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lucysgd
Veteran Member


Date Joined Jun 2008
Total Posts : 663
   Posted 9/12/2008 8:41 PM (GMT -7)   
I don't know if I'm getting paranoid, or finally realizing that there are often connections to off the wall symptoms with lupus and AI issues.  The bumps on my face are gone, but now I've got some unfun pain in my rt ear.  It's kind of like nerve pain - shooting and sharp, and it hurts to touch and/or  manipulate the outside of the ear.  It doesn't appear red or inflamed, and the pain is intermittent, but it hurts like the dickens when it starts in.  I also have a mild sore throat on that side.  This is the third time this has happened in the last two months.  No fever, runny nose or the like to indicate a cold or virus.  Just the pain and fatigue that are my constant companions.  I guess I did have 2 mouth sores on that same side that co-incided time-wise with the face bumps that started over last weekend.
 
I may be way off here, but it just seems like another aspect of flare.  Ring a bell with anyone?
Thanks in advance...
Lucy 
 
 
 
 
diagnoses:  mono 1972; postviral CFS 1997; fibro 1998; CEBV 2005; UCTD (dx limbo) 2007
meds:  occasional low dose xanax for sleep, artificial tears w/ ointment at night, ibuprophin (none of which manages the problems very well!)
 
We cannot avoid the birds of sadness flying over our heads, but we need not let them make nests in our hair. 
       ~~ Chinese saying as quoted by Helen Nearing


AlwaysRosie
Veteran Member


Date Joined Jan 2005
Total Posts : 8616
   Posted 9/12/2008 9:03 PM (GMT -7)   
(((((( Lucy )))))))))

It is NOT in your head.

I too get ear pain with flares. I've come to believe that it is inflammation caused by sjogrens (for me). Do you get dry eyes? dry mouth? swollen glands? Sjogren's can cause all of this.

Hopefully some of the others will have more ideas for you too. Mine is a shooting pain and it will cause me to grab my ear in pain. Normally, I can hide most of my pain . . . but this just catches me totally off guard.

Have you tried anti-inflammatories?

Blessings!

In His Grip

AlwaysRosie           "We can't control the waves, but we can learn how to surf!!"

Psalms 139

Co-Moderator - Lupus Forum

UCTD, Inflammatory Arthritis, Diverticulosis, (recent dx - Sjogrens, Crohn’s 4/08)

Clickable Links:  Lupus Resources    Lupous.Org   Lupus Criteria (4 of 11)   Lupus Chapter Locator


lucysgd
Veteran Member


Date Joined Jun 2008
Total Posts : 663
   Posted 9/12/2008 10:13 PM (GMT -7)   
Oh, Thanks Rosie! It sure helps to have someone know what you're talking about. And yes, I have chronic dry eyes & mouth - and right now the gland in my neck is a little tender on that side as well. I actually had a lip biopsy done 1 1/2 yrs ago to rule out Sjogren's - which was negative - even though I seem to have all the symptoms.

I am trying not to take any more Ibuprophin right now - I really loaded up while on vacation and thought maybe that was why I had a bad headache for the last two days. It finally subsided today, so i didn't press my luck. I will have to tomorrow, though, if this doesn't let up. I see the rheumie on the 24th, and will definitely report the red bumps and the ear pain. This forum is the best - great info and support - thanks for your help!

g'night - Lucy
diagnoses:  mono 1972; postviral CFS 1997; fibro 1998; CEBV 2005; UCTD (dx limbo) 2007
meds:  occasional low dose xanax for sleep, artificial tears w/ ointment at night, ibuprophin (none of which manages the problems very well!)
 
We cannot avoid the birds of sadness flying over our heads, but we need not let them make nests in our hair. 
       ~~ Chinese saying as quoted by Helen Nearing


AlwaysRosie
Veteran Member


Date Joined Jan 2005
Total Posts : 8616
   Posted 9/13/2008 4:49 AM (GMT -7)   
You are welcome! I hope the doc can figure things out for you. Has he ever prescribed plaquenil? Its the usual choice for 'first guns' meds even when the dx is vague. It helps inflammation. It takes several months to build in your system, but seems to be beneficial for lots of us.

