Relapsing Polychondritis - somebody knock some sense into me please [Archive]

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KatiePink

28-04-16, 17:30

Ok so i have been getting this excruciating ear pain at night for a while now, all of the cartilage in my ear kills to touch and my ears go bright red, it's only at night, as well as that one side of my nose was inflamed like the cartilage part on the inside, it's gone down now but i am convinced i have this rare disease.

Doctor doesn't have a clue about ear problems. The pain is very serve not just a little ache. I also have knee joint pain on and off that started a few months back, when googling this ear problem it led me to polychondritis and there i saw that it affects the nose after the ears and different parts of the body, including respiratory tract ect and can be fatal.

Anyone know anything about this that could put my mind at ease, i know it's rare, but i always think i am that unlucky one. :weep:

countrygirl

28-04-16, 21:16

Well I have had a google and its so rare it affects 0.71 per million of the population. I can though understand why you have picked up on this disease because of your ear symptoms but your symptoms are more likely to be from something else.

Have you told your Dr of your worry about this disease, no family GP will have a clue about it as it is so rare but a consultant rheumatologist might be the person to see. Maybe print out the info you have come accross and take this to your Dr and ask. There does not seem to be a test for it but there are certain criteria you have to have.

Remember the chances of you having this disease are miniscule but for reassurance you need to discuss this with your GP.

KLM

28-04-16, 21:24

Oh love. Poor you. Google is such a dreadful thing. I'm sure your ear pain is much more likely to be from an ear infection or head cold or something. It is v unlikely that a pain from a serious condition would only be present at night. More likely because you are lying down and ear fluids moving and you have nothing else to think about and so you obsess more.
Go see your doc tomorrow. Print off the info you have found and ask them to test you for it. When they tell you you are OK, which I'm sure they will, STOP GOOGLING!
I suffer with health anxiety, but I stay away from anything medical, even people talking about things at work - I have enough to worry about, don't need anything else in my brain!!
I am sure you are fine, try to get some sleep xx

KatiePink

28-04-16, 21:31

Thank you both :hugs:

I knew it was rare but didn't realize it was that rare, the ear flare ups have been happening on and off for a few months now, i have saw two GP's who took a look inside and couldn't see anything they just kind of said they don't know.
But i will go in and show them what i've saw and just tell them it's worrying me because it sounds exactly like what i am experiencing except mine is solely at night.

KLM

28-04-16, 22:06

Good idea. Go for it. Ask to be referred to a ENT - ear nose throat - specialist if they can't test you for exactly that condition. I know there are so many things that can happen in your ear that are really painful but NOT life threatening. Good luck. Hope you get some answers and get it sorted really quickly X

girl20

22-04-18, 23:13

KatiePink

01-05-18, 10:27

Dear KatiePink, I came across your message because I have been experiencing the same excruciating pain for a couple of years now. Unfortunately for me, I decided to google my symptoms and also read about Relapsing Polychondritis and I started to panic!! It is so scary. Were you able to find a diagnosis for your problem? I have family history of fibromyalgia and other autoimmune diseases as well...

Hi! I'd really love to say I have, but unfortunately I'm still suffering with this and have had no answers from doctors who seem to think I'm making it up! You know how bad the pain can be it's terrible, something is definitely going on but it's been years now so hopefully nothing that serious! I am going to ask to be referred to an ENT soon though over other issues, constant pulsing heart beat sound heard, so hopefully they can address this aswell. X

girl20

10-06-18, 16:08

Thank you KatiePink for your response and I apologize for not replying sooner. I haven't had a good couple of months. I have still had the same pain every now and then. I went to a couple more doctors recently and they haven't been able to find an explanation for it yet.
i hope as you said, that since this has been going on for so long, it shouldn't be something serious. Otherwise, we'd know by now.
Thank you again.X!