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Thread: Anyone here have Sjogren's or Lupus?

  1. #1
    Super Member AlwaysQuilting's Avatar
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    I was recently diagnosed with Sjogren's syndrome.
    I'm taking Plaquanil and it does help the pains in my joints (although it doesn't completely go away) but my anxiety is through the roof, my memory is non-existant, and I think my seizures, that were considered idiopathic back in the 70s, have begun again. Is this normal?
    On the lesser side the sensations in my fingertips seems to be diminished. Not numb or tingly, just diminished. As well as less strength in my hands. I'm having trouble opening jars, and I live alone.
    What symptoms have you been having?

  2. #2
    Google Goddess craftybear's Avatar
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    take care of yourself,hugs hugs

  3. #3
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    Take care, praying for you.

  4. #4
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    my mother had it - drs didn't know anything about it then - niece researched her symptoms, then Mom went to another doc and concluded it was Sjogrens

  5. #5
    Moderator Jim's Gem's Avatar
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    My mother in law has it. I don't recall memory loss because of it, (though she is struggling a lot with that right now)
    She has not had seizures. She is on an anxiety med but we're not sure why.
    I guess I am not a whole lot of help here am I?

  6. #6
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    Hi Nadine I have Lupus Diagnosed when I was 31 Years I am now 64 I have good days and Bad days my hands are not as strong as they use to be my arms hurt and my legs hurt all the time and I stay cold all the time. some days I don't want to even get out of bed But i am going to just hang in there and do the best i can and Pray alot. take of Yourself. I will Keep you In My Prayers

  7. #7
    Super Member irishrose's Avatar
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    I have Lupus - diagnosed when I was 37, but probably dates back to when I was 16. My symptoms are very much like the previous poster's. Are you sure the brain fog isn't from the meds?

  8. #8
    Senior Member Born2Sew's Avatar
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    I have Sjogren's, Rheumatoid Arthritus, Lupus and Osteo Arthritus too. I quit the plaquinil a while back because it was making me so despondent and lethargic. It did help with dry eyes, but other than that it didn't do much for me.

    Sjogren's can cause a lot of issues besides just dry eyes.
    Brain fog and memory issues, as well as anxiety go hand in hand with these auto immune conditions.

    My legs and feet are killing me today, and I have trouble with my fingers locking up. OPening jars is getting harder to do and I drop so many things. Go to pick them up and drop them again.... Lately I've been such a clutz. I've cut myself on a sharp butcher knife, burned my hand on steam, dropped my rowenta iron on my foot, (luckily it was not on at the time)...

    As far as opening jars, if I just can't get one open, I ask hubby. Since you live alone, you might try running hot water over the top of the jar, dry off and then try opening it. Also there are those thing a ma jigs that are called jar openers that are supposed to work. My mom uses mine, but I can't seem to get the hang of it.

    Hang in there, you are not alone. PM me anytime if you just need someone to visit with.

    Hugs...

  9. #9
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    Hi Irishrose you are so right, when i was 16, 17, I always felt sick when i stayed in the Sun To Long. When I Got Married in !966 I told My Husband i felt Sick all the time,after my daughter was born it got worse and I found a Doctor to tell me what was wrong with me. Because i thought i was Lossing my mind But you Learn to live with it the one thing I have learned to not let anything Stress Me out,it will Make you have Flarups.

  10. #10
    Senior Member grammy17's Avatar
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    God bless you!

    I was diagnosed with Sjogren's about 5 years ago. Realized then that I had it 20 years ago. I have dry mouth and eyes. Use eye drops and Oasis mouth wash. I have aches -back, legs, feet and hands. I also have osteoarthritis so contributed the pain to that. I'm on no pain meds see an acupuncture doctor and my sciatica is relieved. Guess I'm pretty lucky. I surely wish you well, sounds like you are suffering.

  11. #11
    Super Member AlwaysQuilting's Avatar
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    Quote Originally Posted by grammy17
    God bless you!

    I was diagnosed with Sjogren's about 5 years ago. Realized then that I had it 20 years ago. I have dry mouth and eyes. Use eye drops and Oasis mouth wash. I have aches -back, legs, feet and hands. I also have osteoarthritis so contributed the pain to that. I'm on no pain meds see an acupuncture doctor and my sciatica is relieved. Guess I'm pretty lucky. I surely wish you well, sounds like you are suffering.
    I'm wondering if my rheumatologist was correct when he told me (on several visits) that I have Sjogrens. I have joint aches, but do not need to use eye drops or suck on anything to keep my mouth moist. Although growing up my dentist told me my mouth was too dry. And my eye doctor would never let me wear contacts (back before the soft moist ones) because my eyes were too dry. He put a pair of the hard ones in and was amazed that I didn't have tears.

