Unusual swelling with lymphodeema

[megs2]

Hi I have a tendency to get swelling on the outer aspect of my right thigh, the leg that gets the worst lymphodeema. I have lymphodeema which originated in the right leg, & gradually increased to affect my left leg & abdo, badly... Stomach can go up & down with fluid like I'm pregnant & then gradually disappear.. very obviously fluid. I also have generalised odema of unknown origin.For many years I wore the thigh high compression stockings & I began to develop an intermittent fluid lump like collection on the outer aspect of the r thigh near the stocking band. I stopped using the stockings as the right leg 'lump' is very painful when it collects & builds, so much so that it makes the leg which is disabled from spinal injuries harder to walk with. Recently I have been using frusimide (diuretic) for my generalised odema with great effect & Mary Ruth's lymphatic support for my lymphodema, which helps greatly. The last time this area of approx 4 X 6 inch swelling occured on the outer aspect of my right leg, it was warm, extremely painful & stayed, unlike previously..when it would disappear in a day or so. This time it was treated with antibiotics & the pain eased swiftly & returned when the antibiotics stopped too soon. Scans were done after several weeks & antibiotics long finished & showed no current cellulitis or signs of, but I've been on prophylactic antibiotics since. Tonight the side of my leg has blown up again & is very painful. Does anyone else get this odd kind of presentation with their lymphodeema or anything similar?

Many thanks, sorry that was long winded..

Megs

[violetta15]

I can only share what works for me ... I have lymphedema of the right leg for 5 yrs now and this is what I do daily to manage it.. I do wear compression garments, I wear capris and then a custom knee hi that has cushions for the ankles so the fluid doesn't collect there.

Every day I drink a tea, lots of it.. the main ingredient is Burdock root but I also add ginger, and in the summer I like Hibiscus ( Jamaica ) flowers and winter I use chai spices... Really, add anything you like .. I add sometimes Ayurvedic herbs,. just so long there is a good about Burdock root. Burdock is not only a diuretic but a lymph cleanser.. what happens with plain diuretics is that they remove the fluid but not the waste the lymph's system's job is to move and process.. The reason why Burdock root is so important is that your tissues won't be bathing in concentrated waste once the water is gone and less likely to get inflammed. Makes sense? All Doctors can do is prescribe drugs and there is no drug that does what Burdock root does.. you may think the limb looks better but the tissues are not being cleaned and the concentration makes it worse... Drink most earlier in the day, taper off towards night , try to have your last meal 2 to 3 hours before going to bed.. your lymph with thank you...

I also swim .. get in the water it is so freeing and relaxing, you are not toiling like other exercises especially the way I do it!!.. The water has compression so you don't have to exercise with compression garments on.. you don't get sweaty, you are not fighting gravity, and all your muscles are being used and that means the lymph is moving.. since the lymph system has no pump like the heart for the blood , it depends on muscular movement to get the fluid moving. You are also breathing with the moving .. lowering stress. I swim very slowly as if it was yoga... even on my back 50% of the time just flutter kicking.. I also like the breast stroke with frog kick, One stroke, one breath. I swim every three days or so for hour.. sometimes an hour and half. Your sleep will improve and your body can go into an effective repair mode.

I sleep with my leg elevated every night with a bunch of pillows... many mornings I can see the veins in my foot... that is a good sign...

I am using the least amount of salt, sugar, carbs I can. I eat lots of veggies, protein and full fat dairy..... Doctors mean well but they spend less time on the lymph than nutrition,, there is no doctor of the lymph and they have no training with the system... The best advise I got came from Naturopathic Doctors, Chiropractors, especially sports medicine as they are working with soft tissue and lymph a lot, and physical therapists who are trained in manual drainage therapies.. though I find the swimming more effective than the drainage massage, though good... it is passive in comparison to swimming. Hope some of this resonates and maybe find helpful!

