Hi sorry for all the questions but do any of you know how you developed lymphadema and does it get worse over time.I am struggling to get my head round this as to how I got it.I had a fall while on holiday and I don't know if it was that Or not
Thank you
These are questions you can also ask of your Lymphoedema clinic.
It can be induced by trauma, if an injury damages underlying lymphatics in the affected limb.
There is a form of Lymphoedema called Primary, which can lay dormant in a individual until they have trauma or illness which is enough to affect the lymphatics - usually one limb.
Are you under the care of a Lymphoedema clinic? If not - ask your doctor to refer you.
Thank you for taking the time to answer me I have lupus and bursts in both hips so don't know if it's another problem with having this x
When I came back from holiday I left it a couple of weeks and went to the doctor he gave me water tablets but they didn't work so he gave me different ones they didn't work so he has referred me to the clinic just waiting for an appointment
Hi Liz, I'm the same as you newly diagnosed in Aug and don't no how I got it but read you can get it with rheumatoid arthritis which I have so I'm blaming that and it's just something else I have to get used to having and get used to coping with 😏x
I have lupus and bursitis in both hip's also copi an waiting on an appointment to see a lymphadema specialist I think once I see about it and ask about it I might accept it
Thank you for answering my question x
No probs, keep us informed people of here seam friendly and are happy to help if they can x
Hi Liz, it may be worth keeping a notepad and pen handy so when you're at home and think of a question write it down, when you go for the appointment with the specialist take the pad and pen, ask, and write down the answers, may be worth taking someone with you to listen in, then you can both talk about the appt in more relaxed surroundings, good luck x
Hi, I hope you find the answers you are looking for. Your nurse will be able to answer all your questions. If the condition is caught early enough it can be controlled. I have primary lympodeama in both legs. Id always had chunky legs as a child but didnt think anything of it until legs started swelling during pregancy, which could be considered normal. However I was diagnosed with pregancy lymphodema and was told it would go once id had my child - it didnt and only got worse. It then took 17years to get an official diagnoses and a furtherv18 months to get the correct treatment! All the delay as caused my condition to become chronic.
Best of luck
I too have just been diagnosed with Lymphodema having been treated for Idiopathic Oedema for more years than I can count. I have been critically ill 8 times in hospital with Cellulitis and have been left with a very black left leg this time. I happened to see the right Consultant at the right time and am now waiting to go to the Lymphodema clicked regarding compression bandaging. What is that like and how do you cope in everyday life.
I have had compression bandaging for9 years it does make a difference but takes a lot of patience to cope with it ones I have now cuts when it slips so that in itself is another problem
Mine started following surgery to remove the lymph nodes from the groin
Hi JohnX1142 do you mind me asking when you had your groin nodes removed and how you feel in your legs and pelvic area. Do you have much swelling, and what about pain? Thanks if you can reply, if not I understand.
Hi Monica, sorry for the delay; we've been away.
Initially we had no idea about lymphoedema indeed we didn't know of its existence until just before my surgery for the nodes. I happened to notice a sign in Clatterbridge hospital which said, 'Lymphoedema Clinic'. The specialists nurses were useless. They didn't tell us anything and if we asked, the best answer that we got if any, was 'I don't know'. There wasn't even an offer to find out and come back to us. So come the meeting with the surgeon at the Christie I asked him about Lymphoedema and he said it is highly unlikely to happen. I've since found out that it is in fact quite common. That said I would have still opted for surgery as I believe it offers the best chance of halting the spread of your cancer.
Post surgery I got a very serious infection to both wounds. My wounds were bigger than I was told they would be; 7 and 8 inches respectively. I battled the infection for about two months with very poor nursing care. In the end my poor wife took over and overcame the infection through constant dressing changing but being meticulously clean in the procedures.
I had pain but I can't remember much about the level as I had strong medication. I do recall that once up and about that I had a lot of leg pain and walked with a heavy limp.
