Tissue swelling?

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So I've recently posted this on another similar forum but I would like to copy it here too, because I just saw @Rufous McKinney mention having tissue swelling! Finally someone else too. :) In the other forum, someone suggested lipedema but I'm not really convinced it's that (or that it's angioedema). I'm just happy to see I'm not the only one with swelling issues. Anyway, here is what I posted elsewhere about this:​
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 liters 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.
:)
 

Zebra

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Hi, @wyva!

I don't have personal experience with this symptom, but I do have 2 close family members with tissue swelling, related to heart and kidney function.

Have any of your doctors checked your kidney function? This is cheap and easy to do via simple blood & urine tests.

Have any of your doctors checked your cardiac function? Usually starts with simple in-office EKG and heart enzyme blood tests. Then might progress to echocardiogram and blood test for BNP level.

Forgive me if you've already had this all checked out! You described your symptoms above, but you did not mention what, if any, testing your doctors may have done thus far.

Edema of unknown etiology, especially in the quantities you describe, always warrants a closer look at kidney and cardiac function.

Hope you'll keep us posted!
 
Messages
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Location
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Hi, @wyva!

I don't have personal experience with this symptom, but I do have 2 close family members with tissue swelling, related to heart and kidney function.

Have any of your doctors checked your kidney function? This is cheap and easy to do via simple blood & urine tests.

Have any of your doctors checked your cardiac function? Usually starts with simple in-office EKG and heart enzyme blood tests. Then might progress to echocardiogram and blood test for BNP level.

Forgive me if you've already had this all checked out! You described your symptoms above, but you did not mention what, if any, testing your doctors may have done thus far.

Edema of unknown etiology, especially in the quantities you describe, always warrants a closer look at kidney and cardiac function.

Hope you'll keep us posted!
Yes, you are right, I should have mentioned it. :) I have had several different tests, including cardiac function etc, and I'm more than healthy. I seem to have quite mild Hashimoto's thyroiditis that was discovered during these tests. My endocrinologist put me on levothyroxine to see if it works but even he doesn't really seem to believe that that causes my issues.
 

Zebra

Senior Member
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Hi, @wyva

You are kind to let me know.

Of course, I am happy to hear that you have good kidney & cardiac function, but sad that you have no explanation for this remarkable edema.

It's so frustrating, to me, when "health care providers" fail to dig deep into a medically objective finding like this!

I look forward to seeing response from others on this forum.

My best wishes!
 
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I have heard of something similar to this twice in me/cfs @wyva and it was never explained by a medical doctor what it was. But a Chinese doctor who treated one of them called it "Damp". Ok I know that description might not help you understand what is wrong but the Doc said it was caused by problems with digestion so that was what the treatment (accupuncture and herbs) was intended to fix. The explaination was that because digestion was not working properly "Damp" was being deposited underneath the skin. It was'nt fat or water. It was something else. "Damp". The treatment did work and their skin returned to normal. Their me/cfs symptoms also got a lot better. I hope I have explained this properly.
 

rel8ted

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So I've recently posted this on another similar forum but I would like to copy it here too, because I just saw @Rufous McKinney mention having tissue swelling! Finally someone else too. :) In the other forum, someone suggested lipedema but I'm not really convinced it's that (or that it's angioedema). I'm just happy to see I'm not the only one with swelling issues. Anyway, here is what I posted elsewhere about this:​
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 liters 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.
:)
Happens when my Dysautonomia acts up. May no BE that, but always at the same time.
 

Pyrrhus

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Sorry to hear that you're dealing with this strange symptom.

I don't know what it might be, but in case it helps, I personally get two types of edema:

1) When I get intestinal inflammation, my belly retains a lot of water around the intestines.
2) When my legs are not elevated, I get edema in my lower legs due to blood pooling from orthostatic intolerance.
 

Gingergrrl

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So has anyone seen anything like this or has an explanation? Thank you.
:)
Do you have MCAS or allergic reactions? Sometimes this can happen from an allergic reaction and it's called "abdominal third spacing". The fluid becomes trapped and sometimes, the fluid is in a place in the body where it is difficult or impossible for it to move back into the cells or blood vessels without medical intervention. My MCAS specialist (who is now retired) said that an abdominal ultrasound would have to be done while it was happening in order to catch it. Luckily he also said that abdominal third spacing is usually not dangerous like pulmonary edema. I don't know if any of this pertains to your situation but wanted to mention it just in case.