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Sjögren's Syndrome Message Board
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Old 05-07-2006, 07:30 AM   #1
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Unhappy Feeling awful - can anyone relate?

Hi everyone!
I am seeing my rheum next week - I was feeling bad at the last visit so he wanted to see me in 3 months instead of the usual 6. Honestly, I can't wait. Despite negative blood tests and lip biopsy, the Sjogren's symptoms are worse - dry eyes, mouth (think I have yet another cavity), dry throat (can't even swallow pudding without water), swollen parotid, fevers, etc. He told me that my blood could test "clean" until a major life event like a pregnancy (and now I'm scared to get pregnant). He also diagnosed me with fibromyalgia. I've been running fevers over 100 every day lately, have no energy, my right hand is swollen, and i feel so drained. Also, getting out of bed is awful (funny enough, it's really bad on my days off) - I ache all over and my joints are stiff. I am only 29 this month but I feel much older. Also, I have the ongoing IBS symptoms. I've found that eating low carb (and "good" carbs like sweet potato) & high protein helps, but I'm in constant pain. It affects my quality of life and no one understands.
Sorry for this long, whiny post! I am just getting a little scared at how bad I've been feeling. I've been pretty fortunate so far. I guess I worry too because people in my family have had Sjogren's, lupus, fibromyalgia, myasthenia gravis, & rheumatoid arthritis.

 
Old 05-08-2006, 09:29 PM   #2
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Re: Feeling awful - can anyone relate?

Hi kelltic, I don't have any words of wisdom to give you besides that I know what you are feeling. The fatigue and joint pains are my biggest symptoms and I have mild dry eye and dry mouth. What meds are you on? I'm only 30 so I can relate to what you are saying. People look at me like I am being lazy because I am so young and supposed to be so full of life. "Supposed to be" being the key phrase. Like I said, nothing to advise you on but wanted you to feel like you aren't alone. Take Care

 
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Old 05-09-2006, 09:43 AM   #3
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Re: Feeling awful - can anyone relate?

Quote:
Originally Posted by kelltic
Hi everyone!
I am seeing my rheum next week . Despite negative blood tests and lip biopsy, the Sjogren's symptoms are worse - dry eyes, mouth (think I have yet another cavity), dry throat (can't even .

30-40% of lip biopsies for Sjogren's are misread.

 
Old 05-09-2006, 03:31 PM   #4
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Re: Feeling awful - can anyone relate?

Quote:
Originally Posted by BobiM
30-40% of lip biopsies for Sjogren's are misread.
Really? That's oddly rather comforting, because I have all of the symptoms. At least that makes me feel less crazy.

 
Old 05-09-2006, 03:38 PM   #5
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Re: Feeling awful - can anyone relate?

Quote:
Originally Posted by dbab
Hi kelltic, I don't have any words of wisdom to give you besides that I know what you are feeling. The fatigue and joint pains are my biggest symptoms and I have mild dry eye and dry mouth. What meds are you on? I'm only 30 so I can relate to what you are saying. People look at me like I am being lazy because I am so young and supposed to be so full of life. "Supposed to be" being the key phrase. Like I said, nothing to advise you on but wanted you to feel like you aren't alone. Take Care
Thanks so much. At least I'm not alone. I am currently only on Evoxac. It's useful but doesn't help with the throat dryness..I can't even swallow a soft food like mozzerella cheese without liquid. I left one rheumy when he INSISTED that I go on steriods. We'll see after tomorrow if he adds any more meds.
The worst right now are the fevers (up to almost 101) and the feeling that i just don't feel right. It's hard to explain, but I feel exhausted and like something is really wrong. Well I am a teacher and I only have about a month and a half to go, and I just finished my masters degree so I can rest this summer.

 
Old 05-09-2006, 07:58 PM   #6
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Re: Feeling awful - can anyone relate?

Quote:
Originally Posted by kelltic
Thanks so much. At least I'm not alone. I am currently only on Evoxac. It's useful but doesn't help with the throat dryness..I can't even swallow a soft food like mozzerella cheese without liquid. I left one rheumy when he INSISTED that I go on steriods. We'll see after tomorrow if he adds any more meds.
The worst right now are the fevers (up to almost 101) and the feeling that i just don't feel right. It's hard to explain, but I feel exhausted and like something is really wrong. Well I am a teacher and I only have about a month and a half to go, and I just finished my masters degree so I can rest this summer.
Hope your appointment goes well tomorrow.

 
Old 05-11-2006, 06:40 PM   #7
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Re: Feeling awful - can anyone relate?

It is tough to deal with life when you feel rotten. I was diagnosed with Sjogren's Syndrome when I was 36. Just want to share that taking steroids does not have to be a traumatic experience. I happen to be very sensitive to everything and my rheumy put me on a very low dose of prednisone for a year. Also Plaquenil. I went into remission for almost 16 years, was able to raise my 2 kids and participate fully in life until being diagnosed with Lupus 2 months ago.
If you can communicate with your physician, you can work out a plan that just might help you more than it hurts.
Best wishes to you & may you find treatments that heal...

