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Chronic pain is one of the most common symptoms associated with Sjögren’s. I have the interesting position of working as a healthcare provider in the field of comprehensive pain medicine as well as being a Sjögren’s sufferer.

My role working as a Physician Assistant and Chiropractor is to help patients manage their pain. In our practice, we treat a variety of diverse conditions with a continuum ranging from carpal tunnel syndrome to abdominal pain and everything in between. While this can be a challenging area of medicine to practice, it is also quite rewarding to assist others in living a more enhanced quality of life.

Prior to being diagnosed with Sjögren’s, I rarely experienced pain. Recently, I was reminiscing back to a time not many years ago in which I only used ibuprofen once or twice over several years’ time. My own personal struggle with Sjögren’s causes me to endure discomfort in various areas of my body every day. I experience joint pain, especially in my knees and fingers. The nerve sensations in my muscles are also very discomforting. Additionally, only since the development of Sjögren’s, I suffer from debilitating pelvic pain. Non-steroidal anti-inflammatory medications ibuprofen and Celebrex seem to help the greatest for my pain. Heat is also quite effective. When I make more anti-inflammatory diet choices, my pain is absolutely better. This includes avoiding excessive sugars, flour, dairy, red meat as well as processed and fried substances. When I regularly take vitamin D and eat fresh cherries the pain also improves. If I have poor stress management and sleeping habits, my pain worsens. Finding motivation for regular exercise can be difficult as I also fight significant fatigue, but I know that movement is necessary to keep my joints and muscles mobile. I also use a TENS unit from time to time as well as over the counter lidocaine products.

It is fulfilling to assist in improving the quality of life of others that suffer from chronic pain. This is especially meaningful being that I endure pain daily. I encourage anyone experiencing chronic pain to seek out a comprehensive pain management specialist for evaluation.

by Rebecca Hosey, DC, MSPAS, PA-C

Dr. Rebecca Hosey is a Board Certified Physician Assistant and Chiropractor. She has practiced interventional pain medicine for many years and was diagnosed with Sjögren’s in 2015.

This information was first printed in the Foundation's patient  newsletter for members. 

Comments

— Jun 27, 2020

Hello, I am five years into being diagnosed with SS. I am reading past posts regarding pain, and found the sentence "nerve sensations in my muscles also very discomforting". I am curious if anyone finds an "all over" body prickling /tingling sensation? I believe this to be related to SS, particularly when there is a flare up. Any comments would be most appreciated!

Hi. I am 53 and recently diagnosed through bloodwork.
I have chronic pain all over, both neural and muscular.
At night when I lay in bed, I have all over body tingling and an almost tremor like feeling
all over. The only medication I tried so far is Rheumate, which is RX.
I am not sure If it actually helps.

I have tingling and twitching over most of my body similar to a cold chill moving over an area of my body. Had so many tests over two years with all doctors and specialists refusing the one test that I felt I needed. Finally advocated for myself and went to John’s Hopkins. It was first test ordered and confirmed. Non-length defendant small fiber neuropathy. I researched The National Library of Medicine to get answers.

I also have SS and cannot get rid of the dry mouth, also eoisodes of thrush. This weekend I expweiece really terrible pain, when sitting I could not get up from the pain it caused to get up but even walking was painful, this lasted 3 days then out of the blue the pain subsided. To me it seems that not many physicians no matter what their professional know what to do for SS, the SS could complcate your life. The medication I was put on is Hydroxychloroquine 200 MG Twice a day. As far as muscle relaxers are concerned you do get a good night's and restful sleep. As for daytime anxiety we need to get more familiar with yourself and you will be able to take the anxiety medication before allowing anxiety to turn into panic, try this it works. GOD BLESS m. Hope this helps someone

Thank you so much for writing this blog. I was diagnosed with SS a few months ago and you have touched on some things I have been having issues with. Pelvic pain is one of them. My doctor thought I had a hernia and sent me to a surgeon. The surgeon sent me to get a CT scan of my stomach and pelvis and it was negative. The surgeon sent me to a pain clinic but I wasn’t told or I didn’t quite understand why he was sending me to a Neck and Spine clinic for pelvic pain. The pain doctor sent me to get a internal ultrasound and then an MRI which showed calcified fibroid tumors. I decided myself to go to the gynecologist to see if it was something the test didn’t showed. Well the gynecologist repeated my pap and no cancer was found but normal postmentalpostal things that is found in most women. He was puzzled of why they ran so many test on me regarding the possible hernia. He told me that it could be pelvic pain from the SS. I was so happy to read that in your blog.

