Many of us with lymphoedema and lipoedema have spent a small fortune on gadgets that are purported to help or even cure our conditions. We’re frequently sucked into the lure and promise of these bits and bobs because we remain hopeful that one day soon, we will find a cure or at least some help.
I’ve experienced lymphoedema for more than 30 years now, and because I remain hopeful, you can imagine the amount of money I’ve spent on all the things. It has cost a small fortune, and sometimes I wonder if I’d gotten surgery all those years ago would I be in a better position now both health-wise and financially? I guess we’ll never know but at least I can narrow things down for you here, and I hope it’s helpful for you to see.
I decided not to include here all the things I purchased but don’t use anymore – either because they were faulty or because they just didn’t work for me.
I don’t profit or benefit from anything I’ve written about here – my desire is to simply share this information because I know many people feel so lost in the world of lymphoedema and lipoedema gadgets!
In this photo is everything that I’ve got in the way of gadgets for my lymphedema and lipedema that are helpful, including Shelby the Aussie Bulldog.
She provides de-escalation of my nervous system by activating the parasympathetic arm – this relaxes smooth muscle tissue which allows for easier lymphatic flow. One of the reasons I consistently recommend stress mitigation strategies is because of their impact on the nervous system and the flow on effect for the lymphatics. Every day, I press my forehead against Shelby’s forehead for my nervous system to benefit. It takes about 2 minutes, or until she gets the fidgets.
Some of the items are very expensive – I think the most expensive thing is that handheld laser unit which costs AUD$3400 and the pump (I didn’t include a photo of that – I don’t use it at all anymore) which I think cost about AUD$4000. The day time garments I wear every day cost AUD$3600 per year.
The dog was also very expensive.
And some items are very cheap – like those dishwashing gloves I use to put my garments on and smooth them out, and the kinesio-tape. The body glue for my garments is also cheap.
The two very sexy garments at the top of the photograph above are my Capri length Bioflects (beige), and full length Szalus (black). Both of these act in the same way – they have a criss cross pattern of slightly grippy fabric on the inside of them which give the skin a micro-massage every time you move, and they leave a criss cross (almost scale like) pattern on the skin. This lifts and stimulates the attachments from the skin to the surface lymphatic vessels and dilates the vessels to promote lymphatic flow. Of course this doesn’t reach the deeper lymphatic vessels, just the surface ones, but every little bit helps! These kinds of garments don’t have to be very tight for them to be effective. Some ladies like to use them to kind of hold everything together as well, and I think they would be very effective for that. The Bioflects are capri length, and the Szalus full length. I can’t remember how much either of these cost but I did buy them quite a while ago and they’ve lasted exceptionally well with daily wear so whatever they cost it was worth it! Washing – I put them into a laundry bag for washing every day, and use a gentle detergent on a gentle cycle with a very fast spin. I air dry them overnight on the back of a chair and they’re ready for the next day.
In the middle we have my Jobst Elvarex toe caps, to the knee and open toe custom made flat knits, and Juzo Adhesive Lotion (“It Stays” glue by Jobst is also good, just a bit more expensive so I get this one instead). I have a black set exactly like these and they aren’t shown, because they were on me when I took the photo! Also in the photograph are my dishwashing gloves for hauling on all the different kinds of compression. These garments are specifically for my lymphedema and I’ve chopped and changed many times over the years to get to this point of these ones being fab for me. You’ll notice one of the legs looks a bit different to the other one, and that’s because in the past I’ve needed that extra level of compression for my more affected right leg. So the toe pieces and one of the leg pieces are grade 1 compression and the one leg that looks a bit wider is grade 2 compression (a bit firmer and thicker). I’m using grade 1 for all of them now because my right leg is actually doing really well. Two sets of these (so all up, 4 x toe pieces and 4 x below knee open toes) costs about AUD$1800 every 6 months. Washing – I pop all of these garments into a laundry bag for washing every day, and use a gentle detergent on a gentle cycle with a very fast spin. I air dry them overnight on the back of a chair and they’re ready for the next day.
I use the glue to keep them in place when I’ve lost some volume around the ankles. Sometimes that happens because everything I’m doing is working really well, and sometimes it happens when I’m getting closer to needing to replace the garments. The thing to remember about using glue is that it does need to be one that is sold by a garment company so that it doesn’t ruin the garments with ingredients that can be damaging. And the other thing to remember is that you should “dot” the glue onto the skin (don’t apply it to the garment) rather than use long or wide swipes with it. When you use long or wide swipes of glue, as it dries it can cause slight constrictions, which we’re trying to avoid. So using dots of glue is better.