[megs2 in reply to violetta15]

Thank you for all the information, I find diet makes a huge difference to my lymphodema & swimming helps but I have to get back to it as I stopped going. The burdock root is not one that I've Iv ever heard of, so I will look into that. I do get MLD & do some myself when things are particularly bad. I've noticed that my lymph nodes are way better since starting Mary Ruth's lymphatic support drops. Thank you for all the info.😊 Megs

[violetta15 in reply to megs2]

Thank you for mentioning Mary Ruth's Lymphatic support drops! I looked it up and I can get it online.. I can also recommend some drops by Vitality Works .. they use the Red Clover as well and combine it with occitillo bark ( cactus) and Stilingea root and Astralagus root and Ginger root.. Another good cleansing herb is Cleavers ... grows wild almost everywhere... All these can also be in tea form and added to the Burdock tea.. But what I would do for sure is combine it with things you like the flavor of .. ginger, hibiscus, spices so you drink it willingly.. burdock root has almost no taste as it is a white long parsnip looking root so I know if it doesnt taste good I won't drink as much as I do day in and day out... Best wishes !

[megs2 in reply to violetta15]

Thanks for the extra info. Although we are all different etc, I personally wouldn't stop using the Mary Ruth's ever... I have had one of the few/best results from it . I've mentioned it before on this site. If your based in the USA it's easy to get, from Ireland it's cheapest via IHerb, if you buy a few, there's no postage/customs. If you buy via UBuy... there's a postal charge. Best of luck with it.

[CCT67]

I’d echo much of Violetta’s sage advice re swimming, diet, fluid intake etc. Diuretics are counter-productive and contraindicated for lymphoedema, unless they’ve been prescribed for a heart or other non-lymphoedema ailment. Drink more pure water and herbal/non caffeinated teas. More hydration is so important for lymph health and lymph flow than than less hydration !! (Many GPs are unaware of this and are well- meaning when prescribing diuretics for lymphoedema but aren’t improving the patients longer term prognosis re disease progression) .

Are you being proactive with lymphatic diaphragmatic breathing regularly throughout the day? This is SO important to stimulate lymph flow/drainage from the feet toward the heart. Self/Simple lymph drainage (SLD) is also essential alongside diaphragmatic breathing. If you can access a fully qualified lymphoedema therapist to undertake MLD it’s advisable. It’s likely to bring you symptom relief, and your lymphatic system will only benefit from it (unless you have active Cellulitis infection in acute h case wait until infection subsides).

As lymph naturally re-accumulates, SLD and MLD are not one-off treatments. SLD needs to be done daily at minimum, even better 2-3 times per day. If you can’t afford regular MLD then have it as often as you can afford it; infrequently is better than never. MLDUK.org.uk lists qualified practitioners/search by post code.

If you’re able to tolerate therapeutic compression prescribed by a lymphie practitioner (nurse or therapist) then wear it as much as possible in the day. If you struggle with compression have you tried the Haddenham Comfiwave line? It’s great for night, and in the day for those who are house bound or work from home. It’s different from standing gradient compression needed to counteract effects of gravity when up and about all day. Patients who can’t tolerate circular and flat-knit garments can usually easily tolerate Comfiwave.

The lump you describe is likely accumulated lymph due to a blockage - if it can’t flow through lymph vessels properly then it pools in the area of blockage. Help it along with diaphragmatic breathing and SLD. The LSN has SLD tutorial videos on its website.

As we’re currently having hot sticky weather your symptoms will be ‘worse’ - for all of us our Lymphie symptoms are usually exacerbated by heat, humidity, and often when the barometric pressure is low. Taking steps to cool our effected areas helps be it with cold wet towel, fans, cool mats sold for dogs, finding a pool/swimming, getting into a cool bath for a soak etc.

[sleeviejeebies in reply to CCT67]

Lots of excellent advice! 👍

[megs2 in reply to sleeviejeebies]

Thank you for all the information, really appreciate it. I hadn't heard of comfiwave & will chat with my MLD specialist re it, as she fits me for compression when I can tolerate it. Unfortunately it triggers a lot of nerve pain due to my spinal issues. 😊 Many thanks Megs

[CCT67 in reply to megs2]

The Haddenham Comfiwave is unlike any other compression product out there and very likely will be tolerable as the compression is not firm and stiff against the skin/tissues like all other compression products are. It’s on NHS prescription so will need your GP to prescribe with prescription codes supplied by your lymph therapist . You could self pay if you wish but each garment per body part is very expensive ie well over £100

[Ola22]

thanks all for this very informative discussion on this blog. Really useful advice and information, some I had been informed about and some I hadn’t heard of.