What triggers Primary Lymphedema?

Lymphedema is a mysterious condition, I am sure you all agree with me on that. Especially Primary Lymphedema, as it can appear out of nowhere whereas Secondary is usually due to surgery where lymphnodes are removed or perhaps damaged in an accident.

After a suggestion from a reader I created this page to put some light on what triggers Primary Lymphedema to break out. Sometimes it is present from Birth and other times something causes it to start, although it was probably always lurking in the back due to a genetic defect. An accident waiting to happen.

Knowing what causes it doesn't really make any difference but I feel it could be interesting to know what triggered others Primary Lymphedema.

My own came at the age of 36 after loading a heavy shoppingbag onto the basket on my bicycle. Something happened in my back – there was a sound and great pain. I think this is what caused the Lymphedema to break out but I can't know for sure. I noticed the swelling a few days later. After the back injury I went to my chiropractor to be sorted out and she did some acupuncture on my back for the pain, perhaps that's what triggered it, who knows.

Anyway, I have also heard of insectbites triggering Lymphedema. Most seem to come out of nowhere though.

If you have Primary Lymphedema, what triggered it? Or was yours present from Birth?

Thanks.

48 comments:

  1. Hi, an intriguing mystery to me. What caused primary lymphedema? Mine started the morning after I drank too much wine after not drinking alcohol for 8 years. I have friends with lymphedema who drink and don't think there is a connection. I have also wondered if I were bitten by some insect that carried something to cause a disruption with my lymphatic system.
    Thank you for bringing up this question. It will be interesting to see what other peoples opinions are.
    Wendy

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    1. Hi Wendy,
      it sure is weird the way yours started. It seems anything can trigger it.
      Yes, it shall be interesting to see how others started.

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    2. Hi Wendy,

      For sure primary lymphoedema is intriguing! mine started with a slip - I was wearing high shoes and happened to slip. At first, i thought it was an ankle sprain and the swelling seemed to die down for a few days and the started over again and has continued growing for the last 12 years. Doctors seem not to have an idea of what caused it as there is no history of this condition on both sides of my family and have never been exposed to regions where lymphatic filiarisis exists - such a mystery and no curein sight - Nicole

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    3. can i still work with lympoedema as finding it hard to keep
      a job

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  2. I have no idea what triggered mine. It seemed to be that I'd just switched jobs and was sitting for much longer at a desk each day. Or maybe it was that my menstrual cycle started to change as I got older; my lymphedema therapist has said that hormones and especially menopause can trigger primary. Anyway, I had it once for a year, wore a heavy support stocking, and it went away and didn't come back for three years. Then it came back in the summer. I can't think of anything that could have triggered it that time either.

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    1. Hi Elaine, it seems it often comes out of nowhere. Interesting and strange that it went away for three years! My "good" foot is going bad, very slowly, and that seems to have come without any particular reason, other than the probably genetic fault.

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  3. I don't know what triggered my lymphoedema, perhaps it was there from birth but I'm not sure. What I can tell you is that I had a normal lifestyle through my childhood, and into my teens and early twenties. But when I was about 25 I found I could no longer wear knee length boots. They had been getting tighter and tighter each year until it was impossible to do them up at all. That's when I realised there was something wrong.
    The specialist I saw back then told me it was primary lymphoedema in both my legs. He also told me that there was nothing that he could do for me! I still have a vivid picture of that day, I felt as if my life had ended. That was back in the early part of the 70's
    Now I am nearing sixty and at last I have sought help again, I had been living in denial all this time, real head in the sand style! I have been prescribed compression stockings and will soon be able to have drainage massage.
    Hope I haven't nattered on for too long.
    All the best, Sue

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    1. Hi Sue, thanks for sharing your story :-)
      I can only try to imagine how devastating it must have been at 25 to have such a horrible piece of news! I am sure the compression stockings will provide relief and make the Lymphedema more bearable for you - and better late than never :-) I am always warm inside when lymphers having suffered for a long time gets the treatment they need, it really makes a difference in our quality of life. Good luck.
      Warm regards.

