Sjogren's E-Pals

E-Pal Want Ads 2008-2009

• 2009 • 2008 • 2007 • 2006 • 2005 • 2004 • 2003 • 2002 • 2001 •
(browse all of them in one plain text file)

Don't forget to read the older ads, the more "experienced" E-Pals from previous years.

An E-pal is an Internet Pen Pal. Living with Sjögren's Syndrome can be very difficult, very lonely. Only those who have Sjögren's can truly understand how we feel. It’s important to have someone to "talk" to when no one else understands. An Sjogren's World E-Pal can be that special friend for you.

* To get a Sjögren's E-Pal you must first place your own E-Pal ad. For more information and to submit your own E-Pal Want Ad, click here. Requests are limited to 5 at a time.

Please remember proper email etiquette and never include your new e-pal's address if you forward email to others.

"Special Requests" E-Pals Also:

Parent's of Children with Sjögren's looking for E-Pals, Caregivers of those who have Sjögren's and Teenagers with Sjögren's are listed as special requests. Please look for "Special Requests" for these categories.

~~~~~

E-Pal number 2009-163

Name:  Thomasina
Gender: female
Age: 35
Lives in:  USA
Years with: 5+

About Me: Hi! I am mother of two and recently diagnosed with Sjogrens. I enjoy life! My interest are camping, hiking, snow tubing and reading.

~~~~~

E-Pal number 2009-162

Name:  Karen
Gender: female
Age: 52
Lives in:  Cyprus
Years with: just referred for tests

About Me: I have been treated for Idiopathic Transverse Myelitis for 5 years, now my Neurologist has referred my for tests for Sjogrens. I have some of the symptoms, dry eyes, mouth, nose, stuffy ear, aching joints, fatigue, memory lapses at times, fatigue and i am really worried about how to cope with this. I have a loving husband and wonderful 16 yr old daughter, but unless you understand this syndrome, its difficult to cope and help. Would love to speak to someone in similar position to myself, or anyone who understands.
We really have to live each day to the fullest and face this head on don't we.

~~~~~

E-Pal number 2009-161

Name:  Robin
Gender: female
Age: 55
Lives in:  New Jersey, USA
Years with: years? just diagnosed

About Me: I am newly diagnosed, and just beginning my research. Now all of the pieces of my puzzle are fit together. I would love to talk to someone that is experiencing the same and how do you keep a full time job when you feel so horrible, one minute to the next? Thank You!

~~~~~

E-Pal number 2009-160

Name:  Betsie
Gender: female
Age: 28
Lives in:  Massachusetts, USA
Years with: around 2 years

About Me: I'm 28 years old and have been diagnosed with SJS. I hate the fact that I know so little about this condition, and would like very much 4 someone 2 talk with.

~~~~~

E-Pal number 2009-159

Name:  Susan
Gender: female
Age: 44
Lives in:  Michigan, USA
Years with: diagnosis this year, but I am sure I have had it longer

About Me: Hi, Looking for someone to talk to that as a lot of pain also. Maybe we can figure out together how to cope with it. I have a good husband of 20 yrs and a 10 yr old boy and 11 yr old girl. I am working part-time and hope to continue.

~~~~~

E-Pal number 2009-158

Name:  Wanda
Gender: female
Age: 26
Lives in:  California, USA
Years with: 3 months

About Me: I was recently diagnosed with sjs based on blood tests and severe dry eyes. I go through good days, bad days, and worse days. I get dry eyes (still despite the restasis and ATs) have always had dry cracked lips bouts of joint pain, fatigue, headaches, brain fog and those crazy pins and needles feeling. I want to find someone my own age to talk about this with. I'm only 26 and it's hard feeling so much more tired and older most of the time.

~~~~~

E-Pal number 2009-157

Name:  Cindy
Gender: female
Age: 47
Lives in:  Alabama, USA
Years with: 2

About Me: I was diagnosed with SS two years ago. My mother had this disease and I assisted with her care. I was probably more informed than most people when they confirmed I have it. I have the regular dry eyes and mouth, achy muscles and fatigue. I still work full time. I have been married two years. I have two step daughters and 3 grand children. I have two cats Kramer and Newman. Would love to have someone to chat with that understands what I go through everyday.

~~~~~

E-Pal number 2009-156

Name:  Linda
Gender: female
Age: 50
Lives in:  England
Years with: ??

About Me: I'm waiting for a diagnosis, hopefully on 3/11/09 hen I get my results, have dry eyes, dry mouth, persistent cough and more recently pain in my neck where my glands are. would like someone to chat with about this condition.
I'm a single female, that works part time with no family members that live close to me, I live with my 2 Siamese cats some of my interests are walking, camping, reading and just being out and about.

~~~~~

E-Pal number 2009-155

Name:  Lucy
Gender: female
Age: 24
Lives in:  England
Years with: 0

About Me: Hi just been diagnosed feeling pretty lousy to be honest 2 kids 15 and 12 and a hubby who's in Afghanistan so feeling pretty low at the moment. I work as a support worker and love my job would love to chat to anyone.

~~~~~

E-Pal number 2009-154

Name:  Charlotte
Gender: female
Age: 36
Lives in:  England
Years with: 1

About Me: Just diagnosed with primary Sjogrens & the extra bonus of an IGG deficiency which apparently makes me more susceptible to infections. I haven't a clue what this really means for the longer term, and I am trying to adopt a 'wait and see' approach but I admit to feeling a little scared by it all. I have two very small children who take up lots of time and energy! I want to be a fit mum for them and for myself. I would really like to be in touch with people in a similar situation. I just started taking hydroxychloroquine today at a low dose. I could really do without all this! But I guess I have to find a way to make the most of what someone has seen fit to give me... Hope to hear from you...!

~~~~~

E-Pal number 2009-153

Name:  Sam
Gender: female
Age: 28
Lives in:  England
Years with: 11

About Me: I love musical theatre and meeting up with friends, I would like to talk to people that have the same condition as me, friends and family are very supportive but sometime they don't understand.

~~~~~

E-Pal number 2009-152

Name:  Sheila
Gender: female
Age: 44
Lives in:  Ohio, USA
Years with: ?

About Me: I was just diagnosed this week with Sjogrens. I have been sick for the past 18 months. I kept going from doctor to doctor without getting much help. I decided to travel to the Cleveland Clinic for a diagnosis and treatment. That was the best choice I could have made. I have lots of neuropathy, severe fatigue, muscle and joint pain. I am looking for someone to chat with that I really understands what I am going thru. My family understands a little.

~~~~~

E-Pal number 2009-151

Name:  Shauna
Gender: female
Age: 42
Lives in: BC, Canada
Years with: 0

About Me: Newly DX with SS - positive SS-A/B, RA, thyroglobin etc... liver/spleen enlargement, FM DX, T2 DM... looking to share and learn from someone with same. Married, 3 grown children, cardiology technologist, 2 house critters. Good sense of humour.

~~~~~

E-Pal number 2009-150 *Special Request*

Name:  Beth
Gender: female
Age: 40
Lives in: 
Years with: 0

About Me: My boyfriend has Sjogrens. It is really hard on him. I need some answers on where we can turn for help. He cant eat solid foods because of no saliva. I puree the food for him. He is starting to get angry because of this disease. Help me please!

~~~~~

E-Pal number 2009-149

Name:  Nichole
Gender: female
Age: 32
Lives in:  Massachusetts, USA
Years with: 10?

About Me: Hi, I was diagnosed with sjs about a year ago after many years of mystery symptoms. I am single, no children. Looking for someone around my age to talk to.

