Trying to help and live with lymphedema

[MNM8674]

I cannot find compression to fit my leg I have lymphedema in my right lower leg. I have had a vein closure which did not help. I was hospitalized with over 20 cellulitis infections the first 3 years until they started treating me with a maintenance dose of cephalexin. I take 500 mg two times a day. I get winded just walking 50 to 100 yards because my right leg is so heavy and I gained a hundred pounds since being diagnosed. I was very active and a personal trainer with my own business for many years before being diagnosed. The lymphedema came after a broken ankle with healed wrong. I really have no idea what to do. I'm thinking of starting turmeric with cherry tart juice supplement. I also got swell no more from a website but I'm not sure about that one. Looking for advice it's very hard to wear compression because the right leg is so small and I can't get it to fit. I don't really receive any treatment because nobody gives me appointments because it's in one leg and they say I'm not a priority compared to other patients which I don't think is right. My right leg is so swollen I can barely lift it to put socks on and walking is a definite chore. Pictured are the two legs side by side You can see the right one is twice the size of the left. Other is just the right leg which I have the lymphedema in. About taking the swell no more pill and also turmeric with tart cherry.

[MNM8674]

Size difference between the two legs

Size difference between the two legs

[Perido in reply to MNM8674]

Hi MNM8674

By far the most effective way to manage lymphoedema swelling is well fitting compression garments. As Lynora says, you need made to measure prescribed by a lymphoedema specialist. I'm sorry to hear you've having problems getting help but persevere and I'm sure you'll get there.

Another important aspect of managing lymphoedema is skin care which involves daily moisturising with a lotion/cream free from perfume and parabens which can irritate compromised skin. Dry skin develops cracks which, although may not be obvious to the naked eye, enable bacteria to enter and cause infection.

Regular exercise is also important. Intense exercise may make the swelling worse; monitor how exercise affects the swelling and adjust accordingly - effects might not be seen until the day after.

I'm not aware there is any evidence that turmeric and tart cherry supplements benefit lymphoedema swelling. I suggest a healthy balanced diet, avoiding processed food. Also keep well hydrated and limit alcohol and possibly caffeine.

[Lynora]

Hi MNM8674You need to see an LLT (licensed lymphoedema therapist). You definitely need made to measure compression.

You may have secondary lymphoedema - secondary to trauma (the broken ankle). Not sure the vein closure was hoping to help the swelling - it doesn’t seem logical.

This site is based in the UK, so you will need to investigate lymphoedema service providers in your side of The Pond. On the right side of this page, there might be some links to resources in the US - if they are not visible, use the search facility to find help in the USA.

[DeadfootMo]

If compression is difficult to get another alternative is wraps, but whatever option you go for, you will need to see a specialist, who will outline all your options and other things you can do to help yourself. I also note that there are certain times of year when my lymphoedema is at its worst. In the summer when the weather is warmer my lymphoedema troubles me most, but in the winter I can sometimes look at my feet and legs and say, the problem seems to have gone away.

I have serious problems wearing compression, with pain, pins and needles, reddening of the skin extra folds that evolve around my feet and legs which become sore indentations, sometimes my circulation feels like it has stopped, And at times I simply can't wear compression at all, due to sudden celucitis (an infection in the epidermis) or thickened skin that is cracking on my worst foot. That is currently being treated with a thick gel and antibiotics all prescribed from my doctor as the foot is really bad at the moment, itchy and sore with the cracks being very wide and each time I file my feet a chunk of skin falls away leaving me with a small hole or indentation.

At the moment to manage working (I teach and stand and sit a lot during my day) I have to put on a lint pad as a dressing on the side of my left heel and a light elasticated bandage to hold it in place during the day just to ease any rubbing from my shoes. Fingers crossed this starts to improve soon because until it does there is no way I can use my rebounder or my skipping ropes to stay fit.

[Hidden]

Your bad leg looks red. You may find that heavy compression to reduce the swelling may not be tolerable with continuing cellulitis. When I've had bad cellulitis in my lymphy leg it's been treatable only with massive doses of anti-biotics administered intravenuously. Is this the treatment you've had for it in hospital? Oral anti-biotics only may not do the job. The way forward may be to eliminate the cellulitis and then get fitted with made-to-measure heavy compression hosiery.

[Maggymo]

Hi MNM8674I can empathise with you regarding you not being able to see a Lymphedema specialist soon enough. I was waiting 2 years before I got referred to my local hospice clinic to see a nurse there. It was a younger GP in my surgery that finally recognised the symptoms of Lymphedema I was suffering from for years. I was not referred anywhere and advised to elevate my legs as much as possible. I had suffered for years with swelling and pain in both legs since having a operation on my spine.

I began to do some research online about the condition and saw a talk on you tube etc, this eventually led me to this amazing website too.