Hi Roxann! I too have anxiety and even panic attacks. My daughter, a therapist said do guided mediatation it really helps. I’ve been doing that and it does help a lot.

I was diagnosed 4 years ago and I have joint pain eye dryness etc. lately I’ve noticed back pain that is unbearable. I was on steroids and other meds. I notice they never tell yu what is going to happen when yu see the doctor.. I think this is worse than they say. Yu just want honesty in these circumstances. My primary tells me it is from the sjogrens. So I take ibuprofen and heat. Keep walking and try to eat right!

Yup. Nerves on fire. Numbness tingling travels all over. Keep thinking maybe I have MS. But my diagnosis is SS. Scary and no one can see it -so I struggle most days in silence.

Go see a neurologist. Small nerve neuropathy tends to appear with SS. It can feel like you’re vibrating and it’s worse in the evenings or when you’re sitting quietly. It’s can also feel like your skin is burning and ripping, but your skin will look fine. My toes burn almost constantly. Anyway, a neurologist can help you sort it out. Good luck!

I’ve been suffering for so long with terrible lower back pain along with dry eyes, dry mouth and horrible abdominal pain. Admitted to hospital a few weeks ago, ends up really lowly electrolytes and high ketones. I really think I have sjogrens but the waiting list is long. It’s going to be many more months to wait. Taking tramadol and have lidocaine patches as well as zolpidem as I have insomnia too. Life feels unbearable. Thanks everyone for sharing your own experiences.

Answer to your question yes tingling sensation and numbness feeling is horrible all over body even my face and a weakness in my right leg is very painful with weakness. This yr has been the worse I also have fibromyalgia which doesn’t help the nerve and muscle pain is strong. If you have any more question please email me.

Thank you for replying . I’ve never known pain like this. I know I’m not alone with the suffering. Definitely have those symptoms and really struggling tonight

I have had horrible severe dry eye disease for years that just continually gets worse. Only last year I had an ophthalmologist used strips to test my eyes moisture, he also talked to himself back and forth about having me tested for Sjorgens, but decided not to do it quite yet. Decades of muscular skeletal, joint pain that never goes away, but lightens up now and then more not than often will it ease. It mentions so many issues that I have dealt with such as a dried throat not being able to swallow food so bad is to gag on even a nibble. Of course doctors can be judgmental and look at you like you read the crazy or you're a Seeker of some kind. I don't know anything about this syndrome yet really but even is a child so-called Growing Pains I never outgrew still today. I think this syndrome explains more than FMS although I'm wary of how definitive testing can be. Sometimes literally the pain on one side of my body, mostly the right, is incredibly worse.

I get so much more muscle pain and back pain and especially spine pain when I have a flare . I’m guessing the inflammation from the flare up is making my arthritis and old herniated disk act up and yes also knee pain during a flare up .

— Apr 29, 2021

I was diagnosed 6 years ago by my Rheumatologist. Under stress , I find the symptoms flare.
I then review my diet and exercise program. And use Ibuprofen for the pain. Being cold, exacerbates the symptoms.

Sensitivity to cold and heat, numbness in fingers and fatigue are my enemies as a person used to having had a very busy professional and personal life. Family has trouble understanding the flares.

Any suggestions?

