I have had secondary lymphedema in both legs for 11 years and it has been stable until 18 months ago when my right leg became worse and it has been swelling slowly but gradually since then. For almost a year I have been wearing class 2 tights and a class 1 stocking on the right leg and do MLD at least twice a day. As it was still swelling I was prescribed class 3 tights and yesterday I finally managed to get them on.
I had been unable to get them on before now due to a shoulder injury as I lacked the strength needed to pull them on. I posted previously on the difficulty of getting them on and got helpful advice about using rubber gloves so once I had them on I kept them on for 8 hours. It wasn't very comfortable but I assumed that the extra compression would help. I was horrified when I took them off last night to find that the ankles of both legs were very swollen and the right leg looked worse than usual. Today I have gone back to class 2 tights and class 1 stocking.
Does anyone have any idea why the extra compression seems to have made things worse? I’m getting increasingly panicky about the way my leg is simply not responding to anything I do. I trialled a compression pump last month and this also had no effect on the swelling. I’m going to ask if I can try flat-knit tights but now I am wondering if there is anything at all which will help? Would wearing my tights at night as well be one option?
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caroline111
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I’m surprised to hear your lymph clinic hasn’t put you in flat-knit before now, as circular knit are really intended for vascular difficulties whereas flat-knit are specifically designed for lymphoedenomous limbs. Higher compression isn’t always the best which is counter intuitive. Often rethinking compression management entirely is more sensible than going higher up the compression class. Flat-knit works entirely differently on limb lymph compared to circular knit, so the compression class should go down (they are not like for like).
Please be very cautious with your shoulder and don’t push it in order to don your compression. I’ve had 3 major shoulder ops (both shoulders) so I know how challenging donning leg compression is for the many months after an op (shoulder healing is very slow due to various factors including limited blood supply to the shoulder) .
It sounds like you’re doing SLD daily at home which is important. Have you had MLD with a qualified lymphoedema therapist? If you’re able to afford MLD you may find that it helps significantly in managing your symptoms. Both MLD and SLD should focus not only on the affected limbs, it’s essential to open up the drainage pathways in the torso as part of each drainage sesssion.
It may be worth considering CDT aka DLT which focuses on limb reduction (this includes a course of short stretch bandaging with daily changes of bandages and MLD in between each bandage change). CDT isn’t enjoyable but the reduced limb volume at the end of treatment is worth the unpleasantness!
Have you tried a night garment such as a Comfiwave or Mobiderm? These are both amazing. Not cheap but they might be the catalyst your legs need to start improving. I also have the end of my mattress elevated.
Sue,how do you find sleeping with end of your mattress elevated? Can you get comfy… do you find in the night you tend to curl up while you’re asleep? Sorry for all the questions but I find this interesting,have been wanting to do this. What did you use to elevate mattress securely ? X
Hi Stella,It’s been really helpful. I do tend to sleep with my lymphoedema leg bent slightly which the Comfiwave allows but no more since the bed was elevated.
We put wooden planks wrapped in plastic under the mattress so that my leg is above my heart.
I think it has helped and from a comfort perspective it’s been really no different to lying flat.
My lymphoedema swelling progressively got worse all the time I was in off the shelf circular knit stockings. I finally got made to measure flat knit stockings in 2019 and my swelling has been pretty much stable ever since - I'm very compliant and wear them every day from when I get up until I go to bed. It took 3 goes to get a flat knit stocking that fitted well but it was well worth the effort. Flat knit is stiffer and less stretchy than circular knit and more appropriate for managing lymphoedema.
Thanks Perido. It's a relief to hear you say that flat knit has helped and has stabilised your condition. I'm hoping I might finally get some in a few weeks.
I think getting the right compression garment is crucial . I wore class 2 circular knits for years and managed to control my leg lymphoedema and skin quite well .so I’m not sure it’s all down to which type of garment you wear . They felt I’d be better in a class 3 garment which I was reluctant to try because of arthritis in my hands but I eventually agreed to it and I feel at that point it made my lymphoedema worse . I’d never had the lymphoedema in my feet and that triggered it off . I built up that dreadful tyre effect around the lower keg / ankle and ended up with pressure sores in that crease line because the garments were too tight and restrictive especially since I had a job at that time which involved sitting all day at a computer . I’m now still in ready made flat knits which sometimes they get right in size and sometimes not and I’m not working so that really helps as I can move around more . It’s not easy to get your garments right but if it doesn’t feel comfortable then we know our bodies very well so listen to your gut instinct . Garments are supposed to help not hinder to help us to be compliant so ask for help if you feel that it’s not right and don’t be put off . I think with lymphoedema we have to look at the bigger picture of our lives and tackled it holistically . One of the biggest factors that personally changed my lymphoedema was going through a period of great stress and I think this added an overload to my immune system which resulted in detrimental changes . I think we have to look after our whole body and not just the affected limb to keep it under control .