I began MLD treatment with the CANsupport service at Halton Hospital which resulted in reduced pain and swelling. The improvements took around six to eight weeks of treatment and the limp also subsided. I still have MLD every week. I still have pain and swelling but it is manageable now.
I hope that this helps.
John
Hi John thanks for your post. Hope you had a relaxing break.
I can imagine the frustration you feel around your care. Life seems a struggle in situations like this, when you just seek the proper care and attention, when gpfacing challenges. Gather not enough awareness is the problem. Good to hear things are stable now for you and coping well.
I have questions waiting to be answered from the Consultants, so we see how this progresses.
Best wishes Monica
I was told it can happen due to operations I was told this by a doctor not mine but a friend of a friend. I had 4 c - sections and a cyst removed from leg many years ago . I started suffering from lyphoedema for 20 years plus . First ten years made a few minor problems due to infections setting in cellulitis . The rest of the times it has slowly got worse at the beggining I had more good days than bad now that has turned round I very rarely seeing a good couple of hours . Constant pain restlessness mobility is almost zero I only get out to doctors and need somebody with me because being unstable on feet . The most annoying thing is not being able to do the most easiest of thing . I have this stupid illness in both legs and stomach I also have a large lump that hangs from top of leg to knee that when it swells it leaks fluid . I even lost 25stone as doctors said it would help it never made a blind bit of difference if anything it is worse as I have differculty in lifting legs to walk
Hi there, I fell off a cliff when I was 10 years old and a few years later I started to experience swelling of my legs. The heat was one of the main culprits along with flying and given that all my work life I was on my feet by the time I was 50 my legs took on the appearance of the elephant!!! But I was only diagnosed about 3/4 years ago.
I got lymphadema in my foot by lacing by ankle boots in January 2014 , it took till October that year to diagnose it as they said 'it is normally from a trauma'. My toes and the top of my foot have got a little bigger since being diagnosed . Claire
Hopefully you have an appointment with a lymphoedema nurse. Hopefully she will be able to give you all the answers and teach you how to do exercises to improve it. I wear a compression sleeve which now feels like part of my body - you get used to it. Mine is arm lymphoedema and I guess that yours affects your leg/s which might be more uncomfortable. Mine began after surgery
If you need help in the meantime, you could contact lymphoedema. org where you can find information or a phone number to speak to someone.
Hope you get sorted soon x
Mine is secondary in left arm following left breast and lymph node removal after breast cancer diagnosis.
My breast, developed lymphedema straight out of surgery but, was not diagnosed as such... My arm, I had moles in the garden, tried to flatten the soil with a shovel! Never again. Even cradling clothes over them lymphedema arm, worsens my deep cording! It really depends... Some people develop lymphedema straight out of surgery.
Hi, I primary lymphodema of the lower limbs and have done since I was in my early 20's.
Before this time my legs were skinny if anything, but slightly puffy ankles through my teenage years.
Mine first presented itself the first time I went abroad on holiday and it was due to the flight and the change of air pressures.
I'm now in my 40's and was diagnosed with systemic lupus in my late 30's.
So although I can pin point a trigger, when I had the lymphograme and venogram testing done when diagnosed at 21, I am primary as I was born without enough lymph nodes, so I guess it would have happened eventually, the flying just made it pronounced.
I hope you get to see someone to answer your questions and give you the help you need 
good luck x
I also have sle had it for about fifteen years but doctor think's it's been longer.My legs went like this after I fell on holiday I have flown for 26yrs and never had a problem with my legs swelling x
Mine developed after a wound on my ankle that was wound too tightly. The absolutely wonderful woman I saw at the Lymphadema treatment center explained to me that our lymph system travels through the body similarly to the circulatory system and its job is to 'clean up' any infectious sites or areas that might become infected. She said a too tight wrapping acts like squeezing a tube of toothpaste in the middle: all flow is blocked. And with the inability to flow normally, the lymph hardens.
How effective are compression garments?
fluoroscopic device ,how much does it cost 
