This is not a scientific educational article. It is my personal confrontation with lymphedema, similar to a travelogue...
If you ask me what the biggest difference between lipedema and lymphedema is:
The final realization that it is irreversible and will not get any better.
The pain that is often indescribable, that everyone feels and describes differently and the cause of which the doctors cannot really explain to us, is certainly the same. Once in the feed I read a table with the features that distinguish lipedema from lymphedema: lipedema hurts, and lymphedema does not! I wrote to the influencer that that wasn't true - she wrote back, 'Yes, the professor said so in his lecture and the health insurance company is sticking to it'. Since then I've lost interest in congresses - what should be explained to me that I don't already know?
Pain in lymphedema means that I have to act IMMEDIATELY if there are slight signs of swelling. Then it's time to stop sports, don't just put your legs up, but keep them horizontal, take off your compression tights, self-lymphatic drainage, bandage, drink tea, then move around with bandages again
Feeling: skin is bursting, edema is pressing on the joints, feeling of heaviness, climbing stairs or walking normally is impossible, waves of pain roll over me until I faint. touching hell. Muscles tingle, body aches, breathlessness. Technique: Breathe like contractions.
The blatant thing about secondary lymphedema is that it occurs unexpectedly after injury, you are absolutely not prepared for it and you may not get help immediately, but you have to explain yourself to the doctor at length. After the removal of the primary tumor everything was fine at first. And then I was lucky: On the eve of my major operation, in which my uterus, ovaries, omentum/abdominal mesh and more than 50 lymph nodes around the intestines and groin were removed, the surgeon casually told me that I would probably get big legs - that but that's not a problem, because I'd get a severely disabled person's pass immediately and then be allowed to retire.
I woke up upside down on the ICU bed with legs as big as my belly during the last few weeks of pregnancy.
Before the second operation they were very slim and I had a wasp waist, weighed 54 kg and was 1,70 m tall. The physio came to my bed every day, lifted the blanket and shook his head - there was nothing you could do except leave the footboard raised until the water was out. After 14 days I was able to walk with the rollator and for the next three months I got a waist belt around my body where my waist used to be. I could endure MLD for the legs after about two months. Then there was an emergency operation under CT control with local anesthesia because of sepsis and seroma in the groin, unforgettable: the chief physician came into the operating room shortly before the first incision and asked me whether I should not go by helicopter under the given circumstances wanted to be taken quickly to Erlangen, because they knew my complicated stomach situation there. Me in a fever (I didn't care) 'No, I trust your team completely' complete silence and concentration, in between 2x down the tube with the table, noise, and then relief and applause 'you can rely on our team' . It was the best September of my life! After the surgeries I only wanted one thing: peace and normalcy.
The abdomen was not lymphed until a year later, when I switched physiotherapy practices, because I realized something was wrong. After all, I owe the address of my medical supply store and the contact to my really great and competent Sanifee to my first physiotherapist.
My thigh tissue is soft, no lumps or hardening. Previous daily injections because of renal failure and later thrombosis prophylaxis with injections in the right thigh were terrible, but I could not object! I suspect that after 5 months the fabric was downright broken. Adipose tissue was almost non-existent. And this pain stayed, but got better with the compression and the bandages, even in the water when crawling or aqua jogging... only when getting out of the water... Short but recurring flashbacks and crying phases when I think about the cause and my mutilation . I read about a fellow sufferer and bang Trigger 'cry'.
Difference to lipoedema: I suspect that lipoedema develops slowly and perhaps unnoticed, quietly and secretly, and at first you just feel 'fat' - my girlfriend, for example, has a visibly protruding rear end and thighs like the Venus von Müngersdorf. I'm not overweight and don't look ill, so people and students don't treat me as ill, which in turn puts pressure on me and tempts me to be overly active, which is now clearly overwhelming me. From time to time I need to reconsider and revise my daily, hourly and life plans.
Feeling: Powerlessness, hopelessness, anger because I haven't behaved incorrectly, because despite consistently following all the rules such as dieting, exercise, rest periods, discipline, I simply cannot stop the progression. Desperation: when the lymphedema spreads to the arms and face despite compression therapy, sport and diet and the hands swell when walking normally. Over the years, the joints also become more unstable, when pulling up the compression, the witch shoots in the back.
