New to EVERYTHING!

[mrosed]

Hello all,

I am a 25 year old female who very recently (this week!) found out that I have an auto-immune disorder. No one in my immediate or extended family has an auto-immune disorder so this is coming as a great shock to me. Here is my story:

I've had Raynaud's Disease since about puberty. The disease has always been mild and has never required any medical treatment. The disease primarily effects my feet and my hands tend to respond differently. I've shown numerous doctors my feet and no one every expressed any concern. I can't even tell you how many times I have been told that there is no treatment for Raynaud's (which is very false by the way!). But, because of this I was never concerned.

About two months ago I noticed a very small bump on the tip of my big toe. I had no idea what it was so again I didn't worry about it. I didn't worry until it continued to grow and eventually became very painful. After two months of growth I scheduled a podiatry appointment. At my first appointment the doctor took a biopsy and said that it was probably nothing and not to worry. Two weeks later I went to get my stitches removed and hear the results of the biopsy. The doctor told me that what I have is called Pernio (or Chilblains). Pernio is a lesion that blisters when an individual with a predisposition is exposed to extreme temperatures. This has been an extremely mild winter, so obviously the lesion was secondary to the Raynaud's.

Although my doctor didn't express any concern.. I was VERY concerned. I've educated myself about Raynaud's and the primary condition very rarely results in lesions. So I decided to try a new primary care physician and have complete blood work done.. which brings me here. 

My doctor called me with my test results on Monday and I had a positive ANA. My Sjogren's SS-B was also positive and my platelet count was very low. Through my own research I have read that these results are usually common with individuals with either Sjogren's, Lupus, or both. My research started with Lupus because I am more familiar with it and honestly had never heard of Sjogren's before. I never had an "ah-ha" moment when reading the symptoms of Lupus however. I've been chronically fatigued my entire life and battled with GI issues, but I've never had odd rashes or other symptoms strongly related to Lupus.

So, I began to research Sjogren's extensively. At first I thought no way.. I have never thought my mouth was dry and of course my eyes are dry - I wear contacts. But then I continued to read and investigate and slowly my life began to finally make sense.

The last time that I went to the dentist (in the fall of this past year) I had 8 cavities. Eight! I've always had cavities, I LOVE sweets. But come on.. I brush at least 2x a day and I even floss. Also, I have had a runny nose for as long as I can remember. I always thought that I had year round allergies, but I've been tested numerous times and nothing even came back positive. I have also never had a sense of smell. It's been a running joke in my family because of how bizarre it is. I've also never told a doctor about it because I thought that it was related to my unknown allergies. Mostly though, it's the fatigue that has been my biggest complaint. I can't remember a time in my life that I have woken up feeling refreshed. Everyone has always told me to stop complaining and that I am fine, so I can't express to you how it feels to finally have some answers.

The most interesting part is that my mom (65 today!) was recently very sick. She went to three different doctors and no one could figure out what was wrong. Finally the last doctor sent her to have blood work done and her ANA is positive as well. She is diagnosed with Osteoarthritis, but after all of my research I strongly believe that it is Rheumatoid. Additionally, I know that there is a small link between Sjogren's and Non-Hodgkin's Lymphoma. My grandmother had NHL, as well as a chronic cough and an odd addiction to throat lozenges. It's very likely that she had Sjogren's as well but was never tested. Unfortunately she passed when I was young, so it will have to be left to speculation. 

I see a new Rheumatologist next week to have some more tests done. Any words of advice are more than welcome and I thank everyone in advance for the much needed support at a time where no one understands exactly what I am going through.

Best,
Molly

[Joe S.]

Welcome molly.

While I am glad that you found us, I do not like it than 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.

Sjogren's – 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. Don't 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 Sjogren's 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 S's of Sjogrens.

I recently saw a gal with very severe Raynauld's. This sequence of tones helped to warm her hands and change the color of her skin: http://www.chakraforce.com/Tonations.html#173.

[mrosed]

Thank you so much! I have a feeling stress and anxiety are going to be one of my biggest barriers. I just so happen to be a social worker in one of the busiest crisis centers in the nation. I know that this has had a very negative effect on my health, but I love my job. I need to be more proactive. I've gotten into yoga and meditation in the past, but mental and physical fatigue frequently keep me isolated.

Thank you again and I will put your words of wisdom to good use! 