~~~~~

E-Pal number 2009-148

Name:  Margie
Gender: female
Age: 61
Lives in:  Pennsylvania, USA
Years with: 8+

About Me: I live in Bensalem, PA with my 4 year old Maltese dog. I was diagnosed with SS and CREST Syndrome in 2004, but I had symptoms for at least 10 years before that. I had seen many doctors and finally I saw a dr. at the SS Center in Philadelphia, PA and he knew what was wrong with me. After testing, he confirmed I had SS and CREST Syndrome. Finally I had a diagnosis and could begin to figure out how to live with this on a daily basis. I would love to have some e-mail pals to share our journey. I enjoy reading and the computer. Thanks!

~~~~~

E-Pal number 2009-147

Name:  Robin
Gender: female
Age: 47
Lives in:  Arizona, USA
Years with: not sure

About Me: I am still(6 months later) going through the diagnostic phase. Labs are negative.  Had a lip biopsy and the ENT did not take enough glands so it was inconclusive however suggestive of SS. It was painful and took long to heal so I'd rather not have another one. One rheumatologist says I do not have Sjogrens and another says he believes I do.  Have had dry eyes (better with Restasis) and dry mouth (but sometimes it feels almost normal), fatigue and joint and muscle pain (was severe for a few days now barely there). The fatigue still gets bad. Am very frustrated and just want to know if I have it or not so I can begin to deal with it.  Not knowing is the worst.

I am single, in Az , love to hike, read , have two cats.

Anyway, as most of you know we can feel bad and look normal so it's helpful to connect with those in the same boat.

~~~~~

E-Pal number 2009-146

Name:  JoAnne/Joey
Gender: female
Age: 57
Lives in:  New Hampshire, USA
Years with: recently diagnosed

About Me: Hi everyone ! I am happily married - and mother of three grown wonderful sons ! Had modeled most of my life and happily quit that about 7 years ago - am currently working in Marketing/Sales and have been loving it, so happy to have evenings and weekends back in my life :))) Although I was just recently diagnosed with primary Sjogrens, like many of you, I suspect I've had it for many years ( blaming my symptoms over the years on my TMJ ) - I don't have the facial swelling/pain or mouth sores etc but do have achey/stiff muscles and joints, stuffy ears, fatigue, and in just recent years, the dry eyes and mouth, etc.
( although the dry eyes and mouth are not extreme right now )- With only recently getting this diagnosis last week ( and having never heard of it before ) i was panicked, have been reading about it...and have just found this wonderful site ! I'm a very active person and am so hoping I can somehow get a handle on it and do my best to keep life as full as possible ! I'd love to be of support if I can - and get some support as well since this is all so new to me - If anyone is going through these similar symptoms around my age ( or any age :) please email as I'd love to hear from you:) I think most of us want to know that we can grow old with this ...with humor and being positive, lol ;)

~~~~~

E-Pal number 2009-145

Name:  Beth
Gender: female
Age: 50
Lives in:  Washington, USA
Years with: ?

About Me: Overwhelmed with complications of Sjorgren's. Liver involvement (Primary Biliary Cirrhosis) neuropathy in both arms, fatigue, aches and pains, bladder infections...a long list of side effects. Would like to connect with someone having similar issues.

~~~~~

E-Pal number 2009-144

Name:  Judy
Gender: female
Age: 55
Lives in:  Indiana, USA
Years with: ?

About Me: HI, HOPE YOU ARE DOING GOOD! I DON'T KNOW IF I HAVE THIS OR NOT. I DO HAVE IT IN MY NECK AND WRISTS. INDIANA WEATHER IS STARTING TO GET COLD. I FEEL LIKE MY PAST RHEUMATOLOGIST HAS DEFINITELY BEEN HIDING THINGS FROM ME. HOPE YOU CAN HELP! ALWAYS LOVED DOING THINGS OUTSIDE AND GOING PLACES.   TAKE CARE, BYE

~~~~~

E-Pal number 2009-143

Name:  William
Gender: male
Age: 54
Lives in:  Arizona, USA
Years with: 4

About Me: I am a guy who developed this weird disease 4 years ago. I have the dry eyes,mouth, and I have this tongue that hurts all the time. I would love someone to talk with who understands this strange illness.

~~~~~

E-Pal number 2009-142

Name:  Teresa
Gender: female
Age: 49
Lives in:  Tennessee, USA
Years with: less than 1

About Me: Just been diagnosed--just want someone to share with. Maybe someone that has had it awhile. I still work full time but it is getting really hard--but I don't want to give up either. Just someone to chat with about this. :)

~~~~~

E-Pal number 2009-141

Name:  Michele
Gender: female
Age: 55
Lives in:  Australia
Years with: 3

About Me: My symptoms began over 6 months period. First dry eyes then burning tongue and sore throat then sore hands and finger tips then sores tops of feet. I am also very lacking in energy and have muscle and joint pain feel anxious and have a real sick feeling like I am getting the flu often. My symptoms fluctuate in intensity, I have good days and bad. I have an ANA 1:160 but a negative lip biopsy one optometrist thinks I have severe dry eyes another just thinks it is blepharitus. I am so confused. A professor of immunology thinks I have ss and another associate professor does not. Please help me to understand. The worst part is my burning tongue. Does anyone have similar symptoms. Would love to chat. Some days I feel like I don't want to go on other days it improves. I have had to cut down my work to cope.

~~~~~

E-Pal number 2009-140

Name:  Carrie
Gender: female
Age: 46
Lives in:  Texas, USA
Years with: less than 1 year from diagnosis

About Me: I am looking for someone to talk with. I have been just diagnosed about a month ago. I just got out of the hospital less than a week ago and am now homebound and cannot do anything. I am trying to learn what is happening to me and see if there is someone else out there with the same.

~~~~~

E-Pal number 2009-139

Name:  Stacy
Gender: female
Age: 46
Lives in:  Michigan, USA
Years with: 10

About Me: I would like to correspond with someone who has had SS for a while, and just chat about how I'm feeling and dealing with the disease.

~~~~~

E-Pal number 2009-138

Name:  Julie
Gender: female
Age: 55
Lives in:  USA
Years with: unknown

About Me: Looking for folks who have Sjogrens or are coping with it, to trade information, coping techniques, treatments options and support.  I am a mental health therapist, a mother, wife and enthusiastic advocate in mental health, head injuries and chronic pain.  I love the rocky mountains, MUSIC, traveling, good friends and Civil War history.

~~~~~

E-Pal number 2009-137

Name:  Helen
Gender: female
Age: 43
Lives in:  Alabama, USA
Years with: 9?

About Me: Diagnosed with Sjs in 2000 and treated for 6 years.  Stopped treatment due to worry about eyes and nothing changing.  I now have further disease involvement and am looking for proof of Sjs not just a guess.  Praying about starting treatment again either way.  FYI:  I have a sacral nerve stimulator due to neurogenic bladder.  Looking for someone locally to bounce ideas off of and talk with.  I like movies, family time and home improvement.

~~~~~

E-Pal number 2009-136

Name:  Debbi
Gender: female
Age: 50
Lives in:  Wisconsin, USA
Years with: 3

About Me: I am a recently retired Army Vet who's been trying to work through Sjogren's without affecting my career. Married, no kids unless you count the dog and cats! I am hoping just to find someone to talk to about the frustrations associated with this. I do lampworking as a hobby and enjoy the quiet time where I don't have to talk and can just create.

~~~~~

E-Pal number 2009-135

Name:  Jacki
Gender: female
Age: 37
Lives in:  Wisconsin, USA
Years with: 2

About Me: Hi, I am married, no kids except the furry kind. 2 dogs and 2 cats. I enjoy riding my motorcycle, ATV, hiking, outdoors, gardening, scrapbooking and making stepping stones. I worry about how long I will be able to do these hobbies. It started with sore joints in my hands and swelling. I have always had other joint pain (back, knee, ankle etc) but I blamed my weight (which doesn't help) I blamed the dry eyes on the computer and dry mouth due to smoking (which I don't do anymore). Who knew there was more too it? I also suffer from depression and anxiety so I am dealing with a lot of stuff and find it hard to talk about it.

~~~~~

E-Pal number 2009-134

Name:  Katharine
Gender: female
Age: 52
Lives in:  Pennsylvania, USA
Years with: 1

About Me: I have been diagnosed with Sjogren's this past year and have liver involvement. I would love to talk to someone who has Auto-Immune Hepatitis or anyone who would like to chat about Sjogren's.

~~~~~

E-Pal number 2009-133

Name:  Deb
Gender: female
Age: 46
Lives in:  Ohio, USA
Years with: 2

About Me: I am 46 years old, work full time as a nurse, have 3 daughters all in their 20's, a spouse, 2 precious pooches and it appears that I now have Sjogren's too! Joy, Joy!
still awaiting a definite diagnosis, but 2 of my physicians feel certain this is my diagnosis. I see the rheumatologist for the first time on Wednesday. would love to chat with anyone, especially anyone that may live near me in northeastern Ohio.