    Since Xmas 2010 I've changed what I eat entirely for other health issues. No added salt, no sugar, no meat. And my aches have dimished alot although they haven't gone away entirely. He took me off the Plaquinil for adverse effects. Right now I'm not taking (or needing) anything. Makes me wonder if its Sjogrens at all.

  12. #12
    Power Poster nativetexan's Avatar
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    for opening jars, find some of those round rubber discs. perhaps at Bed,Bath and Beyond stores. good luck.

  13. #13
    Super Member Scissor Queen's Avatar
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    I have this thing, <http://www.pamperedchef.com/ordering...4992&words=jar opener> It works. I don't have anything to do with PC.

  14. #14
    Senior Member Born2Sew's Avatar
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    For all of you ladies who fight the battle of having any of these auto immune illnesses, know you are in my thoughts. This past month has been like a roller coaster ride for me, and the emotional turmoil has really sent me flaring. The cold weather doesn't help either.

    DD went to the eye doctor a while back to get contacts. He almost refused to give her any becaue he told her that she has no mucous membranes on her eyes. She called to tell me about it, and I said, Oh dear, you have Sjorgrens! She called the doctor back and asked if he thought she had Sjorgrens since I do. He told her he had no idea that she had family members with it, and to go get herself checked immediately. Sure bet, since she has no insurance...

  15. #15
    Super Member grannyp70's Avatar
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    Hi Nadine, yes I have Lupus, most of my symtoms are kind of like yours, my memory is totally gone, can't remember anything anymore, every join in my body hurts all the time, but sometimes when it really flares up I can't do anything for a few days. I have no strenght in my hands either, and when it flares up they swell until they are double in size and the pain is unreal. I have had it for about 6 years and my biggest problem is that I am allergic to all the medicines for it so I can't take anything at all, I have tired several different kinds of meds and they put me in the hosptial for a week so there isn't anything out there yet that I can take, so I really have a hard time, but I am not going to let it get me down, I am still trying to quilt some when I can. But I have several other things wrong with me as well but I will continue to fight it for as long as I can and not give into it, so you take care and keep doing what you love to do when you can. Don't let it get you totally down. OK. HUGS

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    What wonderful inspirational people you are..

  17. #17
    Senior Member Candela59's Avatar
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    I just got the Sjogren's diagnosis from my doctor today. I've had issues for almost 20 years after a bad case of Mono but the last 4 months have been murder.

    I'm so tired I can barely function, dry eyes and mouth. The pain is worse at night. So sore from aches and joint pain all night long.

    Doc also thinks I have Fibromyalgia and possibly Lupus just for good measure. Ain't life grand :shock:

    I have also noticed brain fog the last few months. I find my self struggling to find words when I'm talking and just spacing out too.

    I just got a script for the Plaquinel today but am debating whether I want to take it....I hate taking meds!

    I just hope it is as bad as its going to get. I'm going to look into diet and see if that gives me some relief.

    Good luck to all of you...thanks for letting me vent!

  18. #18
    Super Member AlwaysQuilting's Avatar
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    Quote Originally Posted by Candela59
    I just got the Sjogren's diagnosis from my doctor today. I've had issues for almost 20 years after a bad case of Mono but the last 4 months have been murder.

    I'm so tired I can barely function, dry eyes and mouth. The pain is worse at night. So sore from aches and joint pain all night long.

    Doc also thinks I have Fibromyalgia and possibly Lupus just for good measure. Ain't life grand :shock:

    I have also noticed brain fog the last few months. I find my self struggling to find words when I'm talking and just spacing out too.

    I just got a script for the Plaquinel today but am debating whether I want to take it....I hate taking meds!

    I just hope it is as bad as its going to get. I'm going to look into diet and see if that gives me some relief.

    Good luck to all of you...thanks for letting me vent!
    I hope you get some relief. I can't take the Plaquinil anymore because of the adverse reactions.
    But since I quit eating meat and sugar (since Xmas) I'm feeling so much better. I posted a day or so ago that I still have symptoms but my joints have calmed down so much. I don't know if it's actually the foods I've eliminated or maybe I'm just in a remission sort of.
    Good luck.

  19. #19
    tuxedokitty's Avatar
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    Don't have Lupus or Sjorgrens, but have pretty bad Osteoarthritis. Have had both hips replaced, then both hips needed revisions, had extensive massive reconstruction on right femur, and now have OA in my spine. I think these diseases bring us good days, bad days, depressing times and very happy times. I find that often I need to remind myself how lucky I am and just try to turn my thoughts to something pleasant like....QUILTING :), kitties, baking, my church, etc. Hugs to you!

  20. #20
    Senior Member grammy17's Avatar
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    Thinking back, 20 years ago I complained of feeling like I was living in a fog all the time. I didn't see any doctor and just lived through it. Not bothered with that any more. So...there is hope that your symptoms will go away. About the same years, I tried wearing contacts. Couldn't work that out. I was spending a fortune in eye drops. I ham blessed that my symptoms are something I can live with I wish you all well. MB

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