Meds

[lizmurphy61]

Is anyone on medication for lymphadema or is it just the tights or stockings x

[Chocolate-e-clare]

Hi Liz - as a therapist, there have been no drug treatments in the past for Lymphoedema - prophylactic antibiotics are given to people with recurrent cellulitis; diuretics are a no-no for Lymphoedema (unless there is an indication for them e.g. Congestive heart conditions, fluid retention etc). There is a drug being researched at the moment which may boost lymphatic function - watch this space (in trial phase).

[Chocolate-e-clare in reply to Chocolate-e-clare]

And Lymphoedema management includes: compression, exercises, massage and self-care, And more - weight management, elevation, avoidance of hot tubs/baths/saunas etc.

[lizmurphy61 in reply to Chocolate-e-clare]

so you can't got for a sauna steam room or anything like that hubby was going to go to the sauna with me Thank you for that x

[Chocolate-e-clare in reply to lizmurphy61]

Please avoid sauna/steam rooms/hot tubs. The heat overloads a compromised lymph system and causes increased fluid leaking into interstitial space. Taking hubby into the pool for a jog in the deep end, or for a romantic walk in the park, wearing your compression. Good for both of you. You can do this! Xxxxxoooo

[craftinglady in reply to Chocolate-e-clare]

HI you just have to follow your method and it works.

[barney22 in reply to Chocolate-e-clare]

I am on diuretics as I have fluid retention as well. It was interesting to hear chocolate -e- Clare mentioning prophylactic antibiotics for recurring Cellulitis. My last bout was horrendous I was lucky not to loose my lower leg. My GP will not put me on prophylactic antibiotics as he had not heard of people being given them. Can the Lymphedema Clinic advice that I am put on them for life ??

[Whitesugar in reply to barney22]

Take your GP the 'Consensus Document for the Management of Cellulitis in Lymphoedema' available to print out from the LSN or BLS websites. It is common practice to put patients on prophylactic antibiotics who have two or more episodes of cellulitis in a year, often with prompting from a Lymphoedema Clinic. Treatment is recommended for 2 years, but it's all in the document.

[barney22 in reply to Whitesugar]

Thank you I will do that.

[Brandish54 in reply to barney22]

My doctor put me on phenoxymethylpenicillin 2 tablets twice a day due to cellulitis recurrence and the fact it knocked me for six for about ten days and after it had cleared up I still was not myself for a couple of weeks now I just feel rough for 7 to12 hours when it starts to flare up then the tablets stop it getting worst I am on these tablets for life

[craftinglady in reply to Brandish54]

So am i --I took 4 a day for a year and then they reduced it to 1 a day.

I think it works as last week my dog jumped up on the sofa beside me and his claw went into my leg.

It bleed a lot i put on a muslin ANTISEPTIC patch and bandaged and it healed fine. In the past i would have had the start of Cellulitis and have had antibiotics for this . Hope this helps.

[Hidden]

Hi. Because I had 2 bouts of cellulitis in 6 months, I was put on low dose antibiotics to prevent it happening. I am on them permanently. As Chocolate-e-Clare says it is alsi important to do exercises etc which you should have been show how to do xx

[CCT67]

Hi Liz

I've seen a number of your posts and that your getting to grips with having Lymphoedema - I know (as do many others) how exceptionally difficult it can be accepting that we have Lymphoedema and that there is no known cure, not yet, and that there is no medication to treat or reduce the unpleasant symptoms. It's not like other diseases which have been long researched and drugs have been developed for them. Lymphoedema cure research is in its infancy compared to other diseases but in the last 2 years lot more money has been committed to research - take a look at the Lymphatic Education and Research Network/LERN if you are interested.

The only way to manage the symptoms is through daily compression therapy and manual lymphatic drainage along with lymphatic friendly exercise eg swimming, walking, rebounding. It takes a high level of commitment - not like 'popping a pill' which would be much simpler and take less time. We all have days where we wish we could simply take a tablet instead of put on compression garments and do drainage therapy. It can be hard to accept. You are not alone - we are all living with Lymphoedema and turn to each other for emotional support

Cat xx

[lizmurphy61 in reply to CCT67]

Thank you for that I am having a hard time accepting it I will just have to get on with it hubby said the same get used to it but it still reduces me to tears.I think its because of all the other health issues I have it just feels like when am I going to get a break x

[craftinglady in reply to CCT67]

How right you are I had swollen legs since the birth of my first child and i am now 72 but the number one thing we have to do is cream protect and light exercise and if like me you get cross with the cards you are dealt that sometimes helps as well.

[sammyvan in reply to CCT67]

Hi Cat, very interesting, reading your post here.