~~~~~

E-Pal number 2009-132

Name:  Heather
Gender: female
Age: 25
Lives in:  California, USA
Years with: 11

About Me: I was diagnosed 11 years ago with Sjogrens, but had only minimal dryness and joint pain until recently. I have been in a flare-up for about six months with extreme joint pain, swelling of the joints, fatigue, and chronic hives. On top of that about every two weeks it was some type of bacterial infection, or sinus or bladder infection, as well as stomach problems caused by all the meds. I do have support from family and friends but just want to talk to someone who understands. I'm trying to be as positive as I can and am interested in natural remedies. I have been taking fish oil and glucosamine and really notice a difference. I am also trying to gain as much knowledge as I can about this disease. Looking forward to getting to know people on here!!

~~~~~

E-Pal number 2009-131

Name:  Jaya
Gender: female
Age: 32
Lives in:  Florida, USA
Years with: 1

About Me: I am mother of 2 boys and engaged to be married. I love gardening and cooking. I was diagnosed with Sjogrens in April but have had it longer than that. Finally put a name with what I was feeling. Just looking for someone to chat with to see if what I am feeling is normal for this disease. I feel very alone with this. Family is sympathetic and tries to understand but it's not the same as speaking with some who knows what I am going through. My life has completely changed from two years ago.

~~~~~

E-Pal number 2009-130

Name:  Kathy
Gender: female
Age: 31
Lives in:  Texas, USA
Years with: 5

About Me: I am just looking to share experiences and the difficulties that living with SS can bring.

~~~~~

E-Pal number 2009-129

Name:  Amy
Gender: female
Age: 42
Lives in:  Australia
Years with: 10 months

About Me: Hi there, my name is Amy and I have been diagnosed with SS recently. Although I have lived with the soreness and fatigue for the last 10 years and have been to many medical practitioners, none could tell me what was wrong with me. I was even told once that it was in my "head"! I am getting the dry eyes and mouth now, but its the difficulty in swallowing, the slurred speech and brain fog that really get to me. I would like to chat and listen to someone going through the same situation.

~~~~~

E-Pal number 2009-128

Name:  Ellen
Gender: female
Age: 43
Lives in:  Florida, USA
Years with: 3

About Me: My autoimmune age of onset was 12, but the SS didn't present until 17; my two oldest daughters have suffered greatly from autoimmune, and I find myself currently fighting for my life from the SS. I am looking for to meet someone else whose SS is progressing towards lymphoma and suffers from chronic lymphadenopathy/parotiditis.

~~~~~

E-Pal number 2009-127

Name:  Kylie
Gender: female
Age: 35
Lives in:  Australia
Years with: 3

About Me: I'm 35, a psychologist and live with my defacto partner (no children yet). I'm currently working in private practice which has been my dream since I commenced my university studies 7 years ago. Sadly I have had to reduce to part time hours as a result of constant flare up of symptoms (fatigue, headaches, back & neck pain, brain fog). Ironically I am only just coming to terms with the emotional aspects of this disease. I can now see I was in denial for some time, cycling between pushing and crashing. I'm constantly having time off work even with reduced hours. I worry about the future. My partner and I are in the process of buying our first home together and are trying to fall pregnant. I worry about not being able to contribute financially as time goes on. I worry that I won't be able to have kids. I worry that if I do I will pass this disease on to them. I have the most supportive partner but I worry that as the years go by he will become resentful of me and the impact this disease has on our lives. I am interested in talking to someone around my age and at a similar life stage.

~~~~~

E-Pal number 2009-126

Name:  Melissa
Gender: female
Age: 32
Lives in:  California, USA
Years with: 3

About Me: I was diagnosed with Sjogren's three years ago. It gets frustrating having to deal with something that a lot of people haven't heard of. I would like to talk to anyone that is around my age who is dealing with the same thing. I just got married a year ago, and do not have children yet. I am applying to grad school for nursing this year.

~~~~~

E-Pal number 2009-125

Name:  Vickie
Gender: female
Age: 58
Lives in:  Ohio, USA
Years with: 2

About Me: I was diagnosed with Sjogren's 2 years ago. I was told my the family doc that I had a connective disease over 20 years ago, one Rheumatoligist diagnosed Lupus. I have the extreme sun sensitivity, rash and confusion after being in the sun even for a short time. But the diagnosis of Sjogren's not Lupus was confirmed only 6 months ago. I recently tested positive for hypothyroidism by my Rheumy and am scheduled to see MD next week for meds. My mother died from non-Hodgkins Lymphoma, my sister has Celiac disease (the gluten allergy). My daughter has Raynaud's. Seems we all have some sort of autoimmune condition. Would like to share my experiences and concerns with someone.

~~~~~

E-Pal number 2009-124

Name:  Wendy
Gender: female
Age: 59
Lives in:  NSW, Australia
Years with: 10+

About Me: Although I have just been diagnosed officially I have had Sjogren's for over 10 years and been treated for just about every thing else. I am a retired educator and really enjoy being a grandparent. I am new bridge player who is enjoying the challenge and the new friendships I have found will try to master this amazing game.

~~~~~

E-Pal number 2009-123

Name:  Patti
Gender: female
Age: 50
Lives in:  Florida, USA
Years with: Diagnosed 2009

About Me: Kidney stones lead me to Renal Tubular Acidosis which lead me to a Sjogren's diagnosis that explained my extreme fatigue, dry eyes, blurred vision, dental problems, dry mouth, lips, and skin, difficulty swallowing, "brain fog", joint pain, muscle weakness, and light sensitivity. Prior to this insanity, I was very physically active and mentally sharp. My ability to work as an accountant has diminished. Would love to share my concerns and get ideas on how to keep this disease at bay.

~~~~~

E-Pal number 2009-122

Name:  Kathy
Gender: female
Age: 49
Lives in:  none entered
Years with: 2

About Me: Have Sjogren's and Non-Hodgkin's lymphoma(pulmonary). looking for e-pal with similar medical conditions.

~~~~~

E-Pal number 2009-121

Name:  Rhiannon
Gender: female
Age: 23
Lives in:  NSW, Australia
Years with: 7

About Me: Hi all,
I'm 23, a law student, and I'd never heard of Sjogrens before I was diagnosed. I also have asthma and allergy problems but the biggest problem I've been facing is the roller-coaster emotions. I'd love to hear from anyone, but especially people close in age to me. A problem shared is a problem halved! Lets share some positive thoughts.

~~~~~

E-Pal number 2009-120

Name:  Jen
Gender: female
Age: 35
Lives in:  Indiana, USA
Years with: 7

About Me: I have had Sjogrens syndrome for 7 years and was diagnosed with asthma about a year ago. I recently suffered my 3rd miscarriage and wonder if anyone dealing with this type of loss would like to share their experience.

~~~~~

E-Pal number 2009-119

Name:  Cindy
Gender: female
Age: 55
Lives in:  Indiana, USA
Years with: 30

About Me: Married, no children, work full-time in construction. I enjoy reading and anything competitive - like golf (although don't play much), traveling to places where we can drive to, friends, dinner out, and MOVIES! I am still pretty active. Would like to have someone I can talk with frequently and who understands what we are dealing with, just to say hey and how are you feeling, and did you notice this symptom recently, etc. Friends and family don't want to be a part of all that. Thanks!

~~~~~

E-Pal number 2009-118 *Parent of child with Sjogrens*

Name:  Amanda
Gender: female
Age: 39
Lives in:  North Carolina, USA
Years with: newly diagnosed

About Me: Actually I do not have Sjogren's Syndrome but my 11 year old son just got diagnosed last week. I am learning it is very uncommon for males and children to be diagnosed with Sjogren's so I would love the support of anyone that can help me, my son and our family on our new Sjogren's Journey. It would be so helpful to talk to someone who can give me feedback on how best to support my son. We had never heard of Sjogren's until last week so any feedback and support would be greatly appreciated. Thank you!

~~~~~

E-Pal number 2009-117

Name:  Sacha
Gender: female
Age: 22
Lives in:  California, USA
Years with: 1s

About Me: I have been recently diagnosed with Sjogren's and I'm looking for someone about my age to talk with about this disease. I have lots of questions. I'm looking for advice on how to deal with my symptoms while going to school and working. I'm an Illustration major and I work as a graphic designer. The brain fog and chronic fatigue is really frustrating, but I know ultimately that God's got everything under control. Can't wait to meet you!

