My first post so a little info about me.

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D0c
New Member


Date Joined Dec 2010
Total Posts : 6
   Posted 12/6/2010 11:34 AM (GMT -6)   
 
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)


Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 5750
   Posted 12/6/2010 1:10 PM (GMT -6)   
I'm surprised they dx you with Primary Sjogren's rather than Lupus. You might want to read the Lupus dx info at www.lupus.org and look at the Lupus forum here - it's much more active than the Sjogren's forum.

The good news is that you are seeing a rheumy and that there isn't much difference between treatments for the 2 illnesses.

Hope you feel better soon,
Lynnwood, Lupus & Sjogren's Moderator
"Life is far too important to be taken seriously" - Oscar Wilde

D0c
New Member


Date Joined Dec 2010
Total Posts : 6
   Posted 12/6/2010 3:03 PM (GMT -6)   

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.

 

MV_VHYC24
Regular Member


Date Joined Oct 2010
Total Posts : 28
   Posted 1/17/2011 3:01 AM (GMT -6)   
I wish that I could say that my symptoms were much different than yours; unfortunately they are not.  It was just recently determined that I have Sjogren's due to my symptoms & the antibody screening.  My antibody levels are still low, but the symptoms have been so severe that I have been unable to work since September.  The doctors will be starting me on treatment to prevent lung damage from the infection/inflammation/pluerisy that has plagued me over the last 3 months. I am also seeing a GI specialist to help determine the extent of the intestinal problem.  I have been seeing various doctors since December 2009 trying to get an idea of what is causing the mutitude of symptoms. 
 
Mouth Ulcers (very frequent)
Dry mouth (sometimes)
Sore throat (I think from the dryness)
Whitlows on my fingers (permanent numbness on one finger)
Swelling hands & feet (redness & pain)
Aching Joints (knees, ankles & wrists)
Lower back pain/muscle spasms (steroid injections helped for a little while)
Peripheral neuropathy (legs & arms...sometimes reaching to hips & shoulders)
TMJ with decay (2 root canal performed in 3 months time)
Fatigue
Hot & cold flashes
Frequent bronchitis & difficulty breathing, wheezing
Headaches (severe at times)
Loss of sex drive and pain  (from dryness)
Frequent yeast/pelvic infections (probably from dryness)
Redness on cheeks & forehead (especially after being in sun)
Cold sores
Morning stiffness in muscles & joints
Insomnia followed by excessive sleeping (sleeping 15+ hours without feeling rested or being awake for 36 hours)
Twitching leg (mostly at night & when resting)
Very sensitive reflexes in my legs (tapping my leg makes me kick)
Bouts of nausea & stomach cramping
Itchy skin on legs, back, arms, hands (to the point of bleeding when scratched)
Constipation
Sores on scalp that itch & hurt at the same time
 
 
Dx:Fibromyalgia, Hashimoto's, Sjogren syndrome, +ANA (Homogenous), Raynauds, Scoliosis, Migraines, Anxiety/Depression, Ovarian Cysts, Spinal stenosis, L4/5 herniated discs, Sexual Dysfunction
Meds:Cymbalta, Zanaflex, Synthyriod, MS Contin, Trazadone, Advair

**Children seldom misquote you. They more often repeat word for word what you shouldn't have **

Vinrouge
Regular Member


Date Joined Apr 2011
Total Posts : 20
   Posted 4/9/2011 4:31 AM (GMT -6)   
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!!

Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 5750
   Posted 4/9/2011 9:28 AM (GMT -6)   
Very dry eyes from Sjogren's often are the first signs someone notices. You can get eye drops to see if they help relive your eye symptoms -- they MUST be clearly marked "eye lubricant" - not for redness, not for contacts, nothing else added, just plain "eye lubricant".

Check out the link for lupus diagnosis in my signature and see how/if that matches up any!
Lynnwood, Lupus & Sjogren's Moderator
DIAGNOSING-LUPUS & LUPUS-RESOURCES
"Life is far too important to be taken seriously" - Oscar Wilde

panther fern
Regular Member


Date Joined Feb 2011
Total Posts : 163
   Posted 4/10/2011 2:40 PM (GMT -6)   
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

lucysgd
Veteran Member


Date Joined Jun 2008
Total Posts : 663
   Posted 5/2/2011 10:33 PM (GMT -6)   
Hi VinRouge - sorry about your troubles. Since you are investigating AI illnesses - you might want to check into AS (Ankylosing Spondylitis). Your eye problems along with the sciatic/sacroiliac pain in back and buttocks, and weakness in your arms seem like general symptoms for that, and it generally starts young -in the 20-30 yr old range. It's good you're keeping track of your symptoms. As you await your rheumy appt. take pictures of rashes if you can.
AI problems are frustrating to sort out - best of luck!

Lucy

eja1959
New Member


Date Joined Jun 2011
Total Posts : 3
   Posted 6/25/2011 3:49 PM (GMT -6)   
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.
52y w/f dx - Sjogrens Syndrome, Polymyosistis, Hypertension, Hypothyroidism,Type II Diabetes, Vasculitis, Pheriphal Neuropathy, Restless Legs Syndrome, Tachycardia

Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 5750
   Posted 6/25/2011 5:32 PM (GMT -6)   
Welcome to HW, eja1959. Sounds like your Sjogrens is one of the worst cases on this board! Don't know if we can help much, but we're happy to have you!
Lynnwood, Lupus & Sjogren's Moderator
DIAGNOSING-LUPUS & LUPUS-RESOURCES
"Life is far too important to be taken seriously" - Oscar Wilde

Baxters Peaches
New Member


Date Joined Jul 2011
Total Posts : 2
   Posted 7/26/2011 10:58 PM (GMT -6)   
   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.

ladyjay
New Member


Date Joined Aug 2011
Total Posts : 1
   Posted 8/14/2011 9:34 PM (GMT -6)   
Hi Baxters, hope things work out for you.

cat1962
New Member


Date Joined Aug 2011
Total Posts : 8
   Posted 8/28/2011 9:01 AM (GMT -6)   
I would guess PRIMARY AND some overlap....I am Primary only...for now.

bonnieb2
New Member


Date Joined Sep 2012
Total Posts : 1
   Posted 11/14/2012 12:38 PM (GMT -6)   
I am glad to hear your results from the sjogrens
Lip biopsy. I'm scheduled for the procedure in a week
The day before Thanksgiving, I think I will cancel & reschedule
From the sound of the pain involved. The healing sounds
Painful and lengthy. I will follow up with results. Thank you
For posting your experiences.
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