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  4. Mine seemed to happen overnight. NO ONE in my family, on both sides, have ever had this. Just me. Going from being fit, an actress and model, to being ashamed to wear dresses or anything showing my legs is beyond me. ALL OF MY MEDICAL TESTS are showing that I am perfectly healthy. However, since it looks like Lymphedema, that is how the doctors are treating it. It's not only a mystery, but, it's frustrating not knowing the how and the why and being told that it's something that I will have to live with for the rest of my life. VERY UNSETTLING!

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    1. Hi Michelle,
      overnight - OMG! No one in my family have ever had it, as far as we know. Apparently it is only sometimes inherited. There are many unknown factors in this. I agree, it is devastating getting a unsure diagnoses and being told there is nothing to do and we have to live with it for the rest of our lives! However, have hope! There are ways to controll it and although it takes time one gets somewhat used to living with it. We adjust.
      Warm hugs!

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  5. Mine settled in while I was pregnant and I thought it was just pregnancy swelling, but after I gave birth it never went away and I couldn't wear any of my shoes so I went to the dr. My sister already had been diagnosed (16 years older) and so I was familiar with the condition enough to know what it probably was before I went. Retrospectively, I think it was already coming before I got pregnant but the swelling and weight gain just exacerbated it that much more and I hope that when I get the babyweight off it will improve the swelling as well.

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    1. Hi Leslie. Thanks for writing. Yes, I imagine pregnancy could easily make the swelling much worse as it is a big ordeal for the body. I am sure you will see it go down after the babyweight comes off. Then there will be less tissue to have Lymphedema in.
      Warm regards,
      Liz

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  6. I was 11 yrs old when primary lymphedema precox first presented in my left leg out of the blue. I am now 59. It started with swelling of the foot & ankle and within a few months the entire leg was swollen. It took about a year before I was corrctly diagnosed with lymphedema and fitted with a custom support stocking, but by then the leg was a lot larger than the other. Both my parents came from very large families and I have siblings and two grown children and no one else in the family has lymphedema but me so it doesn't run in the family. 18 yrs ago I had my first and only MLD therapy which reduced the size of the leg a lot. It had gotten a little larger since then, but not much. Over the past 18 months I've lost 55 lbs and am now a normal weight for my height, and my leg got smaller along with the rest of me. It's still quite a lot larger than my other leg though. I am healthy and enjoy hiking so I'm glad the leg doesn't keep me from being active.

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    1. Hi Wilma, thanks for writing. Mine started like yours, first the foot and ankle, then the whole leg. It is strange that it only sometimes is inherited. I wonder if someone in my family has the genetic error but the lymphedema hasn't been triggered, who knows.
      I am so glad to hear you are healthy and that you hike too, it is wonderful that it doesn't keep you from doing things you love!
      All the best :-)

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  7. I was in 4th grade when my mom noticed my ankle being far too instantly and largely swollen after falling on it. In trying to find out what was causing the swelling I went from doctor to doctor for 9 months and the swelling grew up my entire leg before we learned it was LE and that a compression stocking could help. Thinking back on it, it possibly could have been from pulling my groin muscle really badly on the playground that triggered it, but I was so young its hard to tell. I went through some crappy treatment when I was younger too, but I have now gotten my leg down significantly from elevation, compression, and a change in my diet. I also try to dedicate one day per week to complete house-rest to give my leg a chance to catch up with the demanding activity of being a student, part of musical groups, and working. A day of rest and elevation goes a lot farther than most people will admit!

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    1. Hello Sopralto, thanks for sharing! I sometimes think that with Primary Lymphedema it could be anything triggering it and it probably would have come anyway. Who knows - so little is known about it really. We don't know if something actually breaks inside our lymphatic system or if the system had been working overtime since Birth and just couldn't do it anymore...
      It is so good to hear that you have gotten it down so much! It is very interesting what you say about taking one day a week with the leg up as I found, when in hospital, that elevation was much more effective than wrapping.
      Warm regards.

