Explanation for excessive generalized edema?

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.

 

I don't know anything about this but it reminded me of a thread here:

https://www.s4me.info/threads/lipomas-dercums-adiposa-dolorosa.16010/

 

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

 

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.

 

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.

 

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.

 

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!

 

Ok, I think I've found what looks the most similar to what I have.

(As a summary: this generalized edema is one of my worst symptoms and it appeared with ME/CFS and it gets worse or better together with the other symptoms I have but it never fully goes away. Ultrasound didn't show it unfortunately and it is also absolutely not like when water gathers in your lower legs and feet. During my worst days it was 10 kg (about 20 pounds) and because I'm tiny, it really made me very distorted, disproportionate. I was afraid to go outside, I didn't want others to see me. It still distorts me, to a lesser extent. In the morning a lot of it is on my head and in the early, worst days my face was more similar to that of a lion than a human due to all the bloating, it visibly looked very odd. Even today it can cause me huge physical discomfort. )

I never understood what this was, neither did doctors, and they didn't believe it was water. However, it must be some liquid because it responds to gravity and comes and goes very quickly, even within a day.

So anyway, I never had really noticable period bloating in my life but this is what mine looks very similar to (google search results of photos): https://www.google.com/search?q=per...Ve8rsIHVfSCW0Q_AUoAXoECAEQAw&biw=1366&bih=657

It's everywhere on my body but most of it tends to gather on my belly (and also thighs) in the exact same shape as for these women with the period bloating. So I wonder: would theirs show up on the ultrasound, unlike mine or not? Is it possible that somehow my ME/CFS affects my hormones? Because this is absolutely connected to my illness and other symptoms, whatever it is.

I know this is not a very typical symptom but I wonder if it is technically possible.

 

Could your problem be myxedema (US spelling, or myxoedema UK spelling)?

https://en.wikipedia.org/wiki/Myxedema

The swelling in hypothyroidism or other forms of thyroid disease is neither water nor fat - it is mucin.

https://en.wikipedia.org/wiki/Mucin
https://en.wikipedia.org/wiki/Mucin#Clinical_significance

Edit : Ignore what is says in the diagnosis section of that wiki page :

"Results of the total serum thyroxine and free thyroxine index tests usually will confirm the diagnosis."

That method of testing for thyroid disease is many years out of date. People need TSH, Free T4 and Free T3 tested. Getting thyroid antibodies tested can also be informative.

 

It's true that the start of my period makes my symptoms worse. But otherwise I have a lot of fluctuations in my symptoms that don't follow any kind of regular pattern at all. Extra swelling is also guaranteed in PEM for me. So it's the typical ME fluctuations of good days and bad days, no pattern apart from the period itself.

I don't think it's myxedema, it looks like a rare, often fatal disease with severe thyroid problem but also based on the other symptoms this doesn't sound like mine. Mine got better after the first few years (as all my symptoms). My thyroid was actually very thoroughly checked out: I do have very mild Hashimoto's (without it affecting anything yet, all my other thyroid values were alright except for the anti TPO). I had to take levothyroxine to exclude potential hypothyroidism as part of my ME/CFS diagnostic process. It even caused a little hyperthyroidism in me as a result but didn't make my symptoms better (they actually became worse but that worsening started earlier and was very likely unrelated).

Oh, I see that belly swelling in the photo is ascites: that does show up on ultrasound as far as I know and I think it is hard, while mine is soft. The endocrinologist at the university who evaluated my thyroid excluded it as a reason for the swelling.

 

Since the condition is progressive (it slowly destroys the thyroid) you should ask for your thyroid to be re-tested once a year or once every two years. Having just TSH tested is not enough to exclude thyroid disease - you would need to have Free T4 and Free T3 tested as well.

 

Thank you for warning me. This whole thing with the thyroid and the discovery of the Hashimoto's and its exclusion for my ME/CFS symptoms happened this year, so it is still very fresh. My thyroid will surely be checked out regularly, since I'm not sure I will be able to tell if/when my thyroid issues start to get more serious, due to the ME/CFS symptoms I already have.

 

As a non-medic, the only thing I can think of is that ME appears to affect our bodies' ability to process sodium and simple sugars. Some of us suffer low blood pressure and fluid levels, and have to increase our salt intake to compensate; many report that consuming sugar seems to make their overall symptoms worse. As both salt and sugar are both important in maintaining fluid balance in the body, is it possible that you're supremely sensitive to them, and as the ME symptoms ramp up, the ability to maintain a proper fluid balance goes out of the window?

I know it sounds implausible (so much so that I've held back from suggesting it because it makes me sound batty!), but this difficulty with salt and sugar is so odd that nothing would surprise me.