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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

A few weeks ago, my husband and I went out of town for a family reunion. I wanted to take a bath and relax. I got in the water and my legs had pain like pins and needles all over where the water was touching me. I had to get husband to give me my coconut oil Mixed with essential oils so I could put on my body to keep it from stinging. This is the only time that’s happened to me.

— 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

Can you you an eye cream ? If so what is best and what is your face cream hyaluronic . My skin hair especially eyes are so dry and swollen . From my Sjourns. Thank you 🙏

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 🙏

Hello Sally & Ruth
My SS went undiagnosed for a year, but it started with a corneal ulcer. Blood tests didn’t show SS. I was seeing 4-5 doctors for my eyes, all specialists. I was so afraid I was going to lose my eyesight. I am thankful for my corneal doctor, she is in charge of her department & saw me twice a week for months. I’d start healing, then it would flare in my eye again. Finally they decide to biopsy my inner lip & my tongue. The tongue biopsy showed nothing but still hurts like h#ll two years later. It was my lip biopsy that finally showed SS.
Add insult to injury, I also have Graves Disease & Thyroid eye disease.

Cry if it hurts. But do something about it. If it’s exercise then do it. Meditation is a great tool. Find a rhumetologist you trust.
I keep telling myself it could be worse & yes I reply to myself how. Truly it can be . I’m still working on support from family. Today is one hour at a time.

Hi, I also have graves disease. Coeliac disease and Familial hypercalcemia too. I have been newly unwell with new symptoms for almost a year and my endocrine doctor is thinking about sjogrens. My eyes are gritty but compared to other symptoms not thay bad. My mouth and nose are incredibly dry all the time and I have constant sinus problems which mean I mouth breathe all the time. The fatigue and breathlessness is also major and I have very sore knees which burn and tingle when ive been busy on my feet.
I'm interested that you also have graves disease, these things seem to always come with other things and I would be really surprised if I don't get a sjogrens diagnoses when I see rheumatology. Any advice or help with symptoms would be hugely appreciated

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 have used plaque mal for 17 years. I have seen aneye doctor all that time. I take Eovac for dry eyes and mouth. Take it three times. a day and dry eyes and mouth go away. My Rhumo prescribed it years ago. Eovac makes it so you feel.moisture come out of your pores. Its a life saver

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 .

There is just one doctor in my health centre who knows about Sjorgens and he's even learning more things about it from me! My Rheumatologist just concentrates on dry eyes and dry mouth, that's it. She gave me Salagen, but I had an allergic reaction and had to stop it. I have terrible mouth sores at times, it's sore to eat, but she said it was nothing to do with Sjorgens! I get awful vaginal thrush and I was finally given an estrogen internal pill last week as I couldn't bare the pain down there any longer. I have joint pain and an awful tingling sensation in my thighs that makes it difficult to sleep. Then there's the sinus infections, gastritis.....the list goes on and on.
The thing that really gets to me is people saying, "oh but you look fine" as if it's all in my head. I've told them to read about it to try to understand, but honestly I don't think they do. I just keep thinking is this it now, I'm 57 and just feel exhausted with it all. I live alone, I've no family and I don't think that helps matters either cos it gives you more time to sit and worry about it all.

— 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

— Jan 29, 2023

Yes I can relate to most of the here. I want to mention something odd that helped me- indirectly —been on two anti cholesterol meds- However discovered hey make a world of diff I’m controlling my SS pain. Days ago miss I am pretty much bedridden n pain- ask dr who confirmed these are indeed anti inflammatory and would help for pain. It was strongly suggsted I start placquinil - problem is I’m terrified of side effects. Please elaborate onnNy side effects you have experienced and if u find it truly makes a difference for you if so how… thx u everyone. Please stay hopeful - we r certainly us a hard road indeed. But it’s are not alone.

— Feb 23, 2023

My GP diagnosed me with SS after blood tests I'd had done, all the other GP's I had gone to had told me it was just the menopause! I've now been waiting 25 weeks on an appointment with a Rheumatologist to see where I'm at with it, are all my symptoms definitely SS and how to manage them. I've myself worried sick, my GP hasn't bothered with me since phoning with me with my results. I actually had to Google SS to see what it was because my GP told me I had it and ended the call with no explanation, nothing. I've terrible stomach problems, muscle pain and dry everywhere. It's getting me down and I'm just taking painkillers as I don't know what else to do about it all until I get a hospital appointment and goodness knows when that will be.