 
Old 05-13-2006, 04:34 PM   #8
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Re: Feeling awful - can anyone relate?

Are any of your lymph nodes swollen? Have you been tested for lymphoma? Since you have running fevers, I would talk it over with your Rheumy. Best wishes and hope you feel better soon.

 
Old 06-25-2006, 03:16 PM   #9
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Re: Feeling awful - can anyone relate?

kelltic -I was just diagnosed with Sjorgens and Hashimoto's after a long period of not knowing why I felt like terrible all the time. I am 24 and there are days when I feel like I am 70 years old(when i turn that age i know i wil regret this post). Just know that on your day off I am right there sitting in my pajamas with you saying "I really should take a walk, or run those errands, but then again I am sooooo tired, and that would put me in the HOT sun and I would become even more tired. I think I will just curl up with this book.

 
Old 07-17-2006, 09:08 PM   #10
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Talking Re: Feeling awful - can anyone relate?

Hi Kidd

When you say "remission" does this mean that the drugs took away the dryness in you mouth and eyes? How long had you been suffering from dryness before you doc put you on the meds and how long did it take to fix the problem? Would be fantastic to know?
Cheers and all the best for good health
musicfinch

[QUOTE=kidd123]It is tough to deal with life when you feel rotten. I was diagnosed with Sjogren's Syndrome when I was 36. Just want to share that taking steroids does not have to be a traumatic experience. I happen to be very sensitive to everything and my rheumy put me on a very low dose of prednisone for a year. Also Plaquenil.

Last edited by musicfinch; 07-17-2006 at 09:13 PM.

 
Old 07-17-2006, 09:10 PM   #11
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Re: Feeling awful - can anyone relate?

Hello Kidd

Just wondering how long u were on the drugs before you went into remission and did this take away the dryness in you mouth and eyes? Hope it did
Cheers
musicfinch

 
Old 10-28-2006, 12:59 PM   #12
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Re: Feeling awful - can anyone relate?

Hello, I was diagnosed with sjorgrens/lupus and pernicious anemia. I found I used to be extremely tired and would sleep up to 14 hrs a day or more but once diagnosed with the anemia and put on B12 shots my energy increased dramatically. B12 vitamins will not help. If you are suffering from being tired all the time and have not been tested for pernicious anemia it might be worth looking into.

 
Old 10-31-2006, 01:54 PM   #13
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Re: Feeling awful - can anyone relate?

Wow - lots of young people! I am 26 - diagnosed with Sjogren's about 5 years ago & Vasculitis about a 1 1/2 - 2 years ago.

I feel sluggish & tired all the time!

I am on Methotrexate, Plaquenil, Evoxac, Norvasc.. Prednisone isn't as bad at low doses - it is just when you get to be at 60mg & up that is kinda yucky...I would retain water & feel bloated, my face got to be round (not too bad). At my worst - I had to have Solumedrol infusions..

Last edited by Administrator; 03-25-2010 at 09:57 AM.

 
Old 02-03-2007, 07:21 AM   #14
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Re: Feeling awful - can anyone relate?

This could have been me 14 years ago when I was first diagnosed with fibromyalgia. Had the worst dry eyes for over 3 years and they thought I had sjogrens too. I think all the stress I encountered trying to get someone to believe my symptoms and help me, made me just flare all the worse. Went to a wonderful doctor (after a year of different ones) who said that I wasn't crazy. She put me on Prozac, not for depression, but said it was also good for chronic pain. Put me on a regular exercise program, meditation, etc. and it did wonders. Fourteen years later, I feel pretty darn good and look great! Never thought I would have quality of life back in those early days....never give up the faith. I have had every symptom you can think of from hurting feet to my eye sockets killing me...and everything in between. I wish you luck in getting to feel better....it's a long process but it will happen.

 
Old 02-08-2007, 05:56 PM   #15
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Question Re: Feeling awful - can anyone relate?

I can relate and have not been diagnosed with Sjorgens but have all the symptoms and have watched my dad go through the disease for many years. My face burns...all the time, but I don't run a fever...it goes red in my cheeks and across my nose, I have a very dry mouth, and am going to an oral surgeon tomorrow. I have been told I have Fibromyalgia, and last week my gp told me I don't have Fibrom., I have had a headache since a year last summer...seriously, I can't stand the sun in my eyes, they hurt, my nose hurts, my legs ache/tingle all the time quite badly, mind you they have ached since I was in my 20's, and now I am 56. My arms ache and my fingers ache. I think right now my headaches, and my burning face and my dry mouth are the worst plus the fact my ANA was negative and my dr. has told me he thinks I should be outside jogging and seeing a psych.. I know it is not in my head I feel horrible. Has anybody had this burning skin? I read all the posts. Thank you. I don't feel alone. Right now I only take Tyl. #3's until I test positive for something.

 
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