What is the one most frustrating aspect of living with... - LSN
What is the one most frustrating aspect of living with lymphoedema
LymphSuppNetworkPartnerLSN213 Voters
All the above combined make for one big frustration.
I agree! all the the above are so true!!!
Yes,all the above, although shoes that actually fit and are comfortable are my biggest problem. (Was wearing a pair of my husbands shoes and since then Shoe Taylor has been my only option and they are not a perfect fit)
have you tried evans .i seem to do ok there
Your frustration is over Cosyfeet have a line of super stretchy elastene\leather shoes that are SO comfortable and bliss on your feet
Cosyfeet are problem feet shoe specialists
Being mis- judged and mis -diagnosed.
i know the feeling, after 8 months of mis diagnosis and no treatment, i can now barely walk 5 yards, i dont sleep anymore, cant eat. ........ im still waiting for treatment to begin. 
... im scared theyve waited to long
i know the feeling, after 8 months of mis diagnosis and no treatment, i can now barely walk 5 yards, i dont sleep anymore, cant eat. ........ im still waiting for treatment to begin. ... im scared theyve waited to long
i know the feeling, after 8 months of mis diagnosis and no treatment, i can now barely walk 5 yards, i dont sleep anymore, cant eat. ........ im still waiting for treatment to begin. ... im scared theyve waited to long
i know the feeling, after 8 months of mis diagnosis and no treatment, i can now barely walk 5 yards, i dont sleep anymore, cant eat. ........ im still waiting for treatment to begin. ... im scared theyve waited to long
You are so right - I get SO paranoid about my bulky legs, I once heard someone say, whilst I was having a meal out with my husband - what is that fat little woman doing out filling her face -she should be loosing weight!!!! I am a size 14 top and 28 bottom end! Also it took my Doctor 5 years to diagnose me!!! By then every thing had escalated!
same for me got fed up of been told just fat lose weight. it was not until i lost weight and my legs didnt that they looked into whats wrong
My greatest frustration is finding medical professionals who actually have an understanding of Lymphoedema.
All of the above matter really should wear full shoes but cannot find any to fit so wear elastic top sandles.
Did you know that you may be able to get shoes made to measure? - ask at your GP surgery. I got mine (two pairs a year through the orthotics service at my local hospital). Before that, I had to buy from Cosyfeet (great shoes btw) and cut away the insteps. I don't have to pay - this may be income-related. The shoes are not stylish but they are comfortable. Like everything to do with health, make a list of questions and - when you get an appointment at orthotics - talk to technician about shoe weights etc. Shoe colours I'm offered are black or brown. Winter is coming - you need protection from wet and snow. Hope this helps.
Must get your GP or Lymph Clinic or Nurse to refer you to the hospital orthotics department as they will measure your feet and order your footwear which is made to your measurements.
This is a brilliant service at the hospital but you have to be referred.
Unfortunately not much of a choice of style. The Boots with velcro tabs are brilliant for the rain and snow but too hot for the summer.
There are shoes available but they don't support the ankle.
If you have to pay for your prescriptions and have a lot its much cheaper to pay 3months or 1 year in advance
All of the above! I couldn't decide on one above the others. Maybe also I'm frustated that it's lifelong
There all fustrating, but for me 2nd to not being able to wear great clothes, is the fact that I hate people staring at my legs!!
Me too. Having to wear trousers or long skirts. At times I hide myself away until I find the confidence to go out.as I feel afreak people do not understand what we have to go through mentally to live a normal life is a joke and get very fed up and depressed.
I wish I could get others to understand as I been trying for 40yrs.
Yes I feel the same people looking at my legs I feel a misfit. They don't understand they think you are fat.. I am small on top and big legs to be honest I have always had big legs but I was happy now that I can't feel my legs and now they are double in size and hurting and heavy .. I get depressed I am pretty in face but the rest of me well disheartening
I get frustrated not being able to do the normal things I used to do like cooking meals, doing housework etc, I wear a glove awell as a sleeve so its always a reminder .