HI all, it was so good to find this site and know I'm not on my own.

My symptoms started late 2019, since then i had every blood test going, scans, you name it, i had the test. SS came back negative along with everything else. Which was a relief but didn't give me the answer why i felt the way i felt.

I was diagnosed with underactive thyroid and started on Levothyroxine. Initially i felt so much better but then went down hill very quickly.

In October last year ENT arranged for a lip biopsy, i finally got the result in February this year. It came back positive for SS. The results were sent to me in the post so i haven't seen the doctor to discuss the results and where i go from here.

Anyway in short, i have all these symptoms, i cant take any anti inflammatory medication because i take warfarin for recurrent blood clots. There was always a question mark for Lupus but i cant be tested for it while on warfarin and they cant safely take me off it.

I continuously get worried at the random pains i get that come and go. I know getting stressed doesn't help but it is easier said than done. Thankyou for listening

— Mar 12, 2023

I have pain all over, I have pelvic pain so bad, some days I'm near tears. I was wondering if it could be associated with SS. I was diagnosed with SS in 2021, at first I thought I had fibromyalgia but the bloodwork came back with SS. I suffered in silence for years also. I am going to be taking pain management classes to help, I'm not ready for the prescription pain medication yet. I rarely take anything now (Ibuprofen or tylenol) because they don't help much so why bother.

— Jun 6, 2023

HI all, it was so good to find this site and know I'm not on my own.

My symptoms started late 2019, since then i had every blood test going, scans, you name it, i had the test. SS came back negative along with everything else. Which was a relief but didn't give me the answer why i felt the way i felt.

I was diagnosed with underactive thyroid and started on Levothyroxine. Initially i felt so much better but then went down hill very quickly.

In October last year ENT arranged for a lip biopsy, i finally got the result in February this year. It came back positive for SS. The results were sent to me in the post so i haven't seen the doctor to discuss the results and where i go from here.

Anyway in short, i have all these symptoms, i cant take any anti inflammatory medication because i take warfarin for recurrent blood clots. There was always a question mark for Lupus but i cant be tested for it while on warfarin and they cant safely take me off it.

I continuously get worried at the random pains i get that come and go. I know getting stressed doesn't help but it is easier said than done. Thankyou for listening

— Jun 15, 2023

Hello everyone, I have been diagnosed with fibromyalgia and Sjogren’s since 2003. When my flare up is really bad, it crosses over to lupus. I’ve been to many doctors, and have given me different medication‘s that give me other bad side effects. Doctors and family don’t understand what I am going through. They think that you’re making this up and that it’s all in your head. I am suffering silently since then, and try to do what I think is best for me. I don’t do well with the medication they give. I tried it all. I try to stay away from extra stress, and work part time. Sometimes I feel like I’m hanging on from a string ready to break. I also have pelvic pain and I end up getting a lot of UTIs wondering if that has anything to do with SS. I haven’t found a rheumatologist doctor that understands my situation. Along with SS and Fibro. I also have rheumatoid arthritis. I try doing the natural meds and over-the-counter medication‘s, but it’s only temporary. I rest a lot and stay away from stressful people and situations. that helps me, but takes a lot longer.

Thank you for all the postings, that really helped me understand some of my pains. I hope that it will also help doctors and family and friends understand us.

— Jul 19, 2023

Last yr has extensive blood work. Docs think Sjögren but can’t give a definitive answer until my ENG and nerve conduction study are completed by Neuro. I am always fatigued, weak, pain upper mid back that goes around right side of ribs. My joins hurt mainly elbows. Tingle and neck mbness hands, face sometimes tongue and lips. Been worked up for other stuff but my blood test suggest Sjögren. My mid back n right side by ribs are painful. Mouth, eyes and throat dry. It’s crazy! This all sucks!!! Any suggestions out there???

I was diagnosed with Sojgrens just in the last two month have been having problems for like 10 yrs and doctors kept telling me there was nothing wrong with me until my eye doctor noticed all the inflammation in my eyes and said I needed to go see a rheumatologist! Well my blood test were positive. I take hydroxychloroquine everyday but it has not started helping yet. I hurt so much everywhere all the time. also about once a month it get really bad stomach pains that hurt into my back and it can last anywhere from 24 hrs to a few days. I have also had severe rib pain for like the last 7 years that nobody can tell me why my ribs hurt so bad. Does anyone else have these issues with the stomach, ribs and back?