Annette

— Oct 31, 2021

I was diagnosed months ago........I hurt all over......my eyes suck.....my mouth always has sores......I feel like I'm 90 yrs.old......I want my life back

Hi Ruth, I also received my official diagnosis, Sjogren's with Lupus Overlap. I have all over pain, in particular my thighs hurt and burn so badly it makes me cry. My eyes are dry, painful and feel like they have knives digging into them at times. The mouth sores were really bad, but have eased off, my rheumatologist advised this is due to my medication, hydroxychloroquine starting to work. I have extreme fatigue. I really hope that you find some medication that helps.

My rheumatologist say it was FMS since 2001 and I had told him about having the entire right side of my body hurt most especially in the joints and then it felt like they were on fire absolutely nothing would stop the pain. He said that was bursitis and as I read I just don't know about anything anymore. The worst that bothers me I suppose is the dry eyes and vision as well as never-ending pain even when it's dull it's 24/7 and that will catch up with you too. The entire most of the time I just don't know what to think anymore. Even in 2001 FMS I was told was all on my head syndrome so I stopped discussing anything until the ophthalmologist mentioned testing for Sjogren's, but never said anything up that was more than a year ago. I feel I am definitely going to go blind My independence will be completely taken away and yet the feeling of wanting to rip my eyes out will still be there.

Hi Patricia, ask for a blood test for Sjögren’s… there’s a marker that shows up. Dry eye can be helped with plugs in your tear ducts. The throat/ mouth symptoms can be helped with dry mouth solution you keep at hand (from pharmacy) and high fluoride toothpaste(on prescription) helps prevent tooth decay. Plaque can be goodie with Sjögren’s, ask your dentist to help with cleaning suggestions. Be brave..don’t let Sjögren’s define you. Diet choices (non inflammatory)and exercise and determination even when pain is bad, pays off. It’s like facing the last few feet to climb that mountain when you are already exhausted, but if you do pass that pain barrier you win! And tomorrow is possible. Pat yourself on the back every day and self hugs work too.. be strong *
Some things that help me..ask your doc
5mg pilocarpinehydrochloride tabs for extreme dryness of eyes and mouth
BioXtra gel mouth spray, moisturises, comforts and protects your mouth
Throat lozenges for quick relief
Lip balm in every handbag
Hylo-forte eye drops, preservative free
Rub in body moisturiser all over every day
My hair and skin get so dry so I use hair oil and hyaluronic every night
Hugs

I’ve had sjogrens since 1997. Was first diagnosed with fibromyalgia but years later I found a great rheumatologist who found I had sjogrens. I’ve not been able to be outside in hot weather and light hurts my eyes. But I found that I could have my glasses tented a very light blue which doesn’t change how things look and my eyes don’t hurt in the light. But now
I am having just awful awful pains in hip, knee and down the muscle of that leg. I was on prednisone for seven days but no relief. Saw an orthopedic dr and got shot in knee. Hip has bursa pain, but the knee gives way when walking and constant pain down muscle to ankle. Taking Tylenol and Ibuprofen and get a little relief but not much. Going to have physical therapy and
Then pain management. Just pray that something will help this continued pain. Can’t sleep and beginning to feel so depressed. Is there any pain medicine that I can take off and on for this pain? I’ve always dealt with my pain but this is just too much. Thanks so much for any help you can give.

I take Celebrex and gabapentine , then I lay off it for a while and go to pain management get epidural it works so good till it wears off then I’ll use the aleve or Celebrex. Which only helps a little. Best wishes 🙏

I feel you. I work in an kindergarten classroom and I love my job but the pain, extreme exhaustion and brain fog is taking me over the edge. I feel like something has to give.

— Apr 1, 2022

I hurt all over. I started my Journey when my bones hurt I used to think I had bone cancer years no 1 could figure it out until quick biopsy showed I have SS I recently had a new pain management doc tell me SS is not painful at all & I should go to physical therapy even though it's my bones that hurt all of them I was on pain pills he stopped those now im back on methotrexate & steroids it's not helping with pain I don't know what to do I just want my life back

Be careful with the methotrexate it can harm liver and steroids kind of ruined my bowels.. I tried so many meds that did nothing. The Plaquenel is the only ones that helps.