Not being able to do some of the things I used to do, and wondering if I'll ever be able to do them again.
accept what you CAN do with joy and do it well. forget the rest and do not fret
All of the above and the impact that this has had on my life - not being able to do the things I used to do, the fact that it is lifelong and the time/money involved in trying to find clothes/shoes that fit.
i know the feeling, after 8 months of mis diagnosis and no treatment, i can now barely walk 5 yards, i dont sleep anymore, cant eat. ........ im still waiting for treatment to begin. ... im scared theyve waited to long
Now retired,all of the above,but worst was working in very hot offices.When air conditioning was introduced, it seemed an answer to my prayers.Unfortunately it did not suit all.
cellulitis-watch!
instead of 'coat, keys, walking stick' when i go out it's 'coat, keys, walking stick, savlon, plasters, antibacterial wipes, latex gloves, nail file, laminated 'don't puncture or compress unless i look like i'm dying' card, bag that doesn't compress shoulders or elbows or weigh anything .......'
half the time, the shops have closed before i manage to leave home (joke! but frustrating nonetheless)
Living with Primary Lymphoedema in both Ankles and Legs.
Having to wear trousers or long skirts. Trying to get shoes to fit a nightmare.
Not able to do certain things a normal person can do is so frustrating.
Wearing Support Tights feeling the body fight against the stockings.
At times I hide myself away until I find the confidence to go out.as I feel afreak
people do not understand what we have to go through mentally to live a normal life is a joke and get very fed up and depressed.
I have been trying for 40yrs to get others to understand how we sufferers feel inside about ourselves and what we have to do to lead a normal life is a joke.
Everything for me takes three times as long which is very frustrating.
There is no cure for Lymphodema but we have to struggle to do the best we can so others should appreciate this and help us when it is needed.
l find it so frustrating when people just think you are lazy.
Especially your own husband who has no compassion.
I ditto that remark? Mine just thinks I've become lazy! In our house, if I don't do things, then nothing gets done, so clothes don't (or rarely) get ironed, the dog is moulting like there's no tomorrow, and the house looks a tip!!! I already had arthritis in my spine and hips (one replaced, the other waiting...) and chronic Sciatica from nerve damage, and the onset of LD is the icing on the cake! Even standing is agony, and I'm becoming more and more reliant on a wheelchair - which he'll push if he thinks anyone is watching? He doesn't want to hear about it, or the problems I have, and won't even read about it? His attitude is: 'I can't feel a thing!' 😪
Get rid, if you are on your own you won't have any expectations, can't be let down or disappointed.
I understand completely how you feel because it's how I feel too. It is my birthday on Sunday and I am going out for dinner tomorrow evening but part of me doesn't want to go because I feel so self-conscious, not only about how my legs and feet look but also how I walk.
Happy Birthday! Don't worry about your looks. If your face looks happy, people will have only positive thoughts about you. And anyway, why think of others. Who are they? Strangers. The important people are members of our family! Have a lovely time tomorrow.
Let me tell you thar FAMILY are even WORSE Especially my HUSBAND..oh yes! the snob who says he is so ashamed of me looking how I do and because I walk lop-sided ...oh you are so slow! when out it is even worse and he avoids walking with me at all costs or helpng me to cross the road. It came to a head for me today when someone else helped me off the bus while HE got off the bus and just watched and pretended I wasn't with him. Family?!! I live in Ukraine and the only family I have is my husband. I would love to have one or two English speaking friends with whom to correspond that is why I am truting you all with my email.....capekidnappers4u@yahoo.com
Darling family member your partner walking away from you is disgusting, something may happen to him I'm who will take care of him, I believe on karma, don't go out with him try and get local help like special transport to get you to the shops or get a part time carer in twice a week where they will look after you it's hard I know people look at me all the time, funny really only a year ago I worked as a manager and now in 10 months sitting here feeling helpless
Just take one day at a time.. Also I massage my legs twice a day it helps stay strong sweetie
All the above but need helath professionals and DLA to understand our disability and how it affects our life. We do not have a normal life.
Compression garments are a pain - but I would love to see more people wearing them! I have worn mine for five years and only spotted two others! I don't cover mine up but would feel less self-conscious if others didn't too! The way I look at it is if I hadn't had the op which caused it (for breast cancer) I would be six foot under now so hey ho let's just get on with it!
Hello, I have just found this network and have joined. I really thought I was alone with this as no one seems to understand the pain we are in everyday constantly.
Reading the comments above I had a little smile as, I am a 'big' lady always have been but,suddenly it is my weight that is the cause of my problems, if I had a pound for the amount of times I have had this said to me I would be rich, and these comments make me feel even more depressed than ever. I do have a nurse who I see as and when I need her, its great to ring for an appointment even if I need to chat it is great, both my legs are affected and I have trouble walking, and find it difficult to cream my legs as I can't bear to touch them as they pain so much.
