Odd recurring lip bruise/mark - Scleroderma & Ray...

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Odd recurring lip bruise/mark

Julesboz profile image
24 Replies

Hi all, not sure if this is related to raynauds but I thought it was worth asking. Firstly I have primary raynauds and no diagnosed autoimmune disorders. I suspect a sluggish thyroid, but bloods are all ‘normal’. I have mild chronic kidney disease and have to supplement iron, folic acid and B12 otherwise I become deficient and anaemic, but no cause has been found. I’m a 52 year old woman and I don’t take any medication. Over the last few weeks I’ve been getting this really weird dark red mark appear on my bottom lip. It always appears overnight, it’s always in the same place and it’s always gone within about 36 hours. It’s happening more and more frequently now. It doesn’t hurt, it’s not raised or rough. It just looks like a very dark bruise. Really odd! I have no idea what it’s connected to, but I have spontaneous bruising on my fingers which is unexplained but the doctors say may be related to the raynauds so I wondered if this was and if anyone else has come across something similar. Thanks in advance lovely people!

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Julesboz profile image
Julesboz
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24 Replies
Winfield1 profile image
Winfield1

I Julesboz

I have an odd blue (bruise?) on my lower lip but it came about 8 years ago and I still have it - it doesn’t come and go - but does get lighter and darker at times.

I have severe Raynauds and a mixed connective tissue disorder - I have no idea what mine or yours could be - interested to find out though x

Julesboz profile image
Julesboz in reply to Winfield1

Thanks for that, I’m glad I’m not the only one! I’m debating whether to get it checked out by the doctors as they didn’t come up with an answer about my finger bruises, although that was different.

honeybug profile image
honeybug

Hi Julesboz 😊🌸🌿🦋

I’m sorry you are plagued by this lip problem and bruising.

I have Raynauds Phenomenon. I have GI issues and multiple problems that affect my lips during flares. But not what you have.

Have you ever seen a dermatologist or gastrologist???

A biopsy can be taken of your lip lesion to send to pathology to identify it. The dermatologist can do testing and take your detailed history which you are very good at describing these symptoms.

Save this picture of your mouth lesion. Also take another picture of it as it starts to fade away so the doctor can see the visual changes himself.

In the meantime there is a world renowned clinic in the USA 🇺🇸 known for excellence in diagnostics and care that you can do some research yourself. Go to

mayoclinic.org

Best wishes for the answers you seek. Let us know how you’re doing dear.

Take care.

😊🌸🌿🦋🙏🤗💗😘

Julesboz profile image
Julesboz in reply to honeybug

Thank you for your response. I don’t live in the US, I’m in the UK, but I am contemplating seeing my doctor about it, just to see if she can shed any light on what it might be.

honeybug profile image
honeybug in reply to Julesboz

Yes see your doctor better safe than sorry not done sooner.

Xxx

linda-l profile image
linda-l

I have Primary Sjogren's, Scleroderma overlap, interstitual lung disease (at present under cntrol), thyroid eye disease, fibromyalgia and, like you, very severe Raynaud's (they are just the autoimmune conditions!)

I have red marks and spots just under the skin- although smaller than on your lip - in various places on my face and Eastman Dental Hospital, where I attend a Sjogren's Clinic, say these are all inside my mouth too. I have a large one on my lip which looks like I've bitten my lip.

Several doctors have told me they are telangiacstasia and several are related to the above autoimmune diseases.

Sadly, when you have autoimmune disease, all sorts of strange things start happening. Primary Sjogren's, in particular, "blesses" you with a various of other issues.

Your rheumatologist should recognise the problem immediately.

All part of "our" life's rich tapestry. I do try to not dwell on the problems, which is extremely hard, and try to count my blessings too .... which are numerous ;)

Hope you get answers

Linda

Julesboz profile image
Julesboz in reply to linda-l

Thanks for your reply Linda-l. I don’t have a rheumatologist as I’ve never been diagnosed with an autoimmune disease. My raynauds is primary and not considered autoimmune, I’ve only ever seen a GP about it. I have been tested for autoimmune diseases but nothing’s ever come up.

I tend to agree with Linda-I re the telangiacstasia , Reynauds and Scleraderma are often linked.

Julesboz profile image
Julesboz in reply to

Thanks for your reply, several people have now mentioned raynauds and scleroderma, I’ve never been diagnosed with scleroderma, perhaps I ought to ask my doctor about them then.

GGhere profile image
GGhere

Hello Julesboz. This looks very much like the telangiacstasia that appear on my face - they constantly come and go. I was told by the consultant that they are telangiacstasia when I was first diagnosed with Raynauds and Scleroderma i.e. systemic sclerosis. Sometimes they appear on my scalp too.

Julesboz profile image
Julesboz in reply to GGhere

Thanks for your reply, several people have now mentioned raynauds and scleroderma, I’ve never been diagnosed with scleroderma, perhaps I ought to ask my doctor about them then.

