Sjogrens

Posted by cmtg @cmtg, Aug 20, 2016

I have been diagnosed with this and I’m in pain most days and would like to have discussions.

I have had Sjogren’s for a number of years, also. I additionally have RA, fibro, restless leg, spinal stenosis and osteoarthritis. My first diagnosis was with fibromyalgia about 15 years ago. Two years after that, diagnosed with RA, a year later came the Sjogren’s diagnosis, and just about two years ago was the spinal stenosis and osteoarthritis. My Sjogren’s was diagnosed from a lip biopsy. I was on Imbrel for about 5 years and it worked really well until I started to get MS symptoms. Six months after stopping the Imbrel, the MS symptoms disappeared. I was on plaqunil for about 5 years until I started having eye problems (used to have to go to eye doctor every six months and they noticed I started to get retina “puckering” which they could not rule out was caused by the plaqunil, so I stopped taking it). I am currently on Cevimeline (30 mg twice daily), Cymbalta (30 mg twice daily) and Trazadone (50 mg once daily for sleep). I also occasionally use Voltaren Gel on some of my joints when they are really, really bad – but that is not even once a week. I do have daily pain. I also have a daily low grade fever (100 to 101) which started the last three months. Go to doctor this Thursday to figure out what that is about. Oddly enough, I have bad thumb and wrist pain as well and they thought I had carpel tunnel, but I don’t. My nerve tests also came back “normal” but I did not have any punch hole skin tests. Perhaps I should mention something. They (being my regular doctor, my rheumatologist and neurologist) can’t seem to figure out why I have the pain I have in my legs, feet, hands and arms. The joint pain is accounted for, but the nerve pain is not. I also have occasional chest pain and was told it was the connective tissue between ribs that gets inflamed and causes the pain. I perhaps twice a year take a pain pill for pain if it gets just too bad for me to get relief any other way. I have a thermapedic mattress (which I HIGHLY recommend), try to walk or swim daily, take whirlpool baths and try to get massages as often as I can (I’d get them twice weekly if it weren’t so darn expensive – as it is, I get them once or twice a month). I also try to practice thankfulness and be as social as I am able. I still work part time (I am very thankful for that – have had same job for 38 years now and still have 10 years to go before I can collect SS retirement income. I could most likely qualify for SSDI and may have to apply one day, but am glad I can still work part time for now.) I also care for my mother who has Chron’s and Alzheimer’s. I am blessed that my husband is helpful and, for the most part, understanding. I do feel guilty at times that I am a burden. I try to do as much as I can on my own. He does most of the laundry and cooking, though. And he still works full time. But I count my blessings as I know it could be much, much worse. I pray daily for those in chronic pain and with chronic conditions or other health battles. People are correct when they say if you have your health, you pretty much have everything. I never knew before so much in life depends on good health! When I was younger, I was extremely athletic and much thinner. I never smoked or did any illegal drugs and drank rarely on social occasions only. I exercised daily and was into extreme sports. Then I hit my late 30’s to early 40’s and BAM – all the autoimmune stuff started and kicked my butt. I fight back and feel I do okay. But it is very hard, especially in the beginning, for family and friends to understand. Heck, it was extremely depressing for me for several years. I just couldn’t wrap my head around it. Things are much better now that I have accepted it is what it is and I pace myself and do what I can to avoid any “flares” of any of my issues. Right now I am trying to drop some pounds. I have gained about 40 pounds since my ordeal began. It has just slowly crept up on me. It is hard, however, and I worry sometimes about my husband loosing interest because I’ve gotten too fat! After all, what I am now certainly isn’t what he married. I know I shouldn’t be so hard on myself, but I could eat better. I just tend to eat when I am stressed or having a bad day. Oh well, I don’t want to complain. The majority of the days I feel pretty good. I cope pretty well and know I am very blessed. I have wonderful children and fantastic grand kids. I have three wonderful sisters and good friends. My faith is strong, which I believe is what gives me the strength to keep putting one foot in front of the other and not “give in” to my issues. Sure, I have my “lost days” when I spend a day or two totally in bed because I just can’t do any more, but I make myself get up and get going because I know “motion is lotion” and too much “rest is rust”. I am also grateful for this forum. I don’t get on as much as I would like, life seems busy that way, but I do feel a sense of camaraderie when I do get a chance to log in. I know my fight is not being fought alone. God bless all of you!