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  8. I am a 40 year old female who has been living with primary lympehdema of the left leg since the age of 12. it appeared out of nowhere. I was sent from doctor to doctor to see what was wrong with me. They did an angeogram and found out it was something called lymphedema. I was told that I was born with it, however it didn't show up until puberty. I come from a HUGE family, absolutley no one on either side has ever had this. Someone told me that while I was concieved that I hadn't gotten enough lymph nodes from my parents?? Of course with weight gain, and 2 cesarians things have gotten worse. This condition can really put me down in the dumps at times, I dont think I will ever "accept" this. I know it's not a good thing to feel sorry for yourself and have such anger over it, but this is how I often feel... let alone embarrased.

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    1. Hi there, thanks for sharing! I know all about feeling sorry for myself, being angry and sad and most of all embarrassed about having Lymphedema. I am not sure I will ever accept it fully either but looking back I can see that I have come a long way in learning to live with it, emotionally and practically. Still I sometimes get these patches of disbelief and sadness.
      It seems that it only sometimes is heriditary. No one in my family has been known to have it. From what I gather we are either born with less lymphnodes or with damaged lymphnodes. Who knows...
      Anyway, I am glad you found my blog :-) Know that there are many of us out there feeling the same way you do. You are not alone.

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  9. Can I ask if anyone has tried a nighttime wrap called Juxta-Fit Whole Legging Wrap? It looks pretty good to me!! I've used the Reid Sleeve, but I find it's bulky, awkward, and no matter how tall I order it, it seems to slip down, not to mention the velcro straps getting all twisted from years of use. And wrapping with the foam and bandages can be time consuming for a very busy mom.
    If anyone has any other good tips for night time wrapping and/or garments I would so greatly appreciate it :)

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    1. Hi there, thanks for writing :-)
      I haven't tried the Juxta-Fix but I have a Jovipak nightgarment. It is a slip-on thing with no straps or anything. I haven't produced miracles on me but it is not too bad and I think it does a good job of keeping the tissue soft and mobile. I just recieved a Farrow Wrap to use over the garment, haven't tried it yet but will post something when I do.
      Warm regards,
      Liz

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  10. I am 42. My arm started when i was in my 20's. Just diagnosed last yr.

    I feel ugly. I hate myself.

    I need people that live with this to help me accept this. At the moment i just want to cut my arm off.

    My email is sarah.beal70@ gmail.com

    If anyone can help me.

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    1. Dear Sarah,
      please don't cut your arm off!
      You are not ugly! I think you look very beautyful, kind and loving on the picture. You are so much more than your big arm! I understand though as I feel very bad about my big leg too. However, I am beginning to see that others think it is nothing - in a good way - and perhaps I am blowing it out of proportions, but it is hard not to.
      You are not alone! Know that there are many of us out here.
      It is many years you have been undiagnosed, I am sad to hear that but I am glad you are finally sorted out so you can start your journey forward. Things will get better, I promise. It may take a while, but it will.
      I wonder if you have had any treatment at all in all those years.
      Have hope, you will learn how to manage this condition. Remember, you are the boss, not the Lymphedema! It is you who controls the Lymphedema and not the other way around!
      Warm regards,
      Liz

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  11. Hi, I am 32 with three small children ages 5,4, and 2. I do not have lymphedema but do have chronic venous insufficiency in both legs so I completely understand the emotional roller coaster that these diseases have caused. I have to wear compression hose on both legs from the moment I get up in the am until I know that all I have left to do is lay on the couch for the evening. I am in pain all day long and have found my quality of life to be greatly reduced and I have a very hard time taking care of my family which also consumes me with guilt like I have never experienced. My husband has been a huge help, but he works all day and then has to come home and cleans up because I am not capable of doing it. I am not at the point of accepting this yet and I was just diagnosed 5 months ago so am trying to slowly change my life and accept this as my new normal. I do not remember how I came across this blog, but wanted to let you know I understand.

