My first post so a little info about me.

I'm a 44 year old man, who has never smoked and drinks only a little alcohol, eats reasonably well.

For as long as I can remember I have always felt run down, always catching colds, when I do catch them I cannot shift them and they linger for weeks. I then started to get aching joints, especially my right knee and sometimes my hips.

I had some blood tests done and from these I was told my white cell blood count was very low, hence why I was open to catching all these colds etc.

Meanwhile my joint aches were getting worse and I started having outbursts of mouth/throat ulcers, non stop headaches, nightsweats, flashing lights in my vision, and just general fatigue.

My GP sent me to see a Rheumatologist at the hospital, he took loads of blood tests and they came back positive for the SSA & SSB (Ro & La) antibody and I had a speckled ANA of 1:640. I was put on Plaquinel and told I had Primary Sjogrens Syndrome.

I'm seeing my rheumatolgist soon as well and I have a list of symptoms to show him. I'll list them here, I don't get these all the time, but I have had them all in the last 6 months. At times my body feels like it's going to stop working, I feel so weak. I now have to use a walking stick if I walk more the 50 yards.

1. Mouth Ulcers
2. Dry mouth (slight)
3. Whitlows
4. Aching Fingers (pins and needles and numbness)
5. Aching Joints (mainly right knee and right hip)
6. Aching lower back (extreme)
7. Aching Jaw
8. Pain from under right ribs dx with fatty liver disease
9. Fatigue
10. Very bad sweating periods
11. Always getting viruses
12. IBS (Blood and lots of undigested food in stools)
13. Bleeding gums
14. Memory loss (Brain Fog)
15. Aversion to the sun (I burn really easy)
16. Headaches
17. Flashing lights (in corner of vision)
18.  Out of breath alot
19. Loss of sex drive and impotency at times
20. Butterfly rash on right cheek and below eyes
21. Cold sores
22. Low immune system
23. Morning stiffness of joints
24. Lack of sleep or to much sleep but never feeling like I've had a good nights sleep
25. Restless leg mostly in bed
26. Nausea feeling
27. Itchy shins if I start scratching them it gets very bad.
28. Diarrohea (Sometimes six times a day)
29. Loads of GAS.
30. Constipation.

As you can see a lot of things wrong with me. I just wish I could wave a magic wand and they all go away.  On top of this I have the thought of having to return to work and knowing it's going to be a struggle to get through the day.

I'm also suffering a heart condition that I have undergo a by-pass to sort out, but I'll post about that in the relevant section.

I'm writing all of this as it helps me to think and also I hope it helps someone else with what the symptoms are if you suffer SS.

Post Edited (D0c) : 12/7/2010 2:33:33 PM (GMT-7)

Thanks for your reply Lynnwood. My Rheumy said that because my Ro and La was positive it was Primary Sjogrens, so I just took his word for it. So can someone with Lupus also have a positive SSA and SSB?

Off to read the Lupus section.

 

Does occaisional eye pain...(stinging, irritated sensation) affect you at any time? Im getting this along with most of the symptoms you have listed. Im female, 28. Mother of two children.

Waiting on referral to rheumy. Just checking out different AI diseases, as i think what i have is AI in nature. Even though i was recently tested by my GP for Lupus and it was negative but I know myself that there is definately something not right with me. These symptoms have been progressing over the last few years. The last year being the worst. Here are my symptoms:

