Newly diagnosed, any advice?

I have just attended the lymphoedema clinic where the nurse jane was really attentive and understanding and confirmed what my GP and i felt was lymphoedema. My consultant dermatologist ruled this out and quite frankly talked to me like i was an idiot.

I was wondering if anyone can give their best piece of advice as to how to cope and deal with this as i seem to have had it for a long time. I will be getting my made to measure stocking in a few weeks but have found it difficult to get motivated for exercise etc. I am only 46 and the condition has affected by life quite a lot. I can't even get wellingtons to fit my legs.

Any advice would be appreciated

16 Replies

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  • Hi,

    Sorry to hear the news but at least you have a diagnosis now and are able to get on with managing the condition. You didn't say whether your LE is primary or secondary or how bad the swelling is? The process and progress of improvement will differ in different cases but I have found that the most important thing is to stay positive and not allow the LE to control what you do in life!

    I'm only 34 and was diagnosed with secondary leg LE around 18 months ago when my leg had swollen up to around 50% larger than the other one and the movement was restricted a lot. With bandaging, compression garments and exercise I have managed to get the leg back to virtually normal size and regained the vast majority of the movement. MLD is also a useful technique which your clinic may be able to offer or show you how to do yourself, this encourages the Lymph to flow through the channels and drain away from the swollen area.

    Good luck!

  • Thanks for the response. I have secondary lymphoedema. We believe it has been caused by repeated skin problems including HS. The swelling has come on over a long period, it was noticed probably some 6 years ago but wasn't looked at despite having just had a diagnosis of IGA nephropathy (under control with good kidney function since diagnosis).

    I have it in both legs with the right slightly less swollen than the left but both probably increase by at least 50%.

  • Hi Gavinlwright

    Glad that you will get the care now that you need to get on top of this. You might like to visit the LSN website - it has loads of info on it

    lymphoedema.org

  • Hi! I've had Lymphoedema in my left leg for 18 months now, my advice wear the stockings my leg went down by 15% with wearing the stocking all day every day. Moisturise, every night, move - go for a walk, even if its only a little one it will get easier and will help.

    If you do exercise - always wear your stockings!

    Keep your legs up when sitting - not always easy but at work I have a leg rest and at home I have a leg rest.

    Remember to look after your legs and try to avoid cuts and scratchs - if you have one that looks angry and red or a red rash - straight to doctors to get antibiotics as this could be cellulitis which we all need to avoid! (I've just finished my first treatment for cellulitis )

    Eat a healthy diet.

    Overall be positive, it's not an easy illness at times but the more positive you are the better.

    And on bad days, moan on here!

    Kelly

  • Gavin:

    Welcome! LE is a damned nuisance and it takes some getting used to but it won't stop you from having an active fulfilling life. There's plenty of good advice in the other responses above but let that not stop you asking as many questions as you need answered. That's what this site is for. Best wishes. Seán in Hexham.

  • Hi there,

    I'm sorry to hear about what you're going through but at least you have a diagnosis. Unfortunately you get some specialists who dont have any idea what they're talking about and sadly its up to us the sufferers to be the driving force behind our treatments. I went through 2 years of really expensive tests before my doctor said he didnt know what i had and i should just 'live with it' I refused to accept this and compiled a dossier which he reviewed and eventually ended up diagnosing me with Primary Lymphoedema.

    Since then I have lost 30 lbs and changed my diet. What initially motivated me was the fact that I wanted to be able to wear normal shoes and feel 'normal' again so I started off with light exercises i.e short walks then i moved on to jogging and then regular spinning classes. With that came an improved diet and lo and behold I am able to wear ankle boots and short skirts and dresses ( albeit with my compression stockings).

    Put a picture of yourself before your diagnosis in a place where you will see it often and focus on trying to get back to that. Lymphoedema is something that will stay with you forever ( ... or until they find a cure) but until then you can aspire to getting back as close to your ideal as you can do.

    Good luck, you can do it!!

  • Thanks to all who have offered advice and help.

    I think it is a state of mind that is key to coping and a positive attitude. I shall try to get my head around this and get on with things.

    I would like to get back to the gym and weight training again, does anyone know if this beneficial?

    I will have to start with relatively light weights but would like to build back up to my previous higher levels.

  • Hi there.

    First and very importantly: You will learn how to manage this, have hope.

    Give yourself time to adjust to the new situation and your new routines, it may take a while.

    My best tips would be to wear the stockings, don't cheat. It is important that they fit a 100% so a good fitter is crucial. Also, you might consider getting a nightgarment. I use a Jovipak, if you want you can see more about this on my blog. I write about my life with Lymphedema and the things I have learned during my four years with this condition.

    About exercise, you don't have to wear yourself out in a gym, a walk or a bikeride is good too. Or bouncing on a minitrampoline, that is very good for the lymphatic system. Go easy and find out what you can do, don't overdo it. Also, consider cutting down on your salt intake.

    Know that lymphedema patients are prone to cellulitis as our defence system is weaker and we get infections easier than others. Learn about this and bring AB on travels so you are prepared.

    Take care.