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    1. Hi Kelly, thank you for writing. I am sorry to hear about your situation. Like you, I have to wear my stocking from I get up till I know I am not doing anymore that day. It sucks. I am sad that you are in pain all day long. Do you think acupuncture could do something about the pain?
      It can take a long time to come to terms with the new situation. For me it took more than a year for things to look a little brighter. I can see now that I have come a long way. You will too, have patience!
      Please don't be hard on yourself about not being able to do as much as you used to! It is not your fault - it is something that happened to you.
      Warm regards,
      Liz

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  12. Hello,

    I am 29 and was diagnosed with primary le in both lower limbs ten years ago. It was a hot summer, and I had a lot of mosquito bites. I saw my feet were swollen.

    They told me to do a lymfescintography. One year ago I fell and now one leg is much worse.
    I guess now I know much more about how it works. I am almost convinced that I had it all the time. In my 'good' leg you can almost not see any signs: only in summer my foot is a little bit swollen.
    But.... on the lymfescintography it showed that also in the 'good' leg I have a huge problem.
    So it does not mean that if you don't have any symptoms there is no problem....
    You only get the symptoms by some stupid things like a bite, a hot summer, extra weight,...

    I am working very hard on this and even though it is there in both legs, and it is tricky, I am really considering to have a lymph node transfer...

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    1. Hi there, thanks for writing :-)
      A mosquito bite can indeed trigger a lurking Lymphedema, and it seems that almost anything can trigger it. I too think that with Primary Lymphedema we have it from Birth, and sooner or later something triggers it to break out. However, I imagine that some might never have an outbreak and never know about Lymphedema.
      My good leg is very slowly going bad too, it seems. It sometimes swells around the ankle but it doesn't seem to have developed since it started 18 months ago. I wonder if it is Lymphedema or something else, who knows. This condition surely is mysterious.
      Please consider your options carefully before having surgery and stay tuned, I am about to post something about a Lymphaticovenous Anastamosis (LVA) surgery.
      Warm regards
      Liz

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  13. Have had lymphedema for about 15 years. Have always had heavy legs but the swelling started after I helped my school clean up after a flood. (No good goes unpunished, Right?) Anyway I have the pumps and have lots of leg wraps and compression stockings which I hate. I even know the massage activities that help.) I guess you could say I have tried to hide my head in the sand until I can not longer. I had just learned to wear lose-fitting long pants and long skirts and concentrated on upper body appearance. After all of this time of covering it up and wearing the stockings once in a while, my legs have, at times, become rather painful.I have even taken fluid pills trying to lazily help, but I don't really think it helped anything. I have started pumping every evening for 2 to 3 hours and am trying to get relief by wrapping afterwards and before bed. I know the treatments DO help but don't make it go away.But now that I am retired I am trying to deal with it head-on once again as well as lose a bit of weight. I've been looking for juicing suggestions that might help, but so far have found little. I wish all of you success as you deal with this malady.

    Jane

    PS I didn't tell you that my mother had one leg that swelled and that she kept an elasticized stocking on. She said it hurt like a toothache and now I understand.

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    1. Hi Jane, thanks for writing :-)
      You really are doing lots of things to make your situation better, hats off to that! 2-3 hours of pumping - my pump has been collecting dust for a while now and I can't be bothered to do the lymphedema exercises either - it is not motivating that it doesn't seem to help much.
      I juice but more for general health than for my leg as I haven't noticed any change due to the juice. I heard that celery is supposed to be good for cleaning the lymphatic system but who knows. As you may have seen here on the blog I tried wheatgrass for a long time but with no results. I do think that it is possible to achieve even remarkable results by cleaning ones system up but I think it would have to be a big and ongoing spring cleanse.
      Take care, and thanks again for your input,
      Liz

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  14. I just found your blog today. I plan to read all of it!