GGhere profile image
GGhere in reply to Julesboz

I think it may be worth you asking your doctor if you can maybe see a rheumatologist. I don't know if it's just coincidental, but I also have other symptoms the same as yours. Chronic Kidney disease (which is slowly getting worse and is now checked frequently) my body does not absorb iron and just a few weeks ago I had to have an iron infusion - 2 day visits to hospital for several hours on a drip. I also get the strange bruising on my hands which just appear and disappear at will. I've read that this strange disease is difficult to diagnose. My GP knew nothing about it and told me he'd never seen it before. That was after about 4 years of complaining of various symptoms and then he finally referred me to hospital. I had lots and lots of tests during one year and then I was referred to rheumatology - it was only then that they got to the bottom of things and now I'm on the right medication to help control things. I was told "we can't cure you but we can 'manage' it." For some years I felt that my GP considered me a hypochondriac. Hope you manage to find some help.

Julesboz profile image
Julesboz in reply to GGhere

Oh that’s really interesting thanks. Yes I’ve stopped going to do the doctors because I have lots of weird but mild things going on and I’m sure they think I’m a hypochondriac. CKD, iron, folic acid and b12 problems, weird bruises, arthritis in my fingers, degenerative disc disease in my spine, raynauds, fatigue, possible hormone issues and very dry eyes. I’m also intolerant to dairy, gluten, soya and alcohol and chemically sensitive. None of it is an issue for anyone I’ve seen because none of it is seen as serious and nothing seems connected.

in reply to Julesboz

The very dry eyes is a classic Scleraderma symptom. Here, I'm in France the diagnosis was quick and easy, on week, blood test showed up double positive ANA so appointment with a heart specialist, yes heart specialist and a quick test, fingers in a machine and he saw the enlarged blood vessels in my nail beds, indicative of Systemic scleraderma (sclerosis)

Julesboz profile image
Julesboz in reply to

Thanks reglois, I have decided to make an apt at the doctors and ask the question.

in reply to Julesboz

Forgot to say, x rays showed up the scleroderma in every joint of my hands, fatigue is also another symptom, I don't have any skin changes, maybe a little dry in the odd place, bar the sole of one foot and only one *pebble*, do have very itchy skin though, moves about.

Julesboz profile image
Julesboz in reply to

Oh yes I get terribly itchy skin! I think I’d better write all these symptoms down before going to the docs! I had an X-ray of my hands because they were painful and the radiologist commented on the odd lump on my index finger. My doctors just seemed to think it was osteoarthritis though. The pain varies, but my index finger, the one with the lump, is almost permanently bruised and slightly swollen now and the raynauds is worst in that one. Again I saw 2 doctors about the bruises in my fingers and they didn’t seem to think it was an issue.

Julesboz profile image
Julesboz in reply to GGhere

Hi Betsie, as a result of what you said I’ve been researching scleroderma a bit more. Is it possible to have it without the patches of very dry skin, which seems to be the main symptom. I have one heel that has cracked very badly and is painful, which I have to keep moisturised and my husband says my skin in general isn’t so soft as it used to be (I have to regularly use heavy moisturiser on my hands) but I’d put that down to ageing (I’m 52). Oh in my last message I forgot to say that another symptom is nosebleeds. Thanks!

GGhere profile image
GGhere

I don’t get the nosebleeds but I do have back trouble and after X-ray they told me it was wear and tear. I understand that scleroderma involves the body creating too much collagen hence the thickening of the skin. I’ve definitely got this and over the last few years my skin has darkened especially on my face and legs. It also causes the skin to feel tight and uncomfortable. I look tanned all the time and everyone keeps telling me how well I look which drives me mad when I’m feeling rubbish. I’ve given up on makeup because it makes my skin itch I get itchy sore eyes too (Sjögren’s syndrome) which some people get along with all the other symptoms. I couldn’t say if you have scleroderma or not but you need to ask the question of the relevant people. Perhaps it’s in the early stages. I was eventually diagnosed 4-5 years ago during which time I’ve read up on it and learned to accept the bad days and make hay while the sun shines on good days. Try not to feel too alarmed because when you read medical stuff they spell out the worst scenario. I’m 78 and still ticking along. My GP prescribes A cream called Dermol - It’s similar to E45 and is antibacterial but it does help if used frequently.

in reply to GGhere

My systemic scleraderma is mostly internal bar the sore eyes, hair loss and very dry mouth.

Julesboz profile image
Julesboz in reply to GGhere

Thanks very much Betsie, I will definitely make an appointment and ask the question.

CBblake profile image
CBblake

Hi there I see your post is 3 years old but wanted to find out if you ever got an answer to your mystery bruise? I have the same exact thing happening to me and is very puzzling.

Red bruise line on the edge of my lip
Julesboz profile image
Julesboz in reply to CBblake

Hi there, I’ve had no official explanation but I believe it happens when my folic acid levels are low. I supplement regularly now and haven’t had one for ages!

CBblake profile image
CBblake

Thank you for answering so quickly!

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