~~~~~

E-Pal number 2009-116

Name:  Beverly
Gender: female
Age: 51
Lives in:  England
Years with: 8 months

About Me: I began to have awful blood shot sore eyes earlier this year. I went to 3 opticians for help. One suggested contact lenses. My mouth was very dry and my vagina had been dry for about 2 years, which I had put down to menopause. I haven't had a proper cold for years now, but always used to suffer with sinus problems. Recently I realised I can't cry anymore. I begged my GP for blood tests. He noticed my rheumatoid level was up and mentioned Sjogrens. I found the specialist via the internet, plus an ophthalmologist specialist at Moorfields hospital and am awaiting a lip biopsy. The blood tests were not conclusive.  I think I am at the preliminary stages and get quite nervous reading what this can lead to. My friend in Seattle has NH Lymphoma and has suggested a very good form of Green Tea Tablets.
I would be very happy to talk to anyone as new to this as me to compare notes.

~~~~~

E-Pal number 2009-115

Name:  Gail
Gender: female
Age: 37
Lives in:  Mississippi, USA
Years with: a few months

About Me: I am 37 years old woman, and been suffering from SS symptoms for 4 months now. I am not diagnosed yet. I want to talk to some women with this condition, and maybe they can help me understand what is going on. I am very scared and need a friend to talk about this disease. Maybe some guidance in doctor's choice. I just suddenly stopped producing tears and cannot cry. Is it normal? Please contact me. Gail.

~~~~~

E-Pal number 2009-114

Name:  Laura
Gender: female
Age: 52
Lives in:  Texas, USA
Years with: 2+

About Me: I have been quite ill since January 2008, and just now beginning to get my life back. I was sick with what I now believe was a virus (3 months), but between doctors they gave me antibiotics and cortisone (3 rounds antibiotics, 1x cortisone) guessing sinus infections, bacterial infection of some sort. I discovered the Sjogren's connection through my own research, and finally got diagnosed by a rheumatologist. I lost 30 pounds not being able to swallow/eat, had my gall bladder removed (that was a mistake), took acid-reflux meds (also a mistake), had untold gastrointestinal tests taken, allergy tests, etc. I am now on pilocarpine tabs for my dry mouth 4x/day and have plugs inserted in my eyes. I take natural herbs for my kidneys and digestive enzymes to help digest my meals. Still experimenting day by day. Would love someone to share the ups and downs of daily living with and to help each other out with new discoveries that may work. I was writing a novel when I began to get sick, and I really want to get back to that daily!

~~~~~

E-Pal number 2009-113

Name:  Patty
Gender: female
Age: 36
Lives in:  Alabama, USA
Years with: 2+

About Me: I've been positively diagnosed with FMS. In the past several years, my rheumatologist states he believes I have Sjogren's. Have had positive labs, dry eyes, dry mouth, difficulty swallowing, nose & mouth ulcers. At this point, I'm having kidney problems and am concerned about involvement there. I would love to have someone to discuss it with.

~~~~~

E-Pal number 2009-111

Name:  Martha
Gender: female
Age: 51
Lives in:  Texas, USA
Years with: 4 mos.

About Me: In Feb '09 mouth started burning really bad. April landed in hosp with distal paralysis from kidneys dumping my potassium. Roller coaster since then, high blood pressure, thyroid, Reynaud's, pain in feet and finger tips, no reflexes. Now back to walking dog 45 mins. daily and going full speed. Don't know how I can go from flat on my back to fine again although it took 3 months to get strength back. Lip biopsy negative, blood test negative but dr. says, with dry eyes (lids that stick to eye if crying), burning mouth and tongue, and high ANA, he's sure it's Sjogrens. My husband and sisters, kids, just want there super person back again. Understanding disappeared in 3 weeks. Anyone Tests Negative but really has it??

~~~~~

E-Pal number 2009-110

Name:  Nur
Gender: female
Age: 25
Lives in:  Virginia, USA
Years with: newly diagnosed

About Me: Hi, I hope you all are doing well. I am newly diagnosed with Sjogren's Syndrome and in the process of learning about it. I would like to meet other ladies around my age or older to share thoughts and experiences with and hopefully learn more about this connective tissue disorder. I am a nurse, married, and have a 9 month old baby girl. Thank you.

~~~~~

E-Pal number 2009-109

Name:  Francesca
Gender: female
Age: 24
Lives in:  Pennsylvania, USA
Years with: 2

About Me: I have been possibly living with Sjogren's for a little longer than two years, but the CNS symptoms didn't show until last summer, and they've been stuck with me ever since. As I mentioned, I'm 24, and no one in my immediate or my extended family has anything like this, so it's hard for them to relate to me. My friends are the same way, but they can be supportive.
In regards to my interests, I love anything to do with music. I am a classically trained singer/musician. I also love the outdoors, reading, knitting, baking, astronomy, gardening, painting, dancing, and anything else that can make me smile!
Overall, I would like to talk to someone closer to my age because I would like to know how this affects his or her life, and how they're coping with it at such a young age.

~~~~~

E-Pal number 2009-108

Name:  Audra
Gender: female
Age: 34
Lives in:  Pennsylvania, USA
Years with: 10

About Me: I believe I have had the symptoms of Sjogren's for 10 years, but I didn't know what it was until last week. The doctor said it is Sjogren's based on the antibodies and symptoms. I would like to talk to someone who has similar symptoms to me. My symptoms are picky eyes, achy legs, extreme fatigue in the afternoon/evening hours, and frequent headaches. I also notice that I can't drink any kind of alcoholic beverages or I get an instant headache. This really puzzles me because I never got this when I was younger. I am taking medicine hoping it will work but who knows.

~~~~~

E-Pal number 2009-107

Name:  Karen
Gender: female
Age: 65
Lives in:  North Carolina, USA
Years with: ?? 10 or more

About Me: I guess I would like to share feelings and ideas about living with Sjogren's. Sometimes I feel very alone. I collect Sasha dolls, love to read mysteries, am a retired nurse.

~~~~~

E-Pal number 2009-106

Name:  Vivian
Gender: female
Age: 71
Lives in:  Georgia, USA
Years with: 6 months

About Me: I live in a small town in Georgia and married to a wonderful man. No one in our small community that I know has ever heard of Sjogren's Syndrome and sometime I feel so alone with having no one to discuss the myriad of symptoms and feelings of being alone in a world of people who are not hurting or tired. Would love to have an e-mail partner who shares these feelings to be a partner with. I would love more information from anyone willing to share with me. I look forward to hearing from a fellow Sjogren's sufferer. Vivian

~~~~~

E-Pal number 2009-105

Name:  Kathy
Gender: female
Age: 60
Lives in:  New Jersey, USA
Years with: 3

About Me: I haven't been dx'd yet but have had symptoms for the last 3yrs. Dry eye has been confirmed but I can't seem to find an Oral surgeon qualified enough to help me, nor get an appt while I'm having the problems. It's extremely frustrating. I find reading, knitting & quilting small projects comforting and relaxing. Is there an EPal that would share how they were dx'd or how to find doctors knowledgeable about this disease (NJ).

~~~~~

E-Pal number 2009-104

Name:  Eva
Gender: female
Age: 53
Lives in:  Washington, USA
Years with: few months

About Me: I'm a single 53 yr old, who has had SS symptoms for a few years now, but just this March, it was made possitive. I'm haven a hard time dealing with the dry mouth and eyes. Tried everything.! The headaches and being tired all the time are almost more then I can stand. Still working but less and less as time goes by. I some days feel so alone. My husband passed away many years ago. I truly need someone to talk with about all thats goin on.

