Newly diagnosed with lymphadema

Hello!

After a year of chasing a diagnosis for my swollen calf/ foot I have finally been diagnosed with lympphadema. Devastated. I am 50 never had this problem before - except when pregnant and the Dr says it is hereditary? How can that be? She also says stage 2 but the swelling mostly goes away after a nights sleep so does that mean she was wrong ? So confused!

Do you have to wear compression tights also? And does it matter if they are half or full leg? Finding it all very hard right now.

56 Replies

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  • Hi, sorry to read of your diagnosis, have you been referred to a lymphodema clinic for measuring and getting the correct compression garments and advice on MLD, if you haven't been referred you need to chase that up with your GP, good luck x

  • Agree with Jennymary that you need to be referred to a Lymphoedema clinic where you will be fpgiven advice and guidance about what is right for your situation. Are you in the U.K.?

  • I am in France at the moment and what has been suggested to me in the way of treatment at the moment is manual lymphatic drainage plus the compression machine twice a week for two weeks then once a week but not sure how long for?

    Does this sound like a good first treatment to begin with? I'm not sure if I get to see a lymphatic nurse here as yet.

  • I have put a comment below, about Daflon.

  • Thanks Lynora

  • Hello Hashi-too. I live in France too. The hรดpital Cognacq-Jay in Paris is very specialised. They are the national "centre of reference". You might investigate having a consultation there. I am followed by a doc there and I have benefited from stays for bandaging, therapy, etc.

  • Hi discover is it ok to message you for details? Much appreciated

  • Sure. No problem.

  • Hello Hashi-too. I live in France too. The hรดpital Cognacq-Jay in Paris is very specialised. They are the national "centre of reference". You might investigate having a consultation there. I am followed by a doc there and I have benefited from stays for bandaging, therapy, etc.

  • Hello Discover!

    Thank you so much for the reply. I am not in Paris I am near poitiers at the moment. Very interested to hear about the bandaging etc as it hasn't been offered to me here. What is your experience of this treatment and was it super expensive?

    Many thanks

  • Hi there. I took the TGV to Paris. Poitiers to Paris on the TGV is even faster than for me - only about 1 1/2 hours. ๐Ÿ™‚

    The treatment is full "hospitalisation" for 12 days, with treatments every day M-F. Bandaging 24/7. Bandages are changed daily by your physiotherapist. Exercise with the bandages on, patient workshops on various topics (extremely helpful if you are new to living with this this), appointments with podiatrist, pedicure, nutritionist depending on specific needs. While there you will be measured for new compression, which will be delivered on your last day.

    If you have a French "carte vitale" it is mostly taken in charge. Otherwise I don't know the cost - you can ask them. I think it was around EUR 9,000, but not too sure so don't quote me on that. You will pay on too for private room fees, telephone if applicable.

    I hope that helps.

  • Hello, full leg stocking is better than half, it's hard, I'm still chasing for treatment, I found online in south Wales they do supermicrosurgery, is all depends if you fill the criteria, you need to chase your Gp, you might need to see lymphedema clinic. On my situation they refused by NHS to give me the Surgery because I'm 35 and never had other medical conditions but each case is one case, you have to try everything. I suffer since I was 19, but only about 3 years ago the vascular nurse in wrexham Maelor said is lymphoedema gave me the stoking but is frustrating because they refused to give the op saying that 'you can manage ',because is all about cost/cut. I'm looking now for surgery in others Countries which cost a bit less money. Take care be strong

  • Hi, I'm not sure if you are aware that LVA aka Supermicrosurgery is undertaken in Oxford by Professor Furniss and Mr Ramsden. This is not on the NHS but neither would having it in a different country. In Oxford, in the first instance you'd be assssed for suitability as you need to have lymph vessels to attach blood vessels to for the op to be viable. The assessment, including ICG Lymphography scan costs ยฃ650 and the op is ยฃ17K. From my own experience being assessed by Professor Furniss and his team for LVA in 2016, they are very patient centred. I recommended getting the assessment, as the ICG Lymphography scan tells you what the faults are in your lymphatic structure in the limb with more accuracy than another scan currently available, and can inform suitability for all the current ops available for LE symptom reduction x olp.surgery/procedures

  • Thanks amordemae

  • As a side note before I got this diagnosis I was given Dafflon which does actually help with my swelling and my legs are definitely better (than normal) during the day and the morning after I taking them. Does anyone else use this.

