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.
Compression garments: Does anyone with lymphedema not... - LSN
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.
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.
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.
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.
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?
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.
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.
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.
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.,😘