So many people are suffering with this condition without the support to help them understand about it and get help to treat it, and live with it both mentally and physical . I got my first set of compression garment last year after the nurse measured me but when they arrived they were too small so I was sent the next size up. It has taken great determination plus resilience to endure but the compression garments have helped. I have Lymphedema in both legs but my right leg is larger than my left so it was important to be measured. Before I knew what I had I used to wear pull on bandages on my right leg and tried wrapping several bandages but they’d get too tight and more painful.

I wish you all the best in getting the support you need to get the correct garment to help you.

Take care

[Oonagh1]

My heart goes out to you and I hope you find a competent MLD therapist to help you and fit you with the appropriate garment, be it in the form of tights or stockings, made to measure in the correct material. I know what it’s like to suffer the trials of lymphedema. I know it’s hard to lose weight when in such a predicament, but it’s worth having a go, please check for diabetes while you are at it. We need to support each other loudly and clearly so our voices are not drowned out by indifference or ignorance. I wish you the courage to make a start on the weight loss, a bit at a time, I am on that road too and it was a diagnosis of diabetes 2, on top of everything else that obliged me to do something, I came across a very good and helpful book with lots of valuable hacks , if you would like to have the title I can oblige. You will get your life back again, maybe not as it was but a good one just the same.

[penderwoods]

I'm so sorry! That looks very painful.

As others have said, it's ideal if you can find a therapist. But if you are on a wait list and/or don't have good specialists in your area, you can order supplies online.

I have found the wraps are really useful when you have one really swollen limb that needs to be reduced. bandagesplus.com/compressio...

Look also at the night garments with chip foam. They help a lot if you have thicker swelling.

I had many cases of cellulitis as well, but it has gotten better now that I've taken it into my own hands to order things myself to improve my tissue instead of relying on the doctors. I am in Canada and they don't offer you much help here, most of the doctors I have seen don't even realize there are compression garments designed specifically for lymphedema!

Don't wait! The longer it is swollen and the more infections the more damage in your leg.

[MNM8674 in reply to penderwoods]

Thank you I am going to look into that. A lot of the problem I have with the ordering supplies online is that they do not end up fitting. I was looking at that and thinking about getting the tall and extra large would that be big enough you think? I am 6'5 and my calf last time they measured it was over 40 in around

[penderwoods in reply to MNM8674]

Hmmm they all have a bit different sizing. Do you have your own tape measure? If you don't I would suggest getting one and measuring at your ankle, calf and length of your leg. Then you can match up with the size chart for the wrap you are interested in trying.

Maybe try this website compressionhealth.com/

They offer free zoom fitting sessions and maybe they could help you find the right garment and size!

[MNM8674 in reply to penderwoods]

Thank you so much

[roysome]

Have you used elastic bandaging? You can put it on yourself, but an experienced hand is better.

[MNM8674 in reply to roysome]

No I'm not sure what that is if you could tell me I would definitely try. I'm pretty much trying anything

[roysome in reply to MNM8674]

The best my leg has ever been was when I went private. The nurse ordered a leg wrap for me (calf) but then wrapped the leg quite tightly with elastic bandaging whilst I was waiting for the wrap to be delivered.

I kept this intact until the next visit the following week.

I had no discomfort in the interim, although I realise that some need to take compression off for sleeping.

[hshank]

My son, who has lymphedema in his right leg, also cannot find compression stockings that fit. He has tried custom garments but they also do not work (and are very very expensive). But the following have been of some help for him - he wraps his leg as much as possible daily (this took him a while to learn and get get it right). His exercise is limited to moderate walks. His diet is low fat, low salt. We also get a lymphatic therapist for mld. The problem with mld is that it is very expensive. He also tried many therapists until he found one that has been effective for him. Lastly, surgery may be an option - I would suggest that you contact Dr Ketan Patel at USC in LA if that is possible.

[kHP22]

I have a similar problem . I have had lymphoedema for twenty seven years and one leg is much larger than the other and as you say heavier and it affects my balance but I’ve had treatment throughout . I now have a made to measure thigh stocking to for treatment large leg abs I have other garments that I can use on my other leg but that only tends to swell at the ankle . I’ve had a total knee replacement on my large leg in 2019 as I have arthritis and they make the knee part less tight so it doesn’t put too much pressure on it . I pay for manual lymph drainage twice a month and look after my skin . I don’t take any supplements as I’m not sure that they make much difference . What you eat is very important and exercise . I use a wheelchair to walk with for long distance ( not to sit in ) but then I can sit in it if I get tired for a rest . This takes a huge pressure off my hips

Lymphoedema legs if different size

[RaDw]

I am so sorry to hear about this. I’m not sure if I can be of any help, but you’re not alone in this community . Take care.