~~~~~

E-Pal number 2009-103

Name:  Stasia
Gender: female
Age: 43
Lives in:  Poland
Years with: 14

About Me: Diagnosed a year ago, but have had symptoms much longer. I take Plaquenil, but not noticing any improvement so far. I have dry eyes, gritty eyelids, burning sensation, joint and muscle pain, fatigue and memory losses. I work in a printing company, unfortunately spending much time in front of a computer screen. To improve my memory I attend adult school on weekends, however it is difficult when my eyes get easily tired from reading. In my free time I like hiking mountains, cycling and sightseeing. I love visiting caves, there is plenty of moisture there :-) I would like to make new friends to help each other and share experiences in fighting SS.

~~~~~

E-Pal number 2009-102

Name:  Lorraine
Gender: female
Age: 50
Lives in:  Toronto, Canada
Years with: not diagnosed yet

About Me: I was and still am very optimistic, I have had major dryness in my eyes and redness for over a year and a half.  Went to a ophthalmologist about 14 months ago and he gave me an antibiotic and said he was not going to do any testing unless I had $200.00 to do them. Hence they were never done. When I turned 50 I went back to my family doctor and he did a physical and at that time my eyes were not so bad until just recently,  when it is now at the point where I have one eye opened and one eye shut. I where sunglasses all the time even at night when I drive not good.  I do have Arthritis throughout my whole body and a very dry mouth as well.  I was and still am the type of person where when something hurt to just get up and keep going. Well what a mistake that was to my health without even realizing it.  I just took an advil and then got on with what I was doing.  It patched up the pain for the time until the next bought started, does this sound familiar to anyone.  I had always tried to be aware of my body/health I just don't know how all of a sudden this crept up to me.  My family doctor when he saw me last week was quiet concerned because he thought I had a disease called Iritis, and wanted to get me to an ophthalmologist or an optometrist as soon as possible.  I then thought how am I going to do this because I had no money.  Well somehow I thought my eyes were more important than money at this point and I took the money, all that I had and ran to the optometrist.  When I got there the Doc was amazing and extremely quick with all the testing that he had to do.  He told me it was not Iritis but to take the meds and come back in one week.  Well yesterday I went twice to see him and he had a strong hunch that Sjogrens is what He strongly feels that I have.  I went to work with at least some sort of hint of what it might be. He also is making a appointment with an extremely good ophthalmologist to see. At the end of it all in that one week the Doc did not charge me for a thing after all the testing he did not even a dime.  He was just amazing and now from what I have read there is still some testing that I have to go through but why could the very first ophthalmologist not know or even have some sort of clue as to what was going on over a year and a half ago, instead of it progressing to the point of I thought I was going almost blind.  There are many mornings that I wake up and can't see out of my eyes for sometimes about an hour or so, then eventually my right eye opens then my left one most of the time does not.  I have seen a neurologist too who just basically brushed me off because sometimes I fell that because your a woman they think it is all in your head, well when all the testing is done and this comes back positive I will be going back to see these two doctors and giving them a huge piece of my mind.

~~~~~

E-Pal number 2009-101

Name:  Caroline
Gender: female
Age: 29
Lives in:  Georgia, USA
Years with: 6 months

About Me: My autoimmune journey began when I was 6 with JRA and continued with me dx with multiple sclerosis in 07, followed by SS in 09. My MS is (mostly) behaving. The SS is fierce tho! Married almost 5 yrs and in spite of the medical drama, hoping to have kids someday soon. My eyes are the worst. having corneas involved after only 6 mo. Nuts. love to exchange ideas on symptom management and the fears over being an autoimmune mom! Thanks.

~~~~~

E-Pal number 2009-100

Name:  James
Gender: male
Age: 20
Lives in:  Texas, USA
Years with: 1 year

About Me: Howdy everyone, my name is James and I was diagnosed with Sjogren's back in 2007. Ironically, I'm an immunology researcher, so if you have questions about Sjogren's or any other autoimmune disease, I can answer them. I've never met any females around my age with Sjogren's, so I guess that's who I'd like to meet.

~~~~~

E-Pal number 2009-099

Name:   Wendy
Gender: female
Age: 32
Lives in: Texas, USA
Years with: 15

About Me: Hello, I was recently diagnosed with Sjogren's. After many years of chronic sinus and ear infection and countless other symptoms I finally got a flare which made my hands and feet tingle and at times numb. It took 4 months of kicking and screaming to get 2 neurologist to keep looking. A positive ANA test lead me to a Rheumatologist who found ss-a and ss-b. I have 2 beautiful boys and just want to talk to someone who understands me.

~~~~~

E-Pal number 2009-098

Name:   Laney
Gender: female
Age: 36
Lives in: 
Years with: just diagnosed

About Me: Hi, My name is Laney. I was just diagnosed with Sjogren's after some weird years of strange symptoms. My doctors keep telling me I am a "mystery". Not what I want to hear. I am 36 with 3 beautiful boys. I would love to have another child but now I don't know if it is possible. I am scared of what the future might bring but trying to remain positive since I have no symptoms right now. Would love to chat with someone to make it easier to get through. I am definitely a positive, laid back kind of person.

~~~~~

E-Pal number 2009-097

Name:   Kristi
Gender: female
Age: 35
Lives in: New Jersey, USA
Years with: just diagnosed

About Me: Hi all. I am 35, and pregnant with my first child. I was just diagnosed with SS today. I have had symptoms though from age 14. No one knew what I had. I am still going though testing to find out if it is primary or secondary. I am looking for someone who can enlighten me, commiserate, and joke with. Humor helps healing.

~~~~~

E-Pal number 2009-096 Updated!

Name:   Melanie
Gender: female
Age: 45
Lives in: Pennsylvania, USA
Years with: 1

About Me: Hi, Maybe, maybe not, "very hard dx to make" I have had allot of medical problems, ever since my hyster, when I was 38.
I started with severe face pain that became unbearable, went to see a neurologist who ran numerous tests on me.
It came back with Sjogrens "B" and not positive for Sjogrens "A". I went to see a rheumy, he is very confused I have numerous symptoms, and they have never seen Sjogrens B without A. My ANA titre is also positive. I am on Amitryptiline, to take care of my neural affects, but still have not had a positive dx. My fatigue was unbearable and I had a tough time dealing with a possible diagnosis. The last words from the rheumy was "live your life" I have decided to exercise everyday and not let this get me down. Anyone with similar problems?

~~~~~

E-Pal number 2009-095

Name:   Karen
Gender: female
Age: 67
Lives in: Iowa, USA
Years with: dx 1995

About Me: I'd really love to E-Pal with someone about my age and/or in or near Iowa. I'm also dx with Rheumatoid, Mixed Connective Tissue, IBD, vasculitis, pleurisy, poly neuropathy and paresthesia, and on and on...all companions of SjS. I dearly love to garden (now limited) Master Gardener, paint, make cards, crochet, quilt, and enjoy my little dog and all outdoors. I have 3 children, 3 stepchildren, 3 grandchildren. I retired (on disability), have great doctors, but still get frustrated with physician lack of knowledge. I believe I had SjS since about 29 and was diagnosed by my eye-doc who thought I had MS at first. He placed tear duct plugs that really help the dry eyes. I try to keep up with some sort of social life, but fatigue sometimes dictates otherwise. An E-pal would be a great door to the outside world. I have a sunny attitude and am a "grandma who likes to hug" according to my grandkids.

~~~~~

E-Pal number 2009-094

Name:   Ann
Gender: female
Age: 38
Lives in: California, USA
Years with: 9 years

About Me: Let’s share gripesgrumbles n goodstuff! Dxd 2 yrs – have tried dozens of meds n specialists. Have beau of 9 yrs & 3 fur kids, many single pals! Enjoy films: vintage, animated, comedy, foreign, PBS, NPR, books, tea, walks, nature, retro, meditation, higher power, positive thinking. Crafts TBA: photos, film, paint, finger knitting – to learn: sewing machine, beading. Have some pain: Peripheral Neuropathy, sciatica, joints, insomnia, dryness. Lost with SSI, SSDI, Medi-caid, Medi-care, Medi-cal. Cheers!

~~~~~

E-Pal number 2009-093

Name:   Chris
Gender: male
Age: 46
Lives in: Texas, USA
Years with: 7 years

About Me: I am an active mid age man with two wonderful kids and a caring wife.
I love sports and international affairs. I looking for shared experience and e-pals are dealing with the dry mouth.

~~~~~

E-Pal number 2009-092

Name:   Marie
Gender: female
Age: 78
Lives in: Pennsylvania USA
Years with: 6 years

About Me: I was shocked to see how many young people are affected with this disease. I only found one ad from a person my age. I was dx in 2003, mainly complaining of severe dry mouth and eyes. It has progressed to joint and muscle pain, vasculitis, and at times, extreme fatigue. I can sleep for hours, at night or during the day. Would like to compare life style and symptoms with someone close in age.