Where will it end?
How it ends: I experienced it in the nursing home and especially in the outpatient nursing service: without help you can no longer get into the damn compression stockings. And always winding up, unwinding, washing creams, bandages and rolling them up (the nursing service does not take care of that). End station Wheelchair, chair and bed. Therefore know ich personally just lean lymphedema patients. Because we know what to expect and want to delay this situation for as long as possible.
An acquaintance, teacher, whom I met via Insta, is very slim. She has primary lymphedema on the legs, groin and pubic area, wears flat knit ccl 3 and two (!) supplies on top of each other, has already had her labia reduced in size (just don't publish it), second surgery is this summer. She's single... sidesteps and doesn't talk about it and is in rehab up to 2x a year. It must hurt like hell.
A young teacher, very slim, also with lymphedema after cancer in the abdomen, pubic area and OS, does not want to talk about it. She had bought a farm with her husband and prepared it well for the children - but now after uterine cancer .... She is trying to do triathlons again. We met freestyle swimming and she showed me her animal print under the jeans. But she, too, avoids talking about it – as do I: The subject has no place in bands, lessons, etc. We are 'healthy' again, fully involved and done.
A young, really fun-loving physiotherapist in the neighboring town got pancreatic cancer and lost 30 kg in a very short time. After several surgeries, now also abdominal lymphedema. This hinders the necessary recovery operations. And these operations, in turn, also favor additional edema. As far as I know, she doesn't wear any compression and lives a 'normal' life with a lot of sport, parties, etc. She no longer has a navel and feels terrible, is traveling from one clinic consultation to the next, is currently still putting off the topic of therapy.
exchange with other stakeholders
A fellow teacher with arm lymphedema wears baggy skin colored arm compressions and when I asked her about it she turned away and said over her shoulder 'I would never walk around like YOU'. Over, we're avoiding each other.
My compression below the chest presses on the heart, on the neck, on the arms, joints, hands. Chronic kidney and heart failure as a result of cancer.
I tried not to mention my circulatory problems to the doctor for fear he would forbid me to wear the compression that at least makes me look normal on the outside.
Without compression: Fascinating legs, barrel belly, running and climbing stairs goodbye. The pills, on the other hand, made me feel like a zombie, listless, and I finally crash like the grandmothers I know from nursing.
I'm afraid of social isolation. Not because I don't want any more social contacts, but because I can't do anything anymore. The mind becomes as immobile as the body. I experienced that for half a year.
And the whining of 30-year-old girls who start whining as early as Juzo's ccl 2 ... attracts them when you're 60 and overweight.
At the moment I lie awake at night and think: How much longer can I put on the fittings myself? The other day I caught lumbago while pulling up and had back, shoulder, neck and arm pain for days. My fingers, thickened by arthrosis, buckle at the joints when pulling up the compression and grasping the thick fabric.
Result: Synovial fluid leaks out of the finger cartilage, forms bumps, some of which open up and do not heal for weeks. I cover them with plaster and tape, but it takes time and restricts my work around the house. I have arthrosis in the wrists of the fingers, which I actually have well under control with the appropriate anti-inflammatory (vegan) diet: no further knots, standstill. Unfortunately, the joints are already unstable.
How long may I still wear compression?
High blood pressure, I can feel the pulse in my neck, the rushing in my head when I'm lying on the sofa. I still can't sleep because my thoughts are racing. My girlfriend asked if there weren't herbal remedies for high blood pressure: Sure - I take turmeric, I drink healing tea, do sports, I'm vegetarian or eat mostly vegan, and I also have to watch out for fats and sugar. I succeed 90% of the time. Every now and then I sin and feel terrible – first physically, then mentally. The body doesn't put it all away as quickly as it did with 30/40/50! For two years I have noticed that it is rapidly decreasing. Some days you don't see it. I'm pretty good at fooling around for a few hours when I'm meeting friends, working part time, or while working out at the gym. There and while walking through the forest and across the pampa I feel great, even an hour or two later. Then I get tired, either lie down and fall for two hours (then I can't sleep late at night), or I struggle to make ends meet at the stove, with gardening, cleaning, because the family has to be taken care of.
At some point I will need an outpatient nursing service, will be restricted here in the country, will no longer be able to make music with others because they are getting on in years.
