New Here

[HeatherS]

Hi,

I was diagnosed with Sjogren's about 6 months ago, although my rheumatologist isn't 100%.  I'm 32.  I used to be very active then suddenly, about a year ago, my knees started bothering me quite a bit.  It turns out I have some arthritis in them.  About the same time, I started having problems with dryness.  This past winter, everything got much worse suddenly.  I had major stomach problems and lost about 20lbs, the dryness was so bad I kept getting candida infections and my eyes were so dry my vision was affected.  My knee pain was unbearable but there has never really been any obvious swelling to go along with it.  I couldn't concentrate at all.  I would have episodes where I felt very cold.  I finally went out and bought a thermometer and found that my temperature was actually dropping during these episodes.  All of my joints were popping.  I had horrible fatigue but at times I couldn't sleep.  I also started having panic attacks of some kind.  I would get a rush of adrenalin, sometimes in the middle of the night.  I went to a rheumatologist and my only tests to come back positive were the schirmer, 1:320 speckled/homogeneous ana, and false positive lyme.  He put me on Plaquenil and it has worked wonders.  In May, I took a vacation to Key West hoping to be able to relax after a horrible year.  I didn't feel good on day 1...I thought I had a uti.  On day 2, I developed a horrible infection in my leg after going snorkeling (I had an open cut).  I had a reaction to IV Vancomycin so I ended up on IV doxy and had to take it in pill form for the rest of my vacation.  I developed horrible rashes and blisters all over because of the doxy and sun combination and since then the dryness and stomach problems have returned as well as the panic attacks.  It is definitely not as bad as it was before starting the plaquenil.

I feel like I'm in limbo because no specific antibody showed up positive and my dr. isn't 100% sure it's Sjogren's.  I'm so thankful he's treating it, but I wish there were more tests to back up my symptoms.  Sometimes I think I come across as a hypochondriac with insufficient evidence to support what I'm feeling.

Has anyone else had this problem with a diagnosis and this feeling of being a hypochondriac at times?  Would there be any benefit to having a joint tap?  I'm going to ask my rheumatologist about this next week.  Maybe that would come back normal too but my knees bother me constantly and I worry about the damage that's occurring.  I already had to change my job because of my knees.  I'm watching my garden go to waste because of this also.  They have been slowly improving over the 6 months that I've been on Plaquenil but I still can't do nearly as much as I used to.  I'm only 32 and want to hold off on knee replacements as long as possible.  And has anyone experienced rushes of adrenalin?  I'm assuming it's a panic attack.

I'm sure these are questions other people have already asked, but sometimes it's just helpful to get them out.

Heather

[Joe S.]

1. Bring an advocate with you to your appointment.
2. Have a list of questions. Make sure your advocate knows your questions.

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.

[mshistory]

Hi Heather and welcome!

My knees are constantly hurting too, but I do get joint swelling - particularly in my fingers and small joints (e.g., wrists) but I've had swelling around my knees.

Even with other positive antibodies, these AI diseases can be hard to pin down. There are only a handful of antibodies (I think...?) that are specific to certain diseases like anti-Sm (SLE) and anti-RNP (MCTD). I am anti-Ro/SS-A positive and have a high rheumatoid factor along with an extremely high ANA (speckled) so my blood work suggests Sjogren's but my symptoms suggest SLE and Sjogren's. There are quite a few people with Sjogren's on this board who don't have any positive blood work, but are very symptomatic.

I am glad you are receiving treatment and that the Plaquenil is working well for you - it didn't help me much, and I'm on Imuran now and so far, seem to be doing better on it.

I'm not really sure there's any benefit to having the synovial fluid examined - it sounds painful!! Would it change your treatment if signs of inflammation are found? I have synovitis dx because of the obvious joint swelling, but it has never changed my treatment (NSAIDs, Plaquenil and very infrequent steroid shots because I don't tolerate steroids well, unfortunately  ) I was put on Imuran after developing sun sensitive rashes, and it has actually helped more with the joint pain than the Plaquenil, I think... I've been able to wean off the Relafen I was having to take pretty regularly to occasional use now.