At the bottom of the picture I have my night time compression – Comfiwave by Haddenham. Oh my gosh I LOVE LOVE LOVE these so hard! They look quite thick, but they breathe really well and create nice long channels along the legs so that the lymphatic fluid can flow away really well overnight. I’ve tried many different kinds of night time garments but these are my absolute favourites of all of them and if you have a pump, it’s very effective to put these on before you put on the leg pieces of the pump to make the pump work more effectively. I’ve also heard some women do light short-stretch bandaging over the top of these garments while they sleep but you should probably chat with your therapist about whether that’s suitable for you or not. I do need to dot around the top of my thighs with the glue I mentioned earlier to keep them up or they will bunch around the back of my knees by the time I wake. I got the thigh high ones, and they cost AUD$604 for the pair.
As far as laundering goes, they are a bit hard to dry because they shouldn’t go in the dryer (according to my therapist). I have a washing machine that has an very fast spin cycle on it lol which helps dry them quicker, but I still pull a thin towel through the inside of them when they are wet and sometimes that helps to wick that moisture away from the garments so they dry quicker.
Top left of the screen there are my two body brushes. I don’t use these every day, but probably every third day – so twice a week. I got two because it saves time and because I’ve got two hands … what’s the other hand going to do while I’m body brushing?? It may as well join in! I really like the natural bristles because they aren’t so scratchy on my skin and provide a nice gentle pull to stimulate the lymphatics. They also have those little nobbly rubber bits which also give some pull without being harsh. I use them after I’ve come back from my walk (gets the lymphatics going) and right before I get in the shower (hence DRY brushing), and go over each area 6 times in the proper order for lymphatic clearance. They were just a couple of bucks each from the pharmacy. Washing: I take them into the shower with me after each use and give them a wash with soap and water, and let them dry in the sun.
Top right of screen is my Theragun Pro (or some of you might have heard me calling it my little punching machine). It’s a percussion therapy device and I use it probably 5 days a week. The attachment you can see is a double head (I bought this separately) which is awesome because it covers more area with every little punch, and it’s lovely run along either side of my spine! It comes with other attachments too. There are no scientific claims around using it for either lymphedema or lipedema at this time, and I use it quite gently on my legs and feet, firmly on the rest of my body. You can change the position of the punching arm so if you don’t have a partner who will use it on you, it’s a bit easier to manage by yourself than the ones that don’t have a moveable punching arm. I did find it a bit painful at the beginning because of the tenderness in my legs, but over time I feel as though it’s resolved a lot of that tenderness. I bought one that has the extra battery pack because both of us use it quite regularly at our place and we didn’t want to have to wait for the battery to charge up if it ran out – we can just swap it over to the charged one while the empty battery is charging. Very convenient. This cost AUD$899 and it was another couple of hundred for extra heads.
Just below the Theragun on the left is my Riancorp low level laser therapy unit. I use this on the part of my foot (just at the base of my little toe) that gets a bit hard (fibrotic) and it’s also intended to be used on scar tissue for softening. I use it 2 or 3 times a week. Another purpose is for musculoskeletal pain, and I’ve found it fabulous for my neck and shoulder muscles where I hold a lot of tension. For my neck and shoulders I use it every second day. It costs AUD$3400 and requires recalibrating every few years which is around $300.
The tapes at the bottom right are kinesiotape, and there is a little gauze bandage there too. I was a model for a kinesiotaping for lymphedema course and had several practitioners practice kinesiotaping on my legs. I learned a lot about it and have found it very helpful. Placement makes all the difference with kinesiotape – both in relation to position, and tension. There is a great book on it (link below), and if you want to give it a go, I’d recommend following the guidelines in the book. If you decide to let a practitioner have a go, ask them first if they’ve done the kinesiotape for lymphedema course – I’ve seen all sorts of hot messes with kinesiotape for lymphedema and it’s absolutely worthwhile having a properly trained person applying it for you, and who will also teach you how to apply it yourself. You can buy all sorts of shapes, widths, and colours of kinesiotape, and it can last up to 4 days if applied well.
The little gauze bandage is for the toes on my right foot. I use this kind of bandage on my toes every second night with my night time garments. Again, application is really important – it shouldn’t be tight, it just needs to be laid gently over the skin. It’s very tempting to apply it tightly, but rebound swelling is totally a thing with bandaging that’s even remotely too tight, and honestly you’ll just rip it off during the night anyway because too tight bandaging of any sort hurts a lot.