I had many Drs tell me that Sjögrem is just dry glands a they don’t understand why I’m in so much pain he said sjogrems don’t hurt I left that office immediately. Yes they also did some exams for bone cancer thank God that was clear. I just want to know do you show inflammation in your blood work because I don’t. I try therapy but because I have fibromyalgia it would flair so had to stop. I’m getting bronchitis at least 4 to 5 times a yr the Dr is thinking that SS it's affecting my lungs so she send me to see a specialists. The tingling and numbness feeling seems to be getting worse. I have to take my pain med I don’t know what I would do if I had nothing to take the edge off. I’m not getting much sleep these days because of the pain. I’m on metrotrexate again with some supplements the Dr said she wanted to give it another try because is the folic aced with a supplement of vitamin B 12 is together in one pill. She said if it doesn’t help me this time we would start looking at other meds

Most Doctors do not know much about Sjourns syndrome they act like it’s just dry eye and dry mouth . They need to read more and learn more about SS , Before telling you your body pain and muscle pain and fatigue is not from SS . When we all know what a bad flare up feels like .

— Jun 23, 2022

In 2001 I was hit by a car and fractured the knee. I have noticed the flares ups attack where yu have prior injuries as well…

Yes mine also whenever I have a flare anywhere I have arthritis which is almost everywhere hurts so bad can barely walk and an old back injury acts up with inflammation in the spine and herniated disk . I also get bad headaches and eye pain . sometimes flexeral and celebrex helps calm the eye pain and headache a little .

— Jul 22, 2022

Thank you for posting, just diagnosed and it explains a the horrible pain I have had for so long sometimes unbearable ble. Ibuprofen helps tonight I am going out dancing and hope that helps as I generally feel better after I teach my line dance class. Haven’t been able to get into a rheumatologist and hope to soon. This is a hard challenging disease to have in life.

Yes, I have. Plus multiple other meds. I hope it works for you. Changing meds will be a constant in your life if you have Sjogrens. I have been diagnosed for over 12 years and I cannot begin to name all the drugs I have been on. But you need to get on Plaquenil right away because that will slow down the progression of SS. Pain is one thing, but you must slow the speed of the progression as fast as possible.

I tried it. I took a super low dose. Don’t remember it specifically but it made me throw up every day. I lost 15 pounds in one month. It basically gives you withdrawal symptoms from nothing and it was awful.

Yes, my Dermatologist prescribed Naltrexone for me because of my puritis (itching). It really helped; however, one of my physicians at the medical center took it upon himself to diagnose me with drug abuse and in my profession that it just the kiss of death! I was able to enlist the help of another physician, a rumatologist, to clean up my record , but it was too dangerous exposure for me and I quit taking it. I wasn't monitoring my Sjogren's at that time, but in retrospect I did do overall well. I was diagnosed 5 years ago.

— Aug 22, 2022

hello, I have Sjogren's and Just recently diagnosed with Raynaud's. I live in Oregon City , Oregon part time, and Just out of Kalispell, Mt. during the summer months. I am looking for a support group to share stories and ideas to help with this condition . Its a Long, painful, and exhausting road that we lead . Having someone who feels the same way would defiantly be appreciated.
thank you,
diana

— Oct 29, 2022

I have unbearable muscle pain in both legs at night. Can someone help. I emailed my Rhumatologist whom claim muscle pain is not a symptom of Sjogren

But it is for fibromyalgia read on the subject and see if you are experiencing all the triggers of fibromyalgia it affects the nerves and muscles. Having bothSS AND FIBRO Is ver painful

Yes, I too have unbearable pain in my legs, especially at night. This has been a symptom I’ve had since approx 1996 and it makes life difficult. If you want to email me we can discuss further

— Dec 21, 2022

I suffer with mouth ulcers. That is why I was diagnosed by blood and lip biopsy. How can I get the ulcers to go away? Please help me

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