What is the most challenging aspect of living with lym... - LSN
What is the most challenging aspect of living with lymphoedema?
i find the most challenging aspect of living with lymphoedema is i lost all my confidence,i have primary lymphoedema and was finally diagnosed 3 years ago after suffering for 7 years with really bad swollen legs and feet, my husband and family have been so supportive and i dont no what i would have done with out them, i am finally getting better and am slowly bullding my confidence back. i also have had some wonderfull lymphoedema nurses.
I've had lymphoedema since October 2011, 3 weeks after my wedding day. Fortunately, in comparison to other sufferers, I have what they class as 'mild' primary lymphoedema.
There are two 'most challenging things' so far;
a. Getting a diagnosis, it took me 5 months to get a diagnosis, even when I had researched the subject and asked the question. Only to be told my GP - you cant have lymphoedema as you haven't had cancer, it must be arthritis.....it was only once I had a referral to the Rhuematologist that it started to come out.
b. The mental side of illness, being told there isnt a cure for this and you will have to wear this sexy stocking for the rest of your life...this was a shock. I used to hide the stocking all the time, but last night was the first time I donned a pair of 'short' shorts like I wore last year. I did hear one comment by someone walking past - she's got a false leg.....NO, but thats their problem not mine!
getting a diagnosis it took 17 years,within that time i was treated for dvts etc and told to get on with it
losing my job and having to retire on ill health i worked for the nhs and due to having to wear arm sleeves and gloves it was classed as a infection control risk to the patients
having lymphoedema in all limbs and stomach wearing compression items during waking hours drives me crazy at times i cant stand the heat and wearing these extra layers makes it unbearable at times
sorry to see your comments, i had to leave nhs after 30yrs im fighting for my early retirement at the moment, The caring profession it makes me wonder
i got tier 1 ill health retirement and if my condition gets worst withen the next 3 years i can apply for tier 2 it was occ health who recommend this as the trust i work for could not find me a job in a non clinical role although it was not something i wanted to do they said i could not carry on in a clinical role
I have breast Lympoedema and was lucky that it was diagnosed almost immediately because I had breast cancer and therefore being checked frequently. The support I have received has been tremdous and I am very lucky to have our local hospice who have a Lymphoedema clinic. Initially had treatment 4 days a week but now go once a week which is down to the skill of my Lymph nurse. There are two frustrating parts for me, the first is that this is a life long condition, that will not go away. Secondly are the days when I feel that my boob is very heavy and the weight is very uncomfortable. I also get very tired after treatment. Does anyone else suffer with constant tiredness?
Living with the "heaviness" in my limbs, and for 22 years being told my legs were the way they were just because I was a female, until i was finally diagnosed correclty, sadly 22 years late, to reverse any damage, as my legs are so fibrous, my lower legs as the same size as further up at the knee, this summer i have worn short dresses twice, and although knowing my legs looked awful, i was determined to still wear them, knowing the condition has a name is helping me to accept it, rather than hide behind it, my compression stockings have been a life saviour and have helped me become mobile again, i was close to ending up in a wheelchair before them because i couldnt even walk 100 yards as i was in so much pain, now i can walk a few miles just a year later. The heaviness is hard, very hard, and the tiredness, but i love my compression stockings, and cant imagine a day without them, they have given me back my life.
You go girl I agree i cant live without my support stocking and it does make such a difference as long as they are well fitted.
the hardest thing for me is finding clothing - I used to love wear boots and skirts in winter but since an infection my leg has got bigger so can't get any boots on now! - sad feeling in summer when everyone is wearing pretty skirts and dresses and I have to hide under maxi dresses! BUT having said that I know there are worse things but it's hard to know that after twenty years of having it there is still nothing really to take the size down - fingers crossed for something more permanent in the future - My main concern is I am hoping and praying that I haven't passed this faulty gene on to my two children, it would break my heart to see them with it. The mental side of the illness is far more challenging for me at the moment.
i understand how u feel,having been diagnosed 7ys ago.unfotunately i have passed the faulty gene on 2 my children.my 14yr old son was diagnosed last year.i think i was more upset than him.hes an insperation the way he carries on with everything.he doesnt like the compression stockings and avoids wearing them if he can.think he realised how it can affect him,when he got an infection last month and spent the 1st 3 weeks of the summer hols housebound.hopefully my other 2 children wont be so unlucky!
Thanks for all your thoughts.
I dread the summer holiday every year....it's supposed to be a fun relaxing time but It takes me about 3 days to build up the courage to leave my sunbed and walk over to the pool. Its ridiculous I know but I get so embarrassed about my leg.
hi there loobs. only just joined here and im completly with u on this matter as im just the same, so u aint alone feeling this way x
I understand exactly how you feel loobs i went on a beach holiday this year for the first time since being diagnosed and the thought of putting my costume on made me sick with nerves but i eventually did it and felt really proud of myself although i kept my sarong on most of the time
There are lots of challenging aspects of living with lymphoedema but I think the ones that stick out for me is going backwards and forwards to the doctors to try and figure out what was going on with my legs and feet and what was causing them to be swollen. After 7 years I finally got a diagnosis.