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@blindeyepug

I have had Sjogren’s for a number of years, also. I additionally have RA, fibro, restless leg, spinal stenosis and osteoarthritis. My first diagnosis was with fibromyalgia about 15 years ago. Two years after that, diagnosed with RA, a year later came the Sjogren’s diagnosis, and just about two years ago was the spinal stenosis and osteoarthritis. My Sjogren’s was diagnosed from a lip biopsy. I was on Imbrel for about 5 years and it worked really well until I started to get MS symptoms. Six months after stopping the Imbrel, the MS symptoms disappeared. I was on plaqunil for about 5 years until I started having eye problems (used to have to go to eye doctor every six months and they noticed I started to get retina “puckering” which they could not rule out was caused by the plaqunil, so I stopped taking it). I am currently on Cevimeline (30 mg twice daily), Cymbalta (30 mg twice daily) and Trazadone (50 mg once daily for sleep). I also occasionally use Voltaren Gel on some of my joints when they are really, really bad – but that is not even once a week. I do have daily pain. I also have a daily low grade fever (100 to 101) which started the last three months. Go to doctor this Thursday to figure out what that is about. Oddly enough, I have bad thumb and wrist pain as well and they thought I had carpel tunnel, but I don’t. My nerve tests also came back “normal” but I did not have any punch hole skin tests. Perhaps I should mention something. They (being my regular doctor, my rheumatologist and neurologist) can’t seem to figure out why I have the pain I have in my legs, feet, hands and arms. The joint pain is accounted for, but the nerve pain is not. I also have occasional chest pain and was told it was the connective tissue between ribs that gets inflamed and causes the pain. I perhaps twice a year take a pain pill for pain if it gets just too bad for me to get relief any other way. I have a thermapedic mattress (which I HIGHLY recommend), try to walk or swim daily, take whirlpool baths and try to get massages as often as I can (I’d get them twice weekly if it weren’t so darn expensive – as it is, I get them once or twice a month). I also try to practice thankfulness and be as social as I am able. I still work part time (I am very thankful for that – have had same job for 38 years now and still have 10 years to go before I can collect SS retirement income. I could most likely qualify for SSDI and may have to apply one day, but am glad I can still work part time for now.) I also care for my mother who has Chron’s and Alzheimer’s. I am blessed that my husband is helpful and, for the most part, understanding. I do feel guilty at times that I am a burden. I try to do as much as I can on my own. He does most of the laundry and cooking, though. And he still works full time. But I count my blessings as I know it could be much, much worse. I pray daily for those in chronic pain and with chronic conditions or other health battles. People are correct when they say if you have your health, you pretty much have everything. I never knew before so much in life depends on good health! When I was younger, I was extremely athletic and much thinner. I never smoked or did any illegal drugs and drank rarely on social occasions only. I exercised daily and was into extreme sports. Then I hit my late 30’s to early 40’s and BAM – all the autoimmune stuff started and kicked my butt. I fight back and feel I do okay. But it is very hard, especially in the beginning, for family and friends to understand. Heck, it was extremely depressing for me for several years. I just couldn’t wrap my head around it. Things are much better now that I have accepted it is what it is and I pace myself and do what I can to avoid any “flares” of any of my issues. Right now I am trying to drop some pounds. I have gained about 40 pounds since my ordeal began. It has just slowly crept up on me. It is hard, however, and I worry sometimes about my husband loosing interest because I’ve gotten too fat! After all, what I am now certainly isn’t what he married. I know I shouldn’t be so hard on myself, but I could eat better. I just tend to eat when I am stressed or having a bad day. Oh well, I don’t want to complain. The majority of the days I feel pretty good. I cope pretty well and know I am very blessed. I have wonderful children and fantastic grand kids. I have three wonderful sisters and good friends. My faith is strong, which I believe is what gives me the strength to keep putting one foot in front of the other and not “give in” to my issues. Sure, I have my “lost days” when I spend a day or two totally in bed because I just can’t do any more, but I make myself get up and get going because I know “motion is lotion” and too much “rest is rust”. I am also grateful for this forum. I don’t get on as much as I would like, life seems busy that way, but I do feel a sense of camaraderie when I do get a chance to log in. I know my fight is not being fought alone. God bless all of you!

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I’d be interested to know if your drs find out what is causing your fevers. I’ve had daily fevers of unknown origin for over 2 years now. If I don’t take a tylenol or aleve when it gets around 101, it’ll keep going up till I take something. Last summer one day was the highest at 103.5 I think it got. The last 3 months I have had days where I don’t have fevers. But not 100% sure as to what the difference is other than in january I started taking 2000mg of mycophenolate/ day for restrictive lung disease. Would love a path to follow that might get rid of the fevers for good.

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Those of you with severe symptoms, have you been treated with Levaquin?