I must share this with you all, I have bought exfoliating gloves that I use in the shower to wash away the build up of cream on my legs and the dry skin comes off easily, I pat my legs dry and apply the cream on damp warm legs and I find this to be soothing, have a go, you may find it will help you.I will comment again another time and thank you for your encouraging comments.
Hi Guysm
I just joined this forum today, I have had this painful condition for over 15 years in both sets of limbs. I also have Alopecia, so you can imagine both the body pain and emotional pain i fight with every day. I need at least two hours a day to get my Compression stockings on and then i have to deal with Having my wig on, so i am over heating on top and being squeezed to death.
I fully understand what everyone has said as i have gone through all of those emotions.
I was very fortunate to be given the chance of having my Eyebrows tattooed to make me feel a little better on the NHS. On the day of my Tattoo's a beautiful Nurse at the Hospital approached me and asked me who was looking after my Lymphoedema, When i asked her what that was, as nobody had actually pin pointed what i was suffering with, she immediately replied the problem your having with your arms and legs. I could have cried, someone was looking at my limbs for the first time and not just assuming i had ate all the pies. The clothes i stood in had to be made for me to accommodate the bulk underneath them. I couldn't remember the last time i wore a jacket as the arms are always far to tight. Having a tiny body trunk and very over enlarged limbs made it look even worse.
From that day on my life has been changed, I can openly say this is all down to the most amazing Consultant i have now had the good fortune to meet and be accepted into his clinic as a patient. He has accepted me under his wing and allowed me to have 3 operations under his care.
So far he has managed to de-bulked most of my legs and arms. How long this will stay this way is another question,
yes i still have to wear my garments but i can also wear a dress and trousers, i can now fit my legs into slim boots for the first time in over 15 years,
I am hoping to have more work done on my legs as my skin is not shrinking back, we are not sure if its due to the bulk that is still in the legs or not, so we are planning that the rest be removed as before, to see if we can have the skin shrink back on its own accord. I also have Lipodistrophy and this is also known as a problem in this field. It can causes the skin to loose its elasticity.
Once the next set of operations are finished, if all goes well , as i am just a guinea pig at the moment, i promise to upload pics to let you see the before and after photo's.
Its nice to know i am not alone and the thoughts that we all have are natural thoughts when you live with this condition. I have to honestly say i thought i was loosing my marbles on the bad nights, when the pain had me in tears, Lack of sleep, not being able to allow my husband to hold me as it hurts to much, you all know what i mean i don't need to list it all.
I am just happy to have a place to go and know that when i share a story the people reading it, really do know what i mean..
Good luck guys, wishing you all a painful evening.,
this should have read a pain free evening guys please accept my apologies.
ha ha ninewells!
i was just going thru to see any posts i'd missed & that pulled me up short!
i thought to myself 'ninewells doesn't come across as horrible anywhere else! what's going on? she must be having a really bad day & wants to share the load around a bit!'
so even after reading about all the struggles you have - which isn't funny at all - i burst out laughing when i saw your correction
may all our days be that kind of painful!
Norberte,
You have made me laugh, when i saw it posted i was racing against the clockall to see how i do a correction or edit and couldn't find it, i was screaming nooooo when it appeared lol, Glad i got in before i had aiienated all the other memebers hehe.
hoping your keeping well
Ninewells
Pain from swelling
Having to do massage every day. Takes up time and don't see instant results
iv got an open wound on the back off my left leg, iv had it for 5 years it is very pain full and gets infected on a regular basis
As of late it has been losing time at work. I am a contractor and find that one hot day of physical work knocks me out for two days. This is really effecting my family and our finances.
I really hate how restricted I am regarding holiday destinations! Retired and love travelling, but with the exception of the volcanic Canary Islands, am very very careful where I go if travelling for more than a week because of the dreaded "Mozzie". Tenerife is mosquito free, and I can relax and enjoy walking without worry, but would like more freedom without fear cellulitis! ;o))
Love travelling, but feel really restricted because of the "dreaded mozzie!" Not at all happy travelling anywhere other than Tenerife (or other Canary Islands) for more than one week. Tenerife is mosquito free, visit 3 times a year for min of two weeks at a time, and only there can I totally relax and forget about being bitten and contracting cellulitis in a foreign country. Also travel insurance a real pain when trying to cover lymphoedema. They don't want to know...not that I blame them from a business point of view when one bite can put you in hospital!