Thank you for your reply. I'm relieved to hear you had the same result with Class 3 circular knit and it wasn't just me. I'm hoping the clinic will now give me flat-knit but I'm also beginning to realise what an individual condition this is and that I've a lot of trial and error work to do in order to find what works best for me.
Hi Caroline111 - although my lymphoedema is primary - from birth I am now 81-I too wore circular knit knee highs until my legs became too large for the largest size and in effect caused a tourniquet effect. Have been wearing flat knit for the last 5 years and have found them to be much better; they don't reduce my swelling at all but certainly keep it under control. However, there are days when I have to remove them as the pain is quite debilitating. As others have said, I keep my skin extremely well moisturised, I apply it every morning after showering, and again during the day if needs be and always at night before I get into bed.
I do believe stress has an effect. I have tried special diets, but found nothing to be effective, but certainly moving about, always sitting with legs elevated and doing exercises especially focusing on the whole body (like chair yoga) keeps me mobile.
I do hope you get things sorted. Take care and good wishes. x
Hi, Anne, thank you for your reply. I agree very much about keeping my leg elevated. During lock down I could work from home and do that but increasingly I'm away from home so I'm upright all day. I'm hoping flat-knit will help.
Sounds like u need to wear something at night, but not what you wear during the day. There is a special night treatment for your right leg. I use LymphedemaProducts.com for my compression stockings. Perhaps they carry night guards there.
You know I am certain that compression isn't the right route for everyone. I do know it is the route that is pushed the most, but if you don't get the right level of compression at the start, then you will obviously not feel the benefit of it at all and indeed, it could exasperate any swelling issues you might have, plus give you more to worry about.
I also think that specialist practitioners should think before prescribing compression what might prevent you from getting the compression socks or tights on.
As you age your whole body becomes less supple, so you might not be able to reach to put on an ordinary pair of socks or tights let alone compressions socks or tights. If you have asthma or COPD, the actual act of getting on a pair of compression socks is enough to make you have an asthma attack or copd spasm and these aren't very pleasant. Furthermore, they can be life threatening.
If you successfully manage to get them on, for some people a matter of hours to be precise say 2 hours is long enough for the individual to feel a number of things, for example; - your circulation is cutting itself off, so you get incredible pins and needles in your foot, leg or whichever limb is troubling you, you will get pain, a redness and a soreness in the extra ridges caused buy the compression socks/tights, the top band may give you an itchy rash and again the feeling that you are being strangled by the wearing of the compression. The thing is if compression is wrong for you then your day will be one of agony.
If you have another problem or two say you get cystitus of the limb, or you have had surgery then you can not wear compression at all until the problem has healed itself.
I personally think elevation, massage , regular showers, and light exercise is the key to getting some control over your lymphoedema and if you must wear compression, flight socks may be the best, for light compression and if your lymphoedema has you incapacitated for say work, then the best cause of action here would be having an attendant to apply body wrapping and bandaging. At least with this level of daily attention he or she would be able to notice if anything else was drastically wrong and needed tending too.
Before using compression you also need to question how much longer you are adding on to your day, especially, if you work for a living.
Thank you very much for your comments. I agree, compression is difficult to get your head around. I 'm looking at getting bandaging to reduce the limb size but it's hard to find people who are confident about doing it.
Here in the UK there are units attached to the likes of St Oswalds. I know it sounds a bit weird but hospices do have these services attached to them and rather than thinking negatively about what they have to offer, I did embrace a programme they had, which educates you about lymphoedema and lipoedema , they provided a short course of callinetic exercise, something called MLD a massage technique, specialist nurses to measure the amount of water/fluid in your limbs and then advised on the best treatments.
So, if I were you, why not ask your doctor if he knows of a similar centre near you?
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