Lymphedema

[LaurenK93]

Hi, I’m 25 years old with Lymphedema. I don’t know much about it. I’ve been to several doctors over the years, none of them knew what was wrong with me. I was finally diagnosed a couple of weeks ago. In the past, i have tried water pills, compression socks, elevation and ice packs. None of this works for me. The swelling is painful and never goes down. I’m on day one of the sequential compression pump. - does this work? How long does it take to see results? I am tired of feeling ugly in a sundress. Not to mention the pain is unbearable. Please give me any tips or advice. Thanks in advance!

[Lynora]

Whereabouts are you in the world Lauren - let’s see if we can find you support nearby.

[LaurenK93 in reply to Lynora]

I’m in Missouri, USA!

[sharon1234]

So sorry to read this. I went years unmanaged as my doctors didn't know what was wrong with me either. I now wear double the made to measure compression stockings I wear to class 3 on my left leg through my own choice because it just will not stay down and the more I'm on my legs the bigger it gets. Water tablets will not work at its lymph not water I would try double made to measure compression stockings but it all depends where you're lymphedema is period pains in my left leg and it backs up to my stomach because I had cervical cancer and they remove my lymph nodes from my left side please can you tell us more about your lymphedema Leona might be able to give you advice on the pumps.. Sharon

[LaurenK93 in reply to sharon1234]

My Lymphedema is more near my ankles, and calves. The compression pumps have taken the swelling down. My legs will bruise and it’s a throbbing pain from the swelling. It gets so bad i can not wear my boots, and i have to dress up for work so sometimes i am at a loss.

[Lynora in reply to LaurenK93]

Lauren - is the swelling in both legs or just one? Did the swelling appear gradually or suddenly? Had you had a severe infection prior to it manifesting?

If you use the Search option above (little magnifying glass) look for Help in US or USA - there are several US based members here.

[LaurenK93 in reply to Lynora]

It is in both legs. It started my freshman year of highschool. I had no health problems and was very active in sports and cheerleading.

[sharon1234 in reply to LaurenK93]

If possible you need to get on top of it and get it well managed because otherwise it will just spread further up your leg mine spreading to my stomach... before I had compression stockings the made-to-measure ones ... my feet and ankles were huge but the compression stockings keep them well down... they is lots of people on here what can help you with some good advice but if the pump works I would carry on using it if it's possible

[LaurenK93 in reply to sharon1234]

So far the compression pump helps, i have 3 little ones and I’m having a hard time making time to sit and let the compression pump work for a while. I’m hoping i find a good routine soon, and i certainly hope i can make the swelling go down completely

[greens42 in reply to sharon1234]

Sharon and Lauren .I also double up with compression class three. But I use one legged (Left) tights x2 pairs at once which help with the swelling not developing in the stomach and hips area.

[sharon1234 in reply to greens42]

Are your stockings made to measure ones like mine having two of them Class 3 really helps I think

[Leg86]

Sorry to read this. I have primary genetic lymphoedema for the last 30 years. I went through 2 years of tests ct xray etc until I went private and saw at the time the top man. Where in the world are u.

I am lucky I don't have pain and due to my job it has got worse can't do stand up jobs anymore. I have recently been having the bandaging rather than my stoclings as work stopped me going to clinic. Here in the UK some areas are good for services. I see a good mcmillan therapy nurse for fitting measurement and general care. I hope you get to the bottom of this as it's a difficult thing to manage if pain. It it all the time or when walking etc. Mine get uncomfortable and stiff when very swollen but pain debateable. As lynora says where in the world are you we may be able to help.

Stay positive we are here to talk to for support or concerns.

[LaurenK93 in reply to Leg86]

I’m from Missouri, in the US! Hardly anyone from my area has this problem. I’ve only heard of one other person, and only one doctor knew anything about it. It’s been a struggle. I sit down at work a lot, i have an office job. It still causes swelling and i have constant pain from it.

[Leg86]

mercy.net/practice/mercy-th...

Hi Lauren the above link is a medical centre for cancers and associated problems including lympoedeama. It is in St Louis but talking to them might connect you with people nearer if that too far. Hope this helps.

