In denial and confused...

[Tryfan]

I'm very confused.  I've been diagnosed recently (couple of weeks ago) and have only told my mother, sisters and husband.  The Rheumatologist seemed to think that my case was quite mild but that makes me think it is something to put up with and get over..  And then, yesterday, I went for a walk in the sun (with suncream on etc..) and felt dreadful later, kidneys hurt, face bright red and nausea during the night (are the kidneys affected by the sun?).  I feel sometimes that one minute I'm okay and everything's okay and then next, I have overwhelming fatigue, pain and odd symptoms everywhere.  Last night, I had peculiar neurological sensations in my head and had a nightmare, feeling very dry and hot as though I'd been sunburned I suppose.   Also, I have left sided symptoms going from a swollen feeling in my ear and jaw (and pain) down to the ribs.  Could it be something else if it is only on one-side?  My Schirmer's was very much left rather than right.  I've just been to the Dentist and she said that my saliva is okay and she wouldn't have thought of Sjogrens.  I have a butterfly rash and difficulty swallowing.  My hands are weak and joints in the fingers and thumb hurt often.  What I'm saying is that sometimes I feel like sharing this and getting help and sometimes I feel I can cope and keep going with my very busy family life.  Once I've told more people, they know forever but maybe it is me who is in denial.  I do think that maybe someone has got it wrong...sorry for all the questions...I know denial maybe part of this but I need to understand what's going on before I move forward.  Any advice welcome!

[jonnell]

Tryfan,  Have you had any blood work done.  Like ana test or ssa or ssb test.  My 4 year old Jenna has sjogrens and has a very hard time with the sun and the heat.  She gets very tired and has bad leg and back pain(in the Kidney area) .  She also gets the butterfly rash accross the nose and under eyes and seems to be more swollen in her face.  Its hard to come to grips with such a confusing disease,  but I find this web site is very comforting and the people here really care.   Sending you a big hug.    Jonnell and Jenna

[Linda196]

Tryfan, denial is, indeed, very much a step in learning to deal with this disease. How were you diagnosed? The blood work that Jonnell mentioned, if positive, makes your diagnosis fairly certain, but nothing about SjS and autoimmunity is 100%.

Are you being actively treated? For example, are you taking any medication that could have a systemic effect, like Plaquenil or Prednisone? Both the disease and some of the treatments can cause sun sensitivity, and not just easy burning...sun sickness can have an affect on skin, internal organs, and the general way you feel. Many people find that, especially during a flare, they have to stay out of the sun, or wear long sleeves, long pants, broad brimmed hats and wraparound sun glasses if they have to be out. There are sun blocking clothes available, too, and you could probably google them.

Carrying on with your normal life is admirable, but not always possible without some modifications; for example, if you can work rest periods into your schedule, it may help more than you can imagine. Moving on requires learning your own personal "brand" of SjS, and what you have to do to be as normal as possible and still feel as well as you can.

[Redetha]

I stayed in denial and confused for a long time.  Even now after 3 years (and probably longer
since I had a lot of symptoms before I was diagnosed)  there are days when I think, maybe I don't have this Sjogrens'.  This is usually when I am on the up side.  Then, when I have a flare, I am sure that I have it.  One of my biggest problem is the gland on the right.  It becomes infected and swells and hurts.  That is when I head to the ENT.  So yes, one side can be worse than the other.   Keep coming to this site and checking things out and you will find much info and suggestions.   Hugs to you.  Redetha

[Scottietottie]

Hi Tryfan 

My rheumy also suggested that SjS was somehow more of an inconvenience than a big deal. All I can say to rheumy's with that attitude is that I wish they could have a flare of SjS for just a week - cos they'd soon change their tune.

I feel ill after being in the sun long as well. I find it's something my workmates don't understand at all. They just don't 'get' it. Sometimes my job involves days outside and I dread them.

Take care - Scottie 

[lighthouse33]

This takes me back to last summer when my brother was here visiting.  I spent three days out on the golf course, driving the cart for my family.  I knew that plaquenil says in their leaflet to avoid exposure to the sun but we thought they meant like 8 hours or something.  Second, I didn't know that Sjoggies were sun sensitive.  The morning he left I was so sick (he never knew a thing) I made an emergency visit to the rheumey, got a shot of steroids and was started on prednisone.  Now I know better, I'm lucky if I can tolerate ten minutes out in the heat, it leaves me exhausted.  It didn't help that I had neurological symptoms like burning and tingling start up right before he came.

[Patze]

Hi Tryfan,

Let me also welcome you to the SJS World!  Please do look around as there are tons of topics that might interest you, and let's not even mention the oodles of really great members!

I know that if I'm in high heat for any length of time, I come up hyper exhausted, and wind up looking like a lobster no matter how much sunscreen I use.  Can't seem to win with this mess....

Take care -

Patze

[Chickpea]

Hi Tryfan

I'd agree with the others that adjusting to the diagnosis is definitely a process, and a painful one at that.  It seems odd that we have to adjust to the symptoms, the changes in our lives, and then adjust to the actual diagnosis as well.  Part of what makes it hard is that we have to help our nearest and dearest with their adjustments too.

I thought Linda's comments were really insightful:  'Moving on requires learning your own personal "brand" of SjS, and what you have to do to be as normal as possible and still feel as well as you can.'  This is such an odd condition and we really do each have our own 'personal brand of SjS'.  That makes adjustments harder I suppose, but we can still extend a hand to each other as we walk this new road.  Even if the hands are a bit shaky, and the legs wobbly!

Take care - Chickpea

[Rostradamus]

Tryfan, well denial passes just as with some doctors lack of diagnosis, in time it is all there, symptoms and what triggers them. It is a shame compasion isn't a prerequisite for being a doctor. And unless you by chance have an appointment when you are flared, how is he really going to know the severity? Yes Kidneys are attacked by Sjogren's and during Flares you'll know. Sjogren's also may attack different areas at different times, one of the reasons it is so hard to diagnose. It is better to know and be able to get help than feel your body go thru all these symptoms undiagnosed, very honestly. Also I've got to point out that a butterfly rash is a classic Lupus symptom. You can check out both symptoms at, WrongDiagnosis.com . If your Sjogren's is "mild" or just starting it is good you found this site for practicle advice. Took me over 3yrs. Here people actually understand even if your doctor does not. You can't ask for a better sounding board. Tell family and freinds but it might be helpful to download  a breif "About Sjogren's" from Sjogren's Syndrom Foundation.com or Mayo clinic  or American Autoimune Society.  Yes , life changes. I had a house fire after being hit by a semi-truck the week after my mother died. We don't ask for it  but ##$%%# does happen. It is where we go frome there, that is our life. I couldn't do one handed handstands anymore, but I could still do 360's skiing on expert slopes. Replacement therapy, focus on what you can still do and maybe learn a new trick; a musical instrument is a good love affair. And cooking? gotta love it.