[Shelly]

Hi mrosed,

I was recently diagnosed with Sjogren's after some positive blood work and symptoms as well (Dx Dec 2011).  I am 24 years old so we are not far apart in age!  It isn't very common to have such an early diagnosis of this disease, and I for one am happy that I now know what is causing my strange symptoms!  This website is so useful and the users are wonderful.  Right now, I'm looking into preventative treatment options for Sjogren's - because of my age.  I'm not comfortable with going on the medications for Sjogren's because they can have harmful side effects and for starting them at such a young age, the risk of side effects would increase.  I haven't really found any preventative treatment options but I am meeting with a rheumatologist that specializes in Sjogren's next week.  Hopefully he can shed some light on the subject.  I am not impressed with my current rheumatologist, as he just diagnosed me and then left the exam room - even though I had a billion questions to ask him!  My best advice is to find a good rheumatologist who works WITH you - who just doesn't diagnose you and kick you out.  This disease can be progressive and we are both blessed to have found out that we have it at such a young age so we can take preventative measures in hopes to stop progression.  I wish you all the best!

Shelly

[eye2dry]

Hi Mrosed.

It sounds like you are the right path to find help after getting your diagnosis of SJS. Like you, my diagnosis was allergies, then they added occular rosacea. My main overwhelming complaint was my dry, gritty,  burning and bloodshot eyes. I had to give up contacts over 4 years ago.

My family , both sides have diagnosis of autoimmune diseases too...psoriasis, Reynaulds, interstitial cystitis, rheumatoid and lupus. Except for me..no other sjogrens in the family. I guess the "cards" were stacked against me from the get-go.

Glad you made it to this forum. There are people here who have dealt with this much longer than I have.....and can help answer  your questions.
I am sorry that you have sjogrens at so young of age (or have SJS at all for that matter).

take care and keep us posted on whats going on with you.


eye2dry

[MissyLouWho?]

Welcome!  I'm glad things are finally clicking in your health and making sense.  I felt the same way.  It was like after all these years, the puzzle was finally coming together, piece by piece.  I felt so vindicated, I just wanted to shout to all those people that said I was a hypochondriac or WANTED to be sick (really, who WANTS to be sick??) or that I was just lazy or bored that I WAS RIGHT!!!!! 

I also have low platelets and my rheumy said that HIGH platelets are common with SJS, and low is more common with lupus which I also have.  So because of this, I have a tentative dx of primary lupus, secondary SJS. 

I'm glad you found out about your AI.  Because of your diagnosis, you may have just helped anyone else in your family get checked. 

Getting a diagnosis and then the meds to go along with it will stop the rapid progression of Sjogren's.  The damage can be prevented, but not reversed after it's done.  That's why an early diagnosis and treatment is so important.

[Crymeariver]

Hi Molly

Your story is very interesting to me as I too never had a sense of smell, and I have secondary Sjogren's and chilblains.  For a hot second I thought I had written the post 

I know it seems hard at your age but it is beneficial to get an early diagnosis.  There are effective medications that help many of us and the sooner you control the disease the better.    Good luck with the new rheumy.   

[ttdub]

I'm so sorry you're dealing with this so young. I know your pain. I'm only 22 and hate the problems that occur with an auto-immune disorder. Just know you're not alone in this.

[mrosed]

Thank you all so much for your support. I'm so happy it's Friday and this week is finally coming to an end! 

Shelly: I would most definitely find a new doctor. I'm a people person and even if I were going to see someone who is the most amazing doctor and specialist.. if they can't communicate with me and express unconditional empathy -- then I most definitely will not be feeling better. I hope you find someone else who you like. It's also nice to know that a lot can be done to prevent the progression of Sjogren's. I wasn't conscious of all the symptoms I have until I began learning and educating myself about the syndrome. I've lived with them up until now, so hopefully I have some time before they get worse and find treatment to suppress their development.

Eye2Dry: Having to give up contacts is a fear of mine. My visions not too bad, but I'm not one who looks cute or cool in glasses!  Do you know if people with SS often have Lasik Eye Surgery -- or if it's even an option???

MissyLouWho?: All I have to really say is THANK YOU! I can't even tell you how many times I have been called a hypochondriac or that others have implied that I want to be sick. And if my boyfriend calls me lazy one more time he will be stuck reading an entire text book on auto-immune disorders! haa I understand that I complain a lot and that I have been doing so my entire life... but that's because I know my body and I have always known that something is wrong. I can't explain to you (although I'm sure you understand) the odd amount of joy I felt when reading about the effects of SS. I finally have some answers and more importantly I finally know that I am not crazy (well at least regarding my SS symptoms haa)!

