Sjogren’s Syndrome – Introduce yourself and meet others

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.

Interested in more discussions like this? Go to the Autoimmune Diseases group.

I am so struggling with my Sjogrens! I am wondering if any of you have severe dryness in Vagina and pain there?

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@dancing1 Dryness in any of the mucus membranes can be a real problem and I’m sure Sjögren’s syndrome only makes it worse. I found 2 sites on the Mayo Clinic website that may give you some information. I don’t know if you are, or are not at the menopause stage, but that site gave some helpful therapies. I would definitely talk with your doctor first to make sure the vaginal tissue is healthy.

Vaginal dryness after menopause: How to treat it? – Mayo Clinic https://www.mayoclinic.org/diseases-conditions/menopause/expert-answers/vaginal-dryness/faq-20115086
Vaginal dryness – Mayo Clinic. https://www.mayoclinic.org/symptoms/vaginal-dryness/basics/definition/sym-20151520

Dancing, Is this severe dryness and pain new or have you been dealing with it for some time?

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@mamafluh

I was diagnosed in 2006 with Sjogrens Syndrome, about 4 years after Lupus (SLE) & Fibromyalgia diagnosis. I also suffer from Hypothyroidism,( Hashimotos), Myofacial pain syndrome, Kidney disease stage 2 now, used to be stage 3, bursa pain on both thighs, spinal arthritis, degenerative disc disease, etc… I had a TIA when I was only 36 I am currently 58. Trying to narrow down what disease is causing pain is not exactly easy. I take 16-18 meds per day, my son calls it my trail mix. Bipolar runs in my family back 5 generations now, not fun at all with all the physical issues as well. I've been on Plaquenil 400mg per day since 2002. This drug is used for many of the autoimmune disorders I have. I have also become a Covid longhauler as of August 2021. My new symptoms match those of Chronic Fatigue Syndrome, or possibly Polymiagia Arthritis. Time will tell, on list for Post Covid group with the U of M hospital. Earliest they can get me in is March 9th 2022. I'm already taking Oxycodone and Tizanadrine for previous back issues, but are not always strong enough on my bad pain days since I had Covid. You'll probably see my name on many other forums on this website, it has been a long time since I was able to find people who face some of the same challenges on one website. Oh lastly I have found the name for an issue I have had a terrible experience with. It's called Auditory Hallucinations, it's hearing like a radio station playing music when there's actually none being played. The songs I'm not familiar with and they are not completely in tune. I read it is found in people who have hearing loss, which I don't. My hearing is top notch. People have also said they enjoyed hearing the songs, I have the exact opposite reaction. I just want them to stop when they start.I have heard words used over time and time again when being tested or results of tests, such as "that's odd", " I've never seen that before", " sorry, that's never happened before". I even received a phone call from my doctor beginning the conversation with "you're one odd duck"
So there is not much that overally makes me feel uncomfortable anymore. I just take it with a big breath and don't get over stressed about things medically I don't have any control over.
Way to go Mayo Clinic!!

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I was also recently diagnosed with Sjögren’s syndrome, chronic ITP with platelets as low as 11 and CRPS and Allodynia as well as lymphadenopathy and suffered for almost 3 years from 35- my current age of 38. I was basically trapped in my own body. I am on 4000 gabapentin, muscle relaxers, pain meds, nortriptyline and a couple other meds as well as weekly treatments with nplate and iron infusions. I have had inflamed lymph node biopsied and lymph nodes that were attacking my nerves removed leading to further pain, bone marrow biopsies, ultrasounds, MRI’s, etc. I started ketamine infusions this week and for the first time I can breathe and laugh without as much pain. It was expensive but I was very suicidal due to the pain and had already tried ganglion blocks and it did nothing so ketamine infusions was my last hope and while it didn’t remove all my CRSP pain or Sjögren’s syndrome pain it helped dramatically. I was at a 10 in pain everyday all day and it brought my pain level to about a a 5-6 after each treatment in some areas and a 8 on bays so I can actually say it was worth every penny. So going forward I will be treating my body with meds from my rheumatologist and treatments for the ITP and probably more ketamine infusions but it definitely helped relieving some pain so that I don’t feel like I am going crazy. It may not be for everyone and as I said it is expensive and not covered by insurance but if I can go about life without feeling like I’m dying from all the pain that it something I am willing to do. I need to learn more as it progresses or returns to pain level of a 10 then I am ok with that. Like I said I still am at a 10 in some areas and a 5 in others so maybe a combination of treating them all will give me lower levels of pain so that is my plan. To anyone suffering like me then maybe something like this will help anyone else suffering.

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@dancing1

I am so struggling with my Sjogrens! I am wondering if any of you have severe dryness in Vagina and pain there?

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@dancing1 here is a recent discussion on vaginal dryness that might be of interest. It is in the Women’s Health group.
https://connect.mayoclinic.org/discussion/vaginal-dryness-1/
Will you reach out to these members to see what they have learned?

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@dancing1

I am so struggling with my Sjogrens! I am wondering if any of you have severe dryness in Vagina and pain there?

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I also have Sjogren’s with vaginal dryness. I have been on hormones (testosterone, progesterone and estrogen bio-identical from a compounding pharmacy) for about 3 years. Before that I used a topical estrogen cream or pill that is inserted (some with Sjogren’s don’t have enough vaginal moisture to dissolve the pill). I had used the topical estrogens for about 20 years with no problems. I’m sure I have had Sjogren’s much earlier in life from the symptoms I had but didn’t realize what was causing them, but I wasn’t diagnosed until 3 years ago.