* Joint and muscle pain - intermittent and migrating to different joints, very like flu pain
*Chronic fatigue, no energy, unrefreshing sleep
*Body stiffness, heaviness
*A sciatic pain in my lower back/buttocks area that migrates to my right hip and sacriolac joint. Very painful and uncomfortable, cannot sleep when present. Pain comes and goes.
*Weakness in hands when trying to open jars etc.. muscles tire easily when drying hair, hoovering, even pushing sons pushchair.
*Random muscle spasms
*Pins and needles in hands and soles of feet that comes and goes. Also a pricking/pinching sensation throughout body. Periphial neuropathy?
*Increasing Brain fog....poor short term memory
*Headaches...were chronic but have become less frequent
*Very irritable, mood swings
*Recurring rash on fingers and toes..diagnosed in 2008 as Lupus Pernio. Red rash on nose...treated as roseacea.
*Eye pain. Right eye swelled up last summer. Felt gritty and stung. Thought I had a sty, which i never got before. Lasted about a week. Since this time, I have been experiencing a stinging sensation that comes and goes in both eyes.
*Bloating, abdominal pain, really bad flatulence!
*Itchy flaky scalp - very dry. Slight hair loss when brushed.
*Ears keep popping
*Occasional mouth/tongue blisters. bleeding gums.
*Frequent urination. Somedays will have persisitant full bladder.
*Frequent yeast infections.
*Loss of sex drive. Suffered slight cervical prolapse. Very little sensation. Gynae problems, longer heavier menstrual cycle, breast tenderness.
*Always had very cold hands and feet, turning pale, red and purple with temp...lately has become worse, very noticable in hands. Sometimes I feel my arm tightening ( like when getting blood pressure checked) and my hands would become very red and veins would protrude. Raynauds?
*Occasional night sweats
*Very thirsty at night, Dry mouth... Fine during the day.
*Nail changes - fingernails pale, no half moon except for thumbs, a red band has formed at tips of all fingernails. Terrys nails is the only resemblence I can see on the net. Kidney function test with last bloodwork was normal.
*Creaky joints - alot of cracking in bones
* There has been a few 'episodes' where I come over all weak and nauseous, with disorientated feeling, severe pain in limbs etc. Like having the flu but without other typical flu symptoms.

I feel like Im 90!!! What the **** is happening to my body!!! Before all this started happening I was very healthy and happy. I dont smoke, have the occasional drink (about once a month!) of which I have become intolerant if I have over 2... causing vomiting. Help!!

welcome to the sight. Wishing the best for all of you. It is frustrating when you have so many symptoms and feel crazy at times.

Take care.... Tons of good wishes and hugs...

Fern

Hi, I'm new to the site too. I have Sjogrens and now it seems to affecting more and more areas of my body. I'm having a very diffucult time with Vaculitis of my feet and legs now. I have perpherial neuropathy but this is different. It started about 4 months ago and has gotten progresslvely worse til I can barely walk. I sleep about one hour a night due to the pain. Doctor tried me on 3 different pain meds none were strong enough to combat the pain and with the last one I started to have an allergic reaction to it. Went to GP yesterday, was there Monday for Bronchitis so his partner would not discuss my feet(anyone else notice they only want to treat one ailment at a time, no matter how many are affecting you). He started me on Prednisone and a different pain med. They both seem to be working. I was able to walk some this morning without pain and I slept for 2 hours today.

   I am new here,  I have Sjogrens, I think I have had this since I was in my 30's. and was diagnosed 1 1/2 yrs ago. I ignored my symptons for years, blaming things on being over worked, and stressed out raising a child with handicaps.     I am a 57 year old woman, and for over a year has been depressed,  I can not believe that autoimmune problems can cause all the things I have been going through.     My caroted arteries ulcerated, my vascular surgeon tells me know that autoimmune might have had a lot to do with it. (Both arteries have been replaced).

I have had several stomach problems all my life, and ended up with Barretts esophagus, with high dysplasia. (I had cryotherpy at Claveland Clinic, Barretts and dysplasia gone, but I have endoscopes regulary to make sure) I keep getting stomach ulcers.   I had back surgery last year, a total Lumber, my spine became covered with arthritis, and scar tissue became too much, and I was at the point where I could not walk with out burning pain searing through my legs and back, surgery helped I guess, I still can not walk the way I want in distant ways. Now I have neuropathy in my lower legs, and my feet always hurt. I have severe otero-arthritis, everywhere. and raynaulds in my fingers.   My eyes hurt, they are dry, and I wear dentures (whats this tell ya) but when my mouth is dry that is hard.     My lungs do not get enough air in at night and I sleep with oxygen. I have ITP, my skin breaks out with bloody purple patches, and dots and I bruise, and now my doctors are talking about other medications besides the prednisone. I have been on and off prednisone for over a year. I have also had platelets IV, and IGG, and Feraheme for Iron dif.

I like others take plaqunil, pain pills, neuroton, muscle relaxers, nexium, antidepressant and synthoid. I am on three different inhalers.    I finaly have a team of doctors working together.

Getting all this out in a community, forum, that does not think I am a hypochondriak.  My gosh feels good.     I would welcome any and all coments.

I would guess PRIMARY AND some overlap....I am Primary only...for now.