Help....this is new!

[rondoo]

I was just diagnosed with Sjogrens.  Salivary gland biopsy abnormal but antibodies negative.  I have been complaining for years of fatigue. My history is Hashimotos's and Thyroid cancer.  I have had increasing and horrible fatigue for the past couple years as well as shortness of breath with activity and at times at rest.  I have not started any medication yet.  The rheumatologist wants me to have a sleep study done first.  I also have constant muscle pain, depression and anxiety but the fatigue is by far the worst.  I had an abnormal MRI of brain which showed white matter lesions and saw neurologist to rule out MS which he did.  Also Serum IgA is extremely elevated.  I am not living a normal life right now by any means.  Is it possible that this fatigue....which I would call exhaustion...is from Sjogrens?  Sometimes just holding my arms up to do my hair seems too much.  I also cannot tolerate the heat at all.  I feel like I am suffocating and dizzy in warm weather.  I realize there could be a crossover of symptoms because of my thyroid issues.  I also wake up every night short of breath.  I have pulmonary function tests scheduled in a couple weeks.  Does this sound familiar to anybody?  I am scared and disgusted!

[tamaran17]

Rondoo,
i'm new at this too so sadly i have no advice but hope your feeling better soon!

[Tantalus]

I totally understand that you are scared!  I had Hashimoto's diagnosed  twenty seven years ago and the fatigue and brain fog were horrible.  Three years ago, my fatigue and fog were so similar that I was convinced my thyroid meds needed to be adjusted.  Diagnosed with SS about two years ago, maybe a little longer than that.

You don't mention being on any meds for SS yet.  Many of us find that we actually feel better once we are on them for a while. I take generic plaquenil, generic relafen, restasis, generic cevimaline and feel MUCH better than I did two years ago.  Not everybody can take all of the various meds or have positive results from them but I would say most of us believe they are worth a try. OTC eye drops, mouth sprays, special OTC toothpastes all can be very helpful as well.

Some people here also report similar findings on brain images, also lung issues and heat intolerance.

So take care of yourself, allow yourself to rest a little more often if you can, focus on staying calm.  People will post lots of strategies for you in the next couple of days.

Also, it is very important that you have a dentist who knows about SS and can help prevent dental problems as much as possible.

[Tantalus]

Oh yeah, and also an ophthalmologist with experience with SS is invaluable as well.

[Carolina]

Dear rondoo


I have two autoimmune conditions and have just been diagnosed with an Immune Deficiency. Talk about irony. I don't have enough immune factors (deficiency) but the ones I DO have attack my own body (auto immune conditions).

Autoimmune conditions all have several co-conditions in common.

They are often very difficult to diagnose.

They are not well understood by the medical and research professionals.

Most don't have medications, procedures or treatments that address the causes because the causes are not well understood, nor are ways to address the causes.

Extreme fatigue, pain, and depression are CO-CONDITIONS of most auto-immune problems. All of those conditions can be addressed with medications, life style changes, and other coping mechanisms.

Autoimmune conditions often overlap, and more than one condition may occur.

Autoimmune conditions cannot be cured, and they do not go away, although there can be periods of remission, when the condition isn't actively attacking your system. I have known some people who have very busy productive lives with autoimmune conditions, usually they have long periods of remission. I have known others who have never had remission.

There is a long process of accepting an autoimmune condition, rondoo. There is grieving and denial, anger and frustration. This comes and goes in waves, and varies with many factors.

It is important to find medical professionals that you feel comfortable with.

Unfortunately, medical services are very specialized in our country, and the costs are very high.

Most of us have many professionals that we visit at some time or another, depending on what parts of our body are affected by the autoimmune condition(s) we have.

Most medications that alleviate symptoms carry some side effects, so a balancing process is always at play.

A medication that helps one person may do nothing for another, and be harmful to yet a third.

Some of us have become allergic to medications over time, as well.

This is the new normal. And it is a normal that changes.

You will find support and information from others with your condition(s). Seek out several groups on line and find the ones that give you what you need.

I wouldn't wish AI (autoimmune) conditions on anyone, but I have a very good life, and offer support and information to others when I can.

Most of us list our diagnoses (DX) and our medications (RX) and supplements/treatments/procedures that help us deal with all of the co-conditions of Sjogren's or whatever else we have, in our signature line.  This helps us know what has been tried already or is being tried to deal with problems.

Hugs

Elaine

[tmarie0183]

I too have white matter lesions on my brain, and have had MS ruled out multiple times, but still always that possibility lingering in the back of my mind.  I also have Hashimoto's.  What tests have they done to rule out MS?? I am an RN who works with an MS specialist.

[Joe S.]

Welcome Rondoo,

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.

[finallyadx]

Hi, so sorry to hear that you are feeling so badly. 

