Introduction of another Sjogren's Grrl

[Tara32]

  My name is Tara, I'm 40 years old and was diagnosed less than a month ago with Sjogren's, Distal RTA (Renal Tubular Acidosis) and Peripheral Neuropathy.  I created a blog to chronicle my experiences, to educate my family and to find support.  If you're interested in reading more about my story check it out at http://myempyreanworld.blogspot.com

I've been having new problems and pains the last few days and it has me a tad freaked out.  My lymph nodes are swollen, especially on my left side, and my entire throat, jaw, mouth, chest, neck, shoulders and upper back hurt terribly.  Nothing seems to give me relief.  I've been super light headed and dizzy as well.  I do have low bp and it seems to be staying low.  I've heard a lot about POTS and dysautonomia lately - I keep running across it.  Does anyone else here have similar issues or know anything about the corelation between Sjogrens and this?

I'm curious to know if anyone on here is in Central Florida where I am.  I'm originally from Central Pennsylvania (Lancaster County) and do plan on moving back there soon, so I'm also curious to know about anyone on here who lives there.

Being so new to this, I feel I've educated myself pretty well thus far, but know I have a long way to go.   I feel as if I'm still an enigma to my family & friends though.  And since I went undiagnosed for 9 years everyone seems to think since I've pushed through the pain all these years that I can still do it.  But I feel as if it's getting worse and honestly now that I know I want to scream out that this wasn't in my head, I have been sick & now I'm taking care of myself!

Hope to hear from some new friends soon.  I'm feeling pretty alone & overwhelmed right now.

Gentle hugs,
Tara

[Joe S.]

Welcome to the forum. I want to suggest that you wear a polar fleece mumps scarf to bed. Playing the tones found http://www.chakraforce.com/Tonations.html#228. may help with your left side infection. You may want to see a doctor for some antibiotics.

More later.

[artsyamerican]

Hi Tara - I am also in West Central Florida and have many of your same symptoms! My neck and gland thing seemed to resolve on its own a few days ago...thank goodness...it was horrible!!! The thing about Sjogrens is you never know what symptom will attack when! Today I am happy I don't have a headache, or earache, or lymphnode/full ear pain.  Today I only have a bit of a dry cough and fatigue...which is nothing compared to the aforementioned! Welcome to the board.  I'm new here also and have found great support!

[Tara32]

Thank you so much both of you!  Amy, do you come to Orlando often?  Do you like the doctors you have in Melbourne?  I'm so nervous about finding a good rheumatologist around here    Joe I am going to my doctor tomorrow - thank you for your advice as well    Oh and Amy I would love for you to follow my blog if you liked it - I am trying to get more people to follow me so I can have a larger reach.  How long have you had Sjogren's and is it primary or secondary for you? 

[KellyG999]

Welcome, Tara!

We're glad to have you as a part of this community, but sad that you needed to seek us out...

I can relate to your post, and I'll read your blog in a bit.

I suffered terribly for well over a year, with all over pain, tummy trouble and (worst of all) dry mouth and throat with attacks of throat swelling. I was having what felt like deadly attacks 3-4 times per day. Doctors of all specialty could not help. I was desperate. Finally, I went to a naturopath who begged me to go to my PCP and request 10 weeks of FMLA. I felt like a failure, but I did it with little support from the family. It was the BEST decision I have made regarding my health. I was able to get my stress and attacks under control and really RESTED my body and mind.

I wish you the best, try to stay calm and if you can't, please get help. I use Zoloft at a small dose every morning to help me cope with my illness and symptoms..

Welcome again - HUGS,

KellyG

[artsyamerican]

I will definitely follow your blog  .  I am actually in Spring Hill.  I see Dr. Moureiden...and he is an angel from heaven above!! The best Rheumy ever.  He is a man of few words...but he has helped me so much! He was the one who told me he supported me leaving work and applying for disability.  He never questions filling out a form - giving me a shot - whatever he thinks is in my best interest.  Since I moved here I've been to Orlando just once! LOL.  But it's a straight shot down 50 to Dr. Moureiden if you think it's worth the trip! If you do...I'll meet your for coffee : )

[artsyamerican]

Your blog is awesome ! Did you write the imagine part? I love it! It is so true! May I borrow it - copy/paste it to my Facebook page - I will give you credit of course! But you hit the nail right on the head...I could so relate to all of your imagines!

[engy]

Hi Tara, welcome!

I love your blog and would like to start my own, if you have any suggestions will you PM me please?

My upper back & shoulder pain were horrible but have gotten better since going on plaquenil & supplements.

I do have POTS & my BP would drop so low after walking 10 steps that I would pass out. My doctors think (& I agree) that the sjogrens caused my POTS & neuropathy. That too has improved greatly since plaquenil & supplements.

It is a process of learning what works for you & acceptance. Last year at this time I wasn't walking without help & had tremors & so many symptoms. Today I am working full time. I still have symptoms but many have improved & I've learned to rest when I need to & not care who gets upset about it.

You are NOT alone here. The people here are the most caring & selfless people ever! You will get many ideas & suggestions here from knowledgable people.

I'm in Northeast Ohio.

I posted my DX & my meds & supplements as others have too. My neuropathy has been helped with methyl B12 shots & Alpha Lipoic acid. My doctors & I have seen so much improvement in my SFN from those 2 things that I do not need a script.

Good Luck, Carie

[susanep]

Welcome Tara, and glad to get to know  you. You must take care of yourself even when others don't understand. Try the best you can to keep away from stressful things. I will also read your blog shortly.

Please come back, and share with all of us, because that is what we do here, and do our best to be supportive of each other, because we all understand.

Take Care
susanep