Recent diagnosis, worry, pain

[gmpurple]

I?ve been having various symptoms for over a year.  After many specialists and tests, 1 month ago bloodwork and a lip biopsy showed I have primary Sjogrens.  I was relieved to finally have a diagnosis but now I?m questioning if my symptoms are from Sjogrens or something else.  Like many of you I?m sick of googling things and glad that I found this forum.  I?d like to share what my symptoms are and see if anyone else has had a similar experience.  I?m really just looking for someone to talk to because my family hasn?t been giving me the support I need. 

So here are my symptoms:
If I drink any alcohol I feel very nauseous and foggy the next day (I used to be able to have a few drinks each night with no trouble).  Most days I?m tired a few hours after waking up.  I lost 10 pounds, and I can?t seem to gain weight.  I should be gaining based on how much I eat. I have a burning/tingling sensation in my throat that radiates to my lower jaw and down to my chest, worse on days I?ve exercised.  This started around the same time that I had a herniated cervical disc.  A few months later I started feeling/hearing a clicking periodically on dry swallows, worse in the morning.  Around this time I started getting bad pains throughout my neck, left upper chest/shoulder/back and face.  By the end of the day it feels like someone is sitting on my chest. I have hard lymph nodes on the side and back of my neck that have been there well over a month. It hurts my throat to yell or sing. Sometimes it feels like someone has their fingers around my neck, cutting off flow to my head. Lately I?ve been getting numbness and tingling in my feet, hands and face. For 2 months I get pains in my abdomen near my lowest left rib, worse when I?ve sat in the car for a while.  Yesterday my whole left hip started hurting out of nowhere, to the point it woke me up last night.

I?ve had a neck CT, abdomen CT, endoscopy, swallow fluoroscopy, among many other tests, all normal. I?ve been on Cevimeline and Plaquenil for 3 weeks.  I?m hoping the Plaquenil kicks in and I get some relief.  I?m constantly worried that I have lymphoma or some other type of cancer that has been overlooked.  I just find it so hard to believe that all of these symptoms could be attributed to Sjogrens. I desperately want to get my life back and stop worrying about this. 

[Flower_medicine]

A lot of what you describe is what Sjogtrens does to our bodies.Everyone is different.I thought I was having strokes because my face and to gue would randomly go numb.I too have terrible unexplained aches and sometimes severe pain.His,hands,neck,stomach,and always feeling like I have the flu.Or just getting over it.Just know you are OK.Get the things checked liuje your glands.Thenb try and restveasy knoiknoiwing this is a
Journey.I find the less I worry the better I feel.

[Carolina]

Hi gmpurple and flower,

Each of us with Immune Disorders experiences differences, because we are each different.  But when many of us are considered in larger groups, there are similarities.

With Sjogren's Disease, the majority of those never have serious symptoms.  In fact Sjogren's sometimes turns as a diagnosis for someone who has NO IDEA they have Sjogren's.   I know that seems impossible.  When a large group of Japanese elderly with Peripheral Neuropathy were tested, many had Sjogren's and had no idea.  They thought their dryness was 'just one of those things'.

But most of us here have more issues with our Immune Disorders, to say the least.

First, as Joe S. would say, 'keep breathing'.  Relax.  Share, share share.  We are here for you.

Keep posting. 

WELCOME

Hugs, Elaine

[Navigator]

Definitely the random pain and tingling of extremities were things I had before starting treatment.  Give the Plaquenil time.

[cccourt1942]

From year to year, month to month, I continue to be amazed at the ravages of Sjogren's.  I could not have made it during the first few years after my dx w'out this site.  So gmpurple:  wc

I will speak to concerns I have experienced and let others address more fully on conditions they suffer alongside you.

...I was relieved to finally have a diagnosis but now I?m questioning if my symptoms are from Sjogrens or something else.

This is the number reason to keep reading posts (and former posts) on this site.  These questions/thoughts/and at times-answers have most often been discussed before.  Personally, I was old upon dx...and I believed I had old age stuff and then the classic sjs stuff was due to that.  Many on this site believe it's all connected.  Who knows?  It really makes no difference.  Why?  You need a different specialist for every part of your body affected by SjS or whatever.  The rheumy won't know about your parotids, or the pain in your side, or the condition of your eyes, etc.


...because my family hasn?t been giving me the support I need.    Welcome to the club. 


If I drink any alcohol...
I gave up alcohol in my 40s.  About 65 I began to have a glass of champagne, or a margarita perhaps as often as once a week.  When my dryness ramped up..I was about 68, alcohol was the first substance to dry my mouth out so badly it wasn't worth it.

...I lost 10 pounds, and I can?t seem to gain weight.  I should be gaining based on how much I eat.

I had burning tongue along with parotid sialadenitis for 2 and 5 years respectively  prior to my dx.  The tongue alone kept me from eating almost everything.  I lost about 35 pounds in 2 years--and I was eating anything soft, cool, fattening & kept losing.  Also the sialadenitis would put me on water consumption only until I could get to a dr/Rx.


... This started around the same time that I had a herniated cervical disc. 

When I went thru my herniations (and subsequent surgery) the neurosurgeons said there had to have been an accident or trauma.  I denied...and then later did recall something from early in my life...which they grabbed onto as etiology.  The point is, unless your discs are deteriorating due to old age, your disc(s) problem has likely been with you some time.  Just now bothering you.  I was younger, about 50, when I had my fusions.  It scared me to death but I could no longer function.  I went back to work full time two weeks later.  They just slit my throat (no joke) and fused 3, 4, 5.  No biggie but my fear.  Really. I am just saying that as surgery has improved so much in 25 years.

