[ChrisMayo]

Hello.
I'm new here, so, sorry if I am posting in the wrong place, or asking something that has been asked a million times already.

I suffer badly from health anxiety, but think this time my worries are justified.

Basically for the last 5 or so years, maybe longer, I've had very red cheeks, and suffer from flaky skin on my eyebrows, chin and under my nose, with red blotchy patches. I went to the doctor who said I had a fungal problem, possibly eczema, and was given a steroid cream which managed it.

I then went to another doctor who gave me a hydrocortisone ointment, and said it was an inflammation/dermatitis, again it was managed.

I'd also been suffering from anxiety, and was on meds for that. I was convinced I had everything, had tests for diabetes, thyroid, liver function, eye tests (suffer from visual snow and floaters), HIV and Hepatitis, etc. All negative.

I've kind of dealt with the symptoms. Ive recently had some boughts of back pain, nothing major, but it comes and goes. Again, I attributed it to anxiety because I work in a stressful job and prone to panicking.

I was googling symptoms as I'd had a bad week, and noticed the butterfly rash. I went to ER today, as I was worried, and he said it could be eczema, but because of the back pain, said it could be lupus.

I just had a question really about the rash, mine has the sort of butterfly shape, but covers the whole cheeks, and is also blotchy/flaky at the eyebrows, chin (very sore), under the nose, and where the hair is on my sideburns (when I shave the hair there, there are just red marks).

I don't know if I'm wrong or not, but I thought the Malar rash didnt go in the areas under the nose/chin/side of face etc.

My dad also has problems with his skin, dermatitis, and has to use steroid cream, so, I dont know if it is something I have inherited.

Any advice, thoughts etc would be welcomed. I'm male and 21. No family history of Lupus or immune disorders.

Sorry for the long post, i'd be grateful for any replies.

I am going to my doctors on Weds for a talk about it.

Chris x

 

[KarolH]

Hi Chris,

Welcome to a great place for support, information and companionship from some of the best people I have come to know. You will learn a lot here.

As for your rash on your face, it is hard to say what it is. I think the best way to know for sure is to have a dermatologist biopsy the skin and then you may get concrete answers.

The doctor you are seeing on Wednesday, is this your primary care doctor? If so and you think or your doctor thinks that something auto immune is going on then a Rheumatologist would be the best doctor to get to the bottom of anything Auto immune related, including Lupus.

Have you had any blood work done and if so has anything come back abnormal?

Lupus has many faces and can present in many different ways but one thing is for sure, there are medicines out there to treat it and help us get on with feeling better.

It is tough to know for sure what is going on with your health and at 21 years old your young. You know your body best and if you feel that something is wrong then press forward, find a good doctor and you will get answers at some point. Lupus can take time to show up in the blood work and some folks with Lupus are diagnosed based on symptoms as their blood work is normal.........this is where it is important to find a good doctor.

I do wish you luck moving ahead in finding a answer to your health issues. Do you take medicine for anxiety/panic issues? If not you may want to get on something to help calm you down. If you already do then it may be helpful to increase the dose if your doctor agrees.

Let us know how your appointment goes on Wednesday. Keep your chin up!:wink2::wink2::wink2:

 

[Clare.T]

Hello Chris
I hope you have a kindly doctor who does his best and doesn't brush you off. It must be very hard to live with such constant anxiety. The only sure way to get reassurance is to have a few tests done and see a dermatologist.

As you comment the butterfly rash doesn't usually affect facial areas protected from the sun, that is not under the nose, not immediately under the mouth, not those diagnonal folds running from nostrils to corners of mouth and generally not areas around the hairline that are shaded by scalp hair. That would not apply to areas which are normally shaved though.
If you go to
http://www.dermnet.com/thumbnailIndex.cfm?moduleID=6&moduleGroupID=142&groupIndex=0&numcols=0

the sparing of these areas can be seen very clearly on the majority of images. However image 58.jpg on page 2 shows that these areas can be severely affected. (The same thumbnail is on page 1 but that one can't be enlarged) That is untypical so your rash is less likely to be lupus on that criterion.
You should consider if the rash is worse following sun exposure. Only about 30% of patients with SLE present with a skin rash.

It seems to me unlikely that you would have a systemic lupus related rash for five years and not have had any other symptoms The spine is not usually affected directly by lupus- it is more the outer joints like hands and knees. Many other typical symptoms are common to other diseases, such as hair loss or inexplicable immense fatigue.

It would be very unusual to have SLE without any abnormal blood work at all. A complete blood count can show typical abnormalities such as anemia or low platlets or white blood cell count. The SED rate can show some non specific inflammatory process. The antinuclear antibodies screening test ANA is important. Most people with lupus have raised levels although there again it is not specific except at higher levels. 95% of those with a positive ANA do not have lupus. Urine tests can indicate kidney involvement

The fact that you are male doesn't exclude lupus but makes it far less likely as the ratio is 1/9. The fact that there is no lupus or similar diseases, or any other autoimmune diseases known in your family makes it very slightly less likely to be lupus.