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@melperez1223

New to the group and curious about issues secondary to Sjogren’s Syndrome. I was diagnosed through blood work a few years ago in my mid 40’s, but painful joints, strange rashes, dizziness and chest pain sent me to the Rheumatologist. Sjogren’s was not on my radar, but all that came back as absolutely positive. Tried Plaquenil for 4 months, but developed hives and had to move to Imuran for the next 2 years. However, my symptoms have come back with a vengeance-dry eyes, dry mouth, really painful joints, stomach issues and crushing chest pains. In Jan., I started methotrexate weekly as the Imuran was not helping at the maximum dosage. I’ve not seen any improvement with anything except for steroids at a high dose and oxycodone.

Meanwhile, I’ve been going to my Primary Care doctor, Neurologist and Gastroenterologist. The Neuro did a nerve conduction test that came back as normal, but decided to also order skin/punch biopsies. All 5 test sites came back positive for severe nerve damage/peripheral neuropathy. This week, I went back to visit and was told that I also have autonomic neuropathy. We think it’s secondary to the Sjogren’s. I do have 13 brain lesions, but am negative for MS and so far, do not have Diabetes.

Is anyone else experiencing such issues?

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@melperez1223, I went to a Neurologist in August, but he was more concerned about some strange sudden headaches I was getting, which have now gone away. All he did was test me with a plastic hammer. I wasn’t too impressed. I’ll probably find a new Neurologist at some point.

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@colleenyoung

Welcome to Connect @cmtg. You have landed in the right place. I’d like to introduce you to a few other members who also have Sjogren’s. Please meet @johnwburns @blindeyepug @meemer @kyjeanne @uncbball and @ccorrconro for a start. I’m confident others with join this discussion too. I also encourage you to browse the other discussions in the Autoimmune Diseases group https://connect.mayoclinic.org/group/autoimmune-diseases/

CMTG – why type of pain do you experience and what methods or treatment do you use to try to manage it?

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have you tried Xylimelts? These tiny discs stick to your gums during the night and give SO much relief for dry mouth. They can be used during the day as well; but, I only need them to get a good night’s sleep.

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@colleenyoung

Welcome to Connect @cmtg. You have landed in the right place. I’d like to introduce you to a few other members who also have Sjogren’s. Please meet @johnwburns @blindeyepug @meemer @kyjeanne @uncbball and @ccorrconro for a start. I’m confident others with join this discussion too. I also encourage you to browse the other discussions in the Autoimmune Diseases group https://connect.mayoclinic.org/group/autoimmune-diseases/

CMTG – why type of pain do you experience and what methods or treatment do you use to try to manage it?

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Dry mouth? I use Biotene mouth wash. It’s formulated expressly for dry mouth. A quart lasts me about three months when I gargle with a teaspoon before retiring and whenever I get up to urinate.

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I use Biotene toothpaste, mouth wash and carry the mouth spray in my purse. It helps a lot. I also keep water with me constantly to sip on throughout the day. I was diagnosed with Sjogren’s from lip biopsy. I was on Plaquinel for a number of years, but started having eye issues and stopped the same. My doctor wants to try me on metatrexate next. I hope it works! So far, my Sjogren’s has not been super bad – just dry eyes, skin, mouth, etc. It has not affected my kidneys. (Please excuse any bad spelling – I never could spell well!)

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Hi I have had Sjogren’s for more than 20 years. Pain can be a significant factor with Sjogren’s. First and foremost many people with this disorder also have fibromyalgia which can also cause pain. It’s important to figure out if you have any other autoimmune disorders associated with Sjogren’s. Once you have one autoimmune disorder you are prone to other autoimmune disorders. I would also suggest you see a pain management doctor. Also alternative therapies like acupuncture can help. Be happy to talk more if you like.

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Hello @jaynehrnyc,

Thank you so much joining Connect with your insights; I know that members on this discussion will appreciate all the information.

Since you mentioned the possibility of multiple autoimmune disorders, you may also wish to view these discussion:
More than one auto immune disease?: http://mayocl.in/2ixI3Lm
Have a few autoimmune disorders – now have consistent low grade fever: http://mayocl.in/2pfPYQO

@jaynehrnyc, do you have fibromyalgia? How do you find relief from pain and discomfort?

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I have RA and fibromyalgia. There is little pain relief. Some days I feel so good, I go without my cane. I use the cane to assist and keep me from falling. The sun on my feet and legs feels good. But I live in Oregon on the coast where Winters are wet. I had issues with the drugs used for RA. I refused any narcodics. I hurt all the time and just try hard to put it out of mind. I try to eat healthy. I take my dogs to dog park as I just cannot walk them. When I have a good day I feel like “maybe it is going away” not. I live in an area where I have to travel over 2 hrs to see a specialist. It is just to beautiful here to even think about moving.