  • Dalton is prescribed for venous insufficiency, which may account for why your legs are better in the mornings. MLD may help, but you will still need compression for the lower legs to help the venous return.

  • I don't have venous insufficiency I have had a Doppler etc to rule that out, however I do have lymphadema and Daflon gives me some relief.

  • Lynorna, just having a read at posts, as usual, to learn more. Is it Dafflon or Dalton.

  • Daflon.

  • Sorry for late reply Lynora have not been too good. Many thanks for replying to me.

  • Has anyone tried Pycnogenol s that of any benefit?

  • I also have primary LE diagnosed age 47 after becoming hugely symptomatic at age 45. It's in both feet and full legs with my right being more severe (no lymphatic uptake at all)). I highly recommend you wear flat-knit compression garments (bespoke/prescription in the UK) to address the symptoms and prevent more swift progression of the disease. Down the line it's irreversible so prevention/slowing it down is essential. Lymphoedema is classified as a disease and the psychological and social adjustment to being diagnosed with it is huge and underestimated by most in the medical profession. You are not alone in feeling devastated. And you are NOT alone trying to cope with managing it- there are brilliant closed patient support groups on FB both UK and US. Take a look and join if you like, and rely on all of us with LE for emotional support ๐Ÿ˜Š xx

  • Thank you so much CC will take a look at facebook groups too.

  • There are a few groups that are particularly supportive especially helpful for newly LE diagnosed:

    Lymphie Strong Inspiration Group

    Lymphedema - support awareness

    Ladies living with Lymphoedema UK

    Lymphoedema Communty

    Also, excellent websites for education about Lymphoedema which also have links to great blogs:

    Lymphatic Education and Research Network (their library of web symposiums is brilliant and incredibly informative, and all free )

    Lymphedema Guru

    The Lymphie Life

    Lymphoedema Support Network/LSN

    The American spelling of LE doesn't have an 'o' in it hence the two different spellings! Give yourself time to come to terms with your diagnosis - it's ok to feel sad, angry, frustrated, depressed.... lots of emotions. Everyone with lower extremity LE goes through a roller coaster of emotions since our legs give humans mobility and with LE (especially severe cases) our legs don't allow the freedom of movement we once had or would like to have. I try to live life as fully as possible but do have to be cautious I don't push my legs too hard each day, and from Cellulitis infections. Having LE is a huge adjustment - the FB suppprt groups and websites above helped me enormously. Cat x

  • Hi Hashi-too, that sounds like me, I had swollen feet, ankles and calfs for 4-5 years and was put on naproxen thinking it could of been related to my arthritis and then water retention but then in Aug last year after going backwards and forwards to the docs finally diagnosed with edema below knees to my toes and lymphoedema above knees at the age of 50 now I have to wear full leg compression stockings. So fed up especially in this heat.

    You have came to the right place everyone is fab on here always happy to support you and give you the best advice.

  • Thanks Bev much appreciated

  • Hello Bev-1966 and Hi Hashi-too. Bev-1966, I have had it to my knees (also ankles and feet) now for a good 10 years, now you have said it can get further? I know first thing in the morning my wrists & hands are all puffy and quite often my eyes "cry" and can not stop them. Do you think that this may be part of the Lymphoedema, or just me?, also .

    Hashi-too, please do not worry people on here are absolutely wonderful at supporting , caring , if you need someone.

