I had my first appt today after waiting 7 months for it!
The staff were lovely but it all felt a bit rushed. I think maybe because the plan is for me to come for another appt with specialist nurse who hopefully can answer my questions at greater length..and hopefully who i will see sooner rather than later!
The doc took a short history then two lovely nurses measured my legs at ankle,calf and thigh.
No one was mentioning a diagnosis so i had to ask,do i have lympho/ lipo or something else and was told yes,you have lymphoedema ..dashing any slight hopes i was entertaining that maybe i didnt have it after all,and that they were gonna say noooooo this is ..blah blah..and some medication will soon sort it out!
They gave me a stocking for right leg but they didnt have a twin for my left leg so i have to ask my gp to order it for me,and in the meantime, to wear one stocking
One possibly good thing about the stocking is it comes up to the thigh and is kept up by a waistband,so hopefully it will stay in place easily.
So,i' m guessing that i have to shower each night before bed,and not take one in the morning,as was told to put the stocking on immediately i wake up in the morning?
Thanks for reading! any tips/ advice for a newcomer like myself,about to embark on this journey so many of you here are dealing with bravely and positively? Xx
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StellaM
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Hi stellaM, did they not give you or tell you to get script from gp for some cream, after you night shower you need to use a good cream to stop your skin drying out? I use zerobase as it's nice and thick.
I also have bilateral full leg lymphoedema and have to wear full leg compression stockings which is not good in the hot and humid weather. 😅
No,nobody mentioned creaming the legs,but ive been doing that for ages anyway..but using essential oils in a carrier oil,or body butter.sounds like i may need to try something thicker like zerobase that you mention
No one at clinic said bilateral full leg lymphoedema to me ( they didnt mention lympho at all until i asked did i have it,then they said yes!) but i think its what i have..both legs puffy and swollen at ankles,knees,front of knees. I also wonder if i have it slightly in my hips.mhave lost a lot of weight but two stubborn little pads on hops wont go..may do when i lose a bit more
I use Doublebase but decant into smaller pots and then add the essential oils - always Lavender but depending on mood and time of year use any of the following: ginger, rose geranium, ylang ylang, frankincense, vanilla. I shower daily and then moisturise with the above. Also apply during the day if needed. Hope this helps.
I'm sorry you were diagnosed with LE but it sounds like you are heading the right direction with an appointment with the specialist LE nurse. Both my feet/full legs have LE which took a mental and physical adjustment after being diagnosed. Give your self time to accept the diagnosis and feel a range of emotions. The specialist nurse will probably talk about skin care (needs to be immaculately looked after to avoid cellulitis). You can look at the on- line leaflet on the Lymphoedema Support Network website. You're right about the showering at night. I had always been a morning shower person before LE took hold of my legs, but evening bath works much better as it's very difficult to put garments on damp skin! Also, putting the garment on first thing is a good practice as being vertical without compression only makes LE worse in your legs (gravity doesn't help!)
It sounds like they gave you off the shelf circular-knit garments. However for lower extremity LE flat-knit garments are the gold standard, so you may want to speak to the specialist nurse about this. You want the best compression for your legs! Most GPs and Vascular Consultants don't know anything about the proper garments, hence being given circular-knit (which is designed for venous problems) rather than flat-knit (specially designed for LE). When I was seen at St. George's Hospital in London by Prof Mortimer I was told that many lower extremity Lymphies come to their clinic having being prescribed circular-knit which is the entirely wrong garment for LE!
If no one has spoken to you about Simple Manual Lymphatic Drainage those are things to ask tb specialist nurse about. Daily SLD is important to drain lymph from your legs. It's starts with lymphatic abdominal breathing which is another question to ask the LE nurse about. I can post a good video, too if that helps.
This site is a great support, as are some UK Facebook support groups that many of us have joined (some are : Ladies Living with Lymphoedema UK; Lymph What Oedema; Lymphoedema Community). Having LE can be overwhelming at times for many of us so it makes a big difference to have a supportive community to seek practical and emotional support from 😀🦋 x
Yes i am going thru a lot of emotions,and allowing myself to feel them all!
