Diagnosed in December, a bit lost and not sure what to think about all of this

Welcome New Member Checkin
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At the time I was diagnosed, I was also diagnosed with 'possible' Thyroid cancer. I'm due for a total thyroid removal on March 10th of this year. So, it seems like the Sjogrens is taking a back seat, at the moment.

I generally have dry eyes, but not that bad and dry mouth, which sometimes makes it hard to swallow etc. Choking on food, coughing.

But the worst part is the joint pain. I already have arthritis in both my hips and two knee replacements. So, my knees swell and the muscles tighten and my hips hurt all the time. Before the doctor put me on Ultracet, I couldn't sit for long periods of time, or lay down and sleep.

I was popping Tylenol just to get some relief, and now I have it for the moment.

I am doing Physical Therapy, which is helping me deal with the hip pain and strengthen my hips and lower back.

I kinda feel like the Sjogrens made the arthritis WORSE. I knew there was arthritis in my hips, but it never bothered me. I felt it was something I would have to deal with further down the line. But here I am with chronic pain.

I am a 48 year old, single female. I live alone, but not far from family, which is great. I have no steps, which is a blessing now, they are hard to do.

If it wasn't for the swollen glands I had and a very good primary doctor, I would have never known. I never heard of this syndrome before.

I'm glad this site is here.

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Hi and welcome! Sounds like a lot has been dumped on you all at once. The people here are a great support and collectively know more than many Drs (sorry but that’s my opinion and I’m sticking with it). Now that you are diagnosed there is a potential to get some help and treatment for those nasty things we all live with from S. In most cases it seems that arthritis is part of that whole syndrome (again that’s my observation and it is true for me personally). I had one knee replacement and was in line for another but was helped enough temporarily that the 2nd knee replacement has been put off indefinitely. Before I knew what was causing all my symptoms I couldn’t do much to get help in treating them but that has changed but my Rheumatologist has really helped. Take care and ask lots of questions here!

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Hi Roulette! Welcome to the group! Glad to have you with us!

You surely have had your share of 'ills and ails' for being so young, and are handling it well. I have arthritis too, and my right hip has been KILLING ME, so I certainly understand a lot of what you are up against! I'm just starting Humira and keeping my fingers crossed that it helps!

I hope all goes well with the thyroid surgery, it's just best they take care of it, and hopefully you can get that off the list soon.

Sending my very best to you,

SK

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Hi Roulette,

Sorry to hear about your situation. So glad you found this site though. It will help you realize you are not going crazy. Your symptoms are real and your feelings matter. I will be praying your surgery goes well and takes care of that major issue. My aches and pains come and go, so hopefully you will soon have a period of time that things arent so bad and you can enjoy life a little more. I try to make a little mental list each day of the good things. The sunset, my husband that loves me, my warm home, grandchildren. Some never get to have those simple pleasures. Have a good day and know you have a lot of people on your side.

Lucy

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Hey...sorry to hear you are dealing with all of that. And you are right. Bad enough we have the plain old joint aches that go with SS, I have bursitis in the hips which can be very painful but it is inflammation of fluid sacs so it makes sense plus chronic shoulder issues too. Poet is very correct though in making sure you see beauty or peace in the little things. It goes a long way towards keeping you from getting lost in the issues we have.

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Hi! What do you do to get relief for the bursitis pain in your hips and shoulders? I have a terrible time with it.
EnjoyLife said:

Hey...sorry to hear you are dealing with all of that. And you are right. Bad enough we have the plain old joint aches that go with SS, I have bursitis in the hips which can be very painful but it is inflammation of fluid sacs so it makes sense plus chronic shoulder issues too. Poet is very correct though in making sure you see beauty or peace in the little things. It goes a long way towards keeping you from getting lost in the issues we have.

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After finding out I have SS the Rheumy told me I also have bursas in my hips and bursitis in my shoulders. She also said I have Undifferentiated connective tissue disease. Don't know if they are the same thing. I get shots in my hips every 3 months. I can only get 2 shots at a time so have been putting off the shoulders because in 3 months the hips are worse. I can't pick up my granddaughter anymore, which really hurts but she is only 4 and knows grandma hurts and can't do some things. I also take thyroid meds. I don't know if that is related to the SS. Good luck with your surgery I hope you get to feeling better soon.

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I saw my ortho surgeon recently. I have some arthritis in my left hip. Right hip seems fine. No RA. But both my hips hurt sometimes. So much I need a pain reliever and Tylenol to function daily. I think the SS exasperates the pain you might already have in your body, especially joint pain.

I've had pain in my hip in the past, but it was slight. I have lower back issues too with arthritis. But it's the hips that are killing me. Not able too sit for long periods of time. Walking tightens my knees and they are just so stiff.

I use to walk over 3 miles a day for exercise. No more. It's depressing. And because no one seems to understand what's going on in my body. It's being dismissed, because THEY (the doctors) don't have an answer.

I need a doctor that deals with SS. Don't know where to go right now. Just have an Endo, Primary and Ortho Surgeon, who replaced both my knees.

But for right now, I'll concentrate on the Thyroid.

Thank you all for the welcome. :)

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Is anyone else experiencing bruising. If I so much as run into the edge of the car door I get a bruise sometime to the point where the smallest scrape bleeds and the skin around it turns purple/green/brownish. The other day I just bumped the edge of a brown shipping box and began to bleed. I don't know if this is caused by SS or something else. I have a dermatologist appointment on Fri. because I am so concerned. I am afraid to even shave my legs for fear I will cause more bleeding. I don't really want to wear jeans all summer. I live in CA and can only wear jeans for a few months without looking like I just flew in from back East. No pun intended I was born in Buffalo and I know what those folks are going thru. I am so glad I found this group, I was thinking I was the only one falling apart. Thanks for being there.

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I have found that one dose of 400 ius of dry Vitamin K keeps me from bruising like I use too. I use too bruise at the slightest tap, but the Vitamin K once a week has stopped that. I have malabsorption issues with vitamins A,D,E & K. I have to take the dry forms, not the gel pills. So far, so good.

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Hey susieq,

My grandmother, now my mother are this way. The slightest little bump and you can see the blood under the skin. The skin thins and easily tears.

I personally don’t have the exact medical term or explanation, but if you post this as a discussion, you may get one.

I’m so glad you found us, do take good care of yourself

SK

BTW, let me know if you need help posting a discussion.

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SK please let me know what I should do as far as posting a discussion. Do I type here or some where else. Thanks

I always thought it was because of the high blood pressure meds. But it seems much worse now with the SS.

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Hi Susie,

Just click on the 'discussions' tab at the top, then click on the 'add' tab at the top right, and that will bring your page up. Put a title on it, type the body of the discussion and then click the tab at the bottom, it will be 'save' or 'send'.

To locate it again, just click on discussions, and you'll most likely find it in the General section.

If that doesn't work, let me know, be glad to help you!

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First, for the hip pain I get on the elliptical (no impact!) and do yoga. If its really bad I'll take an Aleve but I find things like that only work minimally.Exercising is my first line of defense for the long run but it can be hard to be consistent. I do my best.

For the tearing like that you really need to get with a doc. That can be a problem. My ex mother-in-law used to get that. As far as bruising though….since they put me on a cocktail of supplements its been better but I still have to keep up on iron intake also. I go through stretches of pretty bad bruising sometimes and I would love to know why. I have been on and off HBP meds and that (for me) doesn't seem to have any effect either way on it. Please keep up posted on what the doc says.