    Mine started at 13, right around puberty, which I guess is pretty normal. Both my feet and legs swelled and the pain was excruciating.

    I still have it now at 36 but the pain is gone. Sometimes I have shooting pains in my feet. They both swell, dry out, itch, have limited movement, etc. I absolutely hate having it.

    Maybe I can find some tips here on how to minimize it, but it's something I'll have to live with forever.

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    1. Hi Elizabeth,
      thanks for reading my blog, I am glad you found it :-)
      I am sorry to hear about the massive pain you had when very young but glad it is gone now. It does feel like a life sentence and I guess we must accept that we may have to live with it for the rest of our lives. However, scientists are working on various things including a drug that can help develop new lymphatic paths and there are also promising discoveries within surgery for Lymphedema so who knows...
      I hope you will find some tips here and I hope you will want to comment again.
      Liz

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  15. Mine started in my mid teen years. I swell all over - especially under my eyes, my fingers and from my knees down to my toes. It is definitely genetic. My sister has it, though not so bad, and from pictures I have seen of my Dad's family, I'd say his mother and grandmother had it, too.

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    1. Hi there, thanks for writing! I am sad to hear you have it all over. It is not that often we hear of patients who has it all over but I did speak to a lady at this years patient weekend who swelled in most of her body too, especially leg, face and fingers. I hope you are coping.
      Warm regards.

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  16. Wow, I'm so happy I found this blog! I've had primary lymphedema in my lower legs since my 14th birthday. It runs in my family, my little brother and my dad. My dad's big sister (but not his older brother or younger sister.) However, my brother and I are the only ones of our cousins that have it. My aunt who has it has three kids, and none of them have it. Between myself, my brother, dad and aunt we all have it in varying degrees. My dad and I are about the same, however I show more in my left leg than my right. My brother seems to only really swell on his feet, and then moreso when it's cold outside, which I find weird. My aunt's is really, really bad. It might be because she's the eldest. We're not really sure which of my grand parents it came from. I've had cellulitis in my left leg about 6 or 7 times and now I'm 28. It really sucks.

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    1. Hi Better Days, thanks for writing :-)
      It sure runs in your family! Strange that you aunts children don't have it. Lymphedema is such a mysterious condition... No one in my family seems to have it. You are right, it is weird that your brother swells more in cold weather - usually it is the opposite.
      Cellulitis 6 or 7 times - OMG! I think it takes a very long time for the immunesystem in the affected limb to recover from Cellulitis but I believe that if we can stay away from cuts, scratches etc. long enough sooner or later we will be back to where we were before the first bout. Who knows... After I had Cellulitis last year I realized how careless I had been and now I will take my precautions when going away again or just when not in my usual routines. Spot on - it really sucks!
      Liz

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  17. Hi i'm so glad to find this blog ,I've just been diagnosed with primary lymphedema only this week ...All my adult life I had this lump on side of back of me knee ...ive always been overweight and come frm an overweight family ,so every time I went to the doctor about it they told me it was only FAT and if I lost weight it would go. In my 20's I had swollen ankles and blamed te weight ,which was probably the start of it then developed bulging varicose veins on both legs ...but my right leg always looked more swollen than d left overall ,I've always hated this obvious abnormality learned to live with the stares at the pool etc,never wearing shorts or skirts..,but always believed if I lost weight that it would go and now I discover that its a genetic disorder that I have to learn to live with for the rest of my life,even after my great weight loss...Im 40 now, A yr ago I joined slimming world and lost 3.5 stone and decided to go about getting my veins removed thinkin with the weight loss and the veins gone id have half decent looking legs ...fast forward a yr and 6 stone down , I had my veins in my left leg removed in April ,all went well my leg went down 2.5 inches ,I couldn't wait to get the right leg done ,alas at my recent appointment my surgeon told me that I had lymphedema and it was too risky to operate as I could be left even more swollen [ I was devastated..He thinks that it was the wearing of the support tights for 8wks after my vein surgery that helped my leg go down more so than the vein removal ,and now he wants me to do a 3month trial of wearing 2 grade tighter support stocking on both my leg to see if it reduces my swelling and the lump ,i've also to look into getting lymph massage ...Since Wednesday i've just being doing research to learn all I can about this, discovered my mam had a touch of it and my dad too in the legs ,my sister may have it also now we know what it is ...I have a healthy diet and walk and swim and am determined to lose the rest of my weight and by doing all the suggestions of my surgeon I hope I can reduce this lump somewhat ,Ive had a few cases of cellulitis ,but have vowed from now to really look after my skin and feet regimes and avoid getting ulcers and other things that can come with this ...sorry for long post ,ill be checkin in here for all tips and advice from all u lymph sufferers ....
    In one sence im glad I've finally found out that I actually have a condition and it wasn't just fat ,just wish I had found out sooner than 20 yrs of torment ...