My physical energy is limited as have had ME for many years..sounds like theres a lot of work involved in looking after limbs etc.which is a bit daunting when havent much spare energy,but am trying to do as much as i can to help myself
I noticed in the literature that the stockings seem to be designed for venous probs..lympho was mentioned,but low down on the list. I will remember flat rather than circular and will ask for them when i see the specialist nurse.
Wd like to see the vid you recommend, not on FB so cant join the groups there but thanks for yr advice and tips,much appreciated x
It's not easy having ME and LE on top of that. The Lymphatics are part of our circulatory system, and the lymphatics are our immune system so it's important to look after it. Try to pace yourself each day in caring for your Lymphie legs, that's the best you can do. LE can cause fatigue, perhaps some of what you think is ME may be the result of the LE?
You said you're not on Facebook so you may find a few websites useful, starting with the Lymphatic Education and Research Network/LE&RN which has a fantastic web symposium library, (free) and links to lots of LE blogs from Lymphies around the world.
The website Lymph What Oedema is good (a UK charity aimed to educate and support).
Another excellent information resource online is Lymphedema Guru. Loads of practical easy to understand articles which contain clinical studies/science/ research to underpin the information in the articles.
Manual drainage is essential daily treatment for Lymphies along with compression therapy. There are a lot of SLD videos out there. I've spent countless hours looking at them..sigh. The best ones in my opinion are below - made by a qualified MLD therapist, who explains what to do and why it's important. Draining your trunk first, before your legs is essential to make room for the lymph dawn up from your legs so that it can drain. The trunk drain video is first, then legs (total of 3 vids)
Like others have said it's important to have all the investigations for diagnosis - when you see the LE specialist nurse you could ask to be sent for a Lymphoscintigraphy, it's the first of two gold standard LE diagnostic scans. The second is ICG Lymphography (most informative of all), however it is not widely available as it's quite new compared to the Lymphoscintigraph which large hospitals do have.
Lots to learn about as you're discovering. Those of us with LE know much more than the average doctor (frightening but true!) xx
Thanks so much for all this info and vids CC..going to watch the vids in bed..have taken my stocking off nad its bliss! I found it even harder to take off than to put on!
CC thanks,have learnt a lot just from watching these vids and reading some of the comments below them.
I realise that altho ive been trying to self massage i haven't been doing it quite right ( the vids i ve previously watched were helpful,but they didnt really explain,just instructed to gently but firmly stroke around neck,up arms, etc) and to find out i shd do the breathing exercises and the trunk massge before even tackling the legs is a revelation!
Oh well now i know better and may see better results. I dont remember her saying how often to do the self massage..is it once a day every day. I wonder if its best done before or after a meal.
One thing i want to ask other people here..when youre massaging,do you feel little nobbly nodules under the skin? I have lots and some of them are very sensitive when i touch them.
Sorry this is long!
Goodnight if anyone is still around, and again,am so happy to have been given such a lot of help here today.thanks everyone xx
Personally I don't put my garments (below knee/ both legs) on the minute I get up. I always shower in the morning (hair looks like a toilet brush first thing). If I am off out first thing I'll shower about 10 minutes after getting up. This morning, though, I have aqua aerobics at 10.30am and I won't put my garments on until after swimming. For me, not wearing garments everyday definitely makes a difference (ie poor). Not wearing them first thing, or for a little while in the morning, doesn't make any difference. However, I have had years to get the idea of what does and doesn't work for me. My brother (we have primary lymphoedema) swears by putting his garments on first thing but still showers in the morning & then puts them on.
Lots of different causes of lymphoedema but for some it is hereditary. My sister has it as well, that is 3 out of 4 siblings. No sign of it elsewhere so a mystery. It is unusual to have siblings with It.
Sorry if I've missed this but I have a couple of questions.
Is your LE secondary as a result of surgery or primary ?
Was the stocking a stock garment they had on site?
Were you told to not wear stockings in bed?
Did you have a lymphoscintogram where they inject you with a nuclear dye into your leg and watch how quickly it moves up your leg?
