I kind of want to get an idea to see how effective people find their compression.
I have never really experienced improvement through compression tights, but bandaging and pumps work, and especially rest with the leg elevated does wonders.
I am convinced that the garments option is a cheap NHS way of maintaining the status quo as far as an individuals lymphoedema is concerned. I have heard arguments that compression may constrict the flow further.
I do know however that my leg gets bigger when I don't wear my tights, but it never seems to get smaller.
Just putting this out there for healthy debate and discussion
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syrup01
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For my mother leaving them off hasbeen a life saver. I am puzzled by thedual idea of construction. Don't constrict it's bad for LD. Do constrict or it will get worse. I think you need to keep legs elevated and use a good compression machine. LD is a disability and more allowance needs to be made in the work place too. Leave them off and see what happens. We all have different needs and lifestyles
I do believe that to constrict as in a tourniquet is very bad for lymphoedema and the constriction from garments is nowhere near that level but considering the lightness of touch from MLD, there must be an argument that compression is the panacea that it is made out to be.
I think custom garments work better but are expensive. Also if the leg gets smaller, your garments need to be made smaller. I don't think this happens most of the time. I didn't find the ready made garments effective at all. Best of luck.
Compression garments are just part of the management. I use air compression pump morning and night, bandaging when I can, self lymphatic massage, twice daily, exercise, elevation, body brushing daily and compression garments as part of my regime. I have also had lymphatic venous anastomoses ( privately sadly). I generally manage to keep the swelling under control, but it's hard work and determination that pay off the most.
LSN have good DVDs for self management if you've not seen them.
The Lymphodema Support Network have dvds that show you simple massage and exercises. I have used both as part of reducing the size of my leg. Their website is lymphoedema.org where there is lots of information and their online shop.
It depends what your budget can be for pumps. I have the economy option bought from Amazon amazon.co.uk/gp/aw/d/B006WL...
If you put in 'compression machine for legs' in the search it will show other options too. I wish I'd bought a full length version but was cautious as I was sceptical about efficiency. I now know that it's what I should have bought.
If you have a large budget (£3,000+) then lymphapress is the best option. My therapist has one and it is amazing. These are sold through specialist vendors and if you google you'll find them.
I have made to measure (both legs and feet). Excellent would not be without them. Don't do anything else apart from elevating when relaxing at home, plenty of excercise and trying to remain at a good weight.
Compression therapy is not for limb reduction that's what nightly bandaging, wraps, elevation, pumps, and also Complex Decongestive Therapy are for. Some people get confused about this hence my comment. Compression is to help maintain reduction, and to prevent/slow the increase of oedema and limb volume over time due to tissue fibrosis and changes in the architecture of the skin which is thought to happen more swiftly without compression (particularly if the disease is not diagnosed and treatedin Stage 0-1) .
If compression garments feel like a tourniquet then they are not the right garments - either measurements are wrong or the garment itself is not the right one for the limb. There are many garment options in the world of circular and flat knit garments. Flat knit are entirely bespoke for the limb which usually results in their feeling more comfortable than circular knit which is not bespoke. It took over a year of the LE nurse trying variations of garments before getting it right for my Lymphie legs. I realise I'm lucky, not all LE services are the same across the UK which is very unfair and results in many Lymphies being stuck in garments that are less effective and are not the best fit for their limb
Great discussion. Therapist here. Not everyone can tolerate garments. Garments are usually not effective in reducing the size of a limb - they are designed to support circulation and 'hold' the volume. As you mentioned, Syrup01, with compression, your leg does not reduce when you wear the tights, but does get bigger without them. That is their job - to stop your legs getting bigger. I don't think it's a conspiracy (ie NHS handing out the cheaper option to manage this condition). Compression is still part of the gold standard of lymphoedema management - wearing garments means that many people can still get on with life (put on your garments and go!). It's a bit hard to keep your legs elevated all day and using pumps if you're a busy person that must leave the house and work. As mentioned already, custom made flat knits are the most superior of garments for lymphoedema - but some people never get used to them, or prefer circular knit. Certainly not one-size-nor-style-fits-all.
My compression socks were measured for me, so they are supposed to be right for me. However, it is now several months later and I have to tell you they don't feel right at all and whatever improvement there is, it is minimal.
The reason why it is minimal is due to the fact that they cause more pain and discomfort to wear for even a short length of time. However, I should tell you they are not the cheap solution you report them to be as each measured pair costs the NHS around £170.'s, just for socks. How much more the stockings or tights are I do not know, but the socks are approximately £170 a pair which is why you do not get a second pair unless you are alright about your first pair and wearing them.