It starts and hurts, sometimes fluid leaks from the torn cartilage and forms a bulge that opens outwards. And when pulling up the body part, I've gotten lumbago several times. I get embarrassed when my husband has to help me pull my pants up the back. Just for fun at the beginning we laughed about it and he grabbed me high off the ground. But now he's worried, watching me, maybe admiring me at first - now he's openly venting his worries: How long will this be good?
This is normal and final
Until then I'll fight against sluggishness, pounds, the inner bastard. High blood pressure, arthrosis, increasing limitations and dependence on others: these are horrific ideas.
Doctor, or now family doctor: I came to her the spring before last and asked her for a prescription for an arm brace because my hands and entire right arm became swollen after walking for 5 minutes without Nordic walking sticks. I then had the rest of the walk over my husband's arm over his shoulder. Hand and fingers were like an inflated rubber glove, no more feeling, elbow joint hurts. Since then I have hardly had any feeling in my little finger. Luckily I don't need it when playing the bass, but flute and bagpipes are passé - violin works (bow hand). At home decongestion gymnastics, even lympf, over night it went away again. Sanifee said that was extremely borderline. Doctor's comment (without looking or checking): 'I always have that in the summer, it will go away.' I didn't have the strength to disagree and just bandaged myself.
I waited nine months for an appointment with a phlebologist, drove almost 100 km, undressed in the examination room and waited. She walked in, saw my flat knit tights and said
"We only make vessels here."
"Yes, lymphatic vessels are also vessels."
"No, I'll give you the address of a lymphatic clinic."
It was the address of a rehabilitation clinic in the Bavarian Forest. The next appointment with another phlebologist is pending, so far the diagnosis of my gynecologist and that of the rehabilitation clinic after discharge from my first rehabilitation in 2018 was enough to get an arm fitting, but I have to see a specialist again for a permanent prescription.
The cancer can be conquered, but not the lymphedema
Even with consistent therapy, it progresses. For example, I have it in the middle of my stomach. First it spread to the thighs, then the pubic area, then sagged above and below the knees. Due to the pressure of the compression stockings, it migrates to the chest area (water bombs), now on one side into the right arm and into the hand. Armpits are thick. The best help at the moment: dumbbell training, whereby I always have to be careful not to take on too much weight, otherwise irreversible protrusions can suddenly follow. So I also bandage.
There are phases without pain because I just push it away and forget it.
But a day without sports, a walk or at least an hour of decongestion gymnastics is bad. Four hours on the PC and the day after I sneak through the house like an old woman with big legs, a big stomach and club feet. Then it has to be changed: 2-3 hours are needed with the preparation and follow-up per day: cotton hose, padding, layers of short-stretch bandages up to the groin, six bandages per leg. A thick lymph pad is put on the abdominal edema, compressed bermudas over it and fine tights so that nothing slips. Then onto the slopes, at least 45 minutes of running. If everything doesn't fit well, the bandages chafe me sore.
And then there are the looks from the neighbors in the village. They probably think I have a fetish.
I recently got a compression fitting from another company. It's not as chic and elegant as my favorite compression, but the knit is coarser - after putting it on for the first time, I had to go to the toilet to urinate half an hour later and then several times every hour, that's how well the 'bullet' works with spontaneous soft deposits . But she keeps not and wears out very quickly at the seams and chafes. So no solution - I'll stick with the best compression fitting for me.
On the subject of food: every sin has its revenge – even a sausage or a glass of red wine and the next day I feel like I'm about to burst. Up to 4 kg more, the stomach looks like a bulging air mattress with huge dents. It hurts so much in my thighs and pubic bone that I can't sit up. It then lasts 2-3 days until it is almost (!) gone again. My physio always looks at my stomach and then knows "Aaah, we've sinned again!" and almost completely pushes it away within 60 minutes.
I get scared as soon as the lymph nodes in my armpits swell. Anxiety with every infection that causes my face and neck lymph nodes to swell.
Always the anxious question: Is this a new cancer?
Cancer follow-up care every six months, 1-2 days with a trip to the university clinic. So far everything has always been fine. Afterwards, my husband and I treat ourselves to a trip to Thomann intreppe, look at the instruments and equipment and eat at our favorite Italian restaurant across the street.