Sorry for all the questions but I'm really keen to understand the ways in which we are diagnosed and the consistencies in treatment and care recommendations
My doctor said "You have Lymphoedema - there's no cure. I'll make an appointment for you to see a Lymphoedema nurse." End of!!! No tests, no explanations - nothing! 😨
Hopalong.. I can totally relate to what youve written..the doc i saw yesterday was ok, but seemed a little ill at ease and rather anxious to pass me on to the nurses..whether he has no interest in this condition,or whether he was uneasy coz he doesnt know much about it,i dont know! It sucks tho doesnt it! X
This is what I'm trying to understand. The way in which we are diagnosed and the extent to which the condition is investigated in us all is not consistent. Even treatment and care recommendations are not consistent. it's important to understand if it's secondary or primary because I can only reference my experience with primary LE but I had to push to get my lymphatic system evaluated properly. Do I have any lymph branches? to what extent is the malformation or do I have any lymphatic system in the affected limb at all? It all worked fine for the first 16 years of my life so why'd it stop.. at very best (but it appears not always) we're afforded a lymphoscintogram which says lymph travel is slow which in my opinion it's just not enough.
In my experience your gps good for nothing but repeat prescriptions of fluclox push to get referred to a decent lymph clinic asap I have seen several specialists and visited clinics around the country but your experience and the opinions you get will still even differ there. prof Mortimer at St. George's was knowledgable but not an advocate of exploring LVA surgery, didn't even want to entertain it. So I asked to be referred to the guys in the lymph clinic in Derby who were my opinion the best (I forget the specialists name there but I found him excellent.) even just the equipment alone, they use a machine to measure your leg volume % and for fitting as opposed to St. George's who still used a bloody tape measure and pencil at that point.
I got those guys to refer me to Alex Ramadan at Nuffield in oxford for LVA assessment who on assessment felt I was a candidate for LVA which I'm now attempting to push for funding for through my GP as currently not funded on NHS but wales are trailing for LE2
The means by which we are diagnosed is inconsistent the knowledge of the condition outside of specialist clinics and limited individuals is low and even amongst those specialists there seems to be limited communication and collaboration around the success of trials and new techniques. I think it's important to get on terms with the fact you have a condition that has no current cure but personally I still think we should all be pushing to get full and complete assessment and not just be given someone else's diagnosis. Primary LE is a blanket term and affects us all differently. As it does not kill us or cost a great deal to treat its not a priority to find a cure for. So you have to push and find out for yourself what you have and what can be done about it and don't accept somebody else's 2nd hand diagnosis
This is only my opinion based on 22 years of have LE
And what an opinion!! Totally, 100% correct!! I live in Wales, and the tape measure and felt-tip pen is cutting edge - so it seems? As I don't know my family LD history (I'm 63, so I don't think LD was even heard of then??), I'm not even aware what type I have, what stage I'm at,...., with no further tests having been suggested! All I have are the God-awful knee-highs, Doublebase Gel (basically liquid paraffin),a few exercises and instructions how to do massage? In other words - 'Get on with it!'!!
I don't blame my nurse - she was doing all she could with the resources she was armed with?
I posted an article a couple of days back about NHS wales trialling LVA surgery for secondary LE sufferers so I would hope that there should be some good LE expertise there somewhere if you push for referral to to the best people.
I dug my referral letter out to see the test that Alex ramsden did at the oxford lymph practice, it was an indocyanine Green Lymphography Report
It gave the best visual on the state of my lymphatic system in my leg and was much more insightful than any of the lymphoscintograms done previously in NHS. he manually moved the lymph fluid up the channels and talked me through how much of the lymphatic system he could see..
After asking a lot of people and specialists It was doctor Vaughan Keely at Derby LE clinic that kindly referred me to Oxford and Alex Ramsden for this test to be done. (He's a great guy.)
If you've never had your LE property evaluated demand it... The NHS won't come and find you and the trusts seem reluctant to use their limited budget exploring new treatments for a condition that doesn't kill you and doesn't cost much to treat with 6 stockings a year
LE is a condition that causes a lot of us embarrassment and as a result we tend to hide away and try and get on with it, accepting what we're told by people we expect to be EXPERTS we go away quietly and accept it.. truth is if you have LE for a few years you'll probably know more about it than 90% of the people youre referred to in the NHS
If you're not convinced in what Your being told, push to get in front of the right people. There are some good LE specialists in the NHS system around the country you just have to push to get in front of them and be prepared to travel to do it.
