primary lymphoedema

i have been told a month ago i have lymphoedema by the nurse at my gp surgery i have an app in few weeks at the lymphoedema clinic i have cellulitis at the moment 3 weeks of antibiotics have not worked i am in terrible pain my painkilling patches are not working just wanted to ask whats the diference with primary lymphoedema and secondary lymphoedema nurse at the surgery didnt tell me much information feel like im left and cant wait to go to the clinic to get some help and answers im walking around in flip flops as my feet to swollen to ware anythink was told i could get shoes on perscription ? cannot tolerate the compression bandages on my legs at the moment with the open cellulits and pain feel rather down and only knolledge i have is off the internet and this group ...

9 Replies

  • If you look at the website of the Lymphoedema Support Network it will give you loads of information. Basically primary is genetic (born with a lymphatic system that is not 100%, but problems don't usually show straight away) and secondary is caused by some sort of trauma to your lymphatic system, which damages it.

  • Primary lymphoedema is inherited i.e. you haven't developed it after an operation. You are fortunate to have a clinic in your area! Can't comment on the cellulitis -- I've had it 3 times and it's always responded to antibiotics after 8 days but one of the 3 saw me in hospital having antibiotics intravenously (can't spell that!) because of the high dose needed. Yes cellulitis in your legs hurts but less so if you keep your legs up! Keep in touch with LSN they are a huge help -- they persuaded me to come off "water tablets" after 20 years because they don't touch lymphoedema and that was good advice!.

  • Trudielee - if you are still in pain (with patches!?) and the cellulitis is not abating even after 3 weeks, then you should be referred to hospital. Actually, I'd be tempted to go to A&E without waiting to see the GP (or nurse) - sounds like you may need intravenous anti-biotics using much stronger drugs.

    You shouldn't need shoes on prescription once the lymphoedema clinic have assessed and treated you appropriately.

    Have you been referred to a local lymphoedema clinic? If you know which one, you can always call them and tell them your story - I imagine they would be pretty keen to see you sooner than waiting for the referral paperwork to come through.

  • I have always believed rest and warm

    Not hot. Compresses with feet elevated would help resolve cellulitis along with whatever the doc ordered. Let it heal.Iheal.If you eat yogurt,eeat some

    Because it will help you ,or get yeast

    Infection. IT works for me. I believe rest,

    Warm Compresses and relaxation will calm the pain. Hope this helps.

  • You Poor thing - it sounds horrendous. You might like to jump up and down (when you have a bad bout of pain and want to shout!) and ask to be sent URGENTLY to Pain Clinic at your local hospital - as it sounds as though you need that controlled first. Like you I coundn't tolerate compression garments, but managed to get MLD via my MEP - I've written about steps I took (not very difficult) on Key in MEP into Search. And Good Luck

  • Hi Trudie others have posted lots of really good advice already so I just want to wish you good luck in getting the cellulitis, pain, the swelling and down-ness resolved with LSN and lymphoedema clinic support. As others have noted you may have to kick up a fuss to get appropriate treatment. The situation is better in Scotland and Wales as both have less 'modernisation' impacting on NHS and also have National Strategies for Lymphoedema which drives service improvements.

  • So Sorry to hear about the pain you are in and long time it us taking yo heal.

    Simple Difference in primary lymphoedema is that it arises from existing weakness in lymph system and some are born with this. For those with secondary it was brought on by other disease or medical intervention like surgery to save us from cancer ,etc, sometimes surgery damages the flow of lmph fluid by either removal of lymph nodes or "glands " which are same thing. However it came about results are similar. This,from non medical person , means messed up fluid removal drainage system with compromised skin that needs lot of extra care and attention and cannot fight infection very well.

    I can only speak from my experience as I get arm cellulitis 2r 3 times and flucloxillin works for me mostly but I also take Penicillin every day too and have done for over 14 years. Leg is often worse I am told as bears weight.

    As others say you need medical help now as it is not trivial and needs to be addressed soonest. So please go kick up a fuss (with your good leg) a bad joke but you need humour in this game. Really seriously insist you get more help from medical teams. cellulitis has put me in hospital for week on drip antibiotics and shouldn't get to that point ever but sadly sometimes you have to push for help to get it. Which is rotten as you probably using all your energy to try fight infection and don't need to have to be a superhero too

    Good luck and hope you get relief soon,with best hopes for help.

  • Your loved ones and/or neighbours need to look for signs that you're delirious and you should carry a card about the risk of an Acute Inflammatory Episode. My mother, her aunt, my sister and I all have (or had) primary lymphoedema. My sister has it worst and had a hospital episode where she was thought to be a drug addict, which delayed treatment. Her specialist routinely recommends double the usual length for a course of antibiotics. My great aunt and mother had little or no treatment or problems. My sister has suffered since birth and an insect bite set mine off in my late thirties. While my leg swelling is far less noticeable than my sister's, my skin condition is much worse and I've survived cellulitis a handful of times, not knowing what I was going through. I consider myself lucky to be alive, especially more recently when I've waited my turn leading to delays over weekends when I should've already started on antibiotics. My sister had a fraught weekend in hospital with nobody around to deal with her PICC line :-(

  • I feel for you - I was in the same boat some months ago. I also have Primary Lymphoedema which means it is a genetic thing rather than cancer related. I used to get swollen ankles on any long flights, or in very hot weather - so did my Mum, and two of my sisters. However, As it settled down within a couple of days, I thought nothing of it. Then I developed severe swelling in both legs with inflamed and painful skin (I had an infection in the skin called cellulitis) after a spinal operation, which had triggered it all off. It took several months for me to get the advice and help I needed, but once I had seen a specialist in Lymphoedema and got the right diagnosis and treatment for the cellulitis, I have been able to manage the swelling much better. The Lymphoedema Support Network has a lot of information and advice - you can look them up on their website or phone them for info. I suggest you ask the GP for a referral to your nearest Specialist Lyphoedema Clinic for a proper diagnosis and management plan. You may have to be a bit pushy! My GP asked me to do a bit of research, which I did, then I told him where I wanted to be seen. The LSN will advise about where to get referred. all the very best!

You may also like...