There was some discussion about puffy face as a symptom of ME/CFS: Is this something many people here experience? If so, do you experience it all the time, or only in a crash? I think I remember having puffy face a while ago, but it was temporary and might have been related to a medication or diet.
Only when in a crash, but not during every crash. Worse in the morning. I don’t think it correlates with having spent more time lying down in the preceding 24 hrs than usual, but will take more notice next time.
I should not have been so definitive; I'm surprised at myself for doing so. Very few things about ME/CFS should be said definitively and I've certainly over-stated things here. It is something I experience and I see it in my son. I can feel PEM come on as my eyelids get puffy. I've seen it in some pictures of people with PEM. A few members have also noted problems with puffiness/swelling as part of PEM, and there was talk about fluid homeostasis problems i.e. a build up of fluid prior to PEM that then is expelled in multiple trips to the toilet during PEM. There was some discussion of fluid homeostasis issues and polydipsia here and here and this related thread: Explanation for excessive generalized edema?
No, I don't get puffiness in the face. I do however experience a strange swelling of the hands and feet, and knees if my legs are locked straight. This feels like blood is pouring into the affected area and is not able to flow back out, like I can feel a pressure building internally and usually like I can feel my pulse in the area of swelling. It is usually on one side, not both, and the affected area is visibly swollen, red, and hot to the touch. This usually happens at night when it does occur and feels like the more advanced stage of whatever it is that causes my muscles to shake or repeatedly contract and relax.
One of my many symptoms that I have experienced with ME is swelling around the eye and eyebrow area. Sinus problems has been a part of my ME, and it may not be the run of the mill kind of sinus problems but extra ME input weird stuff. I notice the puffiness from time to time. I have had the 120 year old look in face at my very severe ME onset. There is another ME look but I don't know how to describe it yet.
Sorry for the long reply in advance! Bolded the most relevant part of my answer. I do get a lot of swelling. This was actually one of my first symptoms and it started so rapidly (one evening my stomach area just started to quickly swell) that I ran to the emergency because it was so weird. I was sent to the internal medicine ward of the hospital for examination and some blood tests. Everything came back normal and I was informed that I must have some gynaecological problem or must be pregnant. (And when I told them it is 100% sure I am not pregnant, they told me: oh, you just don't know yet. Great start.) It is most noticeable in my stomach area but it is also everywhere, on my legs, on my face, etc. It is of course most noticeable on my face in the morning, after waking up from a lying position and it gets worse in my legs later in the day due to gravity. It is definitely some kind of fluid. It also gets significantly and visibly worse in a crash. Visibly worse by looking at my body/face but also visibly worse on the scale, I also always weigh more in a crash. It is always present on me, not just in a crash, but it has showed a lot of fluctuation during my illness. When I was at my worst, my face and especially my eye area can look visibly abnormal due to the swelling, to the point that I wore sunglasses whenever I went outside to hide it. During my EBV infection, my eye area was also extremely swollen due to edema, to the point that it interfered with my vision for a short time. This is a normal EBV symptom for some people, possibly due to the effed up lymph nodes (although the cause is not quite sure from what I understand). Anyway, I have no idea if my edema is connected to this EBV symptom or not (have my lymph nodes been effed up permanently or is it something else). When I was 90% recovered once, the extreme water retention was also almost gone. We are talking about several kg of water on a very tiny woman, not 2-3 kg. I need to keep different sizes and cuts of clothes so that I am prepared for every major change. Another thing is that I have subclinical hypothyroidism due to Hashimoto's thyroiditis (I sometimes qualify for subclinical hypothyroidism - slightly elevated TSH but all the other thyroid values are great - but sometimes I don't and then I'm in the normal range for everything). This was only discovered during the investigations of my post-viral symptoms. For those who are not familiar with this: a lot of people with these values don't even have any symptoms. I'm on medication for it and it does nothing. The interesting thing is that people with hypothyroidism have a tendency to get water retention and while I was investigated by multiple internal med doctors, no one said it was due to that. Much later after the hospital examination I mentioned above, I was also sent to the internal med doctor of my district for examination and she wrote it on my paper that I don't have any edema (she already knew about Hashimoto's). Then I was also sent to Semmelweis University, to an endocrinologist/university lecturer there. He gave me the most thorough examination and he also sent me to do all kinds of endocrinological blood tests. Nothing came up, I have great results. I was very interested in the edema/water retention as it is pretty bad in my case. He said it was not water, even though I showed him photos of the fluctuations etc. He said it must be fat or gas. It clearly isn't though! But I thought it was weird because it would have been so easy to explain the water retention with hypothyroidism and not one doctor did that, they were all quite adamant that it is not water, whatever it is and it is not an issue. This tells me that whatever it is, it is not the typical water retention expected in hypothyrodism and it is not a textbook case of water retention/edema. It must be some idiopathic something. Medicine didn't have an answer for this for me. It surely isn't gas or fat or pregnancy.
Never had a puffy face. People who know me well can tell when I'm approaching a crash; I'm not sure which features or expressions imply this.
I just asked my carer because she can always tell when I'm in a crash. She says she can tell as soon as she walks in as my eyelids and around the eyes become puffy.
I know the 'look'. It's interesting how quickly it occurs just from talking too much. I look older when I'm upright for too long and in PEM. I look very young after I load up on high sodium foods, the next day my face is full moon and pink.
I don't think I get puffy. I rarely look in a mirror, and if I do it's to look for something specific (pimple, scratch, etc) so I might not notice puffiness. I don't notice swelling elsewhere either. If I'm having a really bad day, I probably don't feel like looking in a mirror, and don't go where other people are. Maybe a squirrel might notice if I get puffy, but I don't understand squirrelish, so no useful feedback there.