All the above are too I wish the shoe manufacturers would think of us I find it very frustrating not being able to get my feet into shoes cos of the swelling and that I need extra cushioning on the bottom of the sole I would like to start a campaign and pass it onto the manufacturers to they can help people like us so as not to feel an outsider
Being rather freakish like an elephant big leg or legs. Also have trouble even if one loses weight, you still have the swollen limbs. I think compression is a bogus treatmen. They do not know what else to do so they torment wit bogus so-called treatments you pay for that do little or nothing to help. They need to get serious about primary and secondary lymphedema research and actual treatments that help to cure and prevent. PERIOD!!!!
Please excuse typos as I am having fat finger syndrome.
Compression stockings - the wearing of them is clearly something we all would rather not have to do but its the lack of support from medical professionals and also garment suppliers - they don't understand how important it is to get the right fit - fobbing people off with off the shelf garments with too low a compression - the right compression with the right fit (no creasing at the knee and ankle and skin adhesive on the NHS please!) would save the NHS a lot of money - make a bit of effort with us at the start and save time and money in the longer term.
All the above cause me frustration , but the single most frustrating thing is the lack of effective support from NHS . Issuing a compression garment every six months is not enough!
I haven't even gotten compression garments. need custom sizing..spent 4 months in PT and got them down enough to get dr to prescribe. Then my PCP talked the talk, but didn't walk the walk. Told by insurance company that she needed to submit a exception to the rule form to get them approved..she never even called them. All that time in PT for nothing. I did more damage to my foot trying to maintain what I'd accomplished and now have sever neuropathy in my foot because of her. Sorry...got me rambling. lol
The compression garments. I have LD in both legs, secondary. Severe arthritis in both hands and live alone, 70+. Putting stockings on is a struggle and painful, even with gadgets/gloves.
They are so warm in reasonable weather, but I continue to wear them. Limit what I can wear too.
I am lucky that I have my legs and my mobility, but this condition has changed the way I see myself and the way others see me. I am never comfortable when I am wearing them, although the inner discomfort of my legs is eased when they are worn.
I have a 'love hate' with the stockings! The consequences of not wearing them are detrimental to my whole body health, so I'm stuck with them.
The lack of treatment for those with lymphoedema - lip oedema which appears discriminatory when run by Mc Millan nurses in a hospice who have not qualification in that area & should not be left to diagnose & abandon .
Research too is not taking Case Studies & uses those contracted in as Registrars to block.If you do not show up on the tests you are a fraud it appears so can ration and give the run around , could it be a gender issue ?I have only just got diuretics for pulmonary hypertension which I have been pressing for since heart attack where died 3x 10 yrs ago .Revived with angioplasty
I had a hard time choosing..because they are all sizeable issues. I've struggled with this issue for over 20 years and it just tends to get worse. I'm 50 now and i wonder how much longer I'll be able to keep up the pace I'm doing. There's no one answer...don't stand too long, don't sit too long, you need to walk and get exercise, you need to elevate them...just maddening.
No normal quality of life with my sons. They had none growing up being raised by a single mom.
Like most - all of the issues are relevant and affect us all every day. I have had primary LD of the left leg since the age of 15. Some days I feel robbed of a normal life and other days I am absolutely ok with my lot in life!
I have had this condition longer than I haven't but still it is emotionally draining. I am very conscious of having one leg larger than the other and have had people stare and comment - very crushing emotionally. However, I am lucky that my husband is supportive - he does have his Godzilla days, but in the main he is one of the good guys.
I love having the ability to read and comment with lovely people who are able to understand completely how I feel and some of the hints/tips/advice you guys have are uplifting.
Thanks for being here 😊
The frustration of feeling drained of all energy and my leg going numb have to shuffle to move around feels like my legs have given up they feel so heavy I rest until I feel better this is a never ending illness I find it hard to get others to understand how my body feels one day I can walk a few yards then a few hours after I find it very difficult to walk and I am very slowly shuffling to get to the toilet if I was in a wheelchair at least then I could get around better should I give in to the wheelchair or keep fighting the losing battle I am exhausted anyone else please comment on how you manage
The lack of patient orientated research & treatment according to NHS Constitution & also Disability [ spina bifida ignored ] - Equalities Act
All the above but most of all others who do not fully understand how we suffer with this disease and how it affects our life and when we get depressed being different from others
Having to fight to get any treatment
Worried about the summer and how to walk around with compression stockings in the heat. Feeling fat and swollen. The fact that there is no cure
Moderation team