Blessings!

In His Grip

AlwaysRosie           "We can't control the waves, but we can learn how to surf!!"

Psalms 139

Co-Moderator - Lupus Forum

UCTD, Inflammatory Arthritis, Diverticulosis, (recent dx - Sjogrens, Crohn’s 4/08)

Clickable Links:  Lupus Resources    Lupous.Org   Lupus Criteria (4 of 11)   Lupus Chapter Locator


mygrljes
Regular Member


Date Joined Mar 2008
Total Posts : 110
   Posted 9/13/2008 6:04 AM (GMT -7)   

(((lucy)))

You are not paranoid. I have had problems with my left ear since about a year after I was diagnosed. I, too, get those sharp pains. My outer ear feels hard and hurts to touch it, but no noticeable(sp?) swelling, and it feels kind of swollen in the canal. My ear also loves to produce wax. I just recently had to have it cleaned because I couldn't hear out of it.(Not the first time for that). The doctors say it's not related to lupus, but doctors don't know everything about lupus. So, how do they know it's not connected? I believe it is.

Ibuprofen and cold compresses to slow down the blood flow and reduce swelling seem to help me. I hope you find relief soon.


Robin
 
dix: lupus sle Jan. '99, hypo-thyroid Mar. '06
rx: pred. 5mg/day, plaquenil 200mg/day, levothyroxine .112mg/day, premarin .45mg/day, methotrexate 7.5mg/week, folic acid 1mg/day
 
 
Also a wife and mother of three.


jhmom
Veteran Member


Date Joined Oct 2004
Total Posts : 2244
   Posted 9/13/2008 9:19 AM (GMT -7)   
((( Lucy ))) I know exactly what pain you are talking about. Recently my rheumy only wanted me to take my NSAIDS as needed and after several days of not taking it I had the same pain you described. I went to my PCP and my ear was clear as a bell, she figured it was inflammation caused by lupus and told me to go back on my NSAIDS (anti-inflammatory) and within days of taking them everyday the pain was completely gone.
Stacie

Trust in the Lord with all thine heart, and lean not unto thine own understanding ~ Proverbs 3:5 ~

DX: Hashimoto's, Celiac Disease, Raynaud's, Lupus and Sjogrens
RX: Imuran, Plaquenil, Methotrexate, Flexeril, Piroxicam, Levoxyl, Folic Acid, Folgard OS (B12), Darvocet (as needed) and magic mouthwash (for mouth sores)


lucysgd
Veteran Member


Date Joined Jun 2008
Total Posts : 663
   Posted 9/13/2008 9:23 AM (GMT -7)   
Hi Rosie & Robin,

Thanks for your posts. Your descriptions are right on. Robin, I dreamt recently that I was trying to clean out my ears! Maybe that's part of it. Rosie - I hope to start on Plaquenil - it does seem to be the safest thing that most folks get some relief from. The rheumie was ready to put me on Plaquenil a year and a half ago, but I wasn't ready. In May - I was ready - and she wasn't. We'll be talking about that too, this month. I wanted to try accupuncture first, which I've been doing with her blessing - maybe she didn't want to try more than one thing at a time.....I don't know......but I need more help than Advil.

Rheumie is an hour away - and when a bad flare hits - I can only make it to my pcp in town - not the best system. Ear pain seems better today so far......here's hoping!

Take care,
Lucy
diagnoses:  mono 1972; postviral CFS 1997; fibro 1998; CEBV 2005; UCTD (dx limbo) 2007
meds:  occasional low dose xanax for sleep, artificial tears w/ ointment at night, ibuprophin (none of which manages the problems very well!)
 
We cannot avoid the birds of sadness flying over our heads, but we need not let them make nests in our hair. 
       ~~ Chinese saying as quoted by Helen Nearing


AlwaysRosie
Veteran Member


Date Joined Jan 2005
Total Posts : 8616
   Posted 9/13/2008 9:29 AM (GMT -7)   
Great Lucy . . . I hope your appointment goes well. Would you tell us about it when you get home???

