• 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.

Nose bleeds?

justy

Donate Advocate Demonstrate
Messages
5,524
Location
U.K
I have been having regular nose bleeds ever simce my latest relapse 2 years ago. They stopped for a couple of monyths at one point, but have just started up again. This morning the blood was literally pouring out of my nose - a bit scary. Took ages to stop!

Does this have anything to do with C.F.S/M.E? or anyone else get this? I cant think how it could be related, but it is a bit strange. I cant blow my nose at all, as it instantly sets off another one, although they also happen spontaneously as well.
Hmm.
 

Sasha

Fine, thank you
Messages
17,863
Location
UK
Sorry to hear about your nose bleeds, Justy! I haven't heard anything about this being connected with ME/CFS.

However, a few years ago (towards the end of a period of remission) I had a nosebleed and I think it was brought on by repeatedly using Vics "First Defense" nasal spray. I was so anxious to avoid getting colds that I used it to its maximum recommended frequency whenever I was out in public. After that first nosebleed, I found that using the spray set one off so I've avoided it ever since and have had no more nosebleeds with blood pouring out of my nose. However, I think my nose has been permanently damaged - when I blow my nose now, even though it's several years later, there's sometimes a little blood from the same nostril (sorry if that's too much information!).

So I wonder if there's anything that you might be taking, perhaps to try to help with your ME/CFS, that could be the genuine culprit. That could explain the timing.
 

Carrigon

Senior Member
Messages
808
Location
PA, USA
I've had nosebleeds off and on since getting sick. For me, they are usually mild and always happen if I'm under massive stress. But I definitely get it since I got sick. And the doctors have always ignored it no matter how many times I've told them I had it all these years. I've even gotten it and not realized it was happening till I tried to blow my stuffed up nose, only to realize it was stuffed up with blood.
 

justy

Donate Advocate Demonstrate
Messages
5,524
Location
U.K
Thanks Sasha and Carrigon. No i dont use any sprays etc or any meds except herbal medicine (not up my nose though)
Doctors eh! it doesnt matter how many time i have told them that i am getting frequent nose bleeds and bruising and everything else of course - they just dont want to hear it. Once you have a cfs diagnosis they just switch off(or if they are like my doctor and think you are depressed)
 
Messages
7
Location
UK. London
My daughter, who has POTS often pours with blood from her nose, it's happens quite often while she's asleep, she rushes to the loo in the middle of the night. I've not mentioned it to her doctor though, as I've not thought it to be relevant...although, you just don't realise sometimes what is, as like you say, the docs don't show much interest anyway. So who knows?
 

*GG*

senior member
Messages
6,389
Location
Concord, NH
I have been having regular nose bleeds ever simce my latest relapse 2 years ago. They stopped for a couple of monyths at one point, but have just started up again. This morning the blood was literally pouring out of my nose - a bit scary. Took ages to stop!

Does this have anything to do with C.F.S/M.E? or anyone else get this? I cant think how it could be related, but it is a bit strange. I cant blow my nose at all, as it instantly sets off another one, although they also happen spontaneously as well.
Hmm.

Are you blowing your nose a lot? If so, is it because of crud in your nose? If so, I think it is due to some growth in your nose, cannot recall what it is called, but my Dr did a nasal swab for me a few years ago, and then prescribed some Anti-biotic, and not nearly as bad as in the past!

GG

PS I used to have a bloody nose a lot also!
 

ukxmrv

Senior Member
Messages
4,413
Location
London
Justy, my husband gets nose bleeds a lot. He has blood clotting problems in his family. Every year he goes to see his GP who cauterises the blood vessels in his nose. Very quick proceeedure and works very well for him.
 

justy

Donate Advocate Demonstrate
Messages
5,524
Location
U.K
Thanks for all the replies and suggestions. I am going to try once more with the doctor!