Log in
LUPUS UK
22,380 members17,768 posts

Swellings??

Swellings??

Does anyone get swelling below collarbone and at top of sternum with lupus? My right tonsil hurts when I swallow but doesn't look inflamed or red. I have had erythmelalgia again today in right hand and wrist and then a few hours later left side and front of nose went bright red. I've also had a tender patch on my left thigh, front all day, and fourth finger, little finger and joints in that part of hand have been hurting. I've also got my sore back in nostril, left side this time. My rudolph red nose earlier! I'mgoing GP tomorrow and ask for an ANA test.

5 Replies
oldestnewest

I have had many of your symptoms doing the rounds for years from tonsil pain to red neck to random pain in various parts of me to red nose and recurrent nasal sore (for me these go together).

I was diagnosed with autoimmune Hypothyroidism 15 years ago, then misdiagnosed with RA - and in 2016 I was diagnosed by positive ANA and lip biopsy with Sjögren’s. I have had narcolepsy in the past too but mainly drug related. These days it’s just fatigue rather than narcolepsy - a classic part of Sjögren’s. I also have lots of other neurological symptoms and my version of Sjögren’s is quite similar to MS. Hope this helps and that your GP takes a full panel of autoantibodies for you.

2 likes
Reply

Hi mum,

Before I was diagnosed with UCTD, I had random episodes of a bright red nose and puffiness around the collarbone. I also ran a low for no known reason. A positive ANA confirmed something autoimmune a few years later. I hope you get some answers. Sometimes it can take awhile.

1 like
Reply

Well I showed GP all photo evidence and description of symptoms. Apparently it's all mental health and viruses. According to him autoimmune disorders are very rare and highly unlikely. This GP is the same one who wouldn't refer me 8 years ago to sleep specialist for narcolepsy with cataplexy as he didn't think I had it. Turns out that I was right I have narcolepsy with cataplexy which is, wait for it, an autoimmune disorder. It'sonly because of professor zeman my consultant that the GP took my bloods yesterday. Bit bloody annoyed.

Reply

Oh mum! I think it is time to change your GP. This one just doesn't listen to you and wants to ignore everything you show and tell. Kick him to the curb. If that is how he treats all his patients, he should not be practicing. I hope you get some answers. Contrary to the GP's opinion, it seems like AI conditions are clearly on the rise!

1 like
Reply

AI disease is not so rare . Factor in all those who are not diagnosed or are incorrect of diagnosis such as often told fibromyalgia. Have a look at Psoriatic arthritis also. It does not have a blood test to diagnosis plus it can present very much like Lupus. Psa loves toes, fingers, feet, ankles etc. Do you have any skin rashes ? Again there are many types of skin psorasis. Do you have a family history of AI issues. 50 of people with PSa have a negative crp and esr making diagnosis even more tricky. hope this helps , Lou xx

Reply

You may also like...