[eye2dry]

Hello heatherS

I have recently also started with "panic attack' symptoms....they can come on for no reason at all...started about 3 months ago. I can be reading a book...sleeping...driving..etc...

I was diagnosed with sjogrens in sept 2010 and had/have some of your symptoms and was started on Plaquenil and prednisone after my first visit. it really helped with joint pain and my fatigue.

I also just began having knee pain about 1 year ago and complained about it to my rheumy and he said he believed it to be "osteoarthritis". It comes and goes and at work it can be a real problem d/t the things I have to do and can't ask everyone else to do things for me.

I never heard of "tapping' your knee for a diagnosis...I've heard of a spinal tap or a tap to draw fluid off a joint for pain relief.

I am sorry that your vacay to Key West was ruined.

It does sound like your infection problem has set you back on your sjogrens relief with the Plaquenil...they call it a flare. From what I understand if your doing alrught "for you" and a stressor or illness or no reason at all your symptoms return or ramp up...is a flare.

maybe your rheumy may suggest adding a new medication..such as methotrexate..or maybe trying prednisone..to ge you back where you were.

Sounnds like your rheumy is still willing to treat you for sjogrens even they your lab at this point is "iffy". I wouldn't really want a firm sjogrens diagnosis on paper if my rheumy will treat me regardless.

However...I understand having that diagnosis validates to others that you are not a hypochondriac. On this forum you don't have to worry about that kind of attitude!

Take care and let us know what your rheum thinks after your  next appt.....especially on your knees.


eye2dry

[HeatherS]

Thank you for the responses.  I was thinking about a joint tap out of desperation.  I just can't believe how quickly it hit and how much it affected my life.  I was cleaning in the house yesterday and just lifting a box made my knees burn the rest of the day.  I work with animals but can no longer do that because it requires too much physical work.  This time last year I was hiking for hours at a time at least 3 times/week and running.  Now I can bike on flat surfaces slowly through a park for maybe 20-30min but the uneven terrain makes walking through the woods difficult and this is how I've always relieved stress. 

When the plaquenil was working so well, I thought everything would go away completely and I could get back to normal.  I know that's probably unrealistic.  I've only had symptoms for about 1-2 years.  I got the swine flu and I think that might have set everything off.

About panic attack symptoms, if sjogren's affects the exocrine glands, I wonder if it can also affect the endocrine glands like the adrenals?   

[Katybarstool]

Hi Heather

And welcome to the family. This may be completely wrong, but I winder whether you actually have hypermobile knees? I've had knee pand hip roblems for years, and my rheumie was always dismissive as the xrays were 'good'. However, a new physio has confirmed that my knees and hips are actually hypermobile, which is why they can be so painful. Apparently, because they are more flexible than they should be, we damage them without realizing.

Kathyx

[HeatherS]

Yes, I was told at one point that I might have hypermobility.  My hips are starting to bother me too.  I wonder what can be done about that?  I do have arthritis also, whether it's from hypermobility or not I don't know.  I had an arthroscopy and my Dr. said the damage is diffuse.  What no one can tell me though is if they should feel this bad with the amount of damage that's there.  Is hypermobility related to sjogren's in any way?

Did your rheumatologist have a radiologist read the rads?  Sometimes a radiologist has a different perspective and will see more. 

[Ilene]

