Help from a newbie

[Judes]

Hi veryone, thank you for letting me join. I have been doing so much reading here and learning so much. I have so many of the problems a lot of you have it was a rapid progression over the last few weeks. I went to my primary doctor a couple weeks ago and told her all my symptoms and told her I?m pretty sure I had Sj?gren?s syndrome after doing some research. My tongue is white and on fire my corneas hurt so bad dry everywhere hair thinning the works. I have tingling nerve pain, pain behind eyes and a severe shooting nerve pain down the left side of my neck that can be triggered just by touching my scalp she ordered blood test told me I didn?t have thrush but would refer me to a rheumatologist and order a blood test. The antibodies came back negative. But my symptoms have gotten progressively worse since then. My tear and saliva glands are constantly throbbing and pains everywhere. So here is my question, I can?t get an appointment with the rheumatologist for almost 3 months! I do have an annual scheduled appt with my thyroid dr tomorrow though who has been monitoring me for thyroid nodules. Would an Endocronologist know about Sjogrens and be able to help me? Or can I go to the emergency room with these symptoms for help? I seriously feel like I?m dying I?ve lost 10 pounds in the last week and haven?t slept a wink since then either. I need some relief of any kind and not sure what to do. Thanks so much.

[Kristian]

An endocrinologist can help a lot with your thyroid and getting your body chemistry sorted, but you absolutely need a good rheumatologist for Sjogren's.  It is not the easiest disease to treat and I will say that finding a good rheumatologist (took three tries) made a world of difference in my quality of life.  Went from daily migraines and so dry i had to peel my eyes open in the morning and could not eat normally because of choking from dryness to a much more normal quality of life.

Hope you find some good care it is worth putting the effort in.

I recommend booking multiple Rheumatologists at the same time and then sticking with the one you like, that way you'll be feeling better quicker versus waiting a year for appointments.

Good luck to you, it does get better

[finallyadx]

Hello and welcome.  So sorry you had to find us but glad you did - you will find the members of this forum informative, kind and supportive.

Until you are able to see the rheumatologist, there are over the counter medications you can take...you can use over the counter eye drops to help moisten your eyes, there are many different brands - this make take some of the burning sensation away or lessen it some anyway.  There are also several over the counter mouth sprays (biotene for one) that can help offer some moisture to your mouth. 

Once you see the rheumatologist if you are diagnosed with sjogrens, there are prescription options available for help with managing the symptoms.  I take plaquenil daily.  I also use evoxac for dry mouth.  I use biotene dry mouth spray and I, on occasion use over the counter eye drops.

I hope you can find some relief in the meantime with your endocrinologist.

Keep us posted.

Sending positive thoughts and prayers your way.

[Skylar]

I need some relief of any kind and not sure what to do. Thanks so much.

Hi Judes.

There is no magic bullet or pill that will make it all go away leaving you feel normal like you were in the past. I mention this because I know you're anxious to see a rheumy and get treated. A lot of what you will find yourself doing is managing various health issues as best you can with a mix of prescription medication, over the counter medication, changes in your routine  etc .

For example, with my dry eyes I do take a prescription Restasis, but I also use Refresh wetting drops in the single use vials that have no preservative multiple times through the day and night. And if I'm someone where it's particularly dry, I'll put a damp wash cloth over my eyes while I sleep. Plan to experiment to see what works best for you - that includes try different brands of eye drops - some will feel more comfortable than others.

I highly recommend using the search button here to research each of your symptoms - look for posts where people asked what products or techniques do they use. For your symptoms that you can't find - make new posts asking for help with specific problems and you'll get helpful responses.

Hopefully you can get some relief soon.

[Judes]

Thank you all for the kind and helpful responses. I appreciate it so much. I saw my thyroid dr and he checked my thyroid and said it was fine and nothing he could do for me. said to see rheumatologist as I expected. I can not get in there till the end of September that scares me I?m not sure I can make it that long. I called my primary doc and asked if there is any other rheumatologist I can see or a hospital I could go to. They got angry at me and said the dr would have to call me back and couldn?t talk to me!

I feel so desperate as I literally have not slept in over 5 days as my throat sticks together every time I try and I start gagging. Now I have bad pain in my mid back, and it?s getting worse. Artificial saliva, tears xylitol melts don?t seem to touch it.

My uestion is if I am at this level of dryness now will this be the level I will always be at? Is the gland function irreversible? Or can it improve with treatment? Thank you all for listening I?m feeling scared, this came on in the matter of less than 3 weeks. I believe it started when my sister passed away and I cried so hard for so many days. Although looking back my nerve problems have been present and issues with swollen glands for a long time. Thank you all for listening to me, I know you probably hear similar stories all the time, it?s just nice I can share them with others who understand. My doctor sure doesn?t seem to

[Skylar]

Thank you all for the kind and helpful responses. I appreciate it so much. I saw my thyroid dr and he checked my thyroid and said it was fine and nothing he could do for me. said to see rheumatologist as I expected. I can not get in there till the end of September that scares me I?m not sure I can make it that long. I called my primary doc and asked if there is any other rheumatologist I can see or a hospital I could go to. They got angry at me and said the dr would have to call me back and couldn?t talk to me!