  • Hi completely. I found your post by accident, and felt I had to comment because my eyes also 'cry' every morning, and at odd times during the day too! I also find myself dribbling whilst sleeping (surely that can't be connected???), and wake up with a wet pillow! I told my doctor about the dribbling, but he'd never heard of it happening before - from LD (it began pre-diagnosis) nor anything else! ๐Ÿคค

  • Hello Hopalong, I am an accident and am very pleased that you have commented. Yes my eyes "cry" most mornings and am I pleased you mentioned the dribbling whilst asleep, coz nearly every morning when I wake up my shoulder is wet through and it is very wet right through my pj top and onto the pillow. It has been happening for some time now, I know it is not my teeth as I had 4 taken out a couple of months ago, teeth are o.k., now (touching wood). I think that was down to all the medication I have to take & because of all the tabs & morphine I have to take Lactulose which is horrid, so sweet & sickly.

    Going back to the crying and the dribbling though I have wondered too if it has anything to do with what we have, are your eyes and lids all puffy too? I know, I think, that Lymphoedema can come out from any part of the body, which also makes me question why I have to get up several times nightly to have a wee, and if it was measured it would probably be at least half a pint each time, but it is just clear water and nothing else. I can not understand it. Does anything like this happen to you?

    I hope Hopalong someone may be able to throw some light on this as no good asking my Dr., he is adament that everyone is all ancient and these things happen when you get older. Bloomin cheek.

    Very pleased you read this as you feel so alone when you ask some questions. Thank you and fingers crossed we find out..............xxx

  • Oh completely, that's exactly the same as I have! I'm also on loads of different meds - Morphine Sulphate Tablets, Oramorph, Naproxen, Pregabelin, Paracetamol, Levothyroxine, Lansoprazole, and I therefore need Senna and Lactulose!!!

    I'm also back and fore to the bathroom all night and it's just clear liquid! I'm sure it's also more than I drink all day?

    There MUST be a connection! What on Earth is happening to us??? ๐Ÿ˜ฒ xx

  • Dear dear Hopalong, it is kinda eerie, me's on 30 tabs, morning, lunchtime, tea time, bedtime. They are M.S.T x 6 (slow release morphine), yep the Oramorph, levothyroxine, clonazepam, diazepam, Gabapentine x 8, Baclofen 8, another antidepressant x 5, pill for stomach to stop any bleeding from this lot, and 2 others which I can't spell without looking at prescription. I rattle.

    Was up again last night but only just made it, wet shoulder and they are big patches of wet. Just can not think why it is only like water though, no colour whatsoever. I am the same as you too, far more than I drink as well and I love Yorkshire Tea (bags)

    I whole heartedly agree with you there has to be something going on with us, I just hope that someone reads what we have both been talking about and comes up with the answer!

    I am so relieved that you read the post and replied, it is so good to know that you understand coz you are in the same position as me. I too want to know why this happens and I am pleased that we can converse about this thingy too

    So we will ask if anyone from anywhere knows what is going on with us please.

    Lovely to hear from you Hopalong, take care, expect I will be back here over the weekend or before.........xxxxxx

  • Between us we could start a Mariachi band - we're like a pair of maracas! ๐Ÿ˜

    Another strange symptom I have, is a runny nose! It happens when I get up - with the runny eyes - and when I'm eating! It's like my nose runs instead of my mouth watering?? Yet at night, I often wake up with a very dry mouth/throat, and use Vick's Vapo Spray (Sea water - Hypertonic vapourizing nasal spray), as I find it so difficult to swallow? At least some part of me is dry...? ๐Ÿ˜Š

    It must be something to do with the tea - I'm a tea-drinker too! :) xx

  • Hello Twin, Nose o.k, apart from when I have been in the garden then it runs. Yep, mouth as dry as dry and job to swallow first sip of tea. Guess it is all that dribbling we do!

    Ha, Ha, what about dry skin? that is part of me that is dry and it cracks no matter what I put on it, even use Dove shower cream, Dove soap, as it is quarter percent cream !!!! Dr prescribed Cetroban for my legs and that I put all over them and feet, but my heels have cracks in them like the Sahara Desert all the time. I long for lovely smooth heels.

