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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

— 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.

— Aug 25, 2023

Raw the garlic is an excellent anti-inflammatory because of its alkaline properties. I mince the garlic and add it to mashed avocado and either eat it with crackers or on a piece of gluten-free toast. Because I seem to have a lot of heat coming off the top of my head, I have tried wearing a knitted cap to bed, and I have often woken up totally refreshed and seeming to have plenty of energy. Forgot about this until today, when I am experiencing a great deal of pain throughout my body, so will try the knitted cap again tonight. Who knows! I have had Sjogren's for 31 years and only recently have had an extreme amount of pain and it is truly hard to deal with. I see my rheumatologist for an appt. in 6 days. If he recommends Plaquenil again, I may give it a try.

— Sep 7, 2023

I just blundered into this site and got caught up in reading many of the entries. My comments are those from the vantage point of many years of Sjogren's; mine was diagnosed around 1996. Yep, I've been dealing with this disease for more than a quarter of a century. It forced my retirement from teaching college history by 2001. In the early days of my struggle with Sjogren's, I was profoundly affected. As I have aged either I have learned how to cope more successfully or it has moderated--probably some of both.

I have learned some things over time, however. One, is the disease is different for everybody. Just because another patient has this or that with their Sjogren's does not mean you will, also. Two, nearly everything that goes awry with me relates to my Sjogren's in some manner. So, the disease is insidious. Be aware of that factor. Three, it takes a restructuring of the mind set. I had to learn to take everything in smaller bits. The result is I have many projects going at the same time. Get used to that. It can make for a cluttered life. Four, you have to learn to spell the name of your disease and explain it to people, even medical people. Five, be careful with the Plaquenil. I ended up with retina damage.
Six, don't let the disease define you. You have the disease; it doesn't have you.

And, lastly, life is still good. Even with Sjogren's for over 25 years I am very prolific. I published a non-fiction, history book with an academic press last year. Have another waiting in the wings, if I can get motivated to writing again. Lately, I have been quilting incessantly, finishing about a quilt a week and selling some. I run a book club I developed over three years ago. I still teach some life-long learning classes for two universities. The key for me is just don't stop moving and doing. Inertia is not good. Good luck! Yours, in the trials and travails of Sjogren's, Jo Snider

— Sep 16, 2023

I'm in my mid 70s and have had Crohn's since 1980, PMR (first episode 1995, 2nd 2017), now diagnosed with SS by a rheumatologist who seems very knowleable and did more test on me than anyone has ever done. I have SFN caused by SS with the primary symptom of leg weakness, muscle wasting and loss of weight bearing balance. I was wondering if anyone else experienced muscle soreness and stiffness (extreme). I just had IvIg because of low globulin and the SFN and the hydrocortison they gave knocked it right out. Seems a lot like PMR returning. Do not want more steroids. Any thoughts?

— Sep 28, 2023

Thanks for writing your blog. I’m having almost all of sjogrens symptoms which I had thought were Ms. My rheumatologist has done the blood tests for sjogrens and it came back negative, has anyone had a negative blood test but was diagnosed at a later date? Or by a different tests?

— Feb 13, 2024

I have yet to be diagnosed however just had my oral surgeon tell he thinks I have Sjogrens. I'm seeing him for biopsy of mouth lesion. I see a rheumatologist for RA and it has been suggested that maybe I have Polymyalgia Rheumatica. Prednisone has not taken the pain in my neck shoulders and pelvic and thigh areas. Nir relieved the tingling and numbness. I have all the primary symptoms of SS and am hereby self diagnosing. So now how do I get my Dr involved in running some tests? I have all kinds of feel better remedies on board including pretty strong pain meds prescribed by PCP for Chronic Pain as she has named the condition, but the pain and condition continues to progress. Any help from my affected chat friends would be appreciated.

— Feb 19, 2024

I have been diagnosed with SS 4 months ago, at the time of my diagnosis I had joint pain everywhere in my body and I took a course of prednisone (cortisone) starting with 20mg and tapering down gradually. Currently, I am experiencing some sensations and since I’m really unfamiliar with SS I do not know if they are symptoms related to that syndrome.
Symptoms are: subcutaneous pain in my thigh and chest ( it feels like I’m bruised without being bruised)
Also I get shooting pain in my bunion while I am in bed at night, sometimes it wakes me up at night.
I have always had restless leg syndrome (since 10 years) does it get aggravated by Ss?

— May 20, 2024

i was diagnosed in 2022 , my major symptoms are vertigo/migraine/fatigue i was on hydroxychloroquine for the past 2 years , my ESR dropped down but actually its still high , imbalance while walking caused me fear and anxiety . i visited many ENT'S to sort it out . i had no idea that its related to Sjogren .. i have changed the hospital and the doctor im seeing , and i have started methotrexate injections , to be honest im a bit worried but i really want to get better and get back to my sport life .

— Jun 20, 2024

I have been diagnosed with Sjorgens for over 2 years now. I've had the eye and mouth problems, fatigue, UTIs, sinus infections, etc. There always seems to be another symptom waiting in the wings to raise it's ugly head. My Rheumatologist tried me on Salagen, but I had a terrible reaction to it and had to stop. I just rely on eye drops and chewing gum for my dry mouth as I get awful mouth ulcers and red shiny patches on my tongue if I eat certain things.
I now am experiencing the terrible pains and sensations in my legs others have commented about, even the sore ankles when I press the sides. It has been worrying me for 2 weeks now as I've never experienced it so badly.
My side has been very sore too, but I'm actually going for a CT scan next week to check my kidney stones haven't formed again as I only got some "internally blasted" 2 years ago.
I'm at my wits end with Sjorgens, I hate it. My mother had all the symptoms I had, but it was never mentioned to her and I just remember her being so tired, actually depressed at times. I can honestly see where she was coming from. Just reading your comments has helped me realise I'm really not alone with this and there are a lot of other people trying to deal with this disease. The more symptoms I read about from others helps me greatly understand it all. Thanks

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