• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

Whole Body Swelling

V

Valentijn

Senior Member
Messages
15,786
I've had swelling intermittently, but in the past it was always from eating wheat or egg whites and would go away after a couple days. But now it's been pretty much constant for the past month, even when not eating wheat or eggs. Usually it's been most noticeable in my arms and back, but for the past few days it's also been in my legs, face, etc. No other new/weird symptoms with it.

I'm assuming (hoping) it's just a new allergy, and as of 18 hours ago I'm trying an elimination diet of lamb, rice, and pears to see if it disappears after a few days. But I'm also worried that it might be something more serious. Any suggestions? I'm currently on a smallish island far from the country where I'm properly insured (though my insurance will cover urgent issues), so would rather not have to bother with going to a doctor unless it might be serious.
 
V

Valentijn

Senior Member
Messages
15,786
My swelling has been pretty slow in developing, though getting worse over the past few days. Also no "pitting" when poked, though my skin stays red/creased for a long time after getting BP taken and a rubber band wrapped around an arm for blood samples. I'm also on no meds - just multivitamins, B12, and NAC, and recently fish oil and magnesium.

I found a clinic open for a few hours today and went in. The doctor seemed pretty concerned about it, and ordered labs for EBV, auto-immune stuff, regular blood stuff, and regular urine stuff. He also ordered a sedimentation rate lab and I should get the results of that in half an hour.

He kept calling ME/CFS "chronic fatigue", but otherwise it was a very good visit. I think having an obvious physical abnormality helps :p
 
Nielk

Nielk

Senior Member
Messages
6,970
Valentijn,

I have had this now for the past 2 months. I went to a few doctors including a Rheumatologist and Cardiologist and they could not find anything. I am really perplexed as to what is causing this.

Hopefully, yours will not last too long.

Wishing you the best with it,
Nielk
 
V

Valentijn

Senior Member
Messages
15,786
The doctor just called with the results - from his home at 7:30pm!

Sedimentation rate was a bit elevated at 25 (normal range 1-20). That's up from 21 when I first got diagnosed, but he said at that level it's really not a cause for concern.

Everything else was normal/negative: EBV, blood counts, electrolytes, glucose, etc. He suggested I get more thorough investigation from an internist, to go back to the clinic if it gets worse, and to take ibuprofen or aleve (naproxen) if needed for pain.
 
T

taniaaust1

Senior Member
Messages
13,054
Location
Sth Australia
I hope you do follow up with an internist... it probably isnt good to put more unusual symptoms down to most probably being ME/CFS.

Thou that food elemination diet thing you mentioned I think is really worth doing
 
You must log in or register to reply here.