    Any tips for keeping heels smooth, greatly appreciated........xxxxxxxxxxxxx

  • Hi completely. The first thing the doc gave me when I showed him the dry skin on my legs and he said I had LD, was Doublebase Gel. It's basically liquid paraffin. Fortunately for me, wearing the Sigvaris stockings seems to have worked for it, so far? Maybe massage with liquid paraffin could do something for you, or coconut oil? It sounds really painful!? ๐Ÿ˜ฏ xx

  • Evening Hopalong, sorry for late reply, look forward to chatting about the different symtoms as we seem to be identical in lots of ways. I will have to see if he will change mine, other wise my feet, elbows will be like the Chedder Gorge. What are those type of support stockings you have, are they like the rest Nora Batty style? Mine are, really fetching, I don't think, and a complete nightmare to get on even with the help of the thingy you get with them. What a relief when they come off. Wonderful feeling.

    It is good to hear from you and hope you are as well as can be. Sweet dreams - Yorkshire tea and plenty of cups.........xxx

  • Hi completely. I have the Sigvaris stockings with a 'Rolly' - the extra thick type which will virtually stand up on their own..?! My Nurse gave me particular instructions that I must NOT allow them to get like Nora Batty ones, and should pull them up if they slip! Trouble is, that because the nobbly bits on the gripper band give me a rash, I wear them inside out, so they do tend to slip by the end of the day? ๐Ÿ˜• As you said, It feels soooo good to take them off! ๐Ÿ˜Œ

    I've somehow managed to get an insect bite on my left ankle - my worst one! I think I'll have to watch it carefully...? I've been putting teatree oil on it which does help stop the itch, but the swelling looks quite bad - on top of the 'norm'? ๐Ÿค”

    Your message has only reached my inbox today! I think this PC is running on coal? It needs a cup of tea pouring into it, and I think I need some intravenously! ๐Ÿ˜‚

    Any plans for a day out? x

  • Oh Hopalong, and all it is really good this site is here, boy I am so so low, have been and still am having a battle with our council. The problem? Flying ants in my wet room. Hopalong you must have been reading my mind or something because I was going to ask LSN if you got stung by something is it dangerous to us? I was just this minute going to ask and saw your post. I really do hope that your leg is not swollen up? What on earth have you been doing to get a bite? You should be indoors having that cup of tea now.

    Now don't go pouring a good cuppa into a machine, well it could be a good idea!

    Our council just don't wanna know, oh put some ant powder down said one, but it is in a wet room and the ants are behind the tiles in the cavity wall! I have put a complaint in coz I do not want to get a bite or stung by a flamin ant(s) with wings and end up with cellulitis, they just will not listen.

    Hopalong, a day out?..........Could do with a year out.

    Look after that leg......xxxx

  • 2 nights ago I was really hot in bed, (temperature-wise, nothing else - those days are long gone! ๐Ÿ˜‰), and kept kicking the duvet off me! We had the windows wide open too, and I think something could have flown in? It would have either been then, or in the morning before I got showered and put my passion-killers on? Other than that, it must have been a midge crossed with a sabre-tooth tiger to get through my stockings! That's how long I've had the bite?

    But seriously, yes, I've read we have to be very careful of any bite, cut or scratch where an infection could get in! At the moment I'm still on the Metronidazole for my Pilonidal Sinus, so I hope that will help, but it still itches and needs watching for any problems...!

    If I were you, I'd get on to your Nurse and/or doctor about those ants! You can't afford to risk it, and Councils need a rocket up their offices before they'll move! xx

    Time for tea! ๐Ÿ˜Š

  • You certainly are a tonic Hopalong, Hope your leg is o.k, this weather is way too hot it is so fierce, not like when I was a child, nearly 55 years ago when you could get up early and literally smell what sort of day it was going to be, summertime. Sun was not so fierce. The heat now on you burns red hot. I keep out of it. Just hope that your bite has not got any worse.

    You right about the local councils though, well it is the landlords that manage their properties. Should not say it but if I was different then I bet things would be done a.s.a.p. It is not fair, also think it is time that the Enviromental Health realised that flying ants are a "danger" to people with Lymphoedema/cellulitis and it is a health hazzard. Makes me so cross.

    Time for a cup of tea, or I will be emailing them and telling them a few facts.

