got someone else (healthy)to put the garment on the device for you i sure it be great

 

Me again.. a few people on this thread have written that they’ve tried stockings/ tights / socks /leggings etc. Have any of you been tested beforehand (by measuring blood pressure at the ankles and comparing it to the arms), apparently this is something they need to do to check your blood flow is ok in your legs beforehand, before allowing you to wear stockings? It seems GP surgeries can do this?

I also read on the website for stocking, that peripheral nerve disease is a contraindication to wearing these compression garments. I think most people here have nerve issues too? Doesn’t everyone with ME have nerve problems? I have neuropathy.

I haven’t seen this any of this mentioned before but saw it come up today in an online PoTS group so it made me pause. Has anyone dealt with this before, and if not, how come you didn’t? it worries me as it may not be safe otherwise.

 

@lunarainbows - I was prescribed compression garments at hospital for lymphoedema and lipoedema.

Firstly I had prescribed by the hospital up to the waist tights for about a two to three year period. My blood pressure at ankle was never measured but each leg was separately measured and marks drawn on the leg at about one inch intervals. The tights were made y Haddenhams to fit my legs and arrived in the post after about a 3 week interval.

They were hard to put on initially but I found a technique which eventually worked. It took up a lot of strength and energy and eventually the joints at the base of my thumb crumbled from arthritis. I didn't wear them each day because I am in bed for several days of the week, but tried to wear them when out of bed. They were not prescribed for orthostatic reasons but to try and prevent the worsening of lipolymphadema. I wouldn't have had the energy to put them on each day. I could feel pronounced compression overall.

I now have to have up to the knee compression socks applied using an appliance whereby the sock is pulled over ad then my foot inserted. Again I try to use them when up out of bed for the day. They are measured at the hospital twice a year by what are called garment therapists.

I don't have neuropathy but a recent appointment for orthostatic problems has recommended wearing compression and I have bought an abdominal binder from Amazon. I can't be upright too often. I don't have sensory problems from wearing the socks but the binder isn't too comfortable.

edit: I have just noticed your question about rashes. No - I don't suffer from rashes under the garment but the therapists do encourage good skin care, moisturising regularly. I use a light moisturiser as often as remember, fenjal from Amazon,

 

Don't remember having this done. (And I definitely didn't get custom-made socks. I wouldn't have minded so much paying for those. But my reference to having to pay one NHS prescription charge per sock was definitely for off-the-shelf ones)

 

Sorry, I missed this as I'm away at the moment. These are the ones I have:

https://comfizz.com/collections/light-support/products/comfizz-lymphedema-boxers-knee-length-unisex

They're starting to sell out of them, unfortunately! They've been on special offer for a long while, so I'm thinking they may just be getting rid of the stock they have.

I had the pulses checked in my feet during my lipoedema diagnosis, and they said I have no sign of peripheral artery disease—all throbbing away beautifully, apparently, and no cold spots anywhere to indicate poor blood flow. My GP was happy for me to wear Type 1 compression without any particular tests, but then again I am ambulant (after a fashion, anyway). I suppose it could be different if you're not, or you need stronger compression?

 

Thank you very much @Binkie4 , @Wits_End and @Kitty for your help. Just thought I would update. Unfortunately it looks like I’m having some of the same problems as @JemPD with the sensory issues

Before trying the stockings, I decided to try the leggings / tights as that’s what I had been recommended. I bought these: TLC sport leggings as someone mentioned them on a PoTS group as being recommended by the doctor. They are comfier than tights. But, as Kitty had warned, tights / leggings are incredibly difficult to take off and on, and since I’d be using them when going outside mostly & hospital appts etc, it would be impossible to use the toilet in them. I actually couldn’t pull them up at all - I didn’t have the strength to do it, and neither did my mum. I will return them. But for people who usually use compression tights, these may be a more comfortable alternative (ie the material shouldn’t make you sweat and feel uncomfortably hot etc).

I also got the class 2 thigh high stockings. and class 1 but they haven’t been dispatched yet as out of stock. So I tried the class 2.

I have quite severe neuropathy on my ankle, foot and up my calf on my right leg, so found it too painful to even get them on that leg. I managed to get it on my left leg but it caused a lot of exertion for both me, and my mum, because of weakness (I didn’t buy any of the donning aids as you need to sit up for them, but I need to put them on when reclined in bed). Once it was on, I found the sensation very difficult - not only pain but an odd sort of sensation, which maybe due to the nerves / neuropathy / allodynia / sensory issues. So I took it off. we were having to fight to try to take it off as well - I couldn’t use the “doffing aid” as the plastic of it caused too much pain against my leg. I would only really use these when going outside the home, but the exertion of it to take on and off before and after appts would be too much for me at the moment, especially coupled with the exertion of appts itself! I also don’t think I’d tolerate the sensation as found it too uncomfortable.

So for now I’m putting these stockings aside, and maybe will try them again if I get a bit better & neuropathy reduces, or if I start walking around more. The class 1 haven’t arrived yet, but I will give them a try when they do. And if that works out, then I’ll get cycle shorts to go with it. Atm the clothes I wear are very soft and easy to pull off and on, so I’d need something like that.

I think maybe the doctor who suggested compression to me wasn’t aware of my weird medical history (although they were very helpful). My usual PoTS doctor didn’t suggest compression to me, only meds - but the person who spoke to me last time was part of their team but not my usual doctor. I think I’ll explain about my problems with sensory issues to them when I next speak to them & see if they suggest any alternatives. I guess I’m not really a typical PoTS patient with my sensory / ME-symptoms & neuropathy. I will update later on class 1 if that is successful!