~~~~~

E-Pal number 2009-091

Name:   Valerie
Gender: female
Age: 35
Lives in: New Jersey, USA
Years with: 1 year

About Me: I am a 35 year old mother of 2 girls.. I am finding that this whole autoimmune nightmare is like putting a big puzzle together.. I just want to know what to expect.. I am very scared of the unknown? The only symptoms I have now are dry eyes and joint pains in my hands & feet.. I am currently just taking advil for the pain. I feel very alone My family is not supportive at all.. They think I look great so there is nothing wrong with me. Need advice??
Thanks, Val

~~~~~

E-Pal number 2009-090

Name:   Amy
Gender: female
Age: 32
Lives in: Texas, USA
Years with: 7 years

About Me: I have secondary ss. Not sure what my primary is, although when initially diagnosed, dr said I had several of the characteristics of lupus and that he didn't want to quite dx me with that at such a young age. I suffer with dry eyes and arthritis. I have a 19 month daughter and struggle frequently with the joint pain and fatigue.

~~~~~

E-Pal number 2009-088

Name:   Kerri
Gender: female
Age: 36
Lives in: California, USA
Years with: 7 years

About Me: I was recently diagnosed with SS after 2 years of chronic pericarditis, dry eyes, and dry lips. I have been getting drier as time has passed. I am lucky to have a supportive husband, but I don't know anyone with Sjogrens or any other autoimmune disease. I enjoy hiking and camping, but lately I have been struggling with bouts of fatigue. I would like someone to talk with about the various symptoms of Sjogrens.

~~~~~

E-Pal number 2009-086

Name:  Jayme
Gender: female
Age: 35
Lives in:  PA, USA
Years with: 1 year

About Me: I have been diagnosed with Sjogren's among other things. I am a mom who has recently received disability benefits and I feel totally alone with this illness. I don't think anyone quite understands what I have been going through for the past 4 years. I would love someone to talk to when there is no one else that understands.

~~~~~

E-Pal number 2009-085

Name:  Rita
Gender: female
Age: 52
Lives in:  New York, USA
Years with: 1 year

About Me: Hello, I have newly been diagnosed with Sjogren's Syndrome. I am a Speech-Language Pathologist and the only contact I have had with this condition is a patient I have had that was in the late stages of the disease. She had a lot of problems with swallowing. This scared me a little when I found out that I had the same disorder. I would like to connect with people who also have this and may want to talk about it.

~~~~~

E-Pal number 2009-084

Name:  Karyn
Gender: female
Age: 56
Lives in:  Pennsylvania, USA
Years with: recently diagnosed

About Me: I just found out last week that I have SS. I never heard of it before. I've had the dry eyes and the eye doctor had me using the drops for about 5 years now. A family doctor ran the big blood tests for all things and the SS came up then. I'm reading all I can about it now. Besides the dry eyes, okay I have the achy joints (brushing it off on getting older) a cough (dry house?) but nothing else. Now I'm wondering how to keep it all from progressing? I watch my diet and drink a lot of water anyway so I'm told that's good. And other tips would be so greatly appreciated at this point. Thanks!!

~~~~~

E-Pal number 2009-083

Name: Annette
Gender: female
Age: 55
Lives in:   Kentucky, USA
Years with: recently diagnosed

About Me: Am newly diagnosed with Sjogren's and Fibromyalgia. Also have to deal with 24 year history of RSD (I have chronic nerve pain). I am a medically retired RN with experience in critical care and infection control. I enjoy folk art painting (not that I'm very good!), yard sales, antique-ing, and spending time with family, especially grandsons ages 7&8. Of necessity, live quiet lifestyle.

~~~~~

E-Pal number 2009-082

Name:  Pat
Gender: female
Age: 65
Lives in:  MO, USA
Years with: 45 years

About Me: I like to read and have two cats that rule the house. I love all kinds of music. Love flowers. Love water color paintings. Wish I could exercise more. ss flares cause me to miss a lot but I try to stay positive I have a good sense of humor.

~~~~~

E-Pal number 2009-081

Name:  Jill
Gender: female
Age: 38
Lives in: Indiana, USA
Years with: recently diagnosed

About Me: I was diagnosed with a debilitating stroke in June 2004. I have recovered to about 95% but the evidence of stroke in my brain was not there. After years of pain and discomfort, I finally found a neurologist who did some tests. I am now working with several doctors. Because of my age MS has been brought up since 04. Now, I learn that it is Sjogren's. I do not have the dryness yet but the pain in the joints and jaw are definitely there. I am looking for someone to begin my journey with me, who I can be here for and can talk to. I am a single mom and really need someone adult to share with. I am a great listener and would love to know that I am not alone in this.

~~~~~

E-Pal number 2009-080

Special Request

Name:   Jonnell (for my daughter Jenna)
Gender: female
Age: 4 years old
Lives in:   New Jersey, USA
Years with: 1 year

About Me: My Name is Jonnell. I am a parent of a 4 year old little girl with Sjogren's named Jenna. I am looking for parents with a child with sjs or a autoimmune disease. It is very hard to find information about children and this disease. I have 3 children daughter 16 son 14 and Jenna. My fiancé Rick is a wonderful supportive man who has helped me reach out to talk to others about this disease. I enjoy helping other people, my children and learning all I can to help Jenna deal with her illness.

~~~~~

E-Pal number 2009-079

Name:  Dee
Gender: female
Age: 54
Lives in:  Texas, USA
Years with: 1 year

About Me: I have been DX with Primary Sjogren's, Lupus, Fibromyalgia. It has been a year since I was first DX. I suffer with joint, muscle pain, numbing, tingling, GERD, scarring of lungs, liver and now stomach also extreme fatigue. I have multiple doctors, each taking care of different systems. I have not gotten any better in a year in spite of all the medications. I became unable to work this year and was approved for SSDI in 2 months. I have learned a lot about this disease this year and would be willing to e-pal with anyone who would like to. I have gone through many emotions since I learned of this DX, but now I am better emotionally and want to help others with this disease.

~~~~~

E-Pal number 2009-078

Name:  Monica
Gender: female
Age: 43
Lives in:  Hawaii, USA
Years with: 5 years

About Me: Aloha,
I am Monica from The Big Island of Hawaii. I have had SS for 5 years now. I am looking for a sincere, outgoing, caring, genuine friend. Must be a good listener. Someone we can support one another through bad times and good times. Share our joys, fears and tears. Count on one another no matter what. Looking VERY forward to finding such a person to share my life's struggles with.
Sincerely, Monica

~~~~~

E-Pal number 2009-076

Name:   Vicki
Gender: female
Age: 54
Lives in: GA, USA
Years with: 9 years

About Me: Diagnosed but with no ANA stuff on it in my blood work in 2007 - - but it explains a lot of things going on back to before 2000 (years of IBS- now manageable with diet, merciless chronic pain in cervical lumbar and sometimes thoracic spine, premature facial skin aging, acute hypothyroidism, post menopausal hormone deficits, fibromyalgia, insomnia for one reason or another since early 2000s...).
I 'manage' life with a daily toolkit involving hard learned lessons in nutrition and food sensitivities, HRT, acute awareness of internal and external stress triggers (stress is lethal), weekly acupuncture, modified regular 'doable' exercise, meds, and focusing on remaining joys in my life. I was laid off work last Fall when my health problems had caused me to be only able to work 4 hrs a day. I am fighting for disability insurance and living day to day. Atlanta has a wonderful monthly SS support group which has been an invaluable educational tool...SS patients know far more than most rheumatologists and other specialists about SS and coping with it. I still deal daily with neck back and upper limb pain, fatigue and worsening dry eye and light sensitivity. My hard work has provided me a great med team with rheumatologist, ophthalmologist, holistic specialist, endocrinologist, therapist, dentist (it seems to take a village...it's a full time job dealing with auto immune body). Look forward to meeting others who know what life is life like this...it hurts, is exhausting and lonely. Maybe good company will lighten the load. :)

~~~~~

E-Pal number 2009-075

Name:  Lisa
Gender: female
Age: 47
Lives in: South Dakota, USA
Years with: Recently Diagnosed

About Me: I was just recently diagnosed with SS. Still trying to understand everything. I am scared with the future will bring. I have joint and muscle pain. My eyes and mouth aren't effected yet. I have been married thirty years, have two grown sons and a new beautiful baby granddaughter. I'm looking for someone to talk to, maybe in South Dakota, but not necessary. Just so we don't feel so alone in this.

