Hi I have primary lymphoedema, only symptomatic in my right lower half. I wear a thigh length flat knit class 3 stocking plus foot glove, all day every day, and this seems to work well at keeping my leg fairly consistent. In the cooler months I’ve been wearing a comfiwave stocking at night but it’s far too hot to use spring/summer.
Recently I had a short course of using a leg pump once a week for 3 weeks, and it seemed to help reduce the swelling. I’ve now borrowed one for a month and have used it daily. I like using it and it fits well into my life - an hour it so deep breathing while knitting and listening to a radio play, what’s not to like!
Now I’m wondering whether to buy one to use at home. I’m interested to hear other people’s experience of this - did it help? Did you feel it was worth the expense? I have savings I can use so that’s not a barrier but I don’t want to spend unnecessarily.
Looking forward to your feedback! Thanks, Deborah
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A pneumatic compression pump made specifically for LE (such as LymphaPress, not gadgets on Amazon) can be very helpful when used properly. Doing lymphatic breathing throughout and also opening pathways before each treatment is essential. The risk of daily pumping over a long time /years with Primary LE is putting pressure on the lymphatics at the site that lymph is drained to during pump treatment. If the lymphatics are overwhelmed where the pump garment ends then those lymphatics can weaken thus resulting in lymphoedema developing in that area. Many Primary patients experience this and many don’t. It appears anecdotally that those who do develop LE above the pump garment site are usually the ones who do pump treatment without preparation and deep lymphatic breathing throughout treatment.
Have you received Manual Lymphatic Drainage from a private qualified lymphoedema therapist? An alternative to an expensive pump is regular MLD treatment (eg 2,4, or 6 weekly/whatever is affordable). MLD from a qualified MLD therapist doesn’t come with the risks that a compression pump does and is far more thorough at draining lymph than a pump is. Cat x
thanks so much for this detailed reply. Yes I’m using a purpose made pump under guidance from my specialist nurse. I have had MLD but at over £50 a session sadly it’s not viable to have it frequently, and I’m pretty rubbish at doing it myself. If there was a class available I’d do it (ie being taught in person so as to get a feel for the amount of pressure to apply), but I’ve found it hard to get the hang of using videos online.
V useful to have the warning about the risk of becoming symptomatic above the level of the sleeve - which includes the groin area where I first noticed the lymphoedema. Definitely something to factor in.
I have secondary lymphoedema extending right hip through leg to foot. Like you, my swelling is fairly well controlled with compression garments although I'm not too happy with compression options I tried so far for my hip/buttock.
I bought a 'lymphoedema suitable' pump last year and am glad I accepted advice to choose a trouser garment, both to support my 'normal' leg which is at risk for lymphoedema and also because of my hip/buttock swelling. I don't like using the pump in winter because it feels cold to get into and so far I've tended to use it only during the warmer months - about once a week.
My pump doesn't obviously have much effect on my swelling, but I think every little helps and I'll take not getting worse as a plus. The pump and the garment do take up quite a bit of space and the garment especially is not something I'd want to be putting away and getting out for each use. Luckily I have room to keep everything out ready to use, but if I didn't I don't think I'd have bought it. I would add I'm not naturally someone who likes to lie still and relax too often - most of my self management involves me being physically active.
Overall I'm fairly happy to have the pump as a small part of my lymphoedema self management 'tool box'.
thanks so much for taking the trouble to write this - very encouraging. Yes I’m normally someone who’s constantly on the go, so having a reason to sit still and breath deeply is quite good.
I’ll see what my specialist nurse says before making a decision, but at the moment I’m inclining towards a yes
It is definitely worth investment in asking a qualified MLD therapist to spend some time with you to teach you self massage to make the very best of your use of a PCD (pneumatic compression device). It’s not beneficial to lie back and read a book and be fed grapes! Treat it as a therapy session.
When the products started flooding the ‘cheap’ market about 20 years ago, I had a couple of male clients come to me to sort out problems that had occurred after they bought leg garments online. Didn’t read the instructions. No self massage. No deep lymphatic breathwork. One chap just stuck his leg in the plastic sleeve, and went to bed, thinking it was fine to use for a few hours…..😳 It took months to sort out the ‘problems’.
If you do go for one these devices, invest in the best - and if you have lower limb swelling, use the ‘trouser’ so the lower abdomen/groin is included.
thanks ever so much for this Lynora, very helpful. Plenty to think about, and definitely not one to rush into. Will have a conversation with the MLD therapist I’ve seen about some teaching sessions for me and my partner
Hello,As I mentioned below I have a medical grade lymphedema pump but was never instructed to open pathways before pumping. I was told about the deep breathing. I am in US. Any specific order or method. I will call my PT and ask as well.
