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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.

— Jul 29, 2024

How does acknowledging the non length dependent small fiber neuropathy help seek appropriate treatment? I think I may have that too in the top and bottom of my feet. I am considering using PEMF - pulse electromagnetic frequency device and treatment. Have you considered it? For decades it’s been used at equine facilities in the US for arthritis pain in horses.

Try CBD oil on prescription It doesn’t work for everybody’s pain but it’s an anti inflammatory as well and definitely helps with sleep. Make sure you start with a small dose and increase it every few days until it works and that will be your dose.

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

The best thing I have found for dry mouth is Toothmousse plus. It also helps prevent fillings. Buy from your dentist or some pharmacies.

I use Robaxin (methocarbamol). I think the "real" dose is two 500mg tablets every 4 hours (like if I threw my back out). I take half a tablet every 4 hours as needed. If I am VERY stiff and painful I will take a whole tablet. I function normally on this dose and can drive, etc. taking a whole tablet at nite really helps with sleeping and feeling more refreshed in the morning. Can anyone explain why muscle relaxers help Sjogrens so much?

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.

I also have Sjogrens and pelvic pain. It burns and throbs, extends to my inner thighs, and seems connected to my peripheral neuropathy in feet and legs. The PN is notdue to diabetes, but likely to Sjogrens. In addition to the PN, I have extreme burning pain behind and to the inner side my ankles. It is sometimes absolutely unbearable and I have to lie down and put my legs up. This occurs if I am upright too long, more than about 1.5 hours. I am trying to find out more about this. I have had painful UTIs, but that is being managed with estrogen cream. This pelvic pain occurs even if I don't have a UTI. I don't know if this a femoral nerve problem, or just peripheral neuropathy of the pelvic area, or what. I am going to make an appointment with Rheumatologist, but I don't know if this will require neurologist help to figure out, or what. At least I am learning others have it and would appreciate any insights others may have.

I too have PN as well as extreme pain and sensitivity to even light touch on the inside and outside of my ankles. Its hard to explain, but the ankle pain is not the same as the neuro pain on the soles of my feet. Thank you for sharing your experience, it is such a difficult puzzle to figure out and determine treatment. I hope you have luck with a rheumatologist. I am about halfway through a course of softwave shockwave therapy for my feet and ankles. I is uncomfortable to take, but I do think it is helping. It feels like there is very fine scar tissue that continuously get re-injured or some kind of acid buildup in my ankle area, that's the best I can describe it.

I have SS AND SMALL FIBER NEUROPOTHY, THE PAIN IS UNBAREABLE AT TIMES, ALSO FAILED LAMINECTOMY. I SEE A NEUOLOGIST AND RUMATOLIGIST AND PAIN MANAGEMENT DR.
I ALSO HAVE A PAIN PUMP FOR MY LUMBAR SPINE. I TAKE TRAZADONE, HYDROMORPHONE. IF I TOUCH MY BONE IT HURTS, I GET IVIG INFUSIONS FOR SFN. SS CAN CAUSE LUNG PROBLEMS, HAD CT SCAN. DON'T KNOW THE RESULTS YET? MY LEGS, CERVICAL SPINE HURTS SO BADLY!!!!!!! LOVE TO HEAR FROM YOU

Thanks to Google ai pelvic pain finally showed when I was looking up muscle spasms and Sjogren’s disease. I wanted to comment that I too have pelvic pain. And like one person wrote, I have burning pain behind my ankles. It’s perplexing and I could only imagine that is due to Sjogren’s.

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 have abdominal sensory disturbance in my abdomen. It’s caused by a lesion on my spinal cord which is a symptom of sjogrens. It sounds like what you may have.

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!

Hi Jean and all, from my mid 20s to my 30s, when I was finally diagnosed with SS, my lower back hurt. It was always hurting but doctors didn't know why. I also developed debilitating lower abdominal pain and joint pain in hands, knees, and feet. Had several colonoscopies and no GI issues found. My 2nd rheumatologist prescribed Rheumate for the GI issues. After taking for 2-3 months not only my GI pain but also my joint pain and inflammation had subsided. I still have occasional flare ups, especially if I forget to take the Rheumate for 3-4 days or if life gets really stressful. I was also taking Plaquenil. I had 1 rituximab treatment 2 years ago and stopped taking Plaquenil. I'm still taking Rheumate (need it for GI pain). Unfortunately the SS dryness is just now starting to bother me again.

Does anyone else spark a flare up when trying to exercise more to get in shape?

Hi to everyone I basically was diagnosed with Sjogren’s disease two years ago and my main problem seems to be muscular skeletal and some neuropathy. I have constant achiness and pain in my legs. They feel so heavy all the time and even though I go to therapy about two times a year at least it always comes back, also have problems with my ankles as well. It feels like their pins and needles, especially with my right ankle. The right inner part of my ankle feels like it is burning, stinging, and a lot of swelling there again I have been to physical therapy for the last five years, I cannot even tell you It’s hard to work out because I have flares all the time several times and it’s mainly in the ankle and it in the legs is very frustrating trying to stick with an exercise program when you have the constant pain every day it’s very frustrating. In fact it has caused me to have absolutely no confidence anymore so I can understand with everyone and I can so relate. I was taking two years ago Hydro chloroquine and it seemed like it helped but naturally, I went off of it thinking that I would be able to conquer this never ending battle feel like I will need to go back on it again. Sjogren’s totally feels like it takes over somebody’s life. I have to try to manage it, but the flares are incredibly hard with my ankles and my legs, so hoping at some point to be able to work out again, even though it seems hard to do so. I will start back on the medication again. Hopefully it will help with the flares the fact that I don’t have a good diet and the fact that I know sugar is a major inflammatory. It is hard to break the habit, but I know I need to , I really don’t have dry eyes I do have a dry mouth and a dry nose, but it seems like the main problem that it affects is muscular, skeletal in my legs and neuropathy and stiffness and pain in my ankles I realize at this point that I have to take medication because the flares are very constant now more than what they used to be so I’m hoping to go back on the medication and hopefully I can start to work out again right now if that’s where it affects me the most with trying to live a healthy active lifestyle thank you to everyone who has left their experiences it feels better, knowing that you’re not alone in this journey with Sjorgens disease