And I know how it goes on: I've worked as a care assistant in social services in nursing homes and in outpatient services, and almost every patient wore flat knitwear. Always washed out skin-colored or gray and nie well seated. During the internship and training, I was allowed/had to help undress and dress and change bandages under supervision and guidance for three months and later for half a year in a residential group with outpatient care as a BT and nursing assistant. Often a torment for the old folks, and many fought back because the compression didn't fit, rubbed and slipped and got in the way.
The nursing service didn't really care: you just had to work according to plan. Later I was in social work in a home where the nurses took great care that new and good compression care was prescribed every six months. There I also did decongestion exercises with those affected every day and mobilized them individually and in groups. There were mainly residents with lymphoedema after cancer, but also men who had developed leg lymphoedema after injuries.
I have also seen untreated lymphedema and lipedema patients in the nursing home: lying on their backs unable to move, with multiple complaints, also mentally restricted, bloated and difficult to wash and mobilize. Kidney failure, cardiac insufficiency, thrombosis and skin ulcers included. On palliative care, my current physiotherapist was called at night to lymphate the face and neck and help the dying to breathe easier.
I couldn't take it anymore because of the pain
Those were exactly the years before and the year after my cancer diagnosis, because then I simply couldn't work anymore because of the pain, I got a disabled person's pass, wasn't allowed to continue working and had to apply for a pension. My lymphedema also developed during that year on the ward. I only had circular knit thigh highs for the first few months and after 6 hours of service and XNUMX hours of documentation I was unable to go down the stairs. When no one was looking I would just sit on the steps and cry. Sport wasn't possible: the children were still at home and the housekeeping called.
The first flat-knit fittings came right at the start of retirement, and things went uphill from there. I had time to inform myself and I literally threw myself into therapy! That was the best thing that could have happened to me. By the way, this is how I feel about the seasons: Stiff and sore in winter, everything is fine in summer. From what I've heard, people with lipoedema experience things differently.
Due to the pressure on my chest from compri, my voice often goes away (I've been receiving speech therapy for three years), and I suffer a lot from that. I can no longer sing or talk to tutors for a long time. Long periods of exertion are not possible because I get exhausted quickly. Vital functions are limited, strength training is absolutely necessary to revive everything.
Nicole Faccio on Instagram describes it: lymph presses on lungs and everything.
Another difference to lipoedema patients: I don't have to justify myself when my condition worsens, because even the family doctor credits me with the fact that cancer was the cause of the oedema.
But even the cardiologist pinched my stomach two years ago and said, "Girl, the have to go!". Of course, I now also have fat on my stomach, due to the lack of abdominal lymph network, the connective tissue is flabby and dented. I'm fighting the pounds, just like the lippies, with more or less success, but steadily: every kilo on the ribs puts a strain on my already damaged heart. Cardiac and renal failure were the attendant gifts to the edema.
The struggle for diagnosis and long-term prescription is the same for us compression wearers.
Dealing with the flat knit supply in everyday life too, as well as therapy and making a virtue out of necessity, i.e. reorienting oneself fashionably and having fun with something new.
Success and fun are crucial for the mental state. My hobby: collecting moments of happiness.
My advice, if anyone wants to hear it anyway: don't carry any extra pounds around with you, move around ('use or lose it' was preached to us in rehab, even to the bedridden patients) and eat properly. Heart and kidney problems may not be felt (except as tiredness and itchy skin), but if left untreated they are life-shortening and fun-killing.
Before I got cancer, I didn't carry extra pounds with me, nor did I let myself go in any other way. I'm still more agile and fitter than much younger women. What if I had been like this when I was forty? Give up or let yourself go and sugarcoat the situation with the euphemistic 'You are beautiful just the way you are'? No: Please do everything you can to free yourself from physical ballast while you can! Bones, joints and organs take revenge with age.
Unfortunately, I don't have a final word for you, but maybe that's a good thing, because life goes on. Circumstances, diagnoses and knowledge change. We can always adapt our attitude to the newly gained insights.
Panta rhei (gr., Heraclitus) = everything flows, as does the lymph.
And I'm sure I'll feel better tomorrow.
I wish you all the best and love
Links to Google Articles 'Sport with Lymphedema':
… and many others …