I have had a pump since last year. I have the trunk garment and dual legs. I am trying to get better about using it. I didn't feel like it was helping, and in some instances, I felt like it made the swelling in my abdomen worse. I am interested in the feedback about not doing prep work before pumping. I am not sure I was ever instructed to do prep work, and I do feel like I have more swelling in my hips and butt now since having a pump. I wonder if that is the reason.
It does feel great when you are doing it. Because I have the trunk, I have to lie pretty flat with my legs elevated. So I can't really do anything. Sometimes I watch a video or read. Lately, I have been concentrating on deep breathing throughout. I will now work more at prepping before pumping!
I agree with Perido on the space. I don't have the space to have it laying about, and it is easier to forget about when it's out of sight- out of mind. I did find a cute hamper, that everything can fit in, and it's easy to pull everything out and put back at the end of the night. I do find it hard to schedule into my life, but am trying to get better at doing it regularly. Someone also told me, that even if I don't feel like it's making me better it could keep it from getting worse, so that is what I cling to.
hi Gabbi that’s so much for sharing your experience. Interesting that you think maybe some areas have got worse since you’ve been using it.
I’m lucky to have plenty of space and as I’m retired I can easily fit it into my lifestyle. Bi was told to clear the lymph nodes in my groin before using it and read that deep breathing is important so those are what I’ve been focussing on while using it. I an often hear gurgling tummy noises that are an indication that lymph is moving around so that’s encouraging.
However in light of the comments I’ve had I’m going to give self massage another go including getting a therapist to teach me and my partner, and see if that helps. I’ve learnt that I can fit a quiet hour into my day, so I should be able to use that for the SLD.
I’ve still got the option of buying a pump in the background. Like you, my main aim is to prevent it getting worse - improvement would be s definite bonus!
Good luck. I should add, that I am not sure things got worse...they just didnt get miraculously better as I hoped. I wasalways doing the deep breathing but not opening any passages. So I learned something too. And I havent been 100% compliant. I go long bits without doing it. So I am working on consistency.
As for SLD. My PT showed me. But I also watch youtube videos
I have 2 of them. IST I received 5 yrs ago and I love it. The ease of putting on each leg is the best. I was told by therapist of another one, supposed to be great and I got it through my insurance. Person came out to show how to use and fit to me. Well I received a letter about 6 months later from insurance they never approved and would not pay for this but they couldn't bill me for it either. So that's why I have 2. The free one I got I'm sure is good but it is sooooo hard to maneuver to get on that I never use it. You have to Velcro it all up and down your body and legs to fit you. It might be easier if you were mobile but I have a very terrible back, painful and can hardly move around. I sleep in a recliner and use a walker. So it definitely isn't a great option for me. The pumps are a wonderful item for lymphedema, if your Dr approves along with any other health issues. My recommendation if you look into getting one is look for the ease of getting them on. My husband is here to help but The Velcro one he hates also because besides being hard to fit each time it's very time consuming. Take your time in deciding and check with your insurance they might pay, mine does and I'm on Medicare. Also look for one with a lot of air chambers. Good luck!
thanks for this. I’m in the UK, we have a different health system here. I have an excellent specialist nurse who supports me, but devices like this are never covered so we always have to pay ourselves. Good advice to think it through carefully!
We are just the opposite here in the US. We have hardly any Dr's and we can get therapy but she is not giving any massages and it's strictly leg wraps and to see if you are doing it right. The electric pumps are a God send. And we can get insurance to pay I'm told 1 time every 5 yrs. Hope you can find one?
yes, very different systems. So very glad we still have our NHS and hoping for a change of government soon so we can prevent it continuing to be undermined and slashed.
I have 2 and getting ready to get my 3rd. My 1st, Biotab and love it for how it works, very easy to use. 2nd one is Flexi Touch which I hate. Very hard to use, (put on) even with my husband's help. He struggles as much as I do. Probably works well for lymphedema, however, you have to be able to get it on 1st for it to work and it is so hard with all the Velcro that I don't use it. It's a shame they couldn't come up with a better system easy like the zipper. Mine goes unused because of the difficulty. Now I am scheduled to get the Lympha Press and I am so excited about it. It looks great and I can't wait to see the{⁰ demo that should be soon. Maybe next week even. Will let everyone interested the outcome of unit.
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