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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

— 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

— Sep 3, 2024

I was diagnosed with Sjogren’s after seeking medical attention for sore anklesin 2015. I’d never heard of this disease. I’ve since learned this is far more involved than just dry eyes and dry mouth. I now have constant back pain like it’s deep in my bones, tingling/numbness in my feet, ankle pain and restless legs. I can’t sleep due to the pain. Ugh!

A neurologist ran a Myeloma Detection panel on me that came back with markers for Multiple Myeloma. Has anybody else had this test done? Back pain is the first symptom of this blood cancer which why I believe he ran this test on me.

Reading all these stories where our aches and pains are so similar, I believe it’s time to educate our doctors on what this disease really looks like.

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