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Explanation for excessive generalized edema?

Discussion in 'Other Symptoms' started by Wyva, Jan 29, 2021.

  1. Wyva

    Wyva Senior Member (Voting Rights)

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    So this is something I mentioned in my introduction and doctors are really dismissive of it, but this is such a huge issue in my illness that I'd like to find some kind of answer. Sorry if this is long but I'd like to explain it as well as I can.

    My PVFS was a direct continuation of my EBV infection, basically most of my symptoms just never went away after the infection itself was gone and they are still the same symptoms even now, just milder.
    One of the first symptoms was what looked like generalized edema. It happened during one single afternoon/evening that my weight suddenly started to increase (several kg in a few hours) and my belly started to become bigger and bigger, to the point that I panicked and rushed to the hospital at night. They sent me to internal medicine right away but there they couldn't explain it and I got the impression that this was not the kind of edema they were used to when they examined my body.

    Then during the mono infection it stayed and actually became worse even after the infection (about 10 kg at some point - I looked quite distorted because I'm really tiny and I had to buy bigger clothes), then very slowly and gradually I started losing it over the course of 2 years, as my other symptoms got milder too. Afterwards it stopped going away and I still have it to a smaller (but still visible) extent and now it's just forever there, like my other remaining symptoms.

    It is generalized. I first noticed it on my belly but it is everywhere. It is more pronounced on my midsection and legs (thighs mostly but also lower legs, but not so much on the feet). It responds to gravity and moves during the day. In the morning my face is swollen, more visibly in the upper eye area but it is everywhere, my nose etc and my whole face are bigger too. Later during the day my belly and legs get more swollen and my face less so.

    It is not independent of my other symptoms: when they are stronger, the swelling is significantly worse and when they are milder, the swelling is milder. I use a scale to measure myself every morning and my morning weight is a laser-sharp predictor of me having a good or bad day that day. If I start to feel worse, my weight starts to change immediately too and I feel my trousers tighten and I can physically feel my belly grow and tighten too.

    The bad part: the really excessive swelling was never checked with ultrasound but the current version was (I believe it might be 3-4-5 liter now) and the ultrasound didn't show it. My doctors say it is not water because they would have seen that. They say it is fat but there is no way this is fat, it changes every day and gravity affects it. They say it is not pitting, on the other hand my tongue always holds the shape of my teeth (but not before).

    I know it doesn't sound like an ME symptom but this is definitely connected to my illness.

    So has anyone seen anything like this or has an explanation? Thank you. :)
     
  2. Snowdrop

    Snowdrop Senior Member (Voting Rights)

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  3. Wyva

    Wyva Senior Member (Voting Rights)

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    Thanks!

    I actually read about lipedema before and stage 1 of that does look a bit like how it is distributed on my legs (mostly the upper legs but not really the feet). But mine also affects other parts depending on the time of day and gravity and can change quite rapidly and significantly in a short time. Also, I don't think I have the fat that causes it. When I have a good day, sometimes it is almost completely gone from my stomach and legs in the morning, and you can clearly see the muscles and bones (I'm quite skinny). So I don't think the fat part of lipedema is there. It kind of seems like it and doesn't seem like it at the same time :D
     
  4. Hutan

    Hutan Moderator Staff Member

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    I wonder if you could take photos when it is good and bad, not many days apart, perhaps with a tape measure? They might help when you are trying to convince doctors.

    I get some swelling that comes and goes - I don't wear my watch or rings now - although not as pronounced as what yours sounds like. I've seen my son get quite puffy in the face and elsewhere when he's done too much. Maybe there just isn't enough energy to regulate fluid levels properly?
     
  5. Mithriel

    Mithriel Senior Member (Voting Rights)

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    I get swelling. My stomach looks as if I am pregnant and goes hard as a drum and I put on about 4 lbs. I also get swelling in my throat, lips and nose.

    Many years ago I read a report or research that said that people with ME can accumulate interstitial fluid which gave me a cause for what happens.
     
  6. Wyva

    Wyva Senior Member (Voting Rights)

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    Thanks, that's great, I'll try to look it up. :) I'm happy that I'm not the only one with this, I started to feel that I'm a mystery within a mystery, which is not as good as it sounds. :D
     
  7. Florence

    Florence Established Member

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    Hi Wyva
    Just to say I experienced a sudden overall 'increase in volume' at the immediate onset of my ME which followed a virus - more than seventeen years ago. I went up two dress sizes in the space of a week. Over the years this has remained pretty constant, and only really reduced when I had a period of total rest and dietary change combined with a lovely long holiday. Like you my experience of ME has felt like a non-stop continuation of the virus that triggered it.
     
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  8. Wyva

    Wyva Senior Member (Voting Rights)

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    Thank you very much for sharing your experience, Florence!

    It's good to know that at least a few others have this atypical symptom too, whatever causes it. Yes, I know the feeling of suddenly having to buy a lot of new clothes due to the rapid change in size (then later having to buy smaller clothes again, because most of my "increase" has disappeared but not all of it).

    Welcome to the forum! :)
     
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  9. Aslaug

    Aslaug Moderator Staff Member

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    I only have it a bit now, previously I could gain ~4-5kg during a crash, which would then disappear. Now maybe two? I've been thinking it has reduced since my muscle mass has decreased (muscles can hold more water than fat), but I don't know. My mother had a friend when she was younger who had two sets of clothes due to edemas related to her period.
     
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