I keep hearing about MLD, and you also mention ''drainage therapy'' as part of the treatment. I have the compression garments, also have bandages for my feet. There are absolutely NO treatment centers, no clinics .....nothing in my area for Lymphoedema. The district nurses who manage my treatment are also still learning all the ''ins and outs'' of this disease, so we are muddling along together at the moment! The doctors don't seem to be particularly interested - more concerned with telling me to loose weight! The Lymphoedema specialist nurse comes down from Liverpool, twice a year, to see how my treatment is going.

What exactly is MLD, and is it something I could learn to do myself, at home? I never leave the house, so if there is something I could learn to do, to help myself, it would be great. I also have very bad arthritis in almost evry joint, hence the not going out. Just too painful.

Any advice from you lovely people would be much appreciated - I have already learnt so much from this forum.

[CCT67 in reply to sammyvan]

So sorry to hear you have no local resources and that there aren't knowledgable medics - it's important that Lymphoedema is properly managed but it sounds like although you have little support you are still doing really well coping with it.

There is something called Simple Drainage Therapy SLD which is a version of Manual lymphatic Drainage/MLD that we can do ourselves on the affected limb/s. I do it 2-3 times per day to drain built up lymphatic fluid (lymph).

The best instructional videos are on utube and I'll attach the links below. They are the best videos (there are quite a few on the web) in my opinion as the instruction is accurate and given by a qualified MLD therapist. Doing SLD incorrectly can lead to potential problems so proper instruction is essential.

It takes practice to learn how to do SLD. And it's not something that can be rushed - I take at least 20 minutes per limb. It's vital to learn how to do the diaphragmatic breathwork as this must be done to drain/empty your trunk before draining your legs into your trunk.

The first 2 videos below focus on abdominal lymphatic breathing, the third is SLD for the legs

blog.massagebyheather.com/l...

m.youtube.com/watch?v=UCtoV...(Not working as expected?)

m.youtube.com/watch?v=ZLyT_...(Not working as expected?)

[lizmurphy61 in reply to CCT67]

Thank you for your help x

[sammyvan in reply to CCT67]

Thank you so much for this video. Watched it twice already - I am sure I will be able to follow the instructions. Unfortunately I had some blisters on both feet, which have now become infected and both feet are red, hot and slightly puffy! The dreaded word, Cellulitis is lurking - I have spoken to my doctor and have increased my basic dose of Clarithromycin from 250mg once a day to 5oomg twice a day. I will wait until the infection is under control before trying the massage. Wish me luck!

[elliejoy-warwick in reply to sammyvan]

My mum has district nurses coming in twice a week (was three times a week) to bandage her legs. Luckily (or unluckily!) there is another woman who also has lymphoedema so they are now looking at having training so that they can dress or treat her legs correctly. Finally feel like we are getting somewhere! Best clinic for treatment is in another county and the local hospice will not treat her because her cancer is historical! Let's hope the research kicks in and it becomes more well-known and treatable. My mum also has osteoarthritis in her knees so going out is a no-no, except in a wheelchair. The GP prescribing cream and antibiotics has never seen her legs! Good luck to all with this disease.

[sammyvan in reply to elliejoy-warwick]

Hi Ellie - your mum sounds like my twin! Not sure what area she is in, but I am in Bournemouth. Can't praise my district nurses enough - they have gone out of their way to learn as much as they can about Lymphoedema, trying to help me and others they are coming across. I believe two of them have now gone off on an intensive course. There is one clinic here that helps with this disease, but the patient has to have had cancer. I have not - my Lymphoedema seems to be genetic - my mother and Grandmother also had it. [Though never diagnosed as they did not know about it then ]

I also never leave the house - mainly because my arthritis is so painful and makes any movement agony, but also because my legs are so large and unsightly [ even in wide leg trousers ] that I am too embarrassed to go out and have to hear remarks made about my size. For years I tried to diet, could never understand why the weight from hips down would not budge! My top half is almost normal, while the bottom half resembles a Hippo! Folk don't understand how it hurts.

It's the Doctors who have to get behind us, learn more about the symptoms and ways to help. It's frightening how little some of them know - and mistakes they can make, unintentionally.

Good luck to your mum

[Julia-25]

I have just sent you a private message.

[barney22]

Does anyone get the feeling that liquid is running down your legs. This happens to me more and more but there isn't any thing there.

[PenelopeW in reply to barney22]

Yes. Through the whole of my dressings period on both legs. Have today finished treatment at the Leg Clinic and they work miracles. Within two weeks they had the swellings down and infection cleared, then it was just a case of waiting for the lesions to heal, for new skin to grow on my legs. Most odd though, the sensation of water running down the legs. Think it must be the nerve endings healing. I had breast cancer and a mastectomy nearly 2 years ago with very little pain. The pain in my legs was horrific and many nights I was walking round and round to ease the pain and try to wear myself out to get some sleep and not lying down until about 6 - 7am.