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@oregongirl I, too, have fibro and RA in addition to Sjogren’s, Restless Leg, and spinal stenosis. I am just like you. I do NOT like taking narcotics. I take Cymbalta and trazadone. I had bad side affects with Enbrel and Plaquinil. I haven’t been on any thing for a while and my rheumatologist wants to try me on methotrexate. I am not too thrilled about it. I try to eat healthy and stay active. I used to be very active and involved in extreme sports, but I can not do any of that any longer.
I find water exercise very helpful. I live in Texas, so at least I don’t have to worry about super cold weather. It does get unforgivingly hot, however! I do positive thinking and pray. But the pain is constant. Warm jetted tub helps me and sleeping on a thermapedic mattress helps a LOT! I worry about it getting worse as I age (I am 56). My husband is good at helping out, and I still work part time. I worry when I won’t be able to work at all. Disability doesn’t pay that much, and I have worked for the same person for 37 years (who isn’t in great health, either). I pray you find some relief. I also have good and bad days. I am home today because a front is coming which causes my body to flare!

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I have recently been diagnosed with sjogrens and knowing this I now know I have had it for many years yes I have the typical dry mouth dry eyes severe sinus problems I have tinnitus in my ears I dont know if thats related to sjogrens. The Dr. Who diagnosed my Sjogrens totally minimises my disorder to the dry mouth eyes and sinuses however I have been having problems with the bile ducts in my pancrous and liver I have had 3 sugeries in 5 months to put stynts in my bile ducts to help open then up its been 3 months sunce my last surgery and I think its time for another as my upper right side is in a lot of pain again and just last night on the sjogrens foundation websight I read about primary biliary colangitis and autoimmune pancreatitis that are symptoms of sjogrens and describe me to a T however my Gastro Dr just seems to think im crazy so much so that he perscribe trazadone for me telling me I was making up my pain yet he is the one who has had the stynts put in me he however states that my pancreas should not be in pain he doesnt know why im in pain hence the trazadone. I also in a year have lost almost all of my top teeth and will be getting my dentures next week and that will provide a host of new problems with my severe dry mouth yes I use all of the dry mouth meds yes they help yes I use drops for my eyes as they already have scarring due to the dryness and I use a sinus spray for my sinuses. I also lose sense of smell and taste at times I am severly tired all the time and just 2 years ago I was avery active person and 4 years ago when I lived in the mountains of NC I was a single mom who worked 2 jobs and also went hiking in my free time. I am recently on methatrexate for sjogrens and psoriatic arthritis and im on pain meds for a past back surgery and joint pain it helps some but of course makes the mouth even drier. My main problem is not knowing where to turn for this pancriatic and liver bile duct problems since my Dr’s like to dismiss my sjogrens disease. I think I see an appointment to the Mayo clinic in my future. If anyone has any sugestions my ears and eyes are wide open to anything at this point I have been almost bedridden fir a year and a half and I would love to have some form of my life back I just want to be abke to do small things like clean my house and go to the store once and a while. Oh my new problem is severe headaches anyone else have that problem?

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I forgot about the terrible brain fig I suffer from its no joke its seriously bad to the point that my mother in law comes by frquently during the day to make sure I have put the towels in the oven and turned it on or something. Sorry to have to post all of my problems but im in serious need of some guidence, help and just some compassion would even be nice.

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@cmtg

I have all the symptoms above you described except never had a lip biopsy, Dr said not needed, the diagnosis is pretty clear. It took seven years for diagnosis. I guess did’t make myself clear to you.

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My nausia is so bad I take zofran once or twice a day depending on how bad my nausia is because I was throwing up 6 to 8 times a day if you read my post tho im also having liver and pancriatic bile duct problems thay I think are due to sjogrens syndrome so that may account for my throwing up not sure but yes I have a lot of nausia

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@kkteel1

I forgot about the terrible brain fig I suffer from its no joke its seriously bad to the point that my mother in law comes by frquently during the day to make sure I have put the towels in the oven and turned it on or something. Sorry to have to post all of my problems but im in serious need of some guidence, help and just some compassion would even be nice.

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@kkteel1, I’m sorry you’re going through so much, and most of all, that you don’t have an understanding doctor. Who diagnosed you? Do you have a rheumatologist? My rheumy is the only one who understands. If you don’t have a doctor who is informed about Sjogren’s, you might consider searching for one who does.

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