Hello! 2 different diagnosis so far...most recent idea being 'early' Sjogrens?

[tuzi]

Hi there,

This is my first post, so thanks for having me here.  I don't know all that much about Sjogrens, but I'm trying to learn as I go.  Brief background; I went to two different rheumies who had opposing thoughts on a diagnosis.  One believed my issues were due to fibromyalgia and the other thought it was undifferentiated connective tissue disease.  After a month of physical therapy (which didn't help), they both wanted me to start on medication, however two different types.  I didn't know what to do and which one to listen to and had always heard that physicans at teaching hospitals were good, so I went to Dallas and saw a rheumy at UT Southwestern Medical...kind of for a tiebreaker.  She didn't agree with either of the specialists that I had already seen and after she ran her own tests, she felt like it was early Sjogrens.  But since my SSA and SSB were negative, she could not give me an actual diagnosis.

My symptoms are mainly fatigue, what feels like pain down into the bone in various areas (can't tell if it's muscular or joint, but muscle relaxers haven't helped so far), some memory loss, dry eyes/lips/skin/vagina/nasal passages/hair, occasional stomach issues, migraines/headaches, positive ANA (3 times positive; most recent was 1:2560), small rashes that come and go, and I might be missing something else :/  I recently went to get some dry eye tests done per the advice of the last rheumy and admittedly, I'm not sure if they're really indicative of anything.  The red phenol thread test results were: right eye 14mm/left eye 11 eye...doc said under 10mm is deficient, but my numbers were by no means normal and the tear break up test (BUT) were: right eye 5 sec/left eye 3 sec...said over 10 seconds is normal.

I guess I'm just wondering if I might be on the right track by looking into Sjogrens or could I be off yet again?  Right now I'm just treating my symptoms which is taking a daily anti-inflammatory and muscle relaxer, but to be honest I can't tell any difference when I take them.  Just curious if there might be something that I'm missing or on the flip side...could there be something to look for.  Thanks in advance for taking the time to read this.  Take care!
 

[Joe S.]

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.

[tuzi]

Thanks for responding and providing all of the good advice.  I'm not sure what is considered younger, but I am 37 and have been trying to figure this out for about a year and a half now.  I am already frustrated with the medical runaround so I can't imagine having to wait 6, 8, or 10 years as many have stated that it takes for something to 'show up'. 

The Spoon Theory link was a great read...thanks!  I have a difficult time explaining anything to people I know because I don't have a diagnosis so it just makes me feel whiny.  For the most part I just don't mention anything or what might be bothering me.  Oh well if I have aches and pains or I'm so tired I'd rather go to sleep then go out with friends.  I often ignore my issues with myself.  For instance, I'm always in pain but I want to exercise so I walk/jog at least 3 times a week even though I'm in worse pain during exercise and for days following it.  But I figure that pain is pain and I'll feel it regardless...what's the difference if it gets worse sometimes?  People say to take care of yourself, but how do you do that if nothing seems to help?  You're tired all the time, but you have insomnia.  They say to relax and  take it easy, but if you do have anxiety, work a stressful job, and need to get things done...I guess I just haven't figured these things out yet. 

I actually have that David Burns book (somewhere), but I'm a big procrastinator and never finished it.  And I do get infections/sick pretty frequently.   Well, what I consider more frequent than the average person...usually about every 2-3 months.  I tend to always be cold if I'm inside so I usually wear heavy pants and socks to bed or am covered with a blanket while just lounging around.

I'll try to up my supplements and vitamins.  I already take B vitamins and magnesium for my migraines, but I'm always up for more.  At my eye appt the doctor suggested omega 3 to see if that would help the dry eyes, if I didn't want to go the Restasis route. 

Is early Sjogrens a possibility that the doctor thinks that you might be developing it vs something else...or in addition to something else?  I find all of this a bit confusing.       

[artistangie]

up i the air isnt a nice place to be...i hope someone gives you answers soon!