I am about 1 year in of the goose chase of symptoms and doctors to a lip biopsy scheduled this week . My ENT that took 4 months on a referral to see said he was sure it would come back as Sjoegrens. Hoping a diagnosis that is clearer leads to referrals to John Hopkins, or Mayo, or ucsf… and immunosuppressant meds. My nervous system and joint pain are the most unbearable. Numbness. Tingling. The sleepy dead weight feeling. Stick neck. Headaches. Digestive tract is affected too. Got SIBO positive test on gut bacteria when my gastro doc ordered it. Major weight loss. 20 lbs in 7 months. I’m tiny to start with. Antibiotics for sibo making all symptoms worse. Going to have to quit my job, I think. Reducing hours doesn’t seem enough. Working out? Sigh. I wish. Short walks and stretching only. Diet? Only rice, healthy meats, zucchini, carrots, oatmeal, blueberries, oat milk, lettuce. No sugar or gluten or dairy or other no nos for months. Sadly… this is not helping. Depression at zero quality of life is real. I’m a physical and mental health burden on my husband and kids. I will go to more appts. Do the things, but I’m not optimistic.

Dale, I began having pain in my thighs in 2009. I saw numerous doctors and finally had a diagnosis of Persistent Sjogrens Syndrome Neuropathy from a Rheumatologist in late 2010. One of the medications we tried was Plaquenil and it made me hallucinate. During my 15 years of dealing with this and trying many different medications, it seems the only thing helping is pain medication. I also take Amitryptaline for the neuropathy in my feet, but my thighs burn, tingle, are sensitive to touch, and hurt practically 24/7 from any use of my thigh muscles. All pain is from my knees to my hips. I am now living in my 5th state during these 15 years and this Rheumatologist has suggested I try Rituximaub. He says it could bring me significant relief but takes 4-6 months for full benefits.

Can you tell me how you were treated with it, how well it worked and if you would recommend it? I just keep taking more and more pain medication. Thank you.

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 haven't been diagnosed with Sjogrens yet but it's on the list of possibilities with my endocrine doctor and am seeing rheumatology soon. My symptoms have been ongoing for almost a year and I was admitted to hospital with dangerously low phosphate levels and have shown in my urine that my body is phosphate wasting. They are trying to figure out between endocrine and rheumatology what is causing this. My constant and ongoing symptoms are incredibly dry mouth and nose/throat. Constant sinus problems which mean I barely breathe through my nose. An extreme level of fatigue/depletion that is something you can't explain and very sore knees, neck, back. My knees feel like they're burning and vibrating sometimes. I also get random vibrating in areas of my body and I think it's my phone in my pocket until I realise I don't have it with me. I also get random patches of skin with goose pimples like when you're cold but happens when I am not cold and only in patches.

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 .

I feel your pain too! My ankles hurt so much. Humidity exacerbates it. I’ve been on ropinirole for the restless legs, very helpful, I us a low dose muscle relaxer when things get severe.

Does anyone still take methotrexate? It’s bad enough to deal with this pain, but losing my hair is awful.

I’m on Methotrexate and I feel like it’s help my joint pain somewhat. I am definitely losing my hair. The one thing I have left. I have SS, possibly lupus too, a positive RA factor and the wonderful Stiff Person Syndrome. The one Celion Dion announced she has. That causes extreme muscle spasms and stiffness. I’m on diazepam, baclofen and a cocktail of meds for sleep that don’t keep me asleep. Since the SS diagnosis I have the heaviness in my thighs, my veins throb ( compression stockings for that and elevation). I do take anything for pain. the bones in my back are killing me!! I already have herniated disc from the top to the bottom from car accidents. I don’t know if they’ll even give me pain meds. I’ve pulled my 3 times this month. I get IG for the Stiff Person Syndrome. I don’t know if I should stop the Methotrexate bc I can’t stand the hair loss. Is the joint pain in my hands and knees going to get worse? Do I take the chance? Hell.. I don’t leave the house except to go to the doctors. Thanks for listening. I pray for all of us.

That’s the way it feels with my ankles. It feels like there’s bugs crawling around underneath my skin. In addition to the stinging or burning of the nerves that’s exactly the way it feels with my ankles is it feels like bugs are crawling underneath my ankles, and even when I prop up my feet, it still feels like I’ve got bugs crawling underneath. My ankles is very frustrating, but I can relate

I’m 22 years into Sjogren’s. I experience Neuropathy (burning & tingling) in my feet & legs daily & often throughout the day.
If you haven’t seen a Rumatologist it would help to do so. They specialize in Autoimmune Diseases. Don't wait! Go soon! You’ll Be Glad You Did.
Best To You!

I have been experiencing tingling in my right hand whenever I use it. I am right handed. From trying to open a jar or jug to brushing my dentures, trying to write, I also have essential tremor. I can be sitting and doing nothing and it will tingle.

Yes!! My whole body is burning and prickling even my lips tingle. My dr thinks I have hip bursitis... too much inflammation. So much burning pain misery. I think stress makes it worse I'm quitting my job..cant deal with stress right now. I also suffer terrible constpation.

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