I have a lot of other problems going on at the same time - Spina Bifida Oculta, sciatica from spinal nerve damage, new hip 18 months ago, right shoulder tendon weakness,... so LD seems like another big step towards the end of my line? Loads of excess weight and the inability to exercise just gives it all a knock-on effect, and now I'm concerned that the mental aspect of LD is really taking hold! I really don't know where to start at the moment! 😥
My GP Practice is brilliant and looks after me and both my ' demas to the very highest standards.
It's been invaluable having confidence in local care but I will admit I do take in my LSN newsletters and the Practice was one of the first to undertake the training modules for both Lipo and Lymphoedema.
I have the utmost confidence in Prof Mortimer too but I know I am very lucky to be under the care of the team at St George's.
Firstly they acknowledge how difficult it is to live with and how it impacts on my life.
Secondly they have learned as much as they can and so I always have an up to date supply of appropriate antibiotics for example. For me that is Clindamycin as prescribed by the Prof.
I have had the condition since 2004 so they have the benefit of all those years of " getting to know " me and it !
I got to see " the Prof " because my Lymphoedma wasn't responding to conventional treatments. My specialist nurse was undergoing her masters degree with the team at St George's when I was first diagnosed soshe referred me to Prof M's private clinic where I was eventually referred to the NHS with the help of my Consultant Oncologist.
Dr Gordon now looks after me but really my care plan has been aborted as my CCG won't pay for my Liposuction procedure.
Yes its really important that medics realise this is a difficult condition to have to live with,and many people also have other health probs on top of it ..like yrself,having cancer or had cancer.
To get empathy from people who are also clued up as to how to best help you means a lot. Im new to this ( for years i thought my swellings were due to overweight,then i lost seven stone but my puffy ankles and knees didnt budge!) so im trying to learn all i can. Will deffo try to educate my gp while educating myself.
So many people seem to be faced by lack of knowledge and no sympathy from the health professions who are supposed to help them.
So sorry you cant have liposuction. Perhaps theres a charity you could approach,see if they wd help out financially with the cost?
It's a wretched condition you are right. I gained my knowledge from the LSN and conferences run by Lipoedema UK.
I urge everyone to do the same.
I have only met compassionate health care providers with regard to my ' demas but find it hard explaining to other people what my swelling is all about, even after all these years.
Aprille is Italian for April by the way but you prob figured that out. I was born in that month but have never been called my first name.
primary i think as ive had no surgery, not for over twenty yrs anyway ( hysterectomy)
I think its related to me having ME as none of the body's systems work well with that
Yes was given a garment from their stocks which were running low as they only had one in the size they said i needed, i have to order the other one from my gp
I asked about not wearing them in bed,whether they'd have informed me if i hadnt asked i dont know.
I was asking questions all the time but not really getting all the answers..i hope it will be better when i see the specialist nurse. X
I've found I can't where full strength compression in bed as restrict blood flow as it cuts circulation to toes and wakes me up. But I do where much lighter compression in bed. I'm not a doctor so not an expert opinion just my experience.
Lymph fluid is pushed up the lymph channels with muscle movement, although your elevated in bed your not moving much so I think light graduated compression in bed helps to squeeze fluid up leg..
I've been on a journey with LE and it took me a lot of my younger year later to get on terms with it and seen my leg get very large with neglect and without compression..
Right now the difference between my affected leg and normal leg is around 10% volume sometimes 8%. I personally attribute this to weight management, excercise, compression day and night.
Again please get advice for your situation this is just my experience
Please make sure that the stocking you get from the GP is the correct one (the same as provided already). If I have to change size etc. I can more or less guarantee that the GP has ordered the wrong one. As already said please make sure you moisturise well and do SLD to keep the selling from erupting. Good luck x
Hi Chrissie,thanks for yr advice. Will deffo take it.
