Newbie Intro and Some Questions

[Oriole Adams]

Hi all,
I was diagnosed with SLE (Lupus) back in 1989 and over the years my original rheumatologist also dx'd me with several collateral ailments, including vasculitis, antiphospholipid anitbody syndrome, Raynaud's syndrome and Sjogren's syndrome. That particular rheumy was a wonderful old man (he was in his 70s when I first started seeing him) and was extremely knowledgeable - on the advisory board for the Lupus Foundation, former teacher at Wayne State University, etc. Sadly, he passed away and I saw his associate for a few years, whom I liked and who took the time to listen and was very familiar with Dr. FirstRheumy's methods, but she moved out of state last year and this new guy I'm seeing leaves me underwhelmed. For example, during my first appointment with him he left the examining room five different times to answer a cell phone call. He also seems to dismiss a lot of my concerns, like I'm being a complainer if I start listing too many symptoms. Hard to explain, but I just don't feel like he's really hearing me when I talk.

The main reason I provided all this back story is that for many years my Sjogren's wasn't that bad; my main involvement was my nose/sinuses. Very, very dry, always getting a bad smell in my nose like burning plastic, and dried blood when I blew my nose. But that was my only Sjogren's complaint. (Other than very very dry, cracked lips year round.) Now, just in the last year or so I've noticed that my face is asymmetrical (it looks slightly swollen on the left side just in front/below the ear) but when palpated neither I nor the doctor "felt" anything underneath. However, my saliva has become noticeably thicker/stickier....I don't have trouble swallowing, but at night I drool for some reason and the saliva that gets on my pillowcase and the side of my face is very sticky/glue-y. I've had bouts of dry eye before, but recently I've experienced a new symptom with my eyes - at night, when watching TV they seem to tear more if I laugh a lot or yawn, and when I blink I get greasy/oily smears on my eyeglasses. It's like I'm producing thick, oily tears. Is this typical of "dry eye"?

The other new and strange symptom is that I've been experiencing severe tendonitis in both arms, something I've never had before. I'm no athlete, so it's not tennis elbow or anything like that. I've done some online research and it appears that tendonitis is not uncommon among Sjogren's patients....? Anyone else experience this. And lastly, I frequently experience a strange sensation on my left upper arm between the elbow and shoulder. The best way I can describe it is that it feels like I've bunched up a shirt sleeve in that spot. Could this be Sjogren's-related?

Sorr for the length of this post, but I'd love to hear from anyone who has experienced similar symptoms and how they were treated, etc.  Thanks!!

[Cheryl]

Oriole,
Welcome to our site! 

I'm so sorry that you lost the doctors who earned your confidence.  I hope the new one treats you with more respect on your next visit.

Tendonitis is common among us.   So is the puffy face.  Changes in consistency of saliva and tears happen, too.   I don't know why the drooling and extra tearing would occur, but they are probably precursors to more dryness.   

I hope that your symptoms never progress.   If they do, there are medications to help both with tear and saliva production.   Are you taking Plaquenil for the SLE/Sjogren's?  If not, you might want to look into that.   

Best wishes for good health!  I hope you find good information and friends here!

Cheryl

[Joe S.]

Welcome. I saw your post yesterday but other things came up and I lost track. I am sorry that happened. Some of us have posted what we are taking in our signature line. I can not take the traditional meds for this disease so I use a mix of alternative therapies.

[Bucky]

Hi Oriole - welcome to your new Sjoggie family.

It must be so frustrating to have had two really on-the-ball doctors and then have one who seems too distracted with other things during YOUR office visit.     If you don't feel this rheumy is giving you the attention or answers you need, I would look into someone else.  I know it's not always the easiest to do - especially when this doctor has all your past history in his files. 

If you don't already do this, it's in your best interest to get copies of your office visits and keep a file on yourself at home.  Communication between doctors isn't always the best - this way, you have your own copies.

There have been other posts on the forum about people smelling different smells - like things burning, etc.  If you do a search in the box in the top left of this screen it will take you to those posts.  I am very sensitive to smells - perfume, some food odors, etc.

I've had that 'feels like lead weights' on my arms before . . wasn't sure if this was from my former job (working in a kitchen) or SjS related.  Some times it just feels like I can't lift my arms over my head.  I use to sleep on my stomach with my arms up over my head . . . can't do that any more - it hurts. 

