Have lupus fibromyalgia and emphysema . For past ... - LUPUS UK

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Have lupus fibromyalgia and emphysema . For past three months have had very swollen neck making breathing much worse has anyone else hadthis

dawnbeaven profile image
11 Replies

It's not thyroid dawn thanks guys

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dawnbeaven
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11 Replies
MaryF profile image
MaryF

Is it not thyroid down to your TSH test results with GP, as unfortunately those tests are not fit for purpose. MaryF

Gailj profile image
Gailj

Hi, I feel for you, I also have Lupus, Sjogrens and Fibro, I had a very swollen right side of neck over Christmas, apparently this is to do with the glands being blocked.

It did ease after a few days but it has returned a couple of times, at least I know it's nothing sinister

dawnbeaven profile image
dawnbeaven in reply toGailj

Mines bin like this for four months makes my breathing worse already bad with nebuliser . Will ask about blocked glands . Thanx

jellynpain profile image
jellynpain

Hi,

When you say swollen neck, which part, above clavical, neck length, under chin etc?

I am interested to know if it's like mine (due for Lupus Specialist visit & got other diagnosis).

X

dawnbeaven profile image
dawnbeaven in reply tojellynpain

The whole neck looks like have rubber ring under chin giving me huge double chin. Bin tested for thyroid not that . Any ideas gratefully received dawn x

jellynpain profile image
jellynpain

My swelling is soft, above clavicle (on/off) and under chin..ear to ear with discomfort. Swollen lymph nodes involved under chin.

Do you any issues with glands under the tongue? They can become blocked. Mine get red inflamed and uncomfortable but plenty of salivary so not blocked.

Has your Rheumy seen your swelling ? He/she be my first port of call if pos.

Sorry I can't be more helpful, hope someone else can be.

Xx

dawnbeaven profile image
dawnbeaven in reply tojellynpain

Hav been to everyone excpt rheumo going in March lupus clinic too far to travel at guys in London going to local one . Have lumps all over tongue hav biopsy on tongue in a week thanx dawn x

KarenC profile image
KarenC

Are you on any steroids, I have this and a hump on the back of my neck. I have been told they are due to the steroids and should go when I manage to reduce steroids, if ever, really struggling to reduce them, bad headaches and can hardly move hands. Hope this helps take care everyone.xx

dawnbeaven profile image
dawnbeaven

Was on roids for months it came up long time after starting on roids thanx x

jellynpain profile image
jellynpain

I get lumps on my tongue but not only any steroids. Lumps were one of the first things when I started getting poorly.

Let us know how it goes. Take care xx

Ask for a ca3/ca4 blood test that can tell if you have a autoimmune disease also ask for a t3 and t4 blood test on thyroid a a1c and a Tsh can be wrong

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