I do feel a little unconfident ordering my left leg stocking from my gp,as ive read quite a bit on here about mistakes often being made. The word " patient" seems to apply well to lymphy folk as it seems we need great resources of patience to deal with all aspects of it.! X
You can shower as often as you like! Just make sure that the legs are dry before trying to don the garments. You can use a hand held dryer over the legs, just to make sure they are dry - if not, it may be difficult to pull the garments up. At bedtime, apply emollient, which will care for the skin while you sleep.
Hello there, sorry it wasn't the diagnosis you wanted - it takes a while to get you head around it all. However, the good news is there is loads you can do. I was diagnosed with Primary LE last year at 43 after my left leg worsened significantly but I've had symptoms since my late teens. I don't know how old you are or your lifestyle or other health issues, but here's what I do after a lot of research and experimentation! Keeping your Lymph system moving as much as you can. It is really important - so gentle excecise every day if you can (in compression) can be hugely beneficial. I walk with my dogs, every day and when it's cool enough (heat will worsen LE quickly) I do some gentle running. I shower twice a day and put my compression on after a shower in the morning. You may find swimming beneficial as water is a natural compression so you may not need to wear it. Keep on top of your weight if you can, as too much weight will put added strain on your Lymph system. I have also found that eating wheat is detrimental - lots of carbs are quite inflammatory and that can have a negative effect on Lymph flow so it's worth experimenting with your diet. I generally eat very low carbs now and drink lots of water which has made a big difference for me. A Keto type diet has been beneficial to lots of LE suffers, but everyone is different so do your research and have a go. MLD and wrapping (a specific type of very light massage designed to help move Lymph) and then temporary multilayered bandaging of the limp to help decongest the existing swelling, is another very useful tool. However, it's hard to get on the NHS although worth mentioning to your consultant - you can find private therapists if that route is an option (it isn't for me sadly!) Best of luck and if you can throw yourself into trying various things to try and improve your condition, it will really help come to terms with it as well. 😊
Ive been trying various things for quite a while now.
Deep breathing at regular intervals ( a Dr Duillard online says the ribcage is the best pump for the lymphatic system) and keeping moving like you said.
Have been on low carb diet for a year now and lost seven stone. Feel i have chased the Carb Monster away for good,and can continue indefinitely with low carb way of eating,with no cravings any more.
Also trying hot/ cold showers ( very refreshing even if they dont seem to make a difference) and massaging essential oils into my legs ( in a carrier oil). So far have tried lavender,ginger and about to try grapefruit essential oil.
Like yrself, icant afford to pay for MLD,so am trying to do it myself,following vids ive watched online ( tho ive seen conflicting ways of doing it! Grrr which one is correct!)
Im in my late sixties and have had ME for twenty years..i think thats why i now have lymphoedema,as none of the systems work that well in this illness
I like yr positive attitude and am trying to maintain the same myself,but i do feel a little overwhelmed right now! XX
Wowzers! Well done you! My view is that if you can be proactive and take responsibility for yourself, that's at least half the battle. Whilst the NHS and others will do what they can, ultimately us Lymphies are best positioned to improve and manage our own health. Some folks have found rebounding (gentle bouncing on a mini trampoline) can really help get things moving if other excercise is too hard initially and I love eating in a Keto way now (loads of leafy greens, and high fat proteins (Belly pork, salmon, chicken with skin on, avocados etc and very little carbs - it's worth Googling Ketogenic diet if you're interested and already doing low carbs) I've also found adding apple cider vinegar daily useful and drinking loads of water. I'm not perfect and have days when I slip or eat more like a normal person too, but that's not the end of the world 😄. When I was first diagnosed, I became really overwhelmed with the negativity around LE that I mostly found on the internet.... but whilst we all have hard days, and bad times... being negative or blaming our health service, doesn't actually help us. There are some really good Facebook groups that focus on what is possible and how we can best improve/manage our condition if you're interested. 😊 But I still climb mountains with my kids on walking holidays, Dinghy Sail and do as much physical stuff as I can, because it's important to keep moving and doing (within reason). I wear my compression daily without fail and if I have a bad day or a flare up.... I get back at it when I can because ultimately doing, improves or keeps deterioration at bay. Sounds like you've made a great start at doing what you can too - keep at it because every little bit helps as hard as it is sometimes 👍😊
Oh poor you - it is so frustrating and time wasting with all this nonsense about "you have to see a specialist nurse". Why don't they make the first appointment with such a nurse, as it is obvious we will need to see them, and stop wasting our time and their funds?