The other one is realising that I can't do as much as I used to. My legs feel so heavy and I get tired more easily. Even housework can take ages as I have to often rest and put my legs up (good excuse for a cuppa!). I can't walk as fast as I used to be able to - I'm forever asking my hubby to slow down when we're walking anywhere.
The one thing I have overcome is all the staring I get when my legs are exposed and I'm wearing my stockings. This summer I have been wearing 3/4 length trousers and knee length shorts whilst it's warm. I'm past caring what other people think and just smile back or ignore them if they stare. At the end of the day I'm wearing something that's helping me and it's me wearing them and not them, so s*d them!
I was diagnosed with lymphoedema about two years ago, following surgery to remove my varicose veins. There were complications during the operation and I have been left with this in both legs, but mainly the left one. This tends to swell during the day and makes getting shoes and things on pretty difficult. I have stockings to wear, which do really help but I haven't been able to wear them during the warmer weather as I am also going through the menopause and can't cope with anything that adds to my hot flushes!!
All this because, at the age of 44, I wanted to get rid of my unsightly veins that had haunted me for years. I have to admit, I found it very hard psychologically to begin with and my confidence has taken a huge knock, but I'm learning to live with it and it helps to know there are others experiencing the same problems. Finding this site has been a real bonus!!
I think it must be harder in some ways for people who have uneven lympheodema, because it is more obvious to others who can be cruel. With my primary lympheodema I think people just think I'm pudgy as its everywhere, its only that I have it on my scalp and odd places like that that makes you realise just how total it is.
The main challenge I find with primary lympheodema is the other issues which come with it, which the medical profession seem to have little to no awareness of and so theyre roundly and dangerously ignored.
I was diagnosed in November with type 2 diabetes. For this they give me a treatment plan, I have to have a yearly foot check, I get instant recognition of the fact my immune system is impared so I'm at risk. Which is nice, but all this was doubly true for my primary lympheodema for the last 20 years, and I've never had a single check until I finally investedbin a 6 month fight 2 years ago to get a check once every six months by people who openly admit they know nothing about primary lympheodema and just measure my legs even tho I repeatedly tell them my tummy is my problem presently. And $*!# all treatment from the NHS, not a thing. 4 years back I was constantly full of infection and exhausted, they didn't give a toss. Not bothered.
Why is necrosis and the risk of infection treated as second to none serious, but for lympheodema they don't give two hoots.
It's actually been better for me being diagnosed diabetic, its safer for my health! And now I van get free compression tights and prescriptions too!
That turned into an angry rant but honestly we're treated with complete indifference. The NHS would rather let me become disabled and incapable of work then pay for cheap treatment, even though people down the road get it for free. For shame.
It is good to rant and vent!
I had the same hassle for past 5 years and completely misdiagnosed!
There is also an excellent network on Facebook where you can get lots of useful information and friendly support . . .
facebook.com/groups/2824159...
It is good to keep complaining . . . remember it is the squeaking wheel that gets the oil!
Cheers
Christo
I have had primary lymphoedema (albeit mild and in one leg) since I was 11 years old and I am now 61. The most challenging aspect has been the feeling of isolation; that I was the only one with this condition. I had no help from medical professionals during my early years. I had to manage the condition myself. Four years ago I found the LSN network and through them found a specialist nurse and the correct compression garments for me.
This forum is wonderful - even more reassurance that I am not alone!
Having had primary lymphoedema since i was 5 (i'm in my 40s now), the most challenging aspect has been other people. I have swelling in both lower legs. Having had it most of my life my feet are not an issue to me, its a nuisance having to wear the stockings but I understand what would happen if it didn't. I have had good support from the experts most of the time, although being discharged from St Thomas several years ago felt a bit isolating at the time, i am now under St Georges. But it is the comments from random strangers who think they have the right to say hurtful things out loud in pubic that are the most upsetting (do they think i am deaf too) - luckily it doesn't happen often but it certainly sticks in the mind. I am happy to explain to people about the condition if they ask.
When I read about some of your cases I have to tell myself how lucky I am that I only have lymphoedema in my right arm (caused by having to have surgery to remove my lymphnodes because of breast cancer). But I still find it upsetting. Mainly the fact that it is for life. I find that there is not much support from my hospital (especially emotional support), that most people don't know or understand what is wrong with you and that after having got this condition because of a surgery they just leave you to deal with it. I find this unacceptable. Also knowing there is a microsurgery out there which could help most of us makes it even more frustrating. Why isn't this surgery available to all of us? I also hate having to wear the sleeve, I get hot and by the end of the day really uncomfortable. And finding clothes that fit well. They may fit on the rest of my body but then I can't fit them on my right arm and have to go for one or two sizes bigger than the rest of my body. Therefore I never feel good about myself. But as I said at the start, after reading about more sever cases I have to remind myself how lucky I still am and that I am alive.