[Nancy60]

Welcome to Sjogren's World!  Glad you found us, hopefully you will at least find others who understand what you are going through and some good advice.  From reading your post, you sound alot like how I started.  I was considered "younger" when I first went too, and didn't get a firm diagnosis for a couple of years.  I think early Sjogren's or undifferentiated connective tissue disease are both good possibilities.  I would question the Fibromyalgia diagnosis because my understanding is that a positive ANA is uncommon in Fibro, especially as high as yours.  Your ANA levels should lead the Rheumies to look at other autoimmune diagnoses like Sjogren's or Lupus or UCTD if not enough to make a firm diagnosis.  You  might ask about Plaquenil at your next visit as it can help with the fatigue, rashes, joint pain and might get the autoimmunity under better control to slow down progression.  I am in the Dallas area and UTSW Rheumies are top notch, so it was a good choice for another opinion.  You can message me if you have any questions about doctors etc in the Dallas area.  Hope you get on a treatment plan and start feeling better soon

Nancy

[slccom]

Fibro and Sjogren's are not mutually exclusive diagnoses. You can have both; in fact, the autoimmune diseases are very social and like to bring along their friends. 

Sharon

[tuzi]

Yes, it is a bit frustrating.  Not that I need a label, but I feel like if I had a diagnosis then I would feel more confident in which path to follow as far as medications, etc.  I have heard that fibro doesn't have to be exclusive, but my most recent rheumy did not feel as if I had it because of the combination of symptoms, lack of tender points, and the presence of such a high ANA and inflammation.  A different rheumy had also excluded it because of similar reasons, but I guess never say never.

So far the daily anti-inflammatory and muscle relaxer aren't making a difference for the pain so I'm thinking that just treating the symptoms (at least with these medications) might need some tweaking. 

Thank you all for your input.  It is most helpful to be able to hear the experiences of others and just the feeling of understanding...not having to hide things or feel embarrassed.

[mshistory]

Hi tuzi, and welcome! I have a very high ANA as well, and my rheumatologist still thinks I have fibromyalgia. Actually, a lot of people with connective tissue diseases have fibro as well.

I'm sorry - I'm not feeling well so I read rather quickly and may have missed this, but did your rheumy prescribe Plaquenil for you? That's usually the first option for treating any kind of CTD without major organ involvement. I was on it for a year, but it made my fatigue and IBS symptoms worse, and it MAY have caused leukopenia (I haven't gotten my most recent blood work back since being off of the Plaquenil for six weeks) - if so, those are really really rare side effects, and it's generally safe and well tolerated. It seems like most of the members here who are on it get some benefit to their fatigue and joint pain.

[Meld256]

Hello Tuzi,

Welcome to the forum!     I apologize I'm a little late in writing.

I'm sorry to hear you're having these symptoms, but you've come to the right place for some great information, understanding, friendship and a place where we all "get it."   

I understand totally about not needing a label, but a diagnosis would give you confidence to go forward with what types of medications and treatments that would help.  I know it's all rather confusing because so many autoimmune diseases are similar in how they present in each of us.

Your eye tests point to them being very dry; do they bother you? Restasis is a great med that helps produce more of your own tears, but as you say, the eye doc gave you another option to consider.  A good OTC lubricating drop would help, in addition.
Joint pain can be helped by some anti-inflammatories; I and others take Relafen, for example.  It doesn't take it all away but it really helps.  You may possibly need a stronger med than you're on now.

As said, Plaquenil can be a real help with fatigue and joint pain. Perhaps something to talk with the docs about.

I know what you mean about feeling you need to get things done.  Sometimes we really need to pace ourselves and look at the most important things and let some go undone or delegate to someone else.  If you have insomnia, like many of us, that may need addressed, too.

I hope you can speak with the doc at the next appt. and tell them all your concerns and try to start with a plan to help you begin feeling better.  There is hope!

