I'm new here....

[DW13]

Hi my name is Dave. I was diagnosed with lymphodema in my left leg twelve months ago.

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[Lynora]

Welcome, Dave. 👋

[Pjdp69]

Hi Dave, my name is Jane. I have this frustrating problem in both legs. I haven't had any treatment, because I can't find anyone knowledgeable where I live.

Are you getting help? Where are you from?

[SuBee1 in reply to Pjdp69]

Pjdp69

Are you sure it is lymphoedema and not LIPOEDEMA ? LIPOEDEMA is bilateral, lymphoedema is usually on 1 side.

[Pjdp69 in reply to SuBee1]

Hi Subee1, I really don't know what exactly I have. The Dr's here know very little. For example..I waited a long time for app with a vascular Dr that my cardiologist referred me to. This Dr took one look and said, "Yip! That lymphedema. If you lived in Africa it would be called Elephantiasis, and it would be caused by an insect bite". So there you have it! I said I would never wear the hose, but I have started. I have such painful arthritis in my hands it's hard to get them on, but my left leg is getting really big. Thanks for your advice. I will take any you have to offer.

[Lynora in reply to Pjdp69]

Hi Pjdp69 - I see you are in California. I recommend you contact the National Lymphedema Network for details of HCP's in your area that may know something about both lymphedema and lipedema - lymphnet.org/ and also check out information about lipedema here - curelipedema.org/

[Pjdp69 in reply to Lynora]

Thanks Lynora, I will check that out. Since I'm older I tend to tell myself that treatment doesn't matter. I'm changing my mind. I do need some help. I'm actually in Oregon, but my new husband is from California. He wants me to go down there to Kiefer Permanente. Has anyone has experience there?

[catwalk40 in reply to SuBee1]

I have it in both legs SuBee1. Badly in right & less severe in left lower leg x

[CCT67 in reply to Pjdp69]

Hi Dave, you are not alone! I was diagnosed with primary LE in both my legs 15 months ago resulting in my needing to follow a strict regime of compression therapy, elevation, and daily manual lymphatic drainage/MLD therapy. My right leg has much more acute symptoms than my left and I'm trying to keep both from worsening. I've been told they will inevitably get much worse but I'm trying to slow the process down as much as I possibly can! The daily management programme I follow is strict and time consuming but worth it in order to delay progression of disease.

Is your LE secondary ie result of trauma to your leg or cancer treatment? Have you been referred by your GP to a local clinic (clinics are usually connected to a hospice) in order for garments and other advice to be given to you by the specialist LE nurse? Depending on what part of the country you are in it may be difficult to find a very local clinic but your GP can refer you. If you haven't yet seen a specialist nurse I think all of us with LE would advise that you try to.

The Lymphoedema network is also a good source of information.

Take care

Cat

[CCT67]

I don't want to appear disrespectful but do need to challenge the post about Lymphoedema usually being on one leg, not both legs. I am living proof that it's not one sided.

The ICG Lymphography scan (a specialist scan that looks at the pathology of LE limbs which is not offered on the NHS) was undertaken on my legs by Oxford surgeon Professor Furniss. Professor Furniss is undertaking LVA surgery on suitable LE candidates; I am unfortuantely not a suitable candidate as my LE is primary however for secondary LE the results of the surgery are very promising. The surgery is not available on the NHS as it is an experimental surgery.

A Lymphoscintigram scan was completed by the NHS 8 months earlier and showed some abnormalities in both legs. The ICG Lymphography is the more sophisticated of the two types of scans and it showed specific abnormalities in my Lymphatics (vessels, valves and nodes) in each of my legs. Thus the symptoms I was having in both legs. My right leg is more acute (more impaired Lymphatics in my right) however it was recently my less acute left leg in which I had Cellulitis!

It's a myth that lower extremity Lymphoedema is limited to one leg. Often it is only one leg, but for many of us it is both legs. I have encountered many people like me with both legs affected in a different LE chat room. The entirety of both my legs are affected so I have to wear full leg garments on both legs and look after both of them very carefully to avoid further Cellulitis infections in either/both.

All the best

Cat x

[JohnX1142 in reply to CCT67]

Hi Cat,

I fully concur with your view about both legs being affected.

In October (2015) I had both nodes removed from my groin area. I subsequently developed Lymphoedema in both legs. I have weekly sessions of MLD performed by a specialist therapist using the oscillator machine. I have had two bouts of Cellulitis; one in the lower right leg which was contained by early intervention having learnt from a serious bout around the abdomen which led to a two week stay in hospital.

I hope this helps if only to clarify.

John

[CCT67 in reply to JohnX1142]

Hi John

I'm sorry to hear that you developed LE following node removal and your hospitalisation/problems with Cellulitis.

Like you, I have weekly MLD by a specialist therapist who also uses the Oscillation machine during her treatment on both of my legs. I have my appointment with her tomorrow - it's the highlight of my week as my legs feel so much better/lighter after the MLD treatment (for a short while at least!)

Take care

Cat

[JohnX1142 in reply to CCT67]

Hi Cat,

Like you I'm looking forward to my MLD tomorrow and it is the highlight of my week too as I feel as though I've been fitted with new legs!

I wrote to Professor Furniss whom you mentioned in the hope that there was another or existing trial as I have secondary lymphoedema. Unfortunately there are no trial options but he did confirm my suspicions that GPs and other professionals do not recognise and/or understand our condition since it is covered by a maximum of a fifteen minute lecture piece at the very most if at all whilst they are at medical school. Apart from being unable to get the support from our GP practices this is also the reason why PIP applications are being turned down. This is so wrong and needs to be changed.