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    1. Hi there, thanks for writing, and for reading my blog :-)
      Lymphedema sucks but it is fantastic that you now have a diagnosis so you can get treatment and learn what to do to get those legs downsized. I think it makes sense what the surgeon said about it not being the removal of the veins but the compression stocking. They can do a lot, you know, those stockings. I surely couldn't do without mine, I put them on as soon as I get out of the shower in the morning and take them off as the last thing before climbing into bed.
      You are a living proof of just how ignorant many doctors are when it comes to Lymphedema. It makes me angry! That's why I created the info-flyer about Lymphedema.
      Well done with the weightloss, yay! With less extra weight there is less flesh to have Lymphedema in, as another lympher once said to me.
      Yes, beware of Cellulitis, pretty nasty!
      I hope that you now get some fitted compression stockings that you can wear at all times and that you will also find a good therapist to give you MLD (manual lymphatic drainage).
      Take care, and please stop by again, I'd love to hear how you get on!
      Liz

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  18. Hello,
    My name is Kimber and I have severe primary lymphedema in both legs. It started when I was 6 years old. I just turned 38 and I've been through absolute HELL on every single level you can possibly imagine when dealing with lymphedema. For the past 20 years I've been living in and out of hospitals due to chronic cellulitis. I've been to different hospitals, clinics, treatments, all kinds of medicine, and traveled to different states just to try and find relief. Next month I'm going to New York City (I live in Maryland) to have the first of three lymph node transplants. My heart goes out to everyone and anyone who has this disease. I've spent almost my entire life trying to hide or even talk about lymphedema because I've been so embarrassed. I'm now starting to change my way of thinking. Finding websites/blogs like this has been so helpful. I'm learning that I'm not the only one who is dealing with lymphedema as I've always felt so alone and isolated. Liz, I love that you have links about clothes and shoes. I find this to be so extremely helpful!! I'd like to thank everyone who posts on websites like this, as us "lymphies" need to stick together and give as much support as possible. Has anyone else had a lymph node transplant?
    I've posted my story on another website (Helen) who is from Australia. If anyone is interested you can read it here http://lymphnodetransplant.wordpress.com/2013/08/07/i-have-had-primary-lymphedema-since-i-was-six-years-old/

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    1. Dear Kimber, thank you for your comment here and thank you for sharing your story on Helens website, which I have read. OMG! I am so sad to learn about the ordeals you have gone through and how much you have suffered through the years. My heart really goes out to you. I don't know how you managed... You must be a very strong person. Meeting your husband and having your children must have been a miracle in those tough times.
      You truly prove the quote at the end of your post on Helens blog. I am exited for you about the transplant, please keep us all posted on your progress - you must have had some of the procedures by now!
      Thank your for your warm words, I am glad you found my blog and all us lymphers :-) You are spot on, we need to stick together and help each other.
      Looking forward to hearing from you again :-)
      Liz