I feel very much the same as you paddz I had a masectomy through breast cancer at christmas and was left with lymphoedema in my right arm after removing lymphnodes, i am struggling more with the lymphoedema than with having the masectomy wearing the sleeve and glove every day it has totaly changed my life not being able to do everyday things like i used to even missing the housework, I am very confused with the exercise part of it not sure if I am doing the correct ones I am scared incase I damage my chest or my arm. If anyone can help with advise on the exercise I would be grateful so glad I have found this site I dont feel alone anymore.thank you.
I was diagnosed with lymphoedema in my left arm a couple of years ago following breast cancer surgery. My right arm is at risk as I had surgery on both sides. I was devastated, particularly as it is a lifelong condition that needs constant management. For the first few months I didn't even want to get out of bed because I didn't want to put my sleeve on. Everything about it seemed negative; no cure, don't carry heavy things, don't get sunburnt, don't get insect bites, don't get scratched in the garden, exercises,massage - the list of 'don'ts' seemed endless! 2 years down the line though and I've become a bit more accepting of it. I'm very lucky to have a wonderful lymphoedema nurse who has brought my arm back to the size it was pre surgery (the NHS paid for some initial treatment although I now pay to have MLD sessions occasionally) and a great bunch of friends who had to put up with a lot of swearing and complaining for a while! The worst of it is (to answer the question!) is the restrictions on almost every aspect of my life; it feels as though my carefree days are over. Still, mustn't complain; at least I'm still here to tell the tale!
Hi monroe - the question of exercise is confusing as the specialist restrict so much of what you do. But I don't always follow their advice as I believe we are all different and what might work for someone else might not work for me. I try and adapt whatever exercise I do and keep an eye on the effect each exercise has on the swelling. In my case I find that swimming every day for at least an hour really helps. So if I do some exercise that might increase the swelling (like running) I then go for a swim afterwards.
As others have said there are many challenging aspects to lymphoedema, but for me the most challenging is the fact that it impacts on every part of my life. I have primary lymphoedema in both legs, both arms and my eyelids and scalp. I wear my compression garments without fail but life seems to be a constant balancing act between the amount of exercise I can do, avoiding stress as much as possible, resting my legs when necessary and possibly the worst thing is finding yourself in a situation where you have to explain why you can't do something because of the condition. Life would be so much easier if the lymphoedema didn't fluctuate on an almost daily basis!
I have lymphoedema in both arms. I had one mastectomy a year after the other.
My arms are much bigger from my shoulder to my elbow than my elbow to my wrist and so have had huge problems getting slleeves correctly fitting.
It is so frustrating. The lack of knowledge in the medical world is so frustrating. There are days when my arms are really painful and that gets me down. When I find clothes that fit me I buy a few eg I bought the same top in three different colours because I was so excted to find something to fit me.
The lack of available MLD is disgusting.
Living a life without being in pain and swelling is a nightmare and a challenge.
To be able to rest when we need to but this is difficult if you are working so it makes the condition worse if your employer is not sympathtic and understanding so GP's, Consultants, DWP and The Government NEED and MUST understand the frustration as this condition is for life with no cure and the affect it has on those who suffer we need all the help we can get it is our right as a human being.
I have been bullied and abused but to live with Lymphoedema certainly is a challenge but now I am getting fed up and enough is enough so I have to let off steam.
Why should we suffer anymore? When we are all doing the best we can for ourselves.
This condition is not like a cold or flu that will clear up after a few days. It is for the remaining years of our life and we all need the support to enjoy our life whilst we can during this challenging lifetime of lymphatic disease.
I never give up hope but cry everyday with depression for the professionals do not really understand what we have to do to lead a normal life.
My life is never normal. I live to survive the best I can and yes its a struggle as it takes me 3 times as long to do anything. The mental blocks I have adds to the frustration.
They say: Yes you have this condition here are a few things to help you now you have to get on with it. Who gives the support when you are depressed and fed up with living?
Where is the Christanity the help and support we need to help us live, to ease the pain and suffering to make things easier for us. We have this condition not the professionals thats why we seek advice it is so frustrating trying to explain to others how we feel deep down inside my heartaches so much.
To deal with the Cold Chills that run through our bodies. The never ending swelling,
The pain when walking, Doing daily chores takes hours cos we can't move as fast as others.
Looking after ourselves so we don't get Cellulitus as for many of us who have suffered with Cellulitus many times having to take antibiotics and having a supply on standby just in case a flare up when we don't take the necessary precautions.
I thank God we have this site we can share our views and get support from others.
Its a challenge to find a job where the employer is understanding and caring,
Its a challenge to find a job where you won't be bullied into doing things you struggle with.
its a challenge looking after ones-self without having the help of another person.
its a challenge coping with everyday things living with lymphoedema.
its a challenge living trying to do things which you take for granted when you can't do it..
well said
In my case, it's worrying about getting cellulitis, not injurying my arm, not being able to uae both arms the same.
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