If it hasn't been done already, a petition to Government and the Department of Health may help.

[CCT67 in reply to JohnX1142]

I'm so sorry Prof Furniss turned you down as well for the LVA surgery. He told me it is more suitable for secondary LE (sometimes). Sadly, he and his colleague Mr Ramsden told me I'm not a suitable candidate for lymph node transfer surgery either. They said it will be a very long wait for a surgery to be developed or cure identified that would address the complex pathology in my Lymphatics (as one of my legs has a big section of the leg without any lymphatic vessels that should be there and lymphatic valves haven't properly formed/are failing). Needless to say I left my appointment with them in floods of tears!

I was just assessed by DWP for PIP benefit. On Wednesday last week the health assessor came to my home. My MLD therapist said 2 of her patients were approved PIP but that more often than not its declined. I have a secondary diagnosis made by Prof Mortimor and the Lymphovascular team at St Georges hospital London (called Erythromelalgia) which is exacerbated by the oedema from LE. I'm hoping that in light of having both incurable diseases affecting my daily life and functioning that I will be approved PIP. I have to wait another 4 weeks for the outcome of my claim to receive PIP. It's am ready been many weeks waiting for the health assessment finally completed last week. I want to use my benefit to pay for weekly MLD as its expensive but essential.

It's shameful that Lymphatics and Lymphatic diseases are not properly covered in medical school/programmes in First world countries.

Perhaps we should as you suggested start a petition to the Dept of Health - need to look into how to properly take that forward!

[Brandish54 in reply to CCT67]

I have lymphoedema in lower part of body from waist down anything from mild pain to severe pain that I cannot sleep . One thing I will say that I have had this very frustrating illness since I was about 40 I am 61 now . It gets harder as the years go by it started with right leg swelling slowing getting worse . I decided 6 years ago to go on a diet to try help as doctor said it would help I lost 25 stone . The ironic thing about all this is my lyphoedema has got so bad lately the swelling has got so bad I have had no end of treatment nothing helps . Before I dieted the only thing I had wrong with me high blood pressure controlled by tablets . In 2013 I was taken into hospital I was diagnosed with LBB left branch block ( the left side of heart was blocked) no treatment just tablets so operation are out of question

[CCT67 in reply to Brandish54]

H

I'm very sorry to hear of your health difficulties and that the Lymphoedema has worsened. It is known to be a progressive disease so I am trying with all my might to fight it. I was diagnosed 15 months ago. I turn 49 next month. My life has been turned upside down as a result of the LE symptoms wreaking havoc on my day to day life and time consuming daily treatment requirements (self manual drainage therapy) to slow down progression of the disease.

I doubt there are many (or any) people with LE who find it hasn't wreaked havoc on their physical and emotional functioning in one or in many ways.

I hope you can be referred to a LE clinic near you by your GP if you haven't already in order to be seen by trained LE specialist nurses Most GPs know little about the disease as they receive minimal medical training on the lymphatic system

Take care

[stevew99 in reply to CCT67]

Hi All,

Welcome Dave , I am new here too

I also have Primary Lymphoedema in both legs although the left leg is the most severly affected and also wear full leg garments on both legs and have to look after both of them very carefully to avoid further Cellulitis infections in either/both. My last Cellulitis infection was 14 months ago and was very painful. I am lucky though as I have an excellent specialist clinic who see me regulaly and have done so since 2000.

Kind Regards

Stevew99

[bigcalf]

Hi Dave

I have unilateral lymphoedema in the left leg, thought to be related to the stripping out of vein for coronary by-pass operation some twenty years ago. I live in Wales where there is a lymphoedema clinic in every health trust area. I agree the stockings are a nuisance, but they do help. If you can get an appointment with a lymphoedema nurse/physio they can help you with SLD (Simple Lymph Drainage), a self-massage session which takes about 10-15 minutes daily and which does seem to help. I was diagnosed in 2006; while my condition has not improved it is managed and life goes on with little change.

Good luck.

Big calf (and thigh!)

[AnneBury]

The Lymphoedema Support Network lymphoedema.org has plenty of information on its website and also a telephone helpline.

[Snaomi]

Hi Dave. Sorry to hear you have this desease. Start and maintain MLD. Where stockings regularly and rest when possible. I found when I don't have my stockings on regular, that my legs hurt more when I go to bed. So important to where them so leg doesn't swell and it helps with pain or uncomfortable feeling. Good luck.

[Jr1234 in reply to Snaomi]

Yes I feel the same if I stop wearing the stocking a day or two I get pain around the knee and ankle areas too. Sometimes have to take the stocking off as it causes the pain too

[Pjdp69]

Thank you, all of you! You are all so knowledgeable. I feel like I'm reading a foreign language. I've never heard any of these terms from a Dr.

I too have it in both legs and suspect it has moved to my belly. I think I went undiagnosed because they always blamed everything on being FAT, just calling it edma. I have lost 90lbs over the last 2 years but it hasn't really made a noticeable difference in legs and thighs. My stomach WAS actually getting flatter but now quite puffy. I'm soon going to have to find help. On top of the lymphedema I have deteriorating arthritic spine and scoliosis. I don't know old people got scoliosis! So I live with pain continually. I'm a newlywed, this time of life should be fun, good thing my new hubby is sweatheart!

[howdynina]

Here's sites to find a LE therapist in your area. Many are PTs within clinics/hospitals, others are massage therapists: vodderschool.com/find_a_the... or klosetraining.com/therapist...

[galtyboi]

Hi Dave,and welcome.