Feel free to come here to ask anything at all; we'll try our best to help.  Again, welcome, and we hope to hear more from you.
Melinda

[Lela]

Hello, I am new also, to the forum but not to autoimmune diseases.  I on my 40th birthday with the diagnosis of Hashimoto's thyroiditis. With a TSH of 80 it took forever to feel almost normal again. At 50 was diagnosed with fibromyalgia. Terrible, terrible pain all over my body, even my breast hurt. I finally had to go out on retirement disability at the age of 55 because I could barely stay on my feet. I went from being a very active Nurse Practitioner to a person that many days was not sure I could possibly drive myself home because the pain was so bad, just turning the steering wheel was unbearable.

Since then I have been diagnosed with RA (Rheumatoid Arthritis and Sjogrens disease. The point I want to make is that the medical providers often do not know what we have. It can take years of suffering before many of the test can show up positive. I would say if you have problems with severe dryness in your eyes, nose, mouth and other areas, you probably have sjogrens. Just don't let the doctors drive you crazy. Listen to your body.

Sjogrens can cause many more problems besides dryness of your mouth, nose eyes, vagina. It can cause dryness that effects swallowing, digestion and food moving down the esophagus and esophagitis. Worse it can lead to asthma attacks, bronchitis and pneumonia if you get a cold or other virus.  Another side effect of sjogrens can be GI problems.

Hydroxychlorquin or Plaquenil, I feel, is a good drug to help control some autoimmune symptoms and help prevent worsening disease. I wish I had stayed on it when a very wish rheumatologist just looked at my hands and told me I would most likely develop other autoimmune diseases and started my on this Plaquenil. Not understanding at the time exactly why I should keep taking it I stopped it for about 5 years and was restarted on it about 10 years ago. The worse side effect is reversible eye disease, so you must have your eyes checked once a year. I am 64 and have macula degeneration but it has not changed so they keep allowing me to take it.

There are many immune suppressant medication that can make you feel much better but they all have their side effects, some very serious. I chose not to take methotrexate because every time my grand son got a little cold I ended up very sick or in the hospital. So I decided that it was more important to spend time with him then to take this medication.  If I really am having a bad period and have things I really want to do I will get a prescription for a short period just so I can feel better for a few weeks. Some people take prednisone all the time but it have very severe side effects but is worth it to some people just to survive.

I was lucky enough to find a rheumatologist that went by symptoms then rather then test results. I am not sure what they have in new testing but when I was being tested for sjogrens it could take up to 10 years for them to be positive. So if you have the symptoms this is probably the problem. The best thing you can do is listen to the people on this forum for suggestions on how to treat the symptoms. I use xylitol because it is one sugar they use in tooth paste that does not cause cavities.. they think it even prevents dental disease. Sugar is a no no for anyone with sjogrens because you can develope cavities very fast because you do not have the saliva protection on the teeth.  I have lost 5 teeth in the last year and I do everything I can to prevent dental disease, including brushing my teeth gently 6-7 times a day.. Oral Balance and Biotene offer products to brush and rinse teeth, and I like Oral Balance dry mouth moisturizer for night time. I also buy only xylitol sweetened gum I get off of Amazon or other sites that carry them. Try to avoid other sweeteners that use aspartame and other synthetic sweeteners. 

I am a lot older then you and have dealt with autoimmune diseases for 25 years, and I am still kicking, some days anyway.  It is important to exercise, enjoy your life, avoid stress, take vacations, be with your loved ones and laugh a lot. Other people have listed great supplements. Everyone is different and have different needs. Good nutrition is very important.. and a humidifier all the time in your bedroom. I use cool in the summer and warm in the winter... It will cut down on some of the mouth, nose and eye dryness and some of the headaches that can come with the dryness. They also have Xylimelt lozengers that you can suck on during the day to relieve the dryness..

Good luck. I hope everything turns out the best for you. If you need referrals for your area, I am sure one of use can help with that.. Lela