If you haven't seen an Ophthalmologist lately, I would schedule an appointment.  They can test your eyes for tear production, etc.  Do you use any type of eye drops?  Do you ever get the stringy thick discharge from your eyes?  When I do, it means I need eye drops.

Also, if you haven't seen your dentist lately, schedule a check-up with him/her too.  The thick saliva I would think could be just as bad for our teeth as no saliva.

I hope you find this site helpful and informative to you.  You'll also find new friends here too who are on this Sjogren's journey right along with you.  Several of our members also have a Lupus/Sjogren's diagnose.  Again, if you put those words into the search box above, it will take you to those posts.

Take care and come back often.

Just curious - are you female or male? - can't really tell by your screen name.

Bucky

[Scottietottie]

Hi Oriole 

Welcome to Sjogren's world. I'm sorry your good rheumy passed away. Good doctors often seem to be few and far between and many are NOT good listeners.

I'm not a medic but the assymetrical face you are describing sounds as though it could be a swollen/inflamed parotid gland. Maybe it would be useful if you could see and ENT doc because they seem to be more knowledgable about parotid glands than rhemies - at least that is my experience.

I spent over 7 months this year with 'tennis elbow' tendonitis - and no - I don't play tennis either. I was given a months course of Ibuprofen and referred to a physiotherapist who gave me a strap of somekind that fits round my arm just below the elbow. I was also given exercises to do.

Also - like you - I end up with 'greasy glasses'!

I hope you find the site useful.

Take care - Scottie 

[lynnmarie219]

Hi Oriole and welcome to Sjogrens World!

I'm another one who has had tendinitis issues since I was very young in my wrists, achilles, and elbows (Im by no means an athlete either but I had tennis elbow  ).

I have been given meds for inflammation, the splints, etc...but nothing worked as well as Physical Therapy. I really didn't think it would work but it did....and when I was through they gave me exercises to do at home. I know it doesn't work for everyone...but I was lucky.

Working out and doing exercises in the warm therapy pool was also a part of my program and that also helped and felt very good on the rest of my body as well since I also have fibro. It's a wonderful way to stretch and work the muscles and tendons without the stress on the body! 

 

[Patze]

Hi Oriole,

Let me also welcome you to the SJS World and family!  Please look around the board as you'll find a ton of topics that just might interest you, and won't even mention the scads of wonderful members too!

I'm another one that is currently having a lot of problems with tendinitis, and though I have a splint for the wrist and another for below the elbow, there are nights that I can barely stand the pain.  Gee wiz, sure wish that the swelling and pain would go the way of the dinosaur!   Now I don't know if it's SJS related or not, or maybe it might be related to having AI's in general?

I don't get the really oily tears as the others (I have MGD), and the oil glands are all blocked.  I do have regular tears, but because I the glands don't secrete oil, the tears dry extremely fast (I've never been within the "normal" zone since this mess started).

Have either your primary or rheumy checked your vitamin levels lately?  I ask as I also had the super dry lips that cracked and bled all the time for the first two to three years without an answer from any of the doctors I saw then (they were also very swollen).  When I was diagnosed with very low vitamin D and B-12 I was put on a script for these vitamins, the lips did get a lot better (they don't crack as bad and bleed like before).  Also, when I changed from chapstick to any kind of OTC lip moisturizer that does not contain petroleum, the swelling subsided somewhat as well.

The others have given you some great advice, and there's not much that I can add.

Hang in there and take care of yourself -

Patze

[Meld256]

Welcome, Oriole 

Please look around the site. There are great articles and the best part is being able to ask others their views, suggestions, etc. You'll also find wonderful support here.

In answer to your questions, actually I am still undiagnosed Sjogren's but a couple years ago I started noticing the "oily" sort of thick eye fluids and I also woke up with a (rather yucky) dried saliva on my pillowcase and side of my mouth. I no longer do that, my eyes and mouth are too dry. The arm and shoulder pain I've had, and so far not sure what it's from. Many days I've felt like I had 20-lb. sandbags on my shoulders.

Others more experienced will have more info. for you, but again, welcome, and I wish you the best. Feel free to come by anytime and join in!
Take care,
Melinda