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Sjogrens syndrome and fibromyalgia

Jun 08, 2016 11:10 PM

About a year or so ago, my pain got so bad that I could no longer work, take long walks, sit in a chair for long, or drive. My life seemed to just stop! Dr diagnosed me with Sjogrens syndrome, osteoarthritis, inflammatory arthritis, fibromyalgia, and degenerative disc disease. I can't explain the fatigue, pain, depression, and fear that I felt. Thankfully I have an amazing husband who keeps me laughing. New Dr recommended exercise to ease the pain. I really do try, but if the pain doesn't hinder me, the fatigue does. On a very good day, I will clean my house (vacuum, dust, sweep) but then it takes me 3 days to recover. I used to be so active, I worked hard and played harder. Now I use a cane or walker to get around. That's my story. But I keep on smiling anyway!

Jun 09, 2016 12:51 PM

Welcome to our community family Wiltedrose! I'm sorry your life has been turned upside down by your health issues. You've joined a very helpful, supporting, & understanding group of people. We all differ in many ways, but we all understand chronic pain.

I completely relate to your story, as I have the very same dx except inflammatory arthritis, although I have many other chronic health issues (many chronic pain kind). I took FMLA in 2010 to have a pelvic mass removed, then head to quit because the damage from the mass led to 8-12 mos recuperating time. I'd already been struggling with fibro since 2007, but it wasn't dx until 2012, the same year the found pelvic congestion syndrome, which required more surgery. It seemed like i was constantly battling more health symptoms s and I complained of pain, fatigue, dryness, etc. When I broke out with a rash inside my mouth that needed biopsying we found out I had sjogrens, and a month later hypothyroidism. I'm so allergic to so many meds that nothing was helping the fibromyalgia (cymbalta did for 6 months then it started causing psych side effects). When I was started on plaquenil for sjogrens it also helped with the fibro. My daily avg pain dropped from 7-8 to a 3-4, but nothing is touching the easily fatigued issues. I still try and exercise, whether walking the treadmill, gentle stretches, or hand weights & stretch bands. When I am able to exercise i do feel better, though some days I really have to push myself through the aches in my joints and muscles. But on days/weeks that I cannot exercise i don't beat myself up. It's taken me for years to accept I'm disabled and will never work again. It took another year to learn to listen to the signals my body sends out & pace my activities apart with rest periods: what triggers pain, what helps, when to stop, what to avoid. You are so right about doing some activity sometimes requires days of recuperating. Getting a shower, drying my very short hair, & dressing take 45-60 minutes, then another 30-60 to rest.

No one without chronic pain can comprehend this. But my family who has witnessed my struggles is very supportive. Its a blessing to have family support. It's very good that you're hubby is so supportive. A positive outlook is very helpful too, but none of us can stay positive all the times. As positive as I try to be, depression & anxiety sometimes grab hold and it's hard to shake; usually under stress. I have met so many wonderful new friends here, who've made suggestions that I've tried. I'm now on vitamin D3 & magnesium supplements, and I'm trying to eat healthier with more fruit & veggies, less sugar, and less processed foods (cereals, poptarts, junk food etc). I hope you will find helpful suggestions too. Hugs & prayers as you find your best coping methods! 🙂💕🙏🌼

Jun 09, 2016 1:02 PM

Thank you so much! I tried giving up my sweet tea, I would drink a gallon of water a day. I lost 5 lbs and went to the bathroom a lot, but other than that it did nothing to make me feel better. I do battle depression like you, when stress is high. I am working on getting disability approved but my new rheumatologist does not believe in it. It is funny how 3 out of 4 drs told me I should go ahead and apply for disability. I stayed on FILA for a year before my employer let me go. I would love nothing more than to go to work, but I have not had a pain free day in 3 years (started with broken tail bone and 2 surgeries ) there are days I can't even roll over in the bed. And we never know when or how bad the flare will be or how long it will last. But I'm hanging in there

Jun 09, 2016 3:13 PM

Wiltedrose, yes yes yes! I do exactly the same thing with housework . If I feel well enough to clean house it is guaranteed to put me out for 3-4 days. So then I lose track of everything else and barely get dinner made. It has to be some menu that is super fast to make because I can't stand up long enough to do it. My husband just left on a 5 day mini vacation without me. I had so much pain and trouble walking last time and now I am much worse than I was two years ago. I am doing my part of what the docs say to do, but feel like I am sinking into more and more pain. Yes I am exercising and it does help some to feel a bit stronger so I can grit my harder with the pain. Part of me wants to be with him on vac so much, and the other part knows better right now. Good luck to you and hang in here with the rest of us pain peeps! Welcome.