Actually Advil helped me better than several rx meds. But we each respond to meds differently and it become a trial and error process.

Blessings!

In His Grip

AlwaysRosie           "We can't control the waves, but we can learn how to surf!!"

Psalms 139

Co-Moderator - Lupus Forum

UCTD, Inflammatory Arthritis, Diverticulosis, (recent dx - Sjogrens, Crohn’s 4/08)

Clickable Links:  Lupus Resources    Lupous.Org   Lupus Criteria (4 of 11)   Lupus Chapter Locator


lucysgd
Veteran Member


Date Joined Jun 2008
Total Posts : 663
   Posted 9/13/2008 9:34 AM (GMT -7)   
Thanks for your post, Stacie! Like everyone says - knowing others can relate to what you're experiencing is such a huge help. Sure wish I'd found this place long ago!
Lucy
diagnoses:  mono 1972; postviral CFS 1997; fibro 1998; CEBV 2005; UCTD (dx limbo) 2007
meds:  occasional low dose xanax for sleep, artificial tears w/ ointment at night, ibuprophin (none of which manages the problems very well!)
 
We cannot avoid the birds of sadness flying over our heads, but we need not let them make nests in our hair. 
       ~~ Chinese saying as quoted by Helen Nearing


Serina
Regular Member


Date Joined Aug 2008
Total Posts : 431
   Posted 9/23/2008 11:25 AM (GMT -7)   

I too have this ear pain and never related it to Lupus, and cannot remember if the mouth sores were present at the time i have the ear pain.  Mine usually starts out feeling  like an infection.  the side of my face will be sore to the touch, and ache, and my ear hurts, and sometimes there is sore throat.  this has been happening for a long time.

But no mouth sores in over a week.  It would be such a blessing if those sores would not come back.  to be able to eat in peace and without pain would be wonderful.  maybe plaquenil is working its magic wink

I am learning so much by going to different pages of new topics, and finding more symptoms to tell to my doctor.  Be they lupus related or not, he will decide I guess.  but if this plaquenil is taking the mouth sores away, who cares if it is lupus related or not?

Hester


Lupus diagnosed 1996, Heart by-pass 1998, breast cancer 2000, stroke2002, vascular surgery 2005, heart attack in 2007, and had a stint put in, Sjogren's Syndrome 2008
 
******
aspirin daily, multivitamin daily, Arthrotec 50mg twice daily, Meclazine 25 mg, as needed 4x daily, Hydoxychloroquine (plaquinil) 200mg twice a day, Metoclopomide 10 mg, 4x daily, Doxepin 50 mg one cap 4x day, Metoprolol 100 mg daily, Levothyroxine (synthroid) 50 daily, Amlodipine 5mg daily, Crestor 10 mg one tab daily, Lisinopril 40 mg, one tab daily, Omeprazole (prilosec) 40 mg daily, Plavix 75mg daily, promethazine 25mg x4 daily, Restasis one drop in each eye every 12 hours
 


Tá mé breá
Regular Member


Date Joined Aug 2008
Total Posts : 140
   Posted 9/23/2008 3:05 PM (GMT -7)   
wouldn't this be a connective tissue thing, the cartilage in your ear could be affected.
43 yr old mother of 6 grandmother of 1 going on 2!
dx 2006 - autoimmune issues, arthritis, 01/2008 - myelofibrosis. as of 08/08 testing continues signs point to Lupus. (family history - mother RA/Lupus).

symptoms - malar rash, mouth soars (in and out), joint pain, extreme fatigue, migraines, heart pounding on light activity.

rx-cymbalta, propranolol, clonazapam, prednisone, progesterone cream, supplements - b6, b12, flaxseed oil, c.

"All we have to decide, is what to do with the time we are given" ~ Gandalf


Serina
Regular Member


Date Joined Aug 2008
Total Posts : 431
   Posted 9/23/2008 7:14 PM (GMT -7)   
spinningmawmaw said...
wouldn't this be a connective tissue thing, the cartilage in your ear could be affected.