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  19. My name is Ashley and my 5 year old daughter was diagnosed with primary lymphedema when she was 4. We haven't been dealing with it long but it has been very hard thus far. Not 100% sure on what caused it but right before I noticed her right foot was swollen she had been really really sick with some viral infection which made it hard for her to move at all. She was so sick for about a week and the swollen foot showed up a few days after she seemed to be feeling better. She suffers from a few other things that might be connected but I do not really know for sure. She has dermatomyositis without any of the muscle issues. They also diagnosed her with JIA because of some knee pain and some positive labwork she had. With her autoimmune issues then getting as sick as she did, I think that may be what caused it. I'm having a hard time with it. A very hard time. I really would love to meet other Moms with children who suffer from this. My daughter also has severe hearing loss and wears hearing aids so receiving all these new diagnoses within the last year has been an emotional roller coaster for me. I just found this blog today because I'm having issues with finding shoes for her. It has been very interesting to read and I'm sure I'll be back again and again. Thank you for sharing your life with us here on your blog. It's helpful. :)

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    1. Dear Ashley, thanks for writing, I am glad you found my blog and I hope you will find things here that might be helpful. I am so sorry to hear about the many challenges you face with your daughters health, it must be overwhelming. Perhaps some of the other conditions have damaged the lymphatic system, perhaps these where the triggers that caused Primary Lymphedema to break out. There are so many unknowns with Lymphedema.
      About shoes, what I do mostly is look for wider styles and get them in two different sizes, one for each foot, perhaps that could work for your daughter too.
      I hope you will find strength to overcome the challenges you and your family have. You are not alone, and your daughter is not alone having Lymphedema.
      Thinking of you.
      Liz

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  20. Hi, first time on this useful blog! I've just been diagnosed 6 weeks ago, at 52, with Primary lymphodema, but looking back may have had symptoms for a while. Suddenly gained 4 stone in 2 years (menopause and other issues!) and it feels a bit chicken and egg - did the weight gain put stress on the lymph system, how much of a part did hormones play, how much of the weight gain is lymph not moving? Some of it is lack of exercise after an injury flair up, and some is - I freely admit! - excess yummy stuff self-indulgence after a difficult time in my relationship! I've started MLD massage and am learning to do it on myself, also working with a fitness trainer twice a week to try and get myself moving more effectively and lose any weight which is purely fat to take the strain off. I'm working with the emotional issues that may have contributed to any stress as part of the trigger and at the very least aiming to improve self-esteem that has plummeted along with suddenly turning into a blimp after 30 years as a size 10-12 (UK).

    Anything that works I'll share! Wishing all here a life filled with love, life and laughter x

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    1. Hi Jen, thanks for writing, and for reading my blog :-)
      it is impossible to know if it was the weightgain, hormones or something else that triggered it, but it was probably always lurking in the back, just waiting for a chance to break out. That's what it is like with Primary.
      It is great that you are learning to do MLD on yourself - well done!
      I totally know about emotional issues and a self esteem that hit the bottom but trust me when I say that even though the first many months may be difficult there are better days ahead. It takes time to get our heads around all the consequenses of this diagnosis and we have to reinvent ourselves. The good news is that we find strength that we may not have thought we had.
      It is good to have you on board here, looking forward to hear from you again :-)
      Warm regards
      Liz

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  21. Hi everyone, I got a swollen ankle/foot when I was kicked by a horse as a 15 yr old. Since then it has swelled in summers, and during pregnancies, but manageable. Now I'm 56, and my youngest (at 15) had the same foot and ankle swell up!! About 4 months ago, mine swelled so big that no shoes would fit, even unlaced sneakers. It was finally time to see a doctor. I finally found my way to a Lymph specialist, but I swear NO-ONE in my medical community had any clue as to what lymphadema was, or who I should go to. I heard - broken bone (nope), Vascular issues (nope), allergies (nope)...why is this disorder so unfamiliar to so many? So for me it definitely is inherited. I am going to try acupuncture first, then massage and wrapping (it is extremely hard to get an appt for massage around here). Any dietary/exercise advice anyone can give me?
    Thanks!!! -Sher