Bottom of screen on the left is a tube of Weleda Foot Balm. This is what my husband uses for my foot massages! It’s good because it’s thick and it gives a little traction, which we find helpful for sweeping the fluid out to the areas that can pick it up and take over from there. Because my lymphedema has been around for more than 30 years now, it requires a bit more pressure and quite a slow pace to clear it if it’s built up at all – this lotion seems to facilitate both.
And here we have the things I’ve kept in case of an emergency or flare up.
Top of screen (sorry it’s a bit hard to see) is a black Solaris Tribute night-time garment. I don’t wear it anymore because I prefer the Comfiwaves at night now. I cannot remember exactly how much I paid for the Tribute, but I do remember gasping when I saw the invoice. Vague recollection is that it was AUD$1300 for one leg.
Negatives – it’s very bulky, like a very thick oven mitt. And it’s hot. Very tough to wear in summer in Australia.
Positives – it works for overnight clearance, it doesn’t require glue to keep it in place, and it’s toasty warm in the winter!
The two blue pieces just underneath the Tribute are Solaris Caresia bandage liners. I don’t wear them anymore because I don’t need to bandage, but I’ve kept these just in case. When you go through Complete Decongestive Therapy (CDT) you need some layers other than the short stretch bandages to help move the congestion out of the lymphedematous limb. Usually the therapist applies layers of foam or foam chips to help move the congestion which is very effective, but when you need to do your own decongestive therapy at home without a therapist helping you these blue Caresia bandage liners make it a lot easier because all you have to do is pull them on and bandage over the top. I bought these so long ago I don’t remember how much the were but they are still available for purchase.
Negatives – hot and bulky.
Positives – they work, and are very easy to use especially if you are doing your own decongestive therapy at home with little or no help.
Next ones down (the beige coloured gear) are the CircAid Juxtafit compression system. They are Velcro wraps that I used for continued decongestion while I waited between my last CDT session and when I got my new compression garments so that I didn’t lose any ground that was achieved with CDT. I’ve worn them on flights, and at night-time as well. You do need to get the little covers that go over them though, unless you’re ok about the chance of having some Velcro from one leg hook onto the Velcro on the other leg resulting in loosening of the wraps and that loud Velcro ripping noise in the middle of the night lol.
Negatives – not so effective with the feet and especially toes.
Positives – easy to apply and remove, mostly effective.
Then we have all the goodies in the bandaging box! These were my staples for CDT (Complete Decongestive Therapy). We have the foam liners I mentioned earlier, some foam chip shapes, short stretch bandages, and the sexiest shoes I could manage during that time with all those layers of bandages on. I’ve kept all this gear just in case I need to do it all again, but also for sentimental purposes because I never want to forget how much I went through to get to where I am now. CDT is no joke … it’s so intensive, emotional, time consuming, vulnerable, frustrating, and self-consciousness all wrapped up in an 8-week memory that is burned into my brain. I’m grateful I had the opportunity to have this kind of gold-standard specialised therapy, and I never want to go through it ever again. Having this box of bandages is a good visual for keeping me on track with my food, my compression, and movement. I’m so surprised at how emotional I am writing about this period of time after all these years, but it still really gets me in the feels!
The Chi Machine is a mechanical leg jiggler. Sorry, that’s the best way to describe it! You lay on your back, rest your ankles in the cradle, and turn it on – the timer goes up to 15 minutes. Your legs get a decent shaking, but it’s also kind of gentle, especially with that lambskin cover which is a nice layer between the hard plastic of the cradle and the ankle bones. I love this thing! And I use it a couple of times a week. It gives me a lovely whole body feeling of waking up and calming at the same time. If you get one of these, the soft cover is definitely recommended to prevent the hard cradle from hurting your ankles!
The Mito-Mini Red Light Therapy Panel is my latest gadget and rather than retyping the user manual for you to read , I’ll just pop a link to it here https://mitoredlight.com/pages/user-manual
I spent a lot of time researching which red light therapy unit I was going to get because you need the right wattage, power density, and wavelength and it can get extremely complex. It can improve mitochondrial function, skin texture and smoothness, adipose tissue levels, arthritic pain, tendinitis pain, lymphatic health, inflammation, bone health, sleep, and muscle recovery. I think the most important thing you need to understand about red light therapy is that you do need to do some homework on exposure times and dosage depending on the unit you get. This one was AUD$500.
I do hope this article helps you in the complex rabbit hole of equipment for managing lymphoedema and lipoedema, and that I’ve provided some clarity for you!
So much love and hope for you all xx