Thats a very good point Veriterc! I find it all a bit strange how this illness is handled!
Waited seven months for yesterdays appt because my GP (who is so very very good that everyone wants to see her rather than another gp in the practice) firstly forgot to refer me then when she remembered,let time elapse again while she tried to decide where to refer me...they seem to see lympho probs as somehow shrouded in mystery,and i get the impression that their lack of knowledge in this area makes them unconfident in discussing it / planning treatements.
I read online that the lymph system is the most important in the body..so why this lack of knowledge🤔 Why arent the medics more clued up?
Hi StellaM - Welcome!! Wow, what a wonderful bunch of people here - so much great advice and support. I'm a lymphoedema therapist and learning all the time - more from people with lymphoedema than from training. Yes, it's a poorly understood condition, and everyone has their own journey with it, working out what does/doesn't help them. You are in the newly-diagnosed-learning phase (the learning will never stop). There is so much you can do to help yourself (as you can see from the above posts). Once you get the right garments and have a good daily self-care routine (exercise, skin care, self lymphatic drainage massage etc), you can focus on the rest of your life and hopefully forget about it somewhat. It's great that you've started the journey to getting some management going. All too often, I have seen people in their latter years that have had no diganosis or management and are suffering the consequences (recurrent infections, ulcers, poor mobility etc etc). You will be fine!! Well done on the weight loss and getting your health back on track. You are amazing!
As a therapist have you comee across taping. I ha zecondary after surgery, in my arm. Was given compression garment but it acts like tourniquet n makes situation much worse. Therapist has laid strips of sticking plaster from inner elbow to wrist in an octapus formatio. Magic, 5 days n arm is well reduced.
Carolpa, i havent heard of taping but it sounds better than stockings which like you say feel like a tourniquet,specially when struggling to remove! Is there an easy way to do it. Ive tried rolling them down,then tried turning them inside out as i go down my leg. First way is really painful,second way only slightly easier. Someone mentioned taking them off in one go but i cant work out how to do that! Anybody know?
I' ll mention taping when i see the specialsit nurse. V pleased youve seen good results...light at the end of the tunnel for you ! X
not sure that it is the complete answer but it certainly works for me. Also my therapist is ( I think) not trained the same as specialist nurses on NHS. I think she is far superior in all ways, plus she cares - an attitude sadly missing from my contacts with NHS specialists.
Sorry NHS, I know you are not all the same but in my area care for lympho is abysmal.
Thanks choc for yr encouragement and advice, i think its wonderful that as a therapsit you call in to read and learn from here. Thats the only way the professionals will get the full story as it appears not much is known by the medics..why i dont know,as surely a working lymph system is the key to being well!
Yes i am so touched by all the kind help and advice ive received on here from so many members...a great bunch of people with good hearts taking time to help out a newbie! and a member who lives local to me has been in touch all day today and over the last few weeks with tips and advice.
It has made my day..!!
THANKS EVERYONE XX YOURE ALL STARS! XXXXX ⭐️⭐️⭐️⭐️⭐️⭐️⭐️⭐️⭐️
My name is Mia and i'm currently studying product design (final year) at Cardiff Metropolitan University. For my studies i want to help design a product that will help people with Lymphoedema re gain confidence. I want to gain a greater understanding and gain valuable views so i can conclude to a good design.
Basically i feel that i really want to make something to help you people out. I've been reading through these forums for a while now and i've learnt so much and really feel like i can design something to help you out.
If you feel like you have more information that could help my studies feel free to email me at mia.hill@me.com
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Abnormal feeling of Liquid running down my legs. Kinda long post
Cellutis again, feeling very upset :(
Class 3 tights and reducing swelling