You will find this forum to be so very helpful and informative.

Everyone will offer advice and you can pick and choose what you think may work for you.

As another posted, is there a reason why you are not on any medications yet for sjs?  Is it postponed until you have the sleep study?

I was diagnosed in Jan of this year and placed on a short dose of prednisone (do not recommend for anyone faint at heart) - it took allot of getting used to and I had many of the side effects that are often mentioned, but it did get me "feeling better" than I had and while I was on the short dose, my rheumy started me on plaquenil as well - and since this takes 3-6 months to even a year in some folks, it has recently started to make a difference in my fatigue (which was debilitating), my brain fog (which was horrible) and my aches and pains (which were near unbearable).  I still have bad days but I have some good days now too, which for the past year and a half I had been having all bad days. 

Medications are not for everyone as you will hear - some folks choose to go the natural route and try herbs and supplements and some have good luck with them, but be certain to check with your dr before starting any natural or homeopathic remedies as they can sometimes make symptoms worse. 

Have the tests that they are recommending and know that you can try medications in the future to see what may work for you and what may not.  As another posted stated, not all meds work for everyone and some do not go well with some people - it is a trial and error and NOTHING has been developed yet that "cures" sjs but there are things that can help calm the situation some.

I have white matter on my MRI as well and went through all of the MS tests with an inconclusive finding of "we do not THINK you have MS", we know you have sjs...it is a wait and see game sometimes.

Half the battle for me was finding a diagnosis - I was more miserable (emotional and anxiety-ridden) without a diagnosis then I am now at least knowing what I have and what I have to deal with.

Hang in there - try to get rest when you can and continue to come back to the forum.  Take care.

[irish]

Yes, Autoimmune disease can cause intense fatigue, but you have made two statements that sent up a signal for me. The statement "hardly lift up my arms" and trouble breathing at night" makes me think that you should be checked out for Myasthenia gravis. This is a neurological autoimimune disease that is more common than one would think. It is also one of the earliest autoimmune neurological diseases to be identified.

I have had weakness and fatigue and many, many other symptoms since around 20 years of age baack in the early 60's and I was not diagnosed with Sjogrens until 2003 at age 60 and 3 years alter I was diagnosed with myasthenia gravis and Hashimotos. I have had thyroid issues since 1989 treated with medication but no one ever checked me for Hashimotos. Hashimotos accompanies many, many autoimmune diseases including sjogrens ad myasthenia gravis.

Do you have any drooping of your eyelids? Do you rest and recover some of your energy? Can you blow up a balloon or do you swallow and food goes into your nose??? THese are a couple of things that also send up flags regarding MG. I am a nurse and I always had a heck of a time doing CPR and passing cause I couldn't maintain lip control and blowing in order to blow up "Annie".This would come and go and I never, ever thought of MG.

I would ask your neuro to do acetylcholine levels and anti striated muscle antibodies.s Many times they want to do the EMG or muscle tests. It is very common to have normal EMG's so I think it is a waste of money. The only negative I had was the anatistriated muscle antibodies, but my eyelids drooped, I swallowed and some food went up into my nose, I could not blow up a balloon and I talked like I was in a barrel. The relaxation of the muscles in the nasopharynx cause weakness that interfere with all these functions.

Not everyone has every symptom and one can have MG without any positive bloodwork. I  am on IVIG, prednisone and Mestinon for my MG. I also take Plaquenil for my Sjogrens. I hoepo you find some answers. Irish

[rondoo]

I too have white matter lesions on my brain, and have had MS ruled out multiple times, but still always that possibility lingering in the back of my mind.  I also have Hashimoto's.  What tests have they done to rule out MS?? I am an RN who works with an MS specialist.

i 


Thank you for the reply.  I have had a lot of bloodwork and nerve conduction studies.  Neurologist said the lesions do not fit the pattern of MS.  The neurologist I see is an MS specialist from a University Hospital so I am hoping he is correct.  This is just so frustrating.  It is hard to explain to people why you feel so awful. Fatigue is my far worst symptom. 

[tomsmom]

Hi rondoo,
So sorry to read of your troubles.  I want to second Irish's advice to be evaluated for Myasthenia Gravis.  Many of the symptoms you described such as shortness of breath during activity/inactivity and fatigue in your limbs (arms while doing your hair) are familiar.  I also have unpredictable and unholy bodily fatigue that can ease up after resting a bit. I had a negative EMG but my right eye has extreme muscle weakness and I have intermittent issues with double vision.
A few months ago, I was diagnosed with MG in addition to Sjogren's Syndrome which I was diagnosed with 4 years ago. I also have Graves Disease (currently in remission)
It wouldn't hurt to make sure you don't have it as there are precautions one must take if you do indeed have it.  It's pretty common to have more than one Autoimmune disease.
Take care of yourself.