Compression garments: Does anyone with lymphedema not... - LSN


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Compression garments


Does anyone with lymphedema not wear their garment because either their lymphedema is mild or the garments just don't help? I tried many different kinds and don't see the point to wearing them ( I have not worn them for 5 + years) . I have had no change in my lymphedema ankle , I do pump with a pneumatic pump, but the stockings/ garments don't work for me and they make me hotter. I never wear one unless I am going to be on an airplane.

32 Replies

It could be that you don’t have lymphoedema (Microsurgeon mentioned this in your original post) - which would be the reason you don’t benefit from compression.

Cussia in reply to Lynora

I was just wondering about the general experience of people who have it and if they have seen improvement or changes by wearing the garment. Definitely going to inquire about more tests.

Hi cussia, I don’t wear mine either as I don’t think I have Lymphoedema clinic say I do but had no tests to confirm only Doppler just there say so by looking at my legs which are not dry and I have no pain, have a bit swelling round ankles but nothing major and that could be off my arthritis, I have had a few untreated nics in my legs which never caused any infections either so going to have word with LD nurse next month when I go for my app.

Cussia in reply to Bev-1966

I have minimal swelling as well, with moderate pain. No tests were done on me, and nics/cuts don't affect me at all whatsoever. I am going to ask my doctor again on my next visit.

Bev-1966 in reply to Cussia

So we both the same but I don’t have any pain at all.

Cussia in reply to Bev-1966

How long ago did you develop the swelling? I had no pain for the first 3 years.

Bev-1966 in reply to Cussia

About 5-6 year ago has liver kidneys and stuff checked and sent to Lymphoedema clinic 3 year ago where I was given compressions both legs full thigh high but I’m hypothyroidism and when my meds were changed to higher dose that’s when swelling started to subside so that’s wat I think it’s been all along.

I definitely need the garments. Getting out of bed in the morning I can feel increased pressure in my legs before I reach the place in my bedroom where I can put the stockings on.

Cussia in reply to TeresaMay

Thanks for sharing your experience. I don't typically experience any swelling until maybe 2 or 3 pm.

Ask for a Lymphoscintigraphy to be undertaken - it’s the universal gold standard diagnostic scan for LE. The results will give you a definitive answer that will put your question ‘do I or don’t I have LE?’ to rest

I did ask at my doctor's office and they said they didn't know anything about that test. Was referred, and was told the same thing. Not sure who I should try next? Maybe a podiatrist or a vascular specialist?

CCT67 in reply to Cussia

Vascular consultant Lymphoscintigraphy is generally in the Nuclear Medicine dept of large hospitals. It’s unlikely to be in a smaller hospital. The scan is undertaken via a Gamma scanner

Most GPs won’t have heard of the scans for diagnosing LE as they have such minimal education on the Lymphatics and Lymphatic diseases in medical degree programmes

This past Saturday was beautiful. I did mot wear my compression socks due to wearing shorts. My left leg definitely was more swollen by the end of the day. I am very compliant with my socks at work but when the weather turns nice I have a harder time. I don't have a pump but I sometimes wrap at night.

Cussia in reply to GabbiD

Do the compression garments really help you?

Are you wearing custom compression stockings? My son tried over the counter ones and they didn’t help. The ones that were custom made to fit from measurements taken from the therapist work and are essential. Insurance covers them. He uses the Juzo silver and Juzo soft knit, 20-30 and 30-40 strength.

Cussia in reply to Annale

I haven’t worn the compression stockings for 5 years. I wear my legs free all day every day.

I have open toed just below the knee compression socks. They're the first thing I put on when I get dressed, and the last to be taken off. Both my legs have reduced from the size they were, neither weep lymph fluid as they both used to do. If I wear shorts I still wear compression socks.

Cussia in reply to Thomas45

I’m so glad the stockings have helped you!

Good question, Cussia. It makes me wonder if all the compression stockings really retard the development of lymphedema. And if left untreated, does lymphedema tend to plateau out at a certain point and not get any worse? Of course, in your own case, you might have something else that makes your ankle swell. But since it is not getting any worse in five years, and your specialists can't seem to pin down a diagnosis for sure, why bother with compression stockings anyway?

