Could I have been misdiagnosed with Rosacea?

[laurastacey]

I have had a number of general complaints over the last couple of years that have always resulted in me being tested for stuff by my doctor and the results coming back normal.

These things being, 2 swollen glands in my neck that have never gone down no matter what. Feeling tired and run-down no matter how much sleep i get and how well i eat. Periods of icky stomachaches and bouts of diarrhea. A lot of cramping in my legs which gets particularly painful and annoying at night, and over my arms and legs i have a lot of spotty rashing going on, along with red blotchy very sensitive skin on my face for as long as i can remember.

Now, because of my frequent flushing/blushing and the typical redness on my nose, forehead, chin and cheeks, my doctor has said i most likely have rosaea, but looking into symptoms of Lupus, i notice that i seem to have quite a few.

Please bear with me, this may be long.

Ontop of my constant swollen glands...

I always seem to have cold fingers and toes, my boyfriend is always commenting on how cold they are even in a warm room where he's boiling hot. I often get weird tingly sensations in my wrist and hands. And when out in the cold my hands turn a weird purpley/red patchy colour (you know what i mean). My bottom lip also turns blue quite frequently.

For as long as i can remember now i have sufferent from what doctors have labelled 'anxiety' and i have shortness of breath daily. This gets very frustrating and i often experience this along with pains when i take deep breaths.

I suffer with recurrent mouth sores (also listed as a symptom) and almost always have a headache, but this could be down to the fact i have poor eyesight.

Now. i don't mean to sound like a hypochondriac, or second-guess my GP. But do you think it's possible that i could have some mild form of Lupus? Is it worth asking to be tested? I just don't want to seem like i'm panicking for no reason or waste my doctor's time.

[FionaGFG]

Hi Laura I just saw your post I manage another community Gluten Free Guerrillas for people with Coeliac Disease. Your symptoms sound like classic coeliac: mouth ulcers, headaches, breathing problems (due to low iron due to the stomach being damaged by the immune system), pins and needles and odd sensations (gluten ataxia and low B12), cramping in legs at night due to low calcium and magnesium deficiency due to Coeliac Disease (which causes malabsorption).

What has your Dr tested you for? Have they excluded, thyroid problems, pernicious anaemia, Coeliac Disease (ttg blood test)?

Learn more here: coeliac.org.uk/coeliac-dise...

[laurastacey]

Hi Fiona

Really? I have looked into Coeliac Disease before but have never got around to talking to my doctor about it because i was afraid i'd sound paranoid.

I've been tested for anaemia and my thyroid has been checked, well over a year ago now and everything came back normal, so i'm not sure how much can change in that time.

My biggest sign that i have stomach issues is frequent stomach upsets mostly after consuming milk, which lead me to believe i was simply lactose intolerant. So i dismissed everything else. I don't know what's wrong with me anymore.

I don't even know if lymph nodes can stay swollen for very long periods of time with nothing wrong. I was given anti-biotics for the rather large one in my neck and when it failed to go down i was told it didn't seem cancerous so no further action was taken.

thank you for the link, i'll look at it now!

[FionaGFG]

Don't worry we all appear paranoid at the Drs as we press to get diagnosed. Swollen stomachs after milk could indicate Coeliac as the stomach villi are damaged due to the immune system fighting gluten. The ends of the villi normally process lactose. With damaged villi it can't be processed properly. This was one of the symptoms that led me to the Dr as I felt dizzy and nauseous all the time. Coeliac Disease is an auto-immune disease and Rosacea has been associated with it (70% of the immune system is managed by the stomach with stomach problems and inflammation the skin can be affected). See here: livestrong.com/article/4598...

There is also a skin related condition call DH that is linked with Coeliac Disease: patient.co.uk/doctor/Dermat...

Although a lot of people (inc myself) with Coeliac just have another condition on their arms and legs due to the malabsorption from Coeliac Disease that is called: Keratosis Pilaris

patient.co.uk/doctor/Kerato... I saw a good dermy Dr and they prescribed some slimly cream you coat your arms with at night which works well. As does taking evening primrose oil and upping your omega 6 oils i.e. from eating oily fish.

A good Dr can easily spot these problems. I couldn't resist replying to you as you sound like myself and it took me 10 yrs to get things diagnosed. I was told that my fatigue was a repeat of Glandular fever that I'd had in my late teens. Utter tosh it was Coeliac Disease a common symptom is anaemia and extreme tiredness.

Hope this helps.

Fiona

PS also see:

puristat.com/bloating/sibo.... This is also common in Coeliacs. In short stomach bacteria imbalances can cause inflammation which = rosacea. Drs can prescribe strong anti-biotics that can help reset the bacteria and improve the skin. I've muddled on with mine instead and use factor 50 as the sun can make it worse (as does cold and wind so no good for us in this Spring like weather!).

[laurastacey in reply to FionaGFG]

I have always had a sensitive stomach and throughout my growing up (i'm 21 now) i've always had periods where i just feel unwell and i've never had an answer. Aneamia, thyroid problems and diabetes have already been ruled out and i've been meaning to attempt a gluten free diet to see if it would help but i've heard it's not wise unless your doctor has said to, and with all the stress of being told i've probably got rosacea i just haven't been able to think straight. I just know i've felt generally unwell for a long time but tests say i'm healthy. It's so frustrating.

