Need some advice please - could I have Sjogren's?

[Irishlass]

Hi everyone,

Thanks for this great site; I finally feel like there are people out there who understand!

I have been from my GP (multiple times) to Rheumatology, Internal Medicine, Ophthalmology and have been referred to a 2nd Rheumatologist (apt is for next Tues.

My main symptoms are:

- Dry, dritty, blurry, sticky eyes (reduced quality & quantity of tears according to my Optician who did a Schirmer & dye test). Can't tolerate contact lenses anymore, eyes sensitive to light, use Hyloforte drops from 6 times/day to nearly hourly and Artelac nighttime gel at night. My Ophthamlmic surgeon (bless him) put in plugs

- Dry nose, sometimes get crusty skin and sores which can bleed. I feel sort of pressure around my sinuses also

- Sticky saliva, although I am producing saliva it's getting more viscous and my throat is permanently dry and tickly. It's especially bad when I talk and my taste buds have gone funny. I have a mouth full of fillings and one of my teeth recently crumbled away

- Painful joints

- Feel like I have the flu or I am coming down with it (low grade fever, chills or sweating)

- Swollen, painful glands (inguinal, neck, face and occipital)

- Fatigue like I have never had in my life before

I feel like I am going crazy because people keep saying I don't look sick and I feel miserable. I have felt unwell every day for over 3 months but I got the brush off by the first Rheum because all of my bloods are negative (including CRP & ESR). Also he seems to think my mouth should be as dry as my eyes are. He mentioned Sjogren's but then disregarded it in the next breath by saying it was very rare.

Think I will lose it if another doctor offers me antidepressants and tells me to take Iboprufen.

Anybody know any good Irish rheumatologists based in Dublin?

Any advice on how to get the Rheum to take my symptoms seriously?

Sorry about the long post!

Any advice much appreciated!

Irishlass

[Ark mom]

Hello and welcome to the board! 

I am so sorry to hear that you are having such a hard time.  I, too, have negative bloodwork (ANA, SSa, SSb, CRP, ESR, etc).  I have chosen not to do a lip biopsy because my doctor is treating me all the same.  I have lots of symptoms:  dryness everywhere, joint pain, muscle weakness, dizziness, muscle twitches, tingling and numbness, burning skin, and bladder and bowel urgency. 

Plaquenil wasn't enough for me.  We tried methotrexate, too, but now I am on Arava.  I am hoping it works well when I start tapering off prednisone again in another month or so. 

Take care!  Post often.  We are here for you during this journey!

[Nancy60]

Hi and Welcome,

You do certainly have many of the signs and symptoms of Sjogren's.  It can take a long time for antibodies to show up and as others have said, you can be sero negative and still have Sjogren's.  Has you Optho done tests on your tears?  Has your dentist checked your salivary flow.  These are simple non-invasive tests that may help you make your case.  When you go to the Rheumy, in addition to telling him your symptoms, be sure to also tell him how it is impacting your life, what things have you stopped doing or are finding more difficult, how much pain are you having etc...  He is more likely to start you on treatment if you can share with him the negative impact all this is having on you.  A symptom diary is a good idea, or chronological list of symptoms, when they occurred, what you tried for treatment, how it is impacting your life etc...  I am from the US so can't help as far as doctors are concerned.  Hopefully someone will come by to help in that regard.

Welcome again and hope you get some answers and treatment soon!

Nancy

[SjoGirl]

My blood work first had a higher than normal SSA (which the first rheumy missed) then other readings started to rise such as sed rate then ANA. My lip biopsy was negative as well. It takes up to seven years for an AI to declare itself so you may test negative.

And, unfortunately, yes, you may look marvelous (as comedian Billy Crystal used to say) and feel like death warmed over. When I was at my sickest and no clue what was wrong with me people who had not seen me in a while would rave about how wonderful I looked and I'd be screaming inside.

Be persistent, find docs who get it, if you can afford it and need to purchase books about SjS and give them to them. We have to be our own advocates on top of managing the symptoms. Hang in there, it is possible to get past this stage.

[Joe S.]

I was Dx'd by symptoms when I asked "dry eyes, nose, mouth, skin and bum, what do you think it is?" after years of definitive tests.

While I am glad that you found us, I do not like it that anyone else should have to deal with this health challenge. I am more frustrated when I see younger people with this illness understanding that there is so little that is being done to help us. I believe that the medical model for Auto Immune disease is wrong. I use alternative therapy because of bad reactions to Plaq and MTX.

Sjogrens: Dry eyes, dry sinuses, dry mouth, dry skin, and dry bum.

You may or may not be faced with other health challenges related to this disease that the doctors do not tell you about. Auto Immune (AI) diseases love to bring their friends. If you have one, eventually you will have more than one.

I like also suggest that people with AI diseases read Spoon Theory on the web. It helps to explain how our lives have changed and helps us understand how we can manage the changes to our lives.
http://butyoudontlooksick.com/navigation/BYDLS-TheSpoonTheory.pdf

1. Do not Panic: Anxiety can make your symptoms worse. I suggest that you read and practice the exercises in the book Feeling Good by David Burns. The book is on Cognitive Behavior Therapy (CBT). It has information on dealing with depression, grief and other mental health issues that you may face in living and managing this disease.

2. Breathe: For as long as you live always remember to breath. When we are in pain, our muscles go into a splinting action. I know that it is hard but we must remember to breathe through the pain.

3. Meditate: Meditation can help you deal with pain and symptoms. When you can do it for 15 minutes you will be at that stage. Here is a very easy meditation technique that will help you as it has helped me. Find a safe comfortable position and close your eyes. With your eyes closed, look to the top of your forehead. As you breathe in, think I am as you breathe out, think calm. Repeat as needed. Meditation can be as good as sleep.

With Sjogrens we tend to have a lot of infections so wear your polar fleece mumps scarf to bed. This will help your body to fight these infections. This link will help with the gland issues: http://www.chakraforce.com/Tonations.html#228.

Omega3, D3, C, Multivitamin, Probiotics seem to provide general support to our bodies when we are facing AI diseases. I like to add an 8oz glass of carrot juice every day to help my body generate endorphins.

I take what I call the Fabulous Five supplements and I wish I had known about them when I got my first AI disease. They are Alpha or R Lipoic Acid, Acetyl-L-Carnitine, Biotin, PQQ, and Co-Q10. As with any drug or supplement, do your own research and consult with your healthcare professional.

Sip-Swish-Swallow are the three Ss of Sjogrens.