    Just be more careful with your bedding, who were you dreaming of????...........xxxx

  • The sun is more dangerous because of the depleted ozone layer? Youngsters who burn now don't realise that skin cancer will be far more likely in years to come! ๐Ÿ˜ฌ

    I don't think there are many people who know anything at all about LD! I'd never heard of it 'til I got it, and wish I hadn't! โ˜น Use your 'crossness' on the Council to get something done for you, and let me know how you get on? There are times when tea isn't enough!

    Me? Dreaming of someone? I have all I want, and more, lying beside me and snoring for Britain! I need to sleep before I can dream! ๐Ÿ˜‚๐Ÿ˜‚ xx

  • Hi completely-zero654, I had terrible watery eyes so went to eye infirmary and had blocked tear ducts so I had the DCR opp where you have tubes put in for 6 weeks to make tear duct hole bigger but the right side of my nose was narrower than the left to get instruments up so I had to have septoplasty where they take a bit of bone out which left me with a massive black eye the first black eye in my life and after 6 weeks I went to get tubes removed and they couldn't find the end of the right one to take it out so I had to go in on my 50th birthday to get put back to sleep so they could get it out.

    Great 50 th birthday eh ๐Ÿ˜ณ X

    But guess what I went through that and my eyes have returned to normal watering all the time so I went through that for nothing ๐Ÿ˜ค X

  • Oh no Bev! Completely and I have been messaging about this, and we were hoping someone would come up with a cure/answer to it? ๐Ÿ˜Ÿ

    P.S. I see you found the Emoticoms too? ๐Ÿ˜Š

  • I am still flippin trying you twoxxxxxx

  • I will put up with my puffy, crying eyes now you have said that Bev poor you on your 50th too. Well I am 54 nearly 55 and I am not having it. All was not lost though, you have been through something we have not, and your experience has certainly learned me something. Thank you Bevxxxxxxxxxx

  • No probs completely, they said if opp didn't put it right I can try again but bugga that I will just put up with it ๐Ÿ˜ญ x

  • I really do not blame you Bev, you were very brave though, I cringe if I get an eyelash..........xx

  • You're both just babies! I'm 63 and 3/4 - like Harry Potter, but older! ๐Ÿค— xx

  • Thanks completely- definitely good to share experiences because nobody else really understands & most people haven't even heard of it! My hubby is sick of hearing about it I think & don't really have anyone else to share this with!

  • Hi hashi-too, I don't think my hubby understands how serious it can be he just thinks it's like water retention swelling and it will go away so I'm in your boat and only have the lymph gang to talk to about it as well x

  • Hi Bev. My other half is exactly the same! He came to the LD Clinic with me for my first visit, (about 5 weeks ago), and said he'd do my massage as I can't reach my lower legs. It lasted 4 days, and he's only done it once, since! Now, it just doesn't get done, and as I've been discovering more and more about this awful condition and telling him, he just ignores me! He does cut my toenails if I nag him....

    I feel that our relationship has almost entirely collapsed... ๐Ÿ˜ฅ

  • Mine does come in handy for putting the bins out.... ๐Ÿ˜‚

  • me too Bev-1966 xxx

  • Mine is too Hashi-too, love coming here because we are all the same and can share our thoughts and problems with this thing........xxx

  • I have to say I'm in complete denial about having lymphadema. I keep thinking any day now I will discover that this swelling is due to something else entirely like my fibroids or my retroverred uterus or my heart ?! I dunno Does everyone go through this stage or just accept what the Dr says and move on

  • Such a good question. I was so sad when I found out I had Lyphoedema as a result of cancer, I was depressed for about 8 months, until I forgot what it was like before. Once I became used to it, I take a sort of wonky pride in making sure I stay as fit and healthy as possible, even wearing the black tights in mid summer means I can treat myself to nice dresses, to distract me from the heat. I think it takes time, I think you have to be your own coach and dole out lots of praise!

  • Thanks Emmabe good to know people understand. I'm going to get my 2 weeks of presotherapy then get measured for those passion killers ๐Ÿ˜€grr

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