I feel so desperate as I literally have not slept in over 5 days as my throat sticks together every time I try and I start gagging. Now I have bad pain in my mid back, and it?s getting worse. Artificial saliva, tears xylitol melts don?t seem to touch it.

My uestion is if I am at this level of dryness now will this be the level I will always be at? Is the gland function irreversible? Or can it improve with treatment? Thank you all for listening I?m feeling scared, this came on in the matter of less than 3 weeks. I believe it started when my sister passed away and I cried so hard for so many days. Although looking back my nerve problems have been present and issues with swollen glands for a long time. Thank you all for listening to me, I know you probably hear similar stories all the time, it?s just nice I can share them with others who understand. My doctor sure doesn?t seem to

I'm afraid you are going to have to develop your patience- patience waiting for doctor's appointments, patience waiting for treatments to work and patience with your self. When you have Autoimmune Disease, you need patience. And you need patience in dealing with the loss of your sister which is a very traumatic event - I'm sorry for your loss.

This illness waxes and wanes - we get flares and it sounds like you are in a bad flare - and then things settle down to a new normal. We never know what will happen. I'm guessing that you are probably under terrible stress and have a lot of inflammation right now that is making things much worse.

In the meantime I stress, trying everything you can to address all your problems. Keep sipping water, chew sugar free gum and eventually things will get better.

The reality is you and I and everyone here on this forum will never be normal - we will always have that dryness. But it will get better slowly and you will learn to adjust to it.

Your PCP won't want to treat you for Autoimmune Disease because that is the job of your rheumatologist. Same as you found out with your Endocrinologist. But you clearly are under a lot of stress from the loss of your sister - perhaps your PCP can prescribe something to help settle you from the loss of your sister.

[Pete0211]

Hi Judes,

I was in a similar situation two years ago as you are now - it seemed to have hit suddenly, couldn't sleep, couldn't eat due the dryness for about 10 days. During that time I went to the ER and my primary care doc regularly (at least three times to the ER). None of the OTC options provided much relief - the best thing was the gels, but I was going through 3-4 tubes a day, and they didn't help when it came to trying to sleep.

What turned the tide for me was an ER visit that produced a diagnosis suspicion of Sjogren's, and a big injection of corticosteroids. I got about 90 minutes of sleep that night, and it was awesome. It wasn't a cure-all, as it took months to get back to 'normal', but it does happen.

I also had the same problem with the initial referral to a rheumatologist being months out - my primary care physician started calling around and was able to get an earlier appt (still several weeks ahead, but sooner than months), though I had to travel across state for the appointment). My primary care physician was highly involved through this whole ordeal, and has prescribed pilocarpine to help with the dryness symptoms, and gave me a follow up shot of steroids before my rheumy appointment.

You're going to need a good primary care physician that listens and works with you - maybe it's time to switch. You don't need a rheumy to start treating the symptoms, and this starts with your PCP.

Going to the ER might or might not help. It took several trips for me before I was able to get any type of help, and it could be more or less for you. It does involve a lot of time and money to do this, but there's only so much your body can handle without sleep / food.

If your PCP cannot/willnot/just plain old fails to obtain an earlier rheumy appointment, try to do so yourself. If you have any medical universities in the area, give them a try. Look in nearby cities, and even across state lines if need be. Again, it might be expensive, and you have to balance that.

[warmwaters]

My sense of how ERs work is that it's probably not the right place to go if you are suspecting autoimmune disease. ERs are really set up for "happening right now" emergencies - broken leg, dehydration, heart attack. Something where an intervention is needed immediately. They are not well setup for more detailed diagnosis of long term chronic disease.

Discuss with your PCP if s/he would consider a "burst" treatment with prednisone. This is usually a 1 week high does (amount varies based on several criteria) that may reduce inflammation, which may be the cause of your symptoms. If it indeed does help, it's another piece of evidence in the diagnostic puzzle. Read the side effects of prednisone - most of them occur with longer use, but it is good to understand what you are doing. Unfortunately, for some prednisone makes them "buzzed", so it may not help with your sleep issues.

[Judes]

Hi and once again thank you for all the great advice. I became so ill, desperate and scared and after my doc basically told me she couldn?t help me and refused to find another rheum apt for me and the rheumatologist she referred me to told me she couldn?t get me in before the three month appt. I went to the ER of our community hospital. I was so terrified I felt it my only recourse.

I can?t say it has alleviated my symptoms or fears all that much but maybe provided me some useful info I will need in my future journey in this crazy nightmare. My biggest concern is how rapid this occurred for me. 