Cussia in reply to freimaurer

That was my logic as well. The stockings didn’t help. But the pump did. As soon as I started the pump, the bones in my ankles. began to pop, and then the pain and swelling went down more.

I have lymphodema in both legs from birth, In the early years I wore below the knee compression grade 3 stockings. They were ok, but when I got to my 40s and was told i should be wearing up to the thigh, I couldn’t get on with them. Consultants dont appear bothered with this condition and discharged me. I stopped wearing compression stockings and so far haven’t looked back. My feet and legs don’t swell anymore than they would if I was wearing the compressions, they’ve never really hurt, just ache. I have regular massages which seems to help and drink plenty of fluids to flush the kidneys. The swelling isn’t anything that stops me from doing anything but then it might be I’ve never known anything different.

Cussia in reply to Chris21

Me too! The stockings made it way worse and more uncomfortable. Having my legs free is completely fine and manageable for me with my limited swelling.

Yes I did stop wearing my compression stockings for several months. My legs got my swollen and achy - and I have just had a massive pulmonary embolism which I am very lucky to have survived - so those stockings are going back on right now!

There are many reason for leg swelling. One of which is lymphoedema. Lymphoedema responds to compression garments, MLD etc but so do others eg venous disease or cardiac disease. However some are not helped by compression eg osteoarthritis, obesity. Unfortunately for many lymphoedema is a diagnosis of exclusion - ie when some other diagnoses have been ruled out. The danger with this approach is that some people get labelled as having lymphoedema when they don't really have it and get locked into a life of unnecessary compression garments. There are two tests that effectively diagnose lymphoedema. Lymphoscintigraphy and ICG lymphography. Most physicians will not know about these and they are quite specialist so aren't available everywhere. If your diagnosis is in doubt the these investigations may help. I have previously written a more in-depth article about these investigations that might be helpful.

Hope that helps. With regards to seeing if compression should be used then an accurate diagnosis is a critical first question.

I have worn knee-highs and now thigh high compression garments for 6 or 7 years now and my lower legs swell if I don't. I had my first attack of cellulitis lately and decided to leave off the garments for a couple of weeks. Before the cellulitis, at my last measuring, I had lost several cms from my calves but the knee highs have caused more swelling in my thighs.

Lynora in reply to Bigangel

The cellulitis will have caused additional swelling, but you did the right thing by leaving the garments off - too painful to wear during infection. Hopefully your lymphoedema clinic are keeping an eye on you, and have adjusted your compression.

I've had years of lymphoedema in my left lower leg after have surgery on the top of my leg. I dont like compression legs because they are hot and uncomfortable. I like wearing skirts in the summer and hate the look of compressions Sox making me look so much older than I am. Full leg compression is so hot.

I now have Lipodema in the left ankle where fat is accumulating. Its painful and very sore. I'm now waiting for footless tights to arrive, hopefully they might look like footless leggings. I really must wear something to help.

Cussia in reply to mylympholeg

They are so hot in the summer! I used to try to wear them in June/July, and it was miserable.

About time compression manufactures rethought their horribly uncomfortable garments, can’t sportswear designers be roped in, we deserve compression that fits and doesn’t look so utterly depressing, can’t we get together and exert pressure on the manufacturers? No pun intended

Cussia in reply to Oonagh1

I agree. If the general course of action is compression garments, and there is no cure, then why not make them as comfortable as possible. I thought the concept of compression tights cow winter, was really cool. Creativity is much needed with the production of these garments.

vrissianna in reply to Oonagh1

Oh I so agree,

I agree with the sportswear fabric with compression included. Perhaps someone like the company who manufacture the m & s sportswear could take it on. Good quality, breathable with good compression at a reasonable price.

I wear their sports footless leggings to exercise in. Please dont ask me to approach any companies, my life is so cluttered, I suffer from bouts of anxiety and am nearly 60! BUT I will support anyone who does take it on.,😘

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