I have had SS for at least 30 years, I believe it started when I was a teenager. I too have terrible rib pain, my stomach has gone bad so unable to take any anti inflammatory meds. Dry eyes and dry mouth a constant as is the joint and muscle pain. There are other symptoms but to many to mention. In the last two years have lost 70 pounds, not intentionally, just constant pain/nausea in stomach. Plaquenil was started 25 years ago or so. Have tried many other meds over the years but all have damaged my stomach. What I have found that works for me is to take one day at a time, get good amounts of sleep and rest as well as to eat in small amounts 4 times a day. I try and walk most days if I'm able and prayer. I have a wonderful friend who is always kind and understanding. The flares still happen and I am still learning how to cope with them even after all these years. I hope you find your own path to coping with SS and know that others do understand who deal with it daily.

I have had SS for at least 30 years, I believe it started when I was a teenager. I too have terrible rib pain, my stomach has gone bad so unable to take any anti inflammatory meds. Dry eyes and dry mouth a constant as is the joint and muscle pain. There are other symptoms but to many to mention. In the last two years have lost 70 pounds, not intentionally, just constant pain/nausea in stomach. Plaquenil was started 25 years ago or so. Have tried many other meds over the years but all have damaged my stomach. What I have found that works for me is to take one day at a time, get good amounts of sleep and rest as well as to eat in small amounts 4 times a day. I try and walk most days if I'm able and prayer. I have a wonderful friend who is always kind and understanding. The flares still happen and I am still learning how to cope with them even after all these years. I hope you find your own path to coping with SS and know that others do understand who deal with it daily.

I was diagnosed with SS 5 years ago.
Was feeling extremately exhausted and leg pain. I felt it deep inside my bones. I take the exact meds you are on. Meds do not make a difference but I was told by my doctor this is to dorm or slow down the immune system. I noticed it has worsen and feel it all over my bones.
Just have to make it through day by day.

Your symptoms sound a lot like mine. I've had every test under the sun except a lip biopsy and a muscle biopsy. I predict those are next.

I have been diagnosed with PsA and that is what I attributed my joint pain to. No biologic has helped. When my muscle pain and weakness started we ordered more test and included more doctor. More tests reveled that I have 1 marker for SS. It is the old blood test for SS rather than the newer one. Because my rheumatologist, neurologist, neuromuscular specialist, the MS clinic, orthopedic specialist, ophthalmologist, dentist, psychiatrist, internal medicine doctor, nor my allergist can not find any definitive answer, I have been diagnosed with early SS. I have dry eyes, dry nasal passages, dry mouth, joint pain, muscle pain (that also causes weakness), fatigue, and I'm beginning to have some anxiety and mood changes. I was on hydroxychloroquine, but did not see much relief. Predisone did not help much either.

While I await my next test and doctor visit I have decided to cut out all foods that are processed. I only eat antiinflamatory foods, foods that grow in/on the ground or in a tree, and cut flour and sugar complete out of my diet. This has helped a lot! My psychiatrist put me on an anxiety medication and that helps to relax my muscles and provides some relief. Ibuprofen twice a day helps some. I am taking magnesium glycinate 200 mg and vitamin D 7,000mg. This seems to help the most. The chewable magnesium doesn't hurt my stomach.

Yes, it's been 2 years and I'm trying to stay upbeat but it is getting very hard. I use to volunteer 4 days a week from 10-5. I can no longer do that. Doing the dishes is exhausting. It is so upsetting. I feel like I'm sitting here getting old
Plug away group and try to stay positive. We can manage this and have more good days than bad!

If you are struggling to find answers, don't be afraid to interview a different doctor. You may need to go to a large city or different state, but it is worth it. Sometimes you need to tell your doctor you want a test; don't wait for them to suggest it.

— Jul 19, 2023

Typos… tingle and numbness hands, face, sometimes lip and tongue. Scary!!! What can we do with this syndrome. This is Debbie E. Add this to above statement. I’m still waiting to get my EMG and nerve conduction study done.