Re the improvement, it is temporary as the shape of my lower leg and ankle looks slimmer for a short while after the socks have come off, but an hour or so later, they are back to their normal swollen self.
I do notice that when I wear the socks my legs look slimmer and the compression stops the ankle over-spilling in relation to my shoes.
But the disadvantages of wearing them are many pins and needles and numbness, (like they've been to the dentist) no circulation in the foot and itchy legs below the knees where the rubber meets my skin.
No one has mentioned how much less pain and aching they get with their garments. I have below the knee 'stockings' and find everyday life much more bearable since wearing them. the first few days were awful, the next few weeks uncomfortable - now I feel vulnerable without them - not to mention how swollen my legs and feet are at the end of the day if I do leave them off.
I have never been offered any other therapy and my appointments are no longer every six months, due to clinic closures.
My first lymph nurse was brilliant, explaining everything and telling me about LSN, which really helped when I struggled with itching and pain at first. There was some reduction in swelling during my first year, now it seems to have plateaued - but I wouldn't like to be without the stockings.
BTW - I have discovered that nice soft gardening gloves are brilliant for pulling them on. I used to use rubber gloves but the finger-ends were soon shredded!
Just a word about the rubber gloves et alia. I started off buying those produced by various compression garment manufacturers, and agree with you that the fingers were soon worn out, so I switched to the tacky kind obtainable from supermarkets. I don't put my hands inside; instead I hold the glove against /across the stocking and pull it on that way. It gives my hands more strength, and the gloves last much longer.
I also use the "slippy" that comes with the new stockings, and find that this, combined with the glove, makes the donning much quicker and easier. I would not be without my stockings; my affected leg would soon be feeling tired and heavy if I left them off. I appreciate them all the more as I had to wait 7 painful years to find treatment after my operation for cervical cancer(1987). No-one in the medical profession knew what to do about it. The surgeon told me at my check up that I should lie down with my feet up the door, but as I was teaching piano at the time, that would not have been a possibility!
PS I like your idea about the gardening gloves. I might try it.
I have arm lymphoedema and wear a compression gauntlet style sleeve. As far as I am aware compression garments provide graduated pressure whereas Scholl support stockings probably don't. I think it is possibly harder to get foot and leg compression right as gravity has so much more effect on legs than arms.
I notice that my arm feels heavier if I leave my sleeve off, say for a special occasion in a sleeveless frock, but not more swollen.
I was first measured for below knee garments in April and it took my gp and pharmacy over 6 weeks to get them for me after many phone calls and visits. I must say I haven't found them easy to use and not sure what benefit Im getting from them. For one I can't put them on or take them off without help (arthritic hands and legs) and even with help it is a struggle. Ive even bought a sock aid but got my leg stuck in it and it was useless so had to send it back. By the end of the day my legs and feet look deformed, still swollen and are really painful with itchy skin but they look bent and broken. Pain is worse than when not wearing them, So much so that I dread putting them on again. I am trying to persevere with them but its a struggle. I got 2 pairs. 1 pair are thick and I can't even get my toes into them let alone my lower leg so I keep trying with the thinner pair which cut into my legs behind my knees and stop the circulation in my toes. Im seeing Lymphoedema nurse in September so hopefully she will have some answers to my questions.
I dont pee much and wonder if some of my swelling is down to water retention.
Itching is a common complaint on here when we are new to wearing them, but if you can persevere and moisturise your legs when you take your stockings off at night, it should gradually disappear, or at least ease. If you can't get them on, even with the slippy thing (I didn't know what it was until someone told me) and using rubber or soft gardening gloves to help you grip them, I think you need to be remeasured and checked for fit. My first two pairs pinched at the 'front of my ankle' and it was very painful and deep red by the end of the day, but later pairs have a much better fit. Good luck.
Thank you Bigangel. What is this slippy thing people talk of? Ive not been told of anything to help get these garments on. I have really stiff painful hands so think I will struggle even with gloves. I/ we struggled to get the thinner ones on today and just about made it to this evening before they got so unbearable I had to get my Hubby to get them off me. My little toes seem to go numb and my feet are still painful and the size they were when I put them on but now I have a deep red band around my ankles and my left shin looks deformed. My legs ache after taking them off even though I keep them elevated. Hopefully I will get measured again but its so expensive everytime Ive had to get a pre payment prescription card which I also can't afford.
