soreness with lymphoedema

[salamander160]

Hi, I have lymphoedema, my legs are very swollen at times, my left leg is very sore, is this normal with lymphoedema, could this be something else, do you get tissue damage with lymphoedema? nothing seems to help the soreness. Thanks.

[CCT67]

Hi Salamander

Sadly, our limbs by definition are swollen when we have Lymphoedema. In my case it’s not confined to a limb or two, my entire body is affected. There’s no getting round the swelling but learning how to do Simple/self Lymphatic Drainage SLD And then doing SLD 1-3 time’s daily really helps alleviate the discomfort LE causes so many of us. Although many uninformed doctors/health professionals say LE is not painful, both patients and LE specialists are quick to confirm that indeed it can, and usually does, cause discomfort to extreme pain. Limbs can feel heavy, tight, aching, itchy, prickly, throbbing, sore etc. The lucky few who have no discomfort or pain are just that, lucky! And rare.

Unfortunately LE is progressive. It’s classified as a disease and is staged (stages 0-3) depending on how advanced it is. The more advanced the more affected the subcutaneous tissue is as a consequence of cellular and molecular changes that occur. Also the skin of the affected limb/body part becomes more thin and fragile over time. Very advanced LE is often referred to as elephantiasis, the affected limb/s are extremely large and deformed.

Are you under a local lymph Clinic? Your GP can refer you if not . The more proactive the patient is with self-treatment, disease progression can be slowed either a lot or a little, depending on the diligence of patient self-treatment. Self treatment includes compression therapy, meticulous skin care (to avoid bacterial infection Cellulitis that can lead to sepsis), SLD, daily lymph moving exercise such as swimming, waking, Tripudio (great for patients unable to walk), yoga, physio exercises etc, and ideally regular MLD by a qualified lymph therapist. Many of us have regular MLD that we pay for privately; sadly it’s not universally available on the NHS . You can find qualified lymph therapists by postcode search on MLDUK.org.uk.

Part of self-treatment also includes being mindful of our weight and diet/nutrition, as many types of foods/ ingredients exacerbate LE symptoms. Excess weight exacerbates swelling and pain due to the additional pressure it puts on the lymphatic system. Certain foods are known to cause swelling flares in many patients, such as salt and alcohol. There are 2 brilliant books written by internationally well respected lymph specialist doctors and therapists.. The content is based how the lymphatic system functions (bearing in mind the digestive tract/gut is where the lymphatics start) as well as clinical research. Take care, catherine

fishpond.co.uk/Books/Comple...

fishpond.co.uk/Books/Lymphe...

[salamander160 in reply to CCT67]

Hi Catherine, My Name is Adrien, It is interesting what you write, ok my lymphoedema is caused because I am in a wheelchair, therefore I have poor circulation, I am also recovering from an injury, just over a year ago I dropped a pan of boiling water over my left foot and toes so the burn is still healing. my doctor put me on gabapenting, although it works a bit I think, my wound is constantly leaking fluid, after the year I am sick of my foot stinking, it is an unpleasant smell, I can't wear anything on my foot i.e. socks, so my foot is cold. It wasn't just water but it had meat juices in the pan too so that made it worse. I also have an ulcer on my right leg as a result of cellulitis, I have decided to stop taking all my medications that cause fluid retention as a side affect, yes my gp does know what I am doing. I have had pain in my whole lower leg, nobody knows what causes it, sometimes my leg is swollen for months, sometimes I may have no swelling for a year or so. In my case I believe something triggers the lymphoedema, or makes it worse, i guess each time my leg swells up, the skin stretches, when the fluid goes away, the tissue is damaged a bit more each time. With my burn there will be nerve pain but I don't think this is why my leg is hurting so much, I am not able to exercise it i.e. swimming, but I have been in a wheelchair since I was very young, I had encephalitis when I was 6 years old. stopping the meds, it is a cruel choice, with gabapentin, I either have no pain and fluid or no fluid but pain, I need my wound to heal so I can start swimming again. I agree with you regarding some foods, I feel bloated at times when I eat bread. I had an mri scan done on my left lower leg a few weeks back, there was no sign of anything nasty, no inflamation, no infection, just a lot of muscle atrophy, I suppose that can hurt too. Oh well see what happens now I am changing my medications. Nice to meet you on here. take care Adrien