By the way there are over 100 autoimmune diseases but only a few like lupus that are described as connective tissue diseases and those are the ones treated by rheumatologists. Other specialists are brought in as needed depending what organs or systems are affected. Rheumatologists, because the joints are most commonly affected and what people usually report to the doctors for.

I'd like to suggest that it would healthy for you to stop investigating lupus on line. Just read through the ACR Criteria lists to get an idea of the most common symptoms and read through the articles on the information area of the site about symptoms and diagnosis and usual tests. Then go away and do something enjoyable.
If you haven't already done so, read all you can find about de stressing techniques of various sorts and start practising them, preferably with the help of a professional or in a group that gives incentives. These should be taught in schools! Cognitive behaviour therapy can be very helpful to and as Karol has mentioned medications can help very much too.
Make sure you have some regular exercise every day, however gentle. Swimming suits many people.

All the best - let us know how you get on please and good luck.
Clare

 

[ChrisMayo]

Thanks

Hello

Thank you both very much for reading and replying, it is appreciated.

Having looked at the images (much more clear than any I could find previously) I don't really think any match what I have. The only areas that are spared for me are directly under the eyes (so it is a kind of butterfly shape in that sense) but It fills the whole cheeks, and down under the nose, some on the chin, and on sideburns. None across my nose, apart from a small blotchy patch across the top of my nose which is often itchy.

The bits by my eyebrows, chin, under nose and sideburns are itchy/flaky, the parts on my face are partly blotchy.

The steroid cream got rid of it completely, but when I stopped taking it, it came back. I haven't really noticed it being a problem in the sun either.

I dont have any joint pains (except the occasional pains in my back), I had blood tests done when I first joined my doctors in Southampton in early 2007, all came back negative, I've also had blood tests done at a new doctors about 2 weeks ago, again, all came back negative. I asked the doctor at A&E about stuff showing up for Lupus, and he said you should see something, but not always.

The major symptom that concerns me is the fatigue. When I first went to the doctors about it, he ran the blood tests (pressumably to check for such things), and then said I was over stressed and had bad anxiety. While I was on Seroxat, for anti-anxiety, I felt a lot better.

Is the fatigue with Lupus so much so that you cannot get up or move or do normal things? Ive never been that bad, though for the first hour or so in the morning I'm very tired, and if I'm stressed/worked out, I get very tired too. Although I stay up very late (average bedtime about 2am/3am). In terms of moving around etc, I can jump around all over the place, and hot have any problems, I seem to get more energy outside though, being on a computer (which I am all the time) seems to make me drained.

I first had my skin problem in 2003, and first noticed any sort of anxiety related problems in early 2007 (start of vision problems, fatigue, stress etc, after a very stressful christmas/new year period). I've had a massive range of symptoms ever since, but the anxiety medication eased most of them for 6 months or so, so I felt fine. So that would be 4 years without any problems (from when skin problem started).

I'm not currently on medication, my doctor suggested maybe I should go back on them. On Weds I have a double appointment (20 minutes) to discuss everything. She is my General Doctor, so, I guess if any problems she will refer me.

Sorry if some of this wasn't relevant, but thought I would give you more of an idea about what I'm experiencing.

If you have any more thoughts please let me know.

Thank you again, appreciate it.

Chris x

 

[Katharine]

Hi Chris,

Giving us more of an idea of what you are experiencing is most useful as it helps us answer your questions better.

Although nothing can or should be ruled out, your symptoms don't sound very typical for lupus.

Lupus fatigue is very extreme and will go to the point of not being able to do anything. Once treatment starts working for people they will still often experience a kind of constant fatigue but it is less than the "walking through treacle" fatigue that they would experience without treatment. Our fatigue can vary from that of a person recovering from a severe bout of flu (real flu, not just an infection if you see what I mean) to the fatigue you get during that extreme bout of flu. Basically, you go to bed tired and wake up tired. Jumping around in any way is just not an option as your body feels like it weighs a ton and is fighting some sort of major gravitational pull. Sleep is a lot less restorative.

Of course what I'm saying here is a generality and lupus is as varied as the people who suffer from it.

As you have no doubt seen from the diagnostic criteria posted here in "not yet diagnosed" other typical symptoms of lupus include joint pain - as Clare said usually outer joints such as hands, wrists, knees, ankles, shoulders, hips...

Another important symptom for many is photsensitivity which can range from mild to severe. Exposure to sun not only makes the skin react very badly but can also provoke severe joint pain, worse fatigue and a generally fluey feeling.