Russ.

[ooehlke]

I feel for you. I also have it. compression pumps didnt help me at all. I wear compression stockings 9 hrs a day. I go to therepy and they massage my leg. that gives relieve but doesn't stay gone. I hate my big legs also and wearing stockings in summer brothers me. I also put ice packs on it. that's all I no what to do. Sorry.

[LaurenK93 in reply to ooehlke]

So far, my left leg is getting smaller. I fell and hurt my right ankle so that one is still swollen. The backs of both legs are still swelled but the front of my leg above my foot, the swelling is going down.

[shrinjoymukerji]

Buddy if I may , when and how exactly did you first notice your swelling and how did it all start start , does your skin leave a pit while pressed is there an indentation.. you can opt for a lva surgery which will have an affect and eventually reduce your legs to near half of its size but the effect takes nearly a years time post surgery hence patience is key , look up lva surgery for lymphedema.. hang in there fight this..

[LaurenK93 in reply to shrinjoymukerji]

I will have to look into this! My biggest issue has been that i don’t have great insurance so a surgery would be out of the question for me for now. Do you know if those results are permanent? My swelling started when i was 14 years old. It worsened after preganancy, it has never gone away ever since. Some days the swelling is not as bad, other days i can barely put a shoe on. There is no pitting. Some days it feels squishy, other days it feels hard. Depending on how bad the swelling gets. Whenever i prop them up my toes will tingle and a warm sensation takes over my feet.

[StellaM]

Hi there Lauren,nice to meet you,but sorry youre one of the merry band of lympho sufferers..its not much fun is it,and it can make you feel quite isolated. Its good to talk to the lovely folks here,but i never meet a fellow lymphie in my day to day life. It can make you feel a bit on your own.

Glad youre seeing some improvement in yr left leg at least,but sorry to hear that you fell..its a nasty shock when that happens. X

Does anyone in the uk have any info for me on getting a compression pump,coz it sounds like its helping Lauren?

[Lynora in reply to StellaM]

Hi StellaM - if you have a word with your lymphoedema clinic, they may either loan you one, or give recommendations on which devices may be suited to your situation. I've seen several clients come 'unstuck' by purchasing these things (which ain't cheap!) via the internet, and they have not been any use whatsoever -if resale doesn't work, dump them in the back of the wardrobe!

[adios44]

Hi

My daughter is your age with lymphdema in both legs.today after two opetation and daily message she is dping well.not cured but able to manage and live normal life with it.

Start edicating yourself via the internet.things are getting better scientifically ,help yourself!!

[sharon1234]

What operation was it if you don't mind me asking

[wanjira]

Hey Lauren,I'm also your age and suffered for a long time without knowing what was wrong with my legs,but a few years back I met a doctor back in my country,Kenya, who's been helping me with managing the condition, I'm better now,the swelling has reduced and I do compression stockings mainly.

[Heron23]

I've had this since 1976 in initially left lower leg and foot. Took 12 months to figure out what was wrong and then by accident via a lymphandiagram, injecting blue dye into foot and waiting for the lymph glands to drain away it. This did not happen, the blue dye seemed to spread. Conclusion was lymph glands torn, disintegrated (this was what had happened 12 months previously, very painful for a few days like a very bad sprain). So compression socks for years and about 10 years ago it spread to both legs!

Any infection can cause cellulitis which is again painful and dangerous. I was in hospital for 4 days in November last year with antibiotic intravenous drips for a week.... 4th Tim this has happened to me in about ten years... Leaves the skin very thin and permanent scar tissue patch on left shin. I use DIPROBASE every day to keep skin supple. Walking any distance is painful because of build up of fluid, gravity and now arthritis in both knees...c'est la vie....

I have been told it is possibly hereditary.

However my biggest bugbear is that I cannot find suitable wide leg trousers apart from cargo pants from Big Clobber (easy to find website). As a youth like many, jeans were my sort of fave clothing. Not any more for a long time now...

Today's fashion for men's trousers is perhaps rediculous...drainpipes! I search vintage shops etc for those wide leg trousers of maybe the 1950s....not much luck there tho....

The search continues!