Do you think my shortness of breath and swollen glands (that have been there since 2011) could be enough to convince my doctor i need to be tested for Coeliac Disease?

Thank you for your advice by the way!

[laurastacey in reply to FionaGFG]

I forgot to mention almost constantly feeling like i'm coming down with a cold. Not even sure what this could be but it's one of my general complaints :/

[Purpletop in reply to FionaGFG]

Fiona, I haven't been tested for coeliac disease, I don't have the majority of the symptoms described but I do seem to have keratosis pilaris. This only came on few months ago, it started with the top of my legs and top of my arms but now I find it is on the sides of my trunk too, it is scary. Would a dermatologist be able to diagnose it do you think?

[FionaGFG in reply to Purpletop]

Yes a dermy could diagnose but you should also ask yr Dr to run tests for iron, folate, TSH, Coeliac (TTG), IgA, IgG, B12 and VIT D as all of these can be signs of problems or inflammation in the body.

[Shann07]

Hi, alot of the symptoms on your post sounds like mine pre lupus diagnosis. I was constantly running to GP with feeling unwell, tiredness, hair loss, rashes, bouts of diarrhoea and cramps. I too had constantly swollen glands and at times my neck would be sore too, then pain to breathe in and shortness of breath. I suffered like this for 7 years and all my blood work was always normal apart from being anaemic at times. Like you i came across lupus on google and was convinced i had it, but thought GP would just laugh at me! When i was eventually diagnosed after my health taking a turn for the worst (lupus attacking organs) i was admitted to 3 different hospitals where hundreds of tests were done and lupus was diagnosed plus APS and MCTD. I said to Rheummy i suspected lupus and he said i should have went with my gut feeling and asked to be tested. I would say yes definately ask for test because GPs know very little about this disease and its symptoms. Good luck.

[laurastacey in reply to Shann07]

I hope you're doing well now though! Sounds awful going through it for that long. And you're right, they always make us feel like we're just worrying over something we've read on the internet, even though we're genuinely concerned.

I spoke to a GP at my walk-in centre today and she basically laughed at me when i said i'd been reading about it and am a little worried, she just told me to get a blood test done and only really seemed bothered about the tiredness saying it could be anaemia, even though i've been tested and it came back normal!

I'm so tired of running backwards and forwards complaining about feeling ill. Thank you.

[FionaGFG in reply to Shann07]

What are the tests for Lupus? Almost everyone on my forum has these symptoms and just makes do with them.

[Paul_Howard Partner LUPUS UK in reply to FionaGFG]

ANA test, anti-DNA antibody test, genetic complements (especially C4), CRP and ESR. These are some of the common tests, there are plenty more too. They will also examine symptoms and a family history.

You can also learn more about the diagnosis of lupus here - lupusuk.org.uk/what-is-lupu...

[FionaGFG]

Thanks Paul. But how do you actually get the GP to test for these? Most of my members struggle to get their Gps to take Coeliac Disease seriously and do annual checks on them. Often they have Lupus like symptoms but Drs just turn a blind eye and blame it on Coeliac or other matters.

[Paul_Howard Partner LUPUS UK in reply to FionaGFG]

If I had an answer to that we could help people a lot more. Unfortunately you can't make a GP do a test. You have to discuss it with them and hopefully they'll be receptive to it. If they're not, it may be worth trying a different GP.

[Chris21]

I've just gone into 'battle' with my daughter's gp, they diagnosed her with depression 4/5 years ago and now every time she goes with a problem they say its depression! She started to say she wouldn't bother going to the surgery as they thought she was paranoid and imagining it all.

This is after, an unknown blood disorder, joints aching and swollen, 2 back operations, headaches, blurred vision, dislocated/pain in jaw and extreme fatigue. They said they tested for lupus but the tests came back after a week. The tests I had took months to come back?!

The gp's question was what would you like me to do?! We now have an appointment to see a rheumatologist.

Never give up going to the gp, I know they are all extremely busy, but that's no excuse for not doing their job! Good luck with their findings and hope you get the help you need.

[Julymoon in reply to Chris21]

Hi Chris, I am sorry to hear about your daughter and hope things go well for her, fingers crossed. I do relate to what you have said, I was diagnosed with a rare form of cancer some ten years ago and even after my treatment any other symptoms I encountered were blamed on the chemo but eventually after a long battle the gods of the medical world finally agreed that i did have Lupus, though by then it had worked its way through most of my vital organs. Even now when i know I have a flare up but the Blood Tests come back normal i still get all my symptoms logged with my GP and Rheumatologist this i think will be evidence for future generations. Two of my daughters who are in their 20s both have Discoid lupus Erythematosus where as i have Systemic Lupus Erythematosus and I found it was most useful keeping symptom diaries for us all as the information and dates were at hand to show to the Rheumatologist, sometimes if they read it the take more notice. I wish your daughter well.