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    1. Hi Sher, thanks for writing :-)
      Unfortunately many, many doctors don't have a clue about Lymphedema - neither did mine when I first walked in. I guess some of them knows about arm Lymphedema as a result of breast cancer but simply can't connect it to the same condition when they see a swollen leg. If you want you are very welcome to download and print the little flyer I made about Lymphedema and hand it out in your medical community to help raise awareness. You will find it overhere to the right.
      I hope you are having some good results from the massage and wrapping. I find the massage heavenly! You probably had the acupuncture by now so a little late to say that one should avoid needles in the affected limb. I didn't know that when I had acu and nothing happened (didn't harm but didn't help a bit either).
      Dietary wise I recommend cutting down on salt and alcohol, and as you can see in my little, unscientifically poll over to the right some say that sugar and dairy also causes extra swelling.
      Warm regards
      Liz

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  22. I have primary lymphedema in both legs. It all started around 13/14 when I was going through puberty. I thought they were bad shin splints from track and field. It got really bad around 16 when I started going to beauty school to do hair. It just got worse and worse till I was about 20 and finally got diagnosed and treatment. I had to stop doing hair around 21 because the pain and swelling became too unbearable. I now go to school fulltime, wear compression stockings, use my flexitouch system, workout, eat well and had vein ablation surgery (I also have deep vein thrombosis so that made the my lymphedema worse). I now am living an almost normal lifestyle. :) Still a pain in the butt but bearable with not as many bad days.

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    1. Hi Kate, thanks for writing :-) How wonderful to hear that you have managed to turn a desperate and sad situation around and now live an almost normal life and even went back to school, yay - well done! I too live an almost normal life now but it has been a journey. Just now, after more than five years, have I been swimming in the sea this summer, frightening but wonderful, and another border crossed!
      Liz

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  23. Hi, just turned 62, so glad to find this wonderful blog and you folks! I have been having a bad year, mine reared it's ugly head in late Feb of this year, I did strain my left arm and was having PT for that, but kept thinking something else was wrong,
    I've had blood test, ultrasound on my armpit, x-rays, 2 trips to a Breast Surgeon, mammograms...everything is fine. My left arm has been swelling and I have truncal swelling, and in an act of solidarity my right arm is showing signs of it now too. I've lost 20 some pounds, intentional, and yet I have had to add 2 inches to my bra and it is still tight. The general diagnosis from my Primary Quacktionier and Breast Surgeon is basically I'm old and overweight and have bad posture and "chest wall' pain. He said to go back to PT, but I'm not going, they roughed me up the first time jerking on the arm that is having the most swelling.
    Neither the Breast Surgeon or my Doc seemed concerned about my swelling and pain.

    I've spent the last 3 months trying to figure out my problem myself and started reading about lymphedema..BINGO!
    I still haven't been back to the Doc, and when I do I am finding somebody else to take me seriously and actually listen to what I am saying.
    I also have a small lump coming and going on the back of my left knee, but it is better now. My doc ordered a MRI a few months ago for my knee, but my Insurance didn't approve it. Now I am going on week 4 of waiting for them to approve a CT scan of my upper body to check out the axillary swelling. Still haven't heard back and at this point I really don't care if I have it or not.

    I just bought a rebounder and hoping that helps, also doing mild stretching, watching my diet, etc i am showing some slight improvement, but I have to slowly work up to more time on the rebounder.

    Thanks for being here.

    Now What

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    1. Dear Now What, thanks for writing, I am sorry it has taken me so long to reply. I image that by now you know if it is Lymphedema or not and I hope you are recieving appropriate treatment. Well done with the rebounder! I have one myself and have had good results too. Thank you for your kind words and for reading my blog.
      Warm regards
      Liz

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