~~~~~

E-Pal number 2009-074

Name:  Nathan
Gender: male
Age: 23
Lives in: Arizona, USA
Years with: 1 1/2 years

About Me: I'm a younger guy who's interested in networking with others around the same age. I am a bit of a nerd, and enjoy reading about immunology, rheumatology and microbiology.
I am still studying at college to become a Medical Lab Tech.
Hobbies I enjoy talking about include gaming, anime, movies, the active life (as much as I have, ha!).

~~~~~

E-Pal number 2009-073

Name:  Shirley
Gender: female
Age: 51
Lives in: Ohio, USA
Years with: many

About Me: I was diagnosed about age 25 with hasimoto thyroiditis and Sjogren's. Ten years ago I was diagnosed with celiac, rheumatoid arthritis and fibromyalgia. After severe muscle weakness, fatigue, breathing and swallowing difficulties hit me in April of 2009, I was also diagnosed with mixed connective tissue disease and polymyositis. I have pretty much lived in denial most of my life but I can no longer do that. I would like to hear from anyone that would like to correspond with me and offer some positive support. I am married 32 yrs, have two adult children and two precious grandbabies. I love to quilt and paint when I have the strength and energy. Hope to hear from any and all soon.

~~~~~

E-Pal number 2009-072

Name:  Tamie
Gender: female
Age: 50
Lives in: NC, USA
Years with: 5 Months

About Me: Recently diagnosed, Interest are our 4 grandkids, Sammy our dog, reading. I work in the school system as a Speech Language Pathology Assistant. would love to e-mail someone about this baffling illness.

~~~~~

E-Pal number 2009-071

Name:  Amanda
Gender: female
Age: 33
Lives in: Maryland, USA
Years with: 2 Months

About Me: I was recently diagnosed with Sjogren's Syndrome.  I am looking for someone that I can communicate with and work through this disease with.  I enjoy reading and spending time with my 4 year old daughter. 

~~~~~

E-Pal number 2009-070

Name: Dennis
Gender: male
Age: 40
Lives in: Idaho, USA
Years with:

About Me: One of the few guys here, looks like.  I have not been diagnosed with this condition (have a doctor appointment soon), but I am showing the signs; crazy dryness in mouth and eyes, fatigue, constantly feeling like I am coming down with the flu, etc...  These specific symptoms have just hit me like a truck in the last week or two.  Very worried about how this will affect my life (raising two young boys, working, outdoor activities like whitewater rafting, etc...).

~~~~~

E-Pal number 2009-069

Name: Marie
Gender: female
Age: 63
Lives in: New Jersey, USA
Years with: 13 years

About Me: Grandmother of 3 beautiful grandchildren. Love outdoors, gardening, walking. Anyone have sweet tooth as I, believing it comes from Sjogrens. Can't eat spicy - burns tongue & mouth. Sweets taste better / no burn. Eyes scale of 1-10 measured the worst per test Dr. did when 1st diagnosed, bad, but can be remedied with eye drops. My mouth bothers me more than my eyes. Any advice?

~~~~~

E-Pal number 2009-068

Name: Rachel
Gender: female
Age: 26
Lives in: Florida, USA
Years with: 1 year

About Me: I have just been officially diagnosed with SS and I am looking for all the help, support and information I can get. My older sister has lupus and doctors thought maybe that was what I had. Having a sister with an auto immune disease is helpful and she has been my saving grace. Although this is a scary time for me, I know that God is in control and I have nothing to fear.

~~~~~

E-Pal number 2009-067

Name:  Gloria
Gender: female
Age: 48
Lives in: Texas, USA
Years with: 3 years

About Me: In 06 shortly after moving to Texas I was diagnosed with Sjogren's but did not experience problems, so I thought. But seemingly the problems that sent me to the Rheumatologist were some of the symptoms, joint pain and now dry eyes and dry mouth. I know God is a healer and I will seek this daily. I want to be of help to someone else who understands what I am going through.

~~~~~

E-Pal number 2009-066

Name:   Mary
Gender: female
Age: 33
Lives in:  Pennsylvania, USA
Years with: 2 years

About Me: Had some form of arthritis since teen years, now diagnosed with Sjogren's and also "light" form of fibromyalgia. Rheumatologist was no help-said that I am too young to need medication. Not very active right now...Would like to talk to someone my age who has it, or someone who knows about pregnancy and Sjogren's. Also, what can I do to cope with pain that is inexpensive? Have no insurance and getting worse every day. Have extreme fatigue, joint pain, and just plain would like to talk to someone!

~~~~~

E-Pal number 2009-065

Name:   Nikole
Gender: female
Age: 23
Lives in:  Pennsylvania, USA
Years with: 1 1/2 years

About Me: Am I the youngest person on this site w/ ss? My grandmother was diagnosed a few years ago. And she noticed that symptoms I was experiencing was eerily similar to her. My mother does not have it. so maybe it skips generations. I guess the worst part being diagnosed I was a month pregnant with my first child. What really scares me is my memory loss is so bad that parts of my child's first yr. is missing. they found white spots on my MRI brain scan. Now their worried if ss is affecting my spinal chord or CNS. anybody having these type of problems?

~~~~~

E-Pal number 2009-064

Name:  Lauren
Gender: female
Age: 40
Lives in:  Illinois, USA
Years with: 2 months

About Me: I was recently diagnosed and am thinking about what lies ahead in my future. I'm incredibly active and I LOVE to exercise--biking, golfing, weight training, cardio. I have 4 dogs and love life. This diagnosis has been a blow to me. I don't have bad dryness yet, but my joints were what sent me to the doctor initially. With my "very positive" SS-A result, I know tests and changes are coming my way. Each day is a new set of symptoms. Tomorrow is the first rheumatologist appointment. Looking to talk with experienced people who have been through what I am going through.

~~~~~

E-Pal number 2009-063

Name:  Chris
Gender: male
Age: 42
Lives in:   PA., USA
Years with: 1 year

About Me: It looks like I am the only Male on this Website? :) I got a diagnosis about 1 year ago. I went to the Mayo Clinic and they said that I do not have Sjogrens. However, everything I read about symptoms it sure seems like I do. I am not sure. Looking for friends to communicate with and discuss how they live with it, the drugs they take etc. I was once on an Olympic team and over night I am living a nightmare.

~~~~~

E-Pal number 2009-062

Name:  Heather
Gender: female
Age: 36
Lives in:   Texas, USA
Years with: 4 months

About Me: The SS diagnosis came as a surprise, although it explains symptoms I've had for a long time - dry eyes & more recently dry mouth. I am SSA +. I'd like a positive pal who is interested in natural therapies and maybe has something in common with me. I don't take any meds yet and I'm not sure if I want to start just yet. I love photography, hiking, music, and reading (Lois Lowry, J.K. Rowling, Jeanne Duprau). I have a supportive husband and the greatest 2-yr-old little boy.

~~~~~

E-Pal number 2009-061

Name:  Amy
Gender: female
Age: 35
Lives in:   Pennsylvania, USA
Years with: 2 months

About Me: I am a 35 year old single female that was just diagnosed with Sjogrens this past February. I had been feeling the symptoms for about 3 years but had not gone to the doctor until September to start testing. I am basically looking for someone of any age that is going through the same things that I am. Family and friends try to help but don't really understand how I feel. I'm just looking for someone who can say..."I know how you feel" so that I know I'm not going crazy. :)

~~~~~

E-Pal number 2009-060

Name:  Debbie
Gender: female
Age: 52
Lives in:   California, USA
Years with: 4 years

About Me: I was diagnosed with Lupus in 2005, and along with that came the Sjogren's. It has gotten worse over the years. My eyes are always red and burning, my teeth are rotting, I can't swallow and I'm losing my voice!!!

~~~~~

E-Pal number 2009-059

Name:  Betty
Gender: female
Age: 52
Lives in:   Iowa, USA
Years with: Diagnosed 4/2009

About Me: Long time to get SJS diagnosis and have both types A&B. So far only minor symptoms. I also have an underactive thyroid and Reynauds in 2 fingers. I was the caretaker to my elderly parents for many years who have since passed.
Personality: Midwest friendly & generally an upbeat person. I use a lot of "old phrases" that get a chuckle. Volunteer for a group that helps the elderly keep their companion pet. I have cats of my own - 2 are rescues. Am 5ft-110lbs.
Interests: Ancient history, genealogy, auctions and reading.
For an E-Pal: Everyone is unique and interesting. I'd like to learn more about SJS and swap stories with others of life's funnies. Easier to get through things with a smile on your face - if anything folks will wonder what you are up to.

