MDJunction - People Helping People
Ask a Question
04/19/2010 07:17 AM

Can Raynaud's cause your nose to swell?

Posts: 2
New Member

I'm new here and I really don't know too much about this disease and what symptoms it causes.

I've always had cold hands and feet, but in the last few months my nose has started getting achy and turning really cold. But what bothers me is it starts to swell! It started on one spot on the tip of my nose and has spread to the other side now. I can live with it for now but really don't want it to get worse. Also, I was playing basketball with my family on a 60 degree day and my feet got really bad. They were bright red and my toes were bright white and it looked bad, and they hurt terrible and I couldn't walk on them for a little bit.

My fingers are also constantly swollen now although they get worse if I'm active. I really don't know if this is from raynaud's or if something else is going on. I have also lost a ton of hair, but I'm pretty sure I don't have any autoimmune disease because my ANA is normal and I had a pretty good workup just a couple months ago. A neuro thought I could possibly have MS because of some vision loss in one of my eyes, but an MRI was normal so it doesn't seem to be that either(at least not at this time).

I would just like to know if Raynaud's can cause your nose to swell, and if so, how do you treat it? Thanks for your help.


04/19/2010 02:04 PM
Posts: 3432
Senior Member

Hi Lottaponies, my nose has never swelled but that and lips go white to purple to red along with hands and feet. As bad as my hands and feet have swelled, I wouldn't see why someone's nose with Raynauds couldn't swell. Don't want to freak you out but you can have a normal ANA for years and still exhibit early autoimmune symptons. I started losing hair 5 years before ANA went pos for RA and MCTD. Other symptons over 10 years were achy joints and muscles, alot of arm and leg numbing, migraines, mouth and nose sores, sore skin, muscle twitches, face rash and the list goes on. I sometimes wondered if I was going crazy cuz docs could never find anything. I always knew something was wrong and then everything went 10 fold 2 years ago and hit all at once along with the Raynauds. That is when my blood changed and the DX's were finally made. It is not uncommon for blood to be normal at first.

On a brighter note, if hair loss is your only other sympton, have you had all your vitamin levels checked? Lack of vits can cause some crazy stuff.

I do use Cardizem for the Raynauds and it helps alot. Doesn't stop it but it was way better this past winter then the one before.

Good luck and ask anything, vent all you want (it's not an easy thing to deal with when it's flaring bad). Welcome to the group.

Hugs, Donna

04/20/2010 04:29 AM
Posts: 2
New Member

Hi Donna, thank you for replying. I do have other symptoms, mainly fatigue and I've started having migraine-like headaches over one eye and my vision has become a little blurry out of it. My hands are constantly swollen so I suppose that's related to the nose thing as well. I started taking vitamins for the hair loss a few months ago so hopefully I'll start to see a difference soon.

I appreciate your support and advice. I will probably go see my doctor this week and see if there is anything she can give me to help with the swelling. Because stress seems to make my nose worse it seems like it could be related to the Raynaud's.

04/21/2010 12:24 PM
Posts: 417

I have Raynaud's also, plus neuropathy, and this past month it was discovered that I have developed a restrictive cardiomyopathy with 36% loss of heart function. All I knew was that I was huffing and puffing more than I used to with mild exertion. Turns out that amyloidosis can cause the Raynaud's, neuropathy, and restrictive cardiomyopathy all three. So can scleroderma. Fabry's disease is a possibility also. The doctors are now finally scrambling to determine which of these it is. I also have the hair loss on my limbs and permanently swollen fingers, just as you describe.

Amyloid can cause deposits in the skin that look like swelling. Scleroderma can also cause skin swellings that progress to fibrosis.

Unfortunately this is a sticky wicket diagnostically for:

1. I have sky high anticentromere B antibodies, which go along with scleroderma.

2. I have monoclonal gammopathy, which can cause primary amyloidosis

3. I have a familial complex of things same as my father and his mother, of ringing in the ears with mild progressive hearing loss, neuropathy, and heart problems or strokes, either of which could point to Fabry's, or familial transthyretin amyloidosis.

4. My father had ankylosing spondylitis causing spontaneous vertebral fusions in his lumbar spine. This is inheritable. My x-rays show my cervical vertebrae are starting to fuse, and a PET scan revealed that my spine is inflamed which is what happens before the vertebrae stick together and fuse in ankylosing spondylitis. Amyloidosis can also be secondary to ankylosing spondylitis.

5. Found out last week that my father's first cousin on his maternal side had polymyositis. Also read that there have been cases where patients diagnosed with either polymyositis or sine scleroderma (scleroderma without skin hardening) later turned out upon autopsy to have amyloidosis instead.

6. I also have a "hypermetabolic liver" according to the same PET scan, and a liver specialist told me years ago it could be amyloidosis. But scleroderma can also affect the liver.

So my cardiologist has referred me to the Johns Hopkins Genetic Center for genetic testing for Fabry's and familial transthyretin amyloidosis. I will probably also end up getting a heart biopsy, but am starting with the less invasive stuff first, even though it's more expensive. Wow those genetic tests are expensive! But I am not relishing the idea of a heart biopsy.


Share this discussion with your friends:

Disclaimer: The information provided in MDJunction is not a replacement for medical diagnosis, treatment, or professional medical advice.
In case of EMERGENCY call 911 or 1.800.273.TALK (8255) to the National Suicide Prevention Lifeline. Read more.
Contact Us | About Us
Copyright (c) 2006-2014 All Rights Reserved