[Anne16]

Hi there, I have primary lymphoedema (born with it) in both legs and both feet. At times my legs and feet are so painful am unable to tolerate my prescription hosiery. I do have tissue damage - from recurring bouts of cellulitis, bruising and also the amount of swelling, which has left the skin on my legs quite 'warty' and discoloured. I have always been scrupulous with hygiene, monthly chiropody and moisturisation. Nothing improves, but it does keep major bouts of cellulitis at bay. I wish you well, and do take care. 🦋

[salamander160 in reply to Anne16]

Hi Anne, no cellulitis is not nice, I had my first bout at the end of 2017, i was in and out of hospital several times the following year or so, then it all just stopped, I have been on antibiotics profalactic since then and also until my recent injuries had to wash my legs with dermol 500 lotion and use gorse swabs not flannels as they are abrasive, but it works, I live in supported living, some carers are very gentle and some a bit rough, all it takes is a tiny nick in the skin between my toes and I have cellulitis again. I am alergic to penicilim so have to have antibiotics by i.v. in hospital. I always think there is somebody worse off than myself. You take care Adrien

[violetta15]

When you were diagnosed with Lymphedema, didn't they help you with understanding that it does progress and yes the tissues become inflamed... Please try to get compression garments, sleep with your legs on pillows so higher than your heart. Drink a lot of water. I make a tea of herbs: Burdock root, Ginger, root, Dandelion root, and Turmeric root and add anything for flavors.. Hibiscus or Chai spices etc and drink gobs of it! Hope this helps.

[violetta15]

I also wanted to share that the best thing that has helped me from the progression is swimming .. I now swim every day and the movement, breathing and the compression of the water.. That and my tea... the garments and legs elevated are important too,,,

[salamander160 in reply to violetta15]

Hi Violetta, Yes the lymphoedema with me comes and goes, i can be clear of it for long periods. I am stopping one of my drugs, the oozing from my burn is drying up, it was very bad for a while. They have given me compression garments, I used to like wearing them, my right leg is a bit swollen but is no bother at all, my left leg and foot is a nightmaire, I have the burn on my foot and a very painful lump or swelling on my ankle, or on my carf, they don't know what the lump is, but it is very painful it went away last week but came back after they bandaged my leg again, the pain goes right up my leg, there is no way I can tollerate anything on that leg for a while again now. The swimming would be good if it wasn't for the burn.

[violetta15]

Oh the thread didn't include about the burn.. I am so sorry! healing a burn is complicated with lymphedema.. Your lymph is having to work too hard dealing with the burn... I wonder about foot bath in aloe vera? they give food grade aloe vera to people with ulcers..you can get it in health food stores..and it may feel soothing? not a drug so might be worth a try... that is interesting that Lymphedema comes and goes! I have hear that with primary but not secondary... I would concentrate on healing the burn so the lymph system can calm down .. it is in overwhelm....then do get in some water....best wishes...

[salamander160 in reply to violetta15]

Hi Violetta, ok will look at the alovera, I need something. My doctor wants me to stop taking opiates but I need the pain relief, I have found that gabapentin makes me retain fluid so have tried to stop taking it, but the nerve pain has started again and my foot has started oozing, it had dried up once I stopped the gabapentin. I cannot win, it is a real struggle right now. I need to find an alternative nerve pain medication. Ok thanks for your help, best Adrien

[violetta15 in reply to salamander160]

just saw your reply! Let us know how you are doing!

[salamander160 in reply to violetta15]

Hi Violetta, not too bad, still in pain but am seeing pain clinic in a weeks time.

start full lower limb compression tomorrow on both legs, not looking forward to it but need to clear things up. am only on two gabapentin now, things have improved a lot, not so weak for one, it is a strange drug. Thanks for asking after me