The slippy comes with open toe stockings. I have a Easy-on frame bought from the Medi website which I use. It takes some getting used to, but I find it really useful.
Im going to ask about open toe because 2 of my toes seem to get caught up and get pins and needles with the full socks. I did try a frame but had to send it back because my leg got stuck in it (I have really chunky calves). I wasn't told if I have secondary or not so not sure but another question for my list. Thank you. Joolz.x
Just read your comment about pre-paid prescriptions too. I am secondary Lymphodema and qualify for payment exemption. Have you investigated if you qualify?
In contrast to hebden the first 2 pairs of my made to measure open-toed, just below the knee compression stockings took a fortnight to come from the factory in Germany. These are NHS ordered. The last time I saw the Lymphoedema nurse she did a letter asking GPs to do a prescription, and gave me copies of the measurements. I called at the GPs the same day, and 8 days later the Pharmacy sent me a text stating they'd arrived. The stockings are comfortable. I put them on using supermarket own brand rubber gloves and an "Easy-slide" aid, though I see the stockings come with a slippery aid also. The stockings are comfortable and have reduced the girth of my legs. My legs used to weep lymph fluid, sometimes for 7 hours a day, but that stopped when I put the first stockings on. Fortunately I don't have arthritis, just asthma, which is usually controlled, and persistent atrial fibrillation which is not a problem as my heart rate is not fast.
I do sympathise about the red band around your ankle, it is very painful - in fact it was almost as bad as the itching which lasted for hours. Moisturising as soon as I removed my stocking helped me a lot. I used ABC (tea tree) body lotion which was very cooling, stroking it in with upward movements. The slippy thing is like a very short sock, but made of very slippery material. It goes over the toes before putting the sock on and is pulled out from the open toe of the stocking. I had far more trouble with my first prescription which were 'closed toe' stockings - are yours open or closed toe?
Hi Bigangel. Yes I have closed toe and I think from the replies Ive had could be part of the problem. I have a list of question for when I see the nurse in September. Thank you for your support. Joolz.x
I always have the German open toe compression knee high socks which come with slippies and it makes putting them on so much easier. Lots of nurses just use carrier bags. The leg clinic also obtained a Magnide applicator which I initially used but find that when I pull it off my leg it takes off the cream I had applied so now I just use slippies. I find it easier to stand in front of the loo, put my foot on the lid, then the slippie, then the stocking and then remove the slippie. I also apply cream to my legs about half an hour before putting on stockings to give it a chance to soak in. I found the frames too difficult - probably okay just for ordinary stockings but not compression. I ALWAYS wear compression stockings during the day and when I can I elevate my legs otherwise the pain will start again. For my granddaughter's wedding I wore compression stockings plus large compression tights from M&S over the top. I was able to wear sandals with a 2inch heel and had no problems all day - very comfortable.
Thank you for the advice PenelopeW. I won't be able to put my foot on the loo as I have severe arthritis in my knees and feet and can't bend my knees enough. My hubby helps me put the socks on but even he is struggling to get them on me and we can't even get one pair past my toes. I wear my other pair as much as I can but they do cut in around the front of my foot. Im going to ask about open toed ones. Congrats to your granddaughter. hugs Joolz.x
It sounds as though they are definitely too small. Do you attend a Leg Unit? Your legs should be measured. I find the German stockings more comfortable.
I was diagnosed with secondary lymphoedema in 2011. I just didn't take on board that I had to wear these horrible tights all day, every day. A few weeks later I went on holiday for a city break and didn't wear my tights. After three days my legs were like tree-trunks. I rang the lymphoedema clinic in a panic and was advised sternly to wear the tights. Within a day my legs were back to how they had been before I went away. This was an early lesson to me that I needed to wear my tights. However, I think I'm classed as mild or moderate - perhaps they are more effective in these cases. Although I hate them I find it uncomfortable if I don't wear them because otherwise I find the impact of walking really unpleasant.
From hearing everyone's comments, leg lymphoedema must be a lot worse to hear than in the arm. My right arm is affected moderately. Even though the lymphoedema nurse measures me, it took trial and error to find the correct sleeve. You should not get pain or a red band left when you take them off - they must be too small. Although the instructions say not to put cream on before use, I find that if I don't I get very sore. It doesn't seem to affect the sleeve at all. I couldn't cope without the 'slippy' sleeve to help me put it on. Good luck everyone and hope you can find some way to make your struggles easier x
I forgot to mention a friend who also wears them. She wears them over some thin stockings - not sure what material the stockings are. She also has opened toed as I do.
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