Crymeariver: Who would have thought that two people could bond over such odd symptoms! haa But not having a sense of smell has been both a blessing and a curse  As for the Chilblains -- I'm just happy they're less likely to happen during sandal wearing weather! ha

ttdub: I have always been an advocate against elder discrimination because obviously -- we all inevitably age. But I didn't expect to have these issues with my health until I reached that phase of my life myself. Thank you for your support.

Thanks again to everyone. This week has been horrible, one thing after the other. I started the Amlodipine exactly a week ago for my Raynaud's. Since I started it my doctor asked that I keep track of my blood pressure, since Amlodipine is also known to decrease pressure (and it just so happens I work in a hospital!). I took my pressure at the end of last week and beginning of this week and it was great. But yesterday I found myself not feeling well at lunch so I had a co-worker take my pressure and it was 139/99 with a resting pulse of 113. The blood pressure is done by a machine, so I know it wasn't high due to human error, but I don't know why it's so high even on this medication. Does anyone else suffer from high blood pressure? I can't find anything online regard SS and blood pressure.

I hope you all have a Happy Friday!

Molly

[Crymeariver]

There is a recent BP thread in the discussion forum.  It seems we are a mixed bag.  My BP on Wednesday was 113/60. 

[eye2dry]

mrosed.

I asked my eye dr if I could be a candidate for LASIK or PRK and he said "No, your eyes are not healthy enough"

I believe someone on this forum once said that their eye dr. told them in regards to sjogrens patient getting LASIK
"if any opthalmologist preformed LASIK on a sjogrens patient they should have their license taken away".

Apparently...LASIK surgery has a potential side effect...as in dry eyes.
I had my lower tear ducts cauteruzed closed and it has made my eyes more wet..but still no LASIK for me.

I hope you never have to give up your contacts.


eye2dry

[Meld256]

Hello, mrosed and welcome to Sjogren's World. 

I'm sorry you've needed to find us, but think you'll see there are loads of topics to search, and some very friendly, supportive and helpful people here.

I'll post more later, but wanted to take a moment to say "welcome" and hope you find the site as warm and encouraging as many of us have.
I look forward to hearing more from you.  Feel free to post away!

Melinda

[mrosed]

Hello all,

I had my first Rheumatology appointment this past Thursday, so I thought that I would update you all. I was really nervous going into the appointment. All of this has happened so quickly and I still feel very unprepared. I met with the doctor briefly and then had more blood work done. My doctor was mostly interested in the medical results that I brought in, rather than symptoms that I have had. I was a little discouraged by this. I know that our bodies are complicated and that various symptoms might have numerous causes, but I felt that there was a very distinct pattern to my symptoms that seem to reflect my test results.

All in all I left with a diagnosis of Undifferentiated Connective Tissue Disease. My doctor explained that a lot of my symptoms overlap into various types of disorders and that I probably won't fit into one category. However, I read that an Undifferentiated diagnosis is very different than a Mixed diagnosis. Am I correct?

He made me feel that my symptoms are mild and that I shouldn't worry, but recommended that I think about starting Plaquenil. I felt that this was contradictory to how much he down played my symptoms. I felt that if they are that mild, then I shouldn't need to take anything..

Was anyone else initially diagnosed with UCTD? Unfortunately this diagnosis is not concrete enough for me and I hope that I will eventually be provided with more answers.

I am going for a Salivary Gland Scan on Thursday. However, I don't feel that my mouth is as dry as my eyes. Do the mouth and eyes usually progress together?

Does anyone have any recommendations/experiences pertaining to Planquenil? I didn't want to start any medication if not absolutely necessary, but if the Planquenil will decrease the progression of the disease then I will try it out.

Thanks and hope all is well,
Molly

[A66eyroad]

Molly, my rheumy also dx'ed me with UCTD, and you're right, it is kind of vague. In fact, my G.P. called me to find out what it meant because when the rheumy sent him a letter (at my request) he only used the initials.

The good news, though, is that my rheumy -- and maybe yours! -- treats UCTD the same way as Sjogren's!

And weirdly, in the last letter the rheumy sent my general practitioner, he used the diagnosis Sjogren's. And I've got the same labs and the same complaints as before. So that makes me think that perhaps your doc doesn't want to "label" you as a sjoggie -- perhaps for insurance purposes.

As an aside, I strongly urge you to consider Plaquenil. Do a search on this forum to get some great info on it. I wish I'd been diagnosed a lot earlier and had started on Plaquenil earlier. Maybe I wouldn't be such a drag now!   

[quilt4fun]

       I've also been dx'ed by rheumatologist with UCTD and Sjogren's.   Then he explained that UCTD is just a  catch-all phrase that says they don't really know what else to call the swelling/pain/rash on my arms, chest, neck. or what causes it