In three weeks time I went from what I thought was a healthy 52 yo female to a dried up withering prune, literally before my eyes. In three weeks time I can?t produce any tear in left eye and barely moist in right eye, and no saliva of any kind to where my throat sticks shut if I don?t keep sipping water. Hair falling out and so dry you can hear it snap. Nails flaking off and skin shriveling. Not to mention all the nerve and joint pains. I guess I don?t have to tell anyone here how scary that is

Any way the 1st ER physician was super nice. After telling her my symptoms she immediately said you most likely have Sjogrens. Wow she knew what it was! (I had to tell my own dr what I thought it was and she acted like she never heard of it!) She explained it briefly to me and saw how terrified I was and told me it can be managed and not to  despair, and that it can go into remission. She told me she herself has several patients with Sjogrens!

So they did blood work and it came back negative for antibodies again. She explained that I needed to see a rheumy because they have to do a lot of tests and fancier blood work. Of course after hanging here I kind of knew that but it was good hearing it from a doctor.

I told her about my inability to swallow and constant pain in left neck and my now 15 lb weight loss in 2 weeks and the throbbing pain in my left mid back. Those things were scaring me the most. She said sometimes Sjogrens can effect esophagus and other things so she sent me for cat scan on throat and abdomen.

During the iodine injection for throat scan I learned that radioactive iodine creates a rush of saliva in your mouth! Omg it was wonderful, it made me feel I still might have some functioning gland tissue made me hopeful. The cat scans only showed an inflamed spleen, part of the immune system so I guess it makes sense.

Then the doctor told me there are no attending rheumys at the hospital, but she could have the GI docs do a scope of my esophagus and try to go that route and they admitted me to hospital for observation until the scope in the morning. My first time ever in a hospital. Cont. below

[Judes]

Continued...

They give me nystatin rinse for my disgusting tongue. You know it is really freaky to stick your tongue out and see that it is whiter than your eyes! Then they gave me a Xanax which I havet never had before. It did help calm me. They did that because I told them my symptoms seemed to start with my sisters passing.

Of course I?m telling this to the nurses and practitioners now that the awesome Er doc is gone, to my misfortune! Well I think after me telling them that they got the idea that I was in such an emotional state that it was in my own head causing my problems! Well the Xanax relaxed me a little but I still couldn?t sleep because of dry throat!

The hardest part was they said no water after midnight because of the scope, that set me into panic! Somehow I toughed it out till 10 am when they came to get me. (I did cheat by wetting my mouth in the bathroom every hour and dragging my iv in there with me.)

When they were preparing me I told the anesthesiologist I?d give him $100 for an ice chip! Then I apologized for my disgusting mouth and told them to double up on the lube cause that tube might not get down there! They must have too, because afterwards I felt a soothing coating in my throat! Also was the first time I had more than 10 mins sleep in over a week! It was only 20 but I?ll take it!

Well it turned out they did a biopsy for suspected EOE on my esophagus. I was told it?s an inflammatory immune condition in esophagus. The biopsy results aren?t back yet but that might explain some of my pain.
I am glad I had this procedure done, in spite of me complaining of neck pain for a few years, my doctor never ordered one for me. My sister died of esophageal cancer

Well after all that they said they were dismissing me. At least 6 Of the doctors I told my symptoms to while there all told me I most likely had Sjogrens. Said they are a community hospital and not equipped to deal with what I have. Said I should try to call different rheumatologists to get a quicker apt. All said 3 months is ridiculous and try to get in sooner.

I begged for a shot of steroids (thanks for giving me the idea Pete) but they wouldn?t do it. Told me it would mask a diagnosis down the road. So they sent me home with a clean bill to return to work (still don?t know how I can manage that) with virtually no relief for symptoms! They wouldn?t even prescribe more nystatin for my tongue Only a prescription for omeprazole for heart burn. So warmwater you were correct in your assessment about community hospitals not able to treat this systemic disease

In the end I?m glad I went. I got to talk to a compassionate doctor who knew this disease. One gave me a phone number of another rheumatologist to call. And the three treatments for my tongue they gave me in the hospital helped tremendously! It wasn?t enough to take care of it completely so I desperately need more. I have a couple of important tests out of the way too.

And best of all my hubby took the phone number they gave us and was able to get me an apt with this other rheumatologist on Monday!! Now I just need to find a new primary care physician and am afraid none will want to take me on with what?s facing me. And I still don?t know how to return to my high stress job feeling this way, I?ve missed 7 days of work so far. My doctor will never approve short term sick leave for me she thinks I?m making it up and just being a baby! She wouldn?t even call me back when I called her office asking for help I was so sick! Oh well as you all said I must learn patience, it?s hard but I?m trying.

Sorry so long I just wanted to leave my story for the next person who finds themselves in this situation. And to thank you all for your help and wealth of knowledge here. I appreciate all your kindness and wisdom xo

[Deb 27]

Judes, I am sorry you went through all this. It's a very tough way to learn that we have to advocate for ourselves. I am glad you went to the ER and got things started. Auto immune diseases are difficult and you need a good support system with a good PCP and rheumatologist. It can take some trial and error and sometimes a lot of frustration!!!!  There are a lot of us who are seronegative here, that means we don't have the antibodies for Sjogrens.  I had to get a lip biopsy and that was positive. Good luck and keep us posted.