Jun 09, 2016 3:22 PM

Oh sweetie, I know the struggle of wanting to be on vacation trips but knowing you can't handle the exertion. I took a trip to Georgia with my husband to visit 2 of our girls at college. I rested before dinner and went to eat with them but then I was hurting bad and exhausted so we went back to the hotel room and they hung out with us in the room so I could rest. When we returned home it was a week of bed recovery then 3 days of being able to get up and move before I could leave the house again. I do know that our hot tub helps A LOT! Hugs to you!

Jun 09, 2016 9:36 PM

Welcome wiltedrose, I also suffer from Sjogren's Syndrome as well as many other things. I was just DX'ed a couple months ago and had my first Rheumatologist visit today. I pray that everything gets better soon for your pain and filing for Your disability. Again welcome to the community!

Jun 09, 2016 9:39 PM

Thank you moparmom! They are still learning about sjogrens syndrome. It is so much more than just Dry eyes and dry mouth. Good luck and I hope you get yours under control and in remission soon

Jun 09, 2016 10:12 PM

Oh how I can relate doing chores isn't on the top of my list of stuff to do. I only do what I can and leave the rest its not worth not being able to move it all.

Jun 10, 2016 12:10 AM

I do what I can to take the load off of my hubby. He works 2 jobs and then comes home and has to cook and clean and take care of me. Tried to hire help but people are either lazy, don't show up, or don't know how to clean. Guess if I can't afford pros I better do it myself and hurt lol

Jun 10, 2016 7:36 AM

Wiltedrose, I had no idea sjogrens was more than just dryness. I've between battling dry eyes for about 15+ years. It was a blessing when the oral rash got biopsied & dx sjogrens. In the past 6 mos my finger & hip joints have been bothering me. I saw my Ortho doc who did x-rays, said OA is now in the hip sockets but he couldn't tell on my hands. At a follow up with my PCP, he said that sjogrens will get in the joints and that's why my fingers were swelling, getting hot, & hurting. Who would have guessed that? I really wish more of these"dry eyes" commercials would go in to how it could be sjogrens, to make people aware.

Jun 10, 2016 9:30 AM

They will eventually. From all of the information I have read, they are still finding out new things about sjogrens, I have seen 4 rheumatologist (because if I don't trust a dr I get a new one) you would be surprised by how little some of the rheumatologist know about the disease. I always research what they tell me. My nurse friends tell me that if you are near a Mayo clinic, you should go there because they are doing new studies on the illness now. I have read so many articles and comments that I get angry that the rheumatologist do not keep up to date on this, as if it is not as important as other illnesses

Jun 10, 2016 11:02 AM

Yeah, my rheumy doc has the same attitude. 🙂💕🙏🌼

Jun 10, 2016 11:04 AM

Remember you are your on advocate for your health. Don't settle for less than you deserve. I am learning that the hard way.

Jun 10, 2016 11:11 AM

I'm actually trying to find out about another rheumy doc in my town so I can transfer. It's getting hard for me to drive with my tremors. I hope this one is a good one!

Jun 10, 2016 11:14 AM

Yes! Fingers crossed! I know about the driving, I have to get someone to drive me almost everywhere. And if the new rheumatologist is not up to par don't hesitate to try agin. Please keep me posted. Would love to hear your success story!

Jun 10, 2016 11:07 PM

I am loving mine so far. It didn't matter what blood work my primary pulled he is pulling his own. I go back in 6 week's after i see an eye surgeon about the dry eye testing and to see if my eye's will hold up to a medication.

Praying you two can find the right Rheumatologist! 🙏💕🌞

Jun 10, 2016 11:51 PM

I'm having the fringes, joint swelling getting into areas not (yet?) Dx with OA. Don't know that these areas get hot... and no oral rash so I guess that means no Sjogren's, yay. But you guys got me thinking. Haven't had a rheumatologist in 3/4 years. At what point did you decide to see one? They treat OA and can other joint issues, and... ?

Jun 11, 2016 12:03 AM

Fringes? ?dry eyes, trouble swallowing, joints painful in new ways and areas.
((Gentlest hugs to all)) best hope for all to have pain relief.

Jun 11, 2016 9:13 AM

My primary sent me to a rheumatologist. It was because of my pain since I never thought to mention to primary about my dry eyes (did know at the time that my eyes "running" all the time was due to the dryness) one day all is fine and I have people telling me to slow down, we were riding motorcycles and four wheelers and hiking....then I woke up one morning moving slow, couldn't walk very fast, started forgetting things, hurt all day everyday but I kept working and it got worse and I eventually couldn't even dress myself. Things are slowly getting better but my primary knew right away something was wrong when I slowed down. Love love love my primary. Hope you find a great rheumatologist. I think it is important once you start seeing a rheumy you should keep up at least 6 mo to 1 yr visits

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