Hi HeatherS,  I too am new here.  sorry you're having a difficult and frustrating time.   I was diagnosed with Sjogrens abou 2 1/2 years ago.  I also suffer from chronic Lyme disease.  I had a bite around 16 years ago and got very bad advice from the doc I went to.  I waited (as i was advised) and got tested after several months.  at this  time I was beginning to get symptoms.  It was too late.  I've been on and off antibiotics ever since.  Some have helped my symptoms considerably.  to this day, I have never had a positive Lyme test.  I have had a few that are "borderline",  but never positive.   I find it striking that you have had a positive Lyme test and no one has treated you for it.  With Lyme disease,  Many people have false negative tests. it is very common.  To date, I have never heard of anyone having a false Positive test. 
As many of  the symptoms are the same (fatigue, joint and muscle pain, anxiety, chills, sweats, and more) it can be confusing.  Placquenil is used to treat Lyme and some of its co-infections.   I took it once.  It made me extremely ill so I had to stop taking it. I don't know where you live, but it would be most important to find a  Lyme doc. There are docs who specialize in it.  There are other doctors who may not specialize in it but are educated in Chronic Lyme and know how to treat it.  Many doctors do not believe chronic Lyme exists at all.   They will be dismissive and steer you elsewhere.  You can google Chronic Lyme Disease.  There is a lot of info on line.
Three years ago I began to feel the dryness in my eyes. My eye doc saw it in my annual eye exam and told me to get tested.  I did and have a pos SSA for Sjogrens.  I had been tested for many autoimmune diseases a few years earlier, and all was fine. Now I have both!  Agh....

I don't believe you are a hypochondriac and neither should you.  I have had most of your symptoms.  I've had the  surges of anxiety. For me, it is from the Lyme . a three months treatment of doxy at a high dose, helped get rid of it.  I do get surges once in a while.  I tell myself it will pass and it always does. 

Good luck in your search.  I know how difficult, frustrating and confusing it can all be.  Keep us posted.

Ilene

[Cindy]

Hi Heather:

Welcome to this amazing group. My name is Cindy Im 28 have 2 kids and Im still undiagnosed because the only way to confirm is a lip biopsy that Im not willing to do just yet. My syptoms stared with joint pain. I had all kinds of test done and everything has been negative. My joint pain comes and goes. It seems that my pain is increasing with each flare. My joint pain last for 6-8 weeks and once the flair is gone I have joint pain from time to time but not as bad. My eyes dryness stared 2 years ago and my neorological symptoms stared in February of this year. All my sysptoms come and go in severity. Enough about me. I really hope you are having a flair and your symptoms are more managable. We are so young to be dealing with sjogrens.

[Seeker]

Howdy HeatherS,  and welcome.  Are you a hypochondriac? If you are, then most every one on the forum is.  I am so happy you have joined the club.   Do not be discouraged.  Sometimes it takes awhile before you get a definitive diagnosis.  The trick is being persistent.   

I totally agree with Joe.  Have an advocate with you, armed  with a list of questions. Again be persistent.   I hope you will find your answers soon.  Welcome again.

Seeker

[sktaylor]

Welcome Heather. I can sympathize with what you are going through. Just know that people at this forum know there stuff and can help you a lot with questions.

Thoughts and prayers.

[Jennyfoo]

Howdy! I'm new too & wanted to say "hi."

Hypochondriac? I tell ya, even with visible damage to my joints on X-ray, after searching for a few years for an answer to my bouts of chronic fatigue & joint pain, I still doubted my AS diagnosis... Until I developed some nasty complications like eye inflammation that hurt like crazy & could cause blindness, & an enlarged aorta. Scary & textbook complications.

Now I don't worry that I am a hypochondriac any more, I just wonder if all my Facebook "friends" who don't know me well think I must be crazy or a hypochondriac. I'm amazed that so many things can possibly  be wrong with me, so I'm sure they are too. I know that my jerk of a father, who lives across the country from me, doubted me: thought I was a hypochondriac; thought I was making myself sick because I am overweight...until my younger, very thin sister was diagnosed with the same autoimmune disease.

Just remember these wise words from Dr Seuss:
"Be who you are and say what you feel, because those who mind don't matter and those who matter don't mind."

[drylady]

Hi Heather,

My anxiety level has worsened with Sjogren's. I also have experienced bad insomnia which was treated effectively but since starting new med has returned. I don't know exactly what you mean by adrenaline but I have fell asleep only to wake up soon after completely awake and  kinda hyper if that makes any sense. After that I usually can't go back to sleep.

I have been on Plaquenil for a couple of years this July and that definitely has helped me with dryness and inflammation. That's interesting what you mentioned about Sjogren's maybe affecting the adrenals. I didn't know they are exocrine glands.