... I have hard lymph nodes on the side and back of my neck that have been there well over a month. It hurts my throat to yell or sing.

My parotids were firm when I had infections.  It didn't last as long as a month.  I almost always had an infection. My ability to even hum hurt me before my dx.

...pains near my lowest left rib

I am NOT dxing you: When I have this pain, it was dxed as costochondritis.  Worse pain than the sialadenitis.  It comes and goes.  I carry an Rx with a massive prednisone burst for treating it..but if the pain gets too bad--nothing for me to do but go to the ER for pain injection.  THEN...I start on the prednisone. Massive amount (to me at least).

... I?m constantly worried that I have lymphoma

I obsessed over this for months after initial dx.  Let your doctor know your concern. 

Also, I saw you have said you have epilepsy.  I was dxed with this after my SjS.  Was assured they don't go together.  This dx truly freaked me out.  In fact, on this board (when I was expressing my fears) I was asked not to mix up non SjS conditions with non SjS conditions.  I don't discuss those concerns here due to that direction.

Hope I answered some questions.  I urge you to use the Search box on this site.  You will learn so much...and tho some is scary, nothing is as scary as I have had in my own mind...all by myself. 
Good luck,
Sjoldier c3

[Deb 27]

empurple, welcome to the site. Sorry you have Sjogrens. You can have so many symptoms with this disease, you can feel like a hypochondriac. I have fibromyalgia with the SJS and have also had costochondritis. At that time, I went to the ER b/c I had chest pain with mine. Thought it was a heart attack. It took me a long time to get diagnosed and at first they thought it was RA. I've been through the ringer, that's for sure.  One thing, I truly believe is that nobody understands and gets this disease except for those who have it. Friends, family etc are not going to get it. I hope you have a good Rheumy who listens to you and gives you quality time. That's important.
It takes plaquenil a few months to kick in...........
I went through a phase that I got really scared about the lymphoma thing. All you can do is get tested every year and if anything strange comes up, go to the Dr. My doctor does some blood work and urine tests to check for lymphoma yearly.
Try not to think the worst. There's only something like a 5% chance of lymphoma. Worry steals from today and you can't get it back.

[gmpurple]

I want to sincerely thank all of you for your support.  It's so nice to know that other people understand what I'm going through.  I cried when Elaine signed her post "hugs" because all I want is more hugs from people to tell me it will be okay.  Most days I'm so discouraged.  Yesterday my new GP said that she doesn't think Sjogrens is that bad and that I should only have dry eyes and mouth.  How do I tell a doctor that she needs to learn about this?  She thinks I'm just stressed out.

It seems like one day my neck pain will be better but then I'll get nauseous and have no appetite for a few days.  Then that gets better and something else goes wrong.  I just can't seem to keep up with it all.  All I want is to be able to enjoy life with my husband and 2 kids and this disease or whatever is wrong with me is getting in the way.  I feel like if I knew for sure this was Sjogrens and I knew what to expect as far as pain or discomfort, I would be able to handle this.  It's so hard when the symptoms keep changing, when doctors contradict each other and can't seem to tell me exactly what's happening in my body.  I guess I'll just keep waiting and hoping that the Plaquenil helps.

But again, thank you all for your kind support.

[SjoGirl]

gmpurple, I felt much the same why when I first developed SjS. I could not believe how many things were wrong with me. I still remember standing in my kitchen and bawling, wondering why no one could figure out what is wrong with me. I was tested for MS, RA, and a wide range of other diseases and even had differing diagnoses about SJS (one doc said yes, Hopkins said Undifferentiated Connective Tissue Disease)

Your symptoms might not all be from SjS, though many could be. As you might note in reading profiles at the bottom of member pages many of us have multiple issues and complicated medical situations. That can make it difficult to determine what is causing what and how to treat things that are happening.

As another writer said, the chances of lymphoma exist, but are low compared to other diseases. At Hopkins they told me they sometimes don't even treat the lymphoma that people with SjS develop because it is tends to be very slow growing and as one is likely to live a long life with it and die from something else.

Hope this helps ease  your already burdened mind!

[gmpurple]

SjoGirl this helps ease my mind immensely. Thank you so much!

[Gorn]

It's really scary. Sometimes it seems like there is some new freaky symptom every day. 
I am pretty sure I have some neuropathy in my throat and I now have trouble swallowing. 
Isn't that fun?
Or maybe I just have a run of the mill throat infection that is taking longer than normal to clear up.
There is no way to know.

I am a recent diagnosis too, and I find it helps just to know what the heck is causing this.
It really helps that I can now tell people I'm not crazy (including doctors who poo - poohed my symptoms). 
And no, people, I am not just making this up.

I had to quit my job about year ago, then managed to find a less physically demanding job. 
I kinda think my relationship is about to blow up over this. I don't blame her.  She married someone with far more energy.
I just kinda thought she'd be there for me no matter what.

It's not easy.  No, it isn't.

[gmpurple]

Gorn I am so sorry to hear this has affected your personal and professional life.  It's so frustrating when health issues hold us back.  My husband and I have had problems because of this too.  I've found a lot of support and comfort by posting to this forum and searching, reading what others are going through.  It has made me feel like I'm not alone.  The more we know about this disease and the more we realize others are going through something similar, the more we will feel in control of our health. 

My most persistent and most troublesome symptom is throat pain and swallowing problems.  I've suspected I have some sort of neuropathy there too.  I've asked myself the same question about a throat infection, as well as many other questions.  I'm here if you want to talk about it some more. 

Thanks for sharing and I wish you luck!