I haven't mentioned half of the symptoms that people typically suffer from but, on the whole, it sounds unlikely that you have lupus even if, obviously, that can only be determined by clinical examination and blood tests.

One thing that struck me though is that you said that you felt a lot better (fatigue) while on Seroxat. Fatigue in varying degrees is a symptom common to many dieases/ailments and it is also a well known one of anxiety/depression. It is certainly well worth mentioning to the doc that you did feel a lot better at that time.

Just my thoughts, hope it helps a bit,

Katharine

 

[LolaLola]

Hello Chris, If you are still living in the Southampton area there is a very good Lupus Consultant there, so if I was Lupus you would be in excellent hands.
You do seem to have had an awful lot of stress and upset for such a young person- that certainly won't help you feel good.
Maybe a Chiropractor could help with the back. You could possibly have some problems with tense muscles due to working long periods at the computer. Do you have good seating and are you the right distance from the screen?

Take Care,
x Lola

 

[ChrisMayo]

Thank you

Thank you Katharine. That's very helpful.

Yeah I definately managed to get rid of a lot of my problems on Seroxat, but I don't want to have to rely on them for life. My doctor has suggested going back on medication, but I will await test results etc first.

All my joints are fine. Before I first noticed my back pain, I had some pain around my hip, but not had anything since. The back pain is not constant either. I had it for a week, and after a batch of painkillers, went away. It started up again the other day, (mainly after I was stressing about Lupus and going to the hospital) so not sure if It's an anxiety thing or something else. I have it mildly today, but haven't needed to take any painkillers.

I dont think Ive ever had a problem with the sun. I've got very fair skin, so, always put lots of lotion on, but never really had any problems. I tend to go out in it quite a lot, in fact, it generally makes me feel a lot better.

Just saw Lolas message, thanks for replying, I live in North London now, though Doctors in Southampton are a lot more helpful. Even though my doctor didnt think there was much wrong with me, other than anxiety, he took the time to answer any questions, discuss in detail problems etc etc. I'm onto my third doctor in London (same practice) and finally, she is listening to me, so hopefully it'll get sorted.

I can't afford a chiropractor unfortunately. My posture has always been slouched, and I am very tall and underweight (always have been), my dad also suffers badly from neck and back problems, I think it is in the family! But, because of my other symptoms i've naturally put it down to Lupus.

Cx

 

[ChrisMayo]

I forgot to mention that I also have Raynauds, or at least, think I do.

I had operations on my toes about 10 years ago due to ingrowing toenails, which may have caused it (I can still see the red injection marks)

Basically my toes are usually quite red, and in the cold (sometimes) they go white/numb, though they have never gone purple or blue, and there is never any pain.

Do you think this adds to the likeliness of it being Lupus, or can you get such things without having Lupus.

I've also posted some pictures of my face redness on another post, if anyone has any thoughts about either, it would be good to know.

Thank you
x

 

[Clare.T]

Raynaud's can either be primary, meaning not associated with any other disease or secondary, meaning it is associated with another disease such as the connective tissue diseases. I don't know how many people's Raynauds is secondary. It would count as a criterion for diagnosis only if there are other signs and symptoms of a CTD of some sort, lupus or a variant including abnormal blood work or urine.

Maybe your choice is between accepting medication for anxiety preferably with some sorts of anxiety reducing techniques or therapy and hoping to get it under control, or living the rest of your life with the anguish of it. I know which I would prefer!
I was very serious about advising you to get away from the PC and not look up symptoms especially if it is making you tired or depressed and feeding your anxieties. We can't say whether you have lupus or not. All we can say is that it doesn't sound like lupus, but who knows. You will have to see a doctor and get tests done.

All the best
Clare

 

[ChrisMayo]

Ok, thank you Clare for responding. Sorry if I have been annoying by keep asking questions. I just feel very frustrated and alone, and all my Symptoms seem to point to Lupus. I know I have previously put them all to various other illnesses as well, but, now I've got it into my head about Lupus, I cant seem to shift it.

I have to wait for my appointment on Weds which seems like an age away, and then try and get referred.

Thank you for replying. If anyone has any words of advice, or, thoughts or anything, i'd be happy to hear them.

Cx

 

[LolaLola]

Dear Chris, I am sorry you feel so worried. I really hope you get a diagnosis and some help soon.
x Lola

 

[lazylegs]

Hi Chris,

It is more common for Raynaud's to be the Primary disease. Raynaud's can be triggered by many things. Cold being one of them, which you did mention. It can also be triggered by stress, smoking, injuries or other things that constrict the blood vessels. The following site will give you more information.

http://www.mayoclinic.com/health/raynauds-disease/DS00433

I hope this reassures you that the cause of Raynaud's is more likely to be due to something other than Lupus.

Take care,
Lazylegs