I don't know.  But I have written it down to tell my doctor when I see him next month.
Hester
Lupus diagnosed 1996, Heart by-pass 1998, breast cancer 2000, stroke2002, vascular surgery 2005, heart attack in 2007, and had a stint put in, Sjogren's Syndrome 2008
 
******
aspirin daily, multivitamin daily, Arthrotec 50mg twice daily, Meclazine 25 mg, as needed 4x daily, Hydoxychloroquine (plaquinil) 200mg twice a day, Metoclopomide 10 mg, 4x daily, Doxepin 50 mg one cap 4x day, Metoprolol 100 mg daily, Levothyroxine (synthroid) 50 daily, Amlodipine 5mg daily, Crestor 10 mg one tab daily, Lisinopril 40 mg, one tab daily, Omeprazole (prilosec) 40 mg daily, Plavix 75mg daily, promethazine 25mg x4 daily, Restasis one drop in each eye every 12 hours
 


sistersjogrens
New Member


Date Joined Jan 2010
Total Posts : 2
   Posted 1/2/2010 11:06 AM (GMT -7)   
smurf Hi guys, I am new to this website,   You are not alone recently I have been having pain in my head on the same side where my partoid gland is more swollen. Usually both side swell causing jaw pain and ear pain. Dry eyes have made me very sensitive to light so I wear shades alot of the time this seems to help. I hope we all feel better this year. God bless everybody and have a good year!  

mom46
Veteran Member


Date Joined Dec 2004
Total Posts : 8198
   Posted 1/5/2010 11:19 PM (GMT -7)   
Welcome Sister,
Glad you made a post. Several of us have Sjogren's Syndrome with Lupus. I have a lot of problems with my left parotid gland. It can hurt like the dickens! When this happens, I drink a lot of water.

I have to wear the dark sunglasses that wrap around the sides of my eyes due to sjogren's. Hope you pop back in soon. Take care and God bless you too!

Babs

sistersjogrens
New Member


Date Joined Jan 2010
Total Posts : 2
   Posted 1/8/2010 1:11 PM (GMT -7)   
Hey Babs,
Thanks for your reply. I just got off medrol dosepak for flareup and going back to the rheumy on Tuesday. I finished the meds and of course swelling is back again, very dry even though I am on evoxac 3 times a day. Joints very sore all over and to top it off I dropped my laptop on my left foot and I am now wearing a boot for two weeks and back to the ortho. I sit here as I write to you and I laugh, better than crying I guess! Have a wonderful weekend!
p.s. do you ever get fever and chills during a flareup?

Xoangeleyesxo621
New Member


Date Joined Aug 2010
Total Posts : 2
   Posted 8/30/2010 8:59 AM (GMT -7)   
I am new to this site but have a few ?'s about Syjergenes Syndrome. I went to the Ent on Friday and am currently waiting for Blood work to come back to see if i have it. I have dry eyes, he said i didnt produce much saliva, have jaw pain, basically all the signs. My ? is, Does anyone have neck pain, i guess id say its on both sides on my throat where your thyroid is. Its more of an ache. Like a pulled muscle. I dont have it today but usually have it a few times a week. Also ive noticed the past few weeks, when cleaning my ears it hurts to even put a qtip in them. Is this all normal??? Thanks everyone for your input!

jdrea
Regular Member


Date Joined Aug 2010
Total Posts : 124
   Posted 9/2/2010 7:54 PM (GMT -7)   
I have pain in my ears mostly in the left but sometimes it will happen in both. And sometimes, don't know why but I get fungal infections in my ears. I take care of them and clean them regularly just as the dr has told me to do so but it still happens every now and then. The pharmacist explained to me that they can be quite common in someone who's immune system is conpromised. She explained to me that with the autoimmune diseases at work in your body sometimes the strangest things will happen and you just have to treat the symptoms. I hope that you all of you that your drs can come up with something to stop the ear pain and for that matter all the pain. My prayers go out for each of your.
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