    LymphedemaGirl

  • hi gavin

    welcome to the club

    absolutely, be positive as much as you can, but it is also ok to be well & truly pis*ed off & have a moany day - as others have said, that's what we're here for

    to start with i'd take advice about exercise from your lymphoedema team - depends what condition your skin's in, how deconditioned you've got, stuff like that

    then the decision is whether you want your exercise to be aimed at helping the lymphoedema or whether you want to do exercise you enjoy that doesn't necessarily benefit the lymphoedema directly, or a bit of both

    for lymphoedema, you want anything that creates movement where it's pooled - because your lymph system's packed up locally you're relying on other structures (mainly the muscles) to help pump the lymph around for you

    so stuff like walking, swimming .....

    i'm not an expert, but if you're a proper no messing heavy weights lifter i'd get a bit of advice about how much that might be putting strain on your legs in a less helpful way - or, for all i know, it could be great! it'll depend how good your lifting technique is too, i suppose

    but start with anything you enjoy - you can get more lymph-specific as things get less difficult

    good luck

  • I have had Secondary Lymphoedema for about 10 years ...but only diagnosed last November...it has been a battle to get a diagnosis ..had a biopsy in 2003 ...no definitive answer or diagnosis...legs kept getting bigger over time...2008 another biopsy as left leg was getting worse...still no definitive answer...went to see a Dermatologist in 2009...she diagnosed Lipodermatosclerosis. which has no cure.....but gave me no advice as to how to manage it ...so we come to May 2012...I developed infections on both legs by July I was having the District Nurses visit to tend to the sores which had turned to ulcers....they referred me to the Lymphoedema Clinic where I wasdiagnosed with Lipo-Lymphoedema (the Lipodermatosclerosis was ruled out)....and from October things have started to look up for me...the Lyphoedema Therapists are very helpful and measured me for stockings and encouraged me to exercise ...Since November 7th I have lost 11.5 kilograms...both legs have gone down in size so much so that I got smaller compression stockings in February....After my review in April the therapist noted that my left thigh had grown bigger in size...they will check that when I have my next review in August

    It is very important to wear the compression stockings from the moment you wake up til you retire for the night and especially when exercising ...I was never one for much exercise. . but found that walking was very good...I started with very short walks and extended their length over time...and as I started to lose weight my shortness of breath disappeared and also my wheezing...Another important thing to watch is what you eat...I have stopped eating candy.. cookies.. cake ..chips ...and try to eat a healthy type diet...My skin on my legs have improved outta sight....the fibrosis has all but disappeared.

    Moisturising your legs is very important ..it helps keep your skin supple..... and at the same time check for any cuts or scratches....if you do get a cut or scratch deal to it immediately with antiseptic cream...I have a tube of Crystaderm a strong antiseptic cream on hand .

    Most of all don't let it control you.. you control it ,,, And stay positive...

  • It can be soul destroying at first but think thats normal, it does get easier as we all would say, at least you have a GP who got you refered to the specialist people early, Visit the LSN website lots of advice on there and you can ger free leaflets that tell you alot about treatment and general advice. Good luck.

  • Hi you will feel better when you find shoes that fit and have room for the bandages I suggest Coseyfeet very helpsul will send you catalogue or go on line. Good luck you will feel so much better soon :) gins

  • Hi,

    Welcome to our family of Lymphies, we all know only too well what you will be going through.I won't go on about how long i have had this condition and make you think OMG, but what i will say to you may surprise you.

    This is now your time:

    •If you have never been selfish in the past you may now have to begin being a little selfish, as putting yourself first is now a priority.

    •Have your bad days along with your good ones and don't ever think you’re alone.

    •Vent that frustration, The Doctor always says it’s always better out than in. Try to avoid your love ones getting full whack

    •Don't let others decide what you can and can't do; your body will do that just fine for you on its own.

    •Rest plenty, that extra weight in your limbs be large or small really does let you know it’s now your constant companion.

    •There is no shame in having a go at something, if it becomes too much, move on to the next challenge and see if you can handle that one, but don't look back and think you have to punish yourself or beat yourself up because you can no longer do that now. It’s all about adapting your ways to fit around your life style.

    •Don't forget to live your life, it’s not a death sentence, we all just need to adapt to how we best handle our own requirements.

    •We may have the same condition but we don’t necessarily have the same symptoms. Nor does our treatment have to be identical, we may all be at different stages of the condition.

    •Cry, smile, shout, stomp, throw something and get angry, I think after what we all deal with on a daily basis it's allowed.

    •Make sure you have every possible piece of help that can be offered to you in place, be it pain relief, appliances that make life easier, hoists, stair lifts, Nurses coming in to help with dressings or bandages, whatever you need to live your life not just exist in it.

    The best advice i could possibly offer you is,

    •Listen to your own body and follow the golden rules of caring for your limbs.

    •Don't be afraid to ask any questions and knock on a Consultants door if you are unsure about anything.

    •Please make sure you have a good Care Team/Network in place

    •Make sure you go to every follow up appointment, making sure that keeping your garments at the correct fitting is also safe guarding your limbs. Pointing out any changes that you have noticed will have them addressed and cared for immediately.

    •Asking questions cost nothing, so ask as many as you like but never feel daft about anything no matter how small it may feel to you, a simple "can i just ask" can help alleviate your worry.

    •The most important Learning tool for me, was to accept help, we are all humans not super robots. At times we may not be able to do something, so just by asking or allowing others to help, can make you feel better, it can also make them feel like they made a difference, but most of all, they feel needed and Let’s face it we all like to feel needed.

    •So i say, make a list of what Golden Rules are required for yourself, stick by them and then go do whatever you feel you want to do Gavilwright & live for today.

    P.s I am sure i read Coseyfoot/feet do wellingtons and boots

    Ninewells

  • WOW!

    Thanks everyone for your thoughts and advice, having a painful day today. Started at 3am!

    I shall try to follow everything people have said and can't wait for my stockings (never thought i would be saying that).

  • I am in Miami Florida, do you know of a clinic that deals with this as most Dr's have no clue how to treat it...water pills and lymph drainage I found on this site and insurance has paid for a few visits...thanks for all your help.

  • Sorry Goodtimes. I don't know of anyone in Florida as I am in the UK. However the site has some useful links and info as well as notes for healthcare professionals. lymphoedema.org/

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