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Sjogrens & muscle pain

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Sjogren's Syndrome
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Posted 10/26/2015 3:03 AM (GMT 0)
Hi, I'm new here. I've known I have SS for 30 years & have always thought dry mouth was my only symptoms. But after having "sciatica" and leg muscle weakness for a few years, I'm finally being treated for Sjogrens. My question is does anyone else have muscle pain? Mine is in the right buttock, thigh, calf & foot.
I'm currently on Pred, Cellcept & hopefully will be getting IVIG infusions assuming insurance approves.
Thank you!
Posted 10/26/2015 10:17 AM (GMT 0)
I am also new to this site. I was diagnosed with ss only a few months ago. Yes, muscle pain is there, just as you described. Just another sjogrens bugaboo one has to learn to live with I guess. I also experience fatigue, dry mouth, dry eyes, and have to apply eye drops several times during the night. I believe this winter I will have to get a good quality humidifier for my bedroom!
Posted 10/26/2015 11:17 AM (GMT 0)
Yep, slider, I have all of the above. Weakness fatigue, dry mouth but the pain is the worst.
Posted 1/6/2019 1:01 AM (GMT 0)
I'm new to this, I have sjogrens for a few years though my blood work hasn't shown it yet. My biggest problem is muscle spasms in rib cage and now chest is the worst, but it's all over my body now . Does anyone else have this? I really need to know.
Posted 1/19/2019 6:45 AM (GMT 0)
Oh my Gosh! Me too! Mine are right around where my bra sits on my ribs.
My rheumy says that a nerve runs around there. So I just figure that when the sjogren’s flares
it aggravates the nerve.
I also get bad foot cramping and terrible spine pain that goes up into my neck and my head.
Sometimes the nerves on my scalp are so tender it is hard to lay down.
One time the pain got so bad I ended up in the ER asking for help.
They did some morphine IV and sent me home with just two tabs and said to cut it I half.
I was never so grateful in my life. It broke the cycle of pain, plus I finally slept. Then I saw my rheumy and she gave me Lyrica and baclofen which I used for a week.
She also told me that allot of the pain was from fibromyalgia which is associated with spinal pain and over active nerves and sjogren’s.
Finally I read good things about osteopathy for fibro so I thought well I would rather try that than the drugs long term. It was so great! The osteopath was about as big as my little finger but boy she sure fixed me up. Just by “placing hands” on my spine and head. Not manipulation just gentle pressure to the inflamed spine and the nerves. She also used acupuncture. Amazing!
I told my rheumy and she was very interested as she said she had a collegue that was studying the spine and knew that the sjogren’s/fibro had everything to do with the spine.
I also know that lifting things that are to heavy for me can trigger a flare, I don’t do that anymore!
So now with the lyrica and baclofen it has not gotten as bad again, but I do on occasion still have to add a few treatments with the osteopath.
My sjogren’s was diagnosed with blood work and a lip biopsy.
I do hope you can get some help with this soon, it is a very painful to the point of debilitating
kind of pain. Best to you, tuffymason
Posted 12/5/2020 12:56 AM (GMT 0)
New member. My husband has SS. Recently diagnosed after suffering with many symptoms for over seven years. His first symptoms were left butt and leg pain that would radiate to the right side when it got bad. He saw all the appropriate medical Doctors and had all appropriate testing. He went years being told they couldn't find anything physically wrong. His first positive ANA Titer was dismissed and not followed up on years ago by a referred Rheumatoglist because he didn't have any of the classic symptoms or profile. He does have a family history of Lupus. He is now has most of the classic symptoms but just recently dry mouth and he has no dry eye problems. My point is everyone who has this disease can present differently. Please take your symptoms seriously. Getting a late diagnosis caused him to attempt suicide and has left him with advanced disease complications. Really hard to watch someone you love suffer so much. D
Posted 3/3/2022 4:56 PM (GMT 0)
HI., I AM TRYING TO POST FORE THE FRST TIME HERE.
BUT DON'T KNOW MY WAY AROUND OR EVEN WHO I AM TALKING TO.
SJPGREN'S SHOWED UP I THINK about 7 YEARS AGO. SOMETIMES IT DOES NOT SHOW UPON TESTS BUT I KNOW IT IS THERE.
I AM SUPPOSED TO BE SIGNED IN AND ACCOUNT ACTIVATED. HAVE PRINTED OUT FORUM RULES, FORM INFO,
I'M NOT COMPUTER ILLITERATE BUT NO GORU AND I DON'T KNOW WHERE TO START.
I TOOK PLAQUENIL FOR about A YEAR AND IT HARDLY HELPED AT ALL AND SO EXPENSIVE.
I DON'T KNOW WHO I.M ANSWERING IF ANYBODY. OR WHERE TO START.
EXTREME FATIGUE, EXTREME WEAKNESS. LEG PAIN, BACK PAIN.
CAPS ARE RESULT OF ACCIDENT SOME YEARS AGO, BROKEN SHOULDER.
SYMPTOMS OF DRYNESS, SEVERE WEAKNESS, BACK PAIN ARE A FEW
OF MY WORST PROBLEMS.
BUT I USED TO BE ON A SUPPORT FORUM FOR SJOGREN'S SYNDROME.
THIS WAS YEARS AGO INDER A DIFFERENT EMAIL ADDRESS.
I CAN ONLY HOPE THAT SOMEBODY REMEMBERS ME,
BUT I AM INDEED SIGNED IN AND ACTIVATED. TRULY!
THIS IS MY REAL NAME. I HOPE IT HELPS.
I DID HEAR FROM SOMEBODY BUT NOT SURE OF THE NAME.
I AM ALSO LISTED ALSO IN CHRONIC PAIN AND IN FIBROMYALGIA.
I MENTIONED THESE DIAGNOSES IN PREVIOS POSTS WHICH
I HAVE LOST.
BUT THIS IS MY NAME.
ANNE HAINES
ANNE HAINES
ANNE HAINES
Posted 6/4/2022 10:35 PM (GMT 0)
Hi I know this is an old post, but I suspect I have SS and I have bad neck pain and doctors don't know. I have appt with rheumy in a few weeks and hope I will get diagnosed. I had lyme's 3 years ago and health has been going down hill ever since.
Posted 11/1/2022 2:11 AM (GMT 0)
Yes, I have pain so bad from my butt to my toes. I ben told by different doctors, it is Buerger's Disease, Neuropathy nerve pain, Peripheral Artery Disease, Restless Leg Syndrome, Raynaud's in the legs, Back messed up causing my legs to hurt, only to find out it is Sjogren's Syndrome. Don't know how long I have had it until doctor told me in June of 2022 what it is. The pain gets so bad that I can't hardly do anything, like walk, sleep, work, sit and rest in a chair. So far the only thing doctors gave me Ibuprofen, Gabapentin, Ropinirole, Amitriptyline, Duloxetine, but none of them help. Doctor never gave me anything for Sjogren's Syndrome. Sorry for posting on an old thread.
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