When I went on the oral hormones the doctor told me I wouldn’t need the topical estrogen anymore. Wrong. This last fall I started having symptoms similar to a UTI, but it wasn’t a UTI, come to find it was urethral prolapse caused by vaginal atrophy (from age and dryness).

So I resumed the estrogen cream and within 3 weeks it was resolved and no pain.

Please look at the site smartpatients.com and also

sjogrensadvocate.com this site was created by an MD with Sjogren’s, has lots of valuable information and help.

There are many people with Sjogrens who are willing to share their experiences and their ideas are helpful with treating symptoms.

Good luck!

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Hi Sjogren's and Autoimmune Diseases members. Many of you have had the pleasure of crossing virtual paths with @athenalee. Today Athena is our featured Member Spotlight. I think you'll enjoy @rosemarya's interview with Athena and getting to know more about how she finds balance, enjoys small town living and dancing, cooking and life-long learning.

– "Learning never exhausts the mind”: Meet @athenalee https://connect.mayoclinic.org/blog/about-connect/newsfeed-post/learning-never-exhausts-the-mind-meet-athenalee/

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GM, I too have Sjogren's as a result of an infection late 2018. I'm seronegative and had a neurological presentation first with dryness later so getting diagnosed was a challenge. Finally was able to get to Mayo and they recognized my symptoms and did testing which other docs would not because of my seronegative status. So had positive lip biopsy, positive tilt table, positive punch biopsy for small fiber neuropathy, and the list goes no. It is a difficult disease to live with at least for me. Getting to a major medical center is my best advice for someone having difficulty getting diagnosed. Just wanted to introduce myself and say hello:)

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@lilymol

GM, I too have Sjogren's as a result of an infection late 2018. I'm seronegative and had a neurological presentation first with dryness later so getting diagnosed was a challenge. Finally was able to get to Mayo and they recognized my symptoms and did testing which other docs would not because of my seronegative status. So had positive lip biopsy, positive tilt table, positive punch biopsy for small fiber neuropathy, and the list goes no. It is a difficult disease to live with at least for me. Getting to a major medical center is my best advice for someone having difficulty getting diagnosed. Just wanted to introduce myself and say hello:)

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And hello to you, @lilymol ! I’m so glad you were able to get to Mayo for a proper diagnosis. And i really agree with going to a major medical center. That’s what i had to do. None of the local doctors knew what i had or how to treat it, so I went to the university hospital and the doctors there knew exactly what to do. Yea!
Do you find that your local doctors are willing to follow Mayo’s plan of care?
I hope you’ll stick around and help others who are fighting sjogrens!

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@becsbuddy

And hello to you, @lilymol ! I’m so glad you were able to get to Mayo for a proper diagnosis. And i really agree with going to a major medical center. That’s what i had to do. None of the local doctors knew what i had or how to treat it, so I went to the university hospital and the doctors there knew exactly what to do. Yea!
Do you find that your local doctors are willing to follow Mayo’s plan of care?
I hope you’ll stick around and help others who are fighting sjogrens!

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Hi it is a struggle to find docs locally that support/agree/understand that Sjogrens is a disease (not a little dryness), that you can be seronegative, and that it can cause SFN/POTS/dysautonomia/bone-jt-muscle pain. I joined the Sjogren's foundation, follow Sjogren's Advocate, and now Mayo Connect in hopes of learning about my disease and staying current with the research. Thank you for the warm welcome!

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@lilymol

Hi it is a struggle to find docs locally that support/agree/understand that Sjogrens is a disease (not a little dryness), that you can be seronegative, and that it can cause SFN/POTS/dysautonomia/bone-jt-muscle pain. I joined the Sjogren's foundation, follow Sjogren's Advocate, and now Mayo Connect in hopes of learning about my disease and staying current with the research. Thank you for the warm welcome!

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@lilymol If you like doing research, have you tried ‘google scholar’? It’s a more in-depth search engine. You might also be interested in some information @athenalee found on Sjögren’s syndrome:
https://connect.mayoclinic.org/comment/664360/
Would you mind sharing the web addresses for Sjogren’s Foundation and Advocate? They would be great to have for others just joining Mayo Connect!

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@becsbuddy

@lilymol If you like doing research, have you tried ‘google scholar’? It’s a more in-depth search engine. You might also be interested in some information @athenalee found on Sjögren’s syndrome:
https://connect.mayoclinic.org/comment/664360/
Would you mind sharing the web addresses for Sjogren’s Foundation and Advocate? They would be great to have for others just joining Mayo Connect!

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Thank you for the resources.
Here are the links I mentioned in a previous post: Sjogren's Foundation: https://www.sjogrens.org/
Sjogren's Advocate: https://www.sjogrensadvocate.com

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I'm in the process of getting the official diagnosis of Sjogrens- it's not in my blood, but I don't produce any tears, have very dry eyes, nose, mouth, skin, everything, my salivary gland CT came back as 'bad' and I will have a biopsy of the gland next month. I also have neurological, muscle and joint issues. One thing that bothers me lately is a foul taste in my mouth and ditto smell in my nose, very sweet and sickly. It comes closest to the smell of fresh (not infected) urine. No headache or sinus pressure, so maybe the dry sinuses are to blame? It drives me nuts. I put some mint cream under my nose to try and mask the smell, I drink a lot of water each day, but what else can I do? Does anybody recognise this? Thank you all for your feedback!

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