~~~~~

E-Pal number 2009-058

Name:   Shonda
Gender: female
Age: 41
Lives in:   Florida, USA
Years with:  2 days

About Me: I am a native Floridian. I have been sick for 2 years with newly acquired allergies and constant sinus infections. I was worn out, missing days at work, on antibiotics continuously, memory fog is getting worse, and just trying to get someone to listen to me. I thought I was crazy. Finally, went to a RA doctor. She sent me to ENT for lip biopsy...it came back positive for SS. Now I know why I have dry mouth, nose, skin, and other areas. What can I expect in the future?

~~~~~

E-Pal number 2009-057

Name:    Chiara
Gender: female
Age: 27
Lives in:  USA
Years with:  possible diagnosis

About Me: I am awaiting extensive testing w/ rheumatology clinic to finally find out what has been going on w/ me for the last few months.
I have experienced fatigue, bladder pain, burning, urgency, heart palpitations and trouble breathing at times.
I have had asthma for years, but that was my only medical problem that was long-lasting.
I was married in January of this year and had plans to start a family this fall after hubby and I got some things situated on the home front and at the workplace.
I just received a blood test result of positive ssb antibodies, indicative to my doctor that I have been suffering from Sjogren's.
I am absolutely devastated at the fact that I may now consider not having children literally two months after my wedding.
I am having a hard time finding what the actual risks are to an unborn child and if this is something I should even still be considering.
I think my new husband is growing tired of always hearing about doctors appointments and medical problems.
I am looking for someone to give me insight who is perhaps my age and maybe thinking about attempting to have children w/ this disease or who has been pregnant now.

~~~~~

E-Pal number 2009-056

Name:   Monica
Gender: female
Age: 44
Lives in:  Iowa, United States
Years with: recently diagnosed

About Me: I was recently diagnosed with SS. I have had symptoms for years but felt like a hypochondriac. Now, at least, I feel peace with the diagnosis and happy to know I am not crazy! I am still waiting on other test results.
I have 5 sons and one daughter-in-law. I've been married for 23 years and have a very supportive husband who is full-time military. I love being active and have biked for years but am finding the fatigue tends to steal my active time now. I love my Bichon Frise dogs and I am an artist in various mediums. I have taught nutrition for the past few years and am very interested in health and diet to help treat this disease.

~~~~~

E-Pal number 2009-055

Name:  Ana
Gender: female
Age: 38
Lives in:  Arizona, USA
Years with: 1 year

About Me: Hello Fellow Sjogren's Sufferers. I am a recently diagnosed 38 year-old mother of a beautiful 3 year old daughter. I work part time as a Speech Pathologist and a Ph.D. student. I am unfortunately in the middle of a nasty divorce and custody battle. I got the diagnosis the same week that I left my husband. He wasn't very sympathetic to my symptoms and frequently chastised me for being so exhausted so hurray for those of you with supportive spouses/significant others. I suffer from eye dryness, muscle weakness, body aches, serious fatigue, etc. I got a clue that something was really not right when my eyelid stuck to my eyeball and ripped off some epithelial cells causing a corneal abrasion - OUCH! I take Plaquenil and other supplements such as fish oil. Am trying to go organic but what a grind. Would like to be in touch with others who understand what it's like!!

~~~~~

E-Pal number 2009-054

Name:  Jessica
Gender: female
Age: 64
Lives in:  USA
Years with: 2 years

About Me: Hi Everyone! I am so glad to have found this site!  With each operation and new diagnosis, I have tried to be completely optimistic and want to gain some control over all of this. I have been researching nutrition, joined the wellness center, using the heated pool for exercises, and read uplifting books. It would be really nice to communicate with someone that knows all about this and share what works and doesn't work. I am really starting to feel that unless you have these things going on in your life, you truly don't understand. I have been diagnosed with Sjogren's for two years now, however; I believe I have had it since my twenties. In 1998, I started having severe pain in my back which turned out to be different types of arthritis and finally had a fusion in my lumbar spine (L-3/4 to S-1) and in cervical (C-2 to T-1) both with instrumentation.. nuts & bolts). I have since been diagnosed with RA and Lupus. Each month (or day) it seemed like a new pain, symptom or weakness. I did not want to sound like I was a hypochondriac so I didn't mention all the symptoms I was having relating to Sjogren's to my doctors. I now have a positive test for it as well.

~~~~~

E-Pal number 2009-053

Name:  Teresa
Gender: female
Age: 42
Lives in:  Ireland
Years with: 3 years

About Me: I live with my boyfriend of 6 years. have two teenage step daughters who live with their mom in England. have no more contact with their dad who i was married to, have pain behind my eye which is sensitive to light so i wear glasses winter and summer i have to wear peak hats. i have found that soaking my feet in mustard powder (one spoon in hot water) helps with my sinus problem.

~~~~~

E-Pal number 2009-052

Name:  Susan
Gender: female
Age: 49
Lives in:  Florida, USA
Years with: just diagnosed

About Me: I just was diagnosed with Sjogren's syndrome last week. I am looking for someone to chat with that can tell me what I can expect with this disease. I have done extensive work with the Arthritis Foundation in the Chicago, IL area leading Fibromyalgia support groups. I enjoy cooking and baking, and love kids and dogs. I have 2 grown sons and I am divorced. I do counseling with adolescents in substance abuse treatment for my primary job.
I look forward to chatting with anyone.

~~~~~

E-Pal number 2009-051

Name:  Angie
Gender: female
Age: 48
Lives in: Texas, USA
Years with: 1 year

About Me: I have been married almost 21 yrs and my children all grown up and married themselves, I have been sick my entire childhood, I was diagnosed with Sjogren's with rheumatoid factor since 2008, but I'm sure I've had it for quiet some time, due to everything going on in my body, it takes yrs to diagnose Sjogren's, I am also a diabetic with hypothyroid. I was told that dry eyes and dry mouth was noticeable but a lot more is effected, it's the entire body, I suffer a lot more then dry mouth and dry eyes, I was told that diabetes and hypothyroid is also an auto immune disease except they are common the others are rare. I could go on and on, there is just to much to post here, looking for others that suffer alone as I do.

~~~~~

E-Pal number 2009-050

Name:  MARY
Gender: female
Age: 54
Lives in: Scotland
Years with: not yet diagnosed

About Me: Hi there, I am a 54 year old woman living in Scotland. I am married with a 13 year old son, and I am also a Foster Carer. I enjoy exercise, bike rides and swimming. I take care of Cats for the Cat Protection League. Almost at a diagnosis after not feeling well for a good while. Just looking for someone similar to chat with. Thank you.

~~~~~

E-Pal number 2009-049

Name:  Heidi
Gender: female
Age: 49
Lives in: Oregon, USA
Years with: 12 years

About Me: Symptoms for 12 yrs, but recently diagnosed. I am a mother of 4, very active physically. Always attempting to improve in my life long passion....ice dancing and now understand why all the pain and lack of stamina. Tried Plaquenil for 2 months, but the hair loss and other side effects out weighed the benefits. Now, dry eyes and sinus pressure is a more recent symptom added to the rest. UGH! I would just like to chat with someone who has found some answers. My approach will be boosting my immune system naturally with diet and supplements. Heidi

~~~~~

E-Pal number 2009-048

Name:  Dawn
Gender: female
Age: 46
Lives in: UK
Years with: less then 1 year

About Me: I have been diagnosed with Sjogren's and Mctd in the last 8 months. I am a 46 year old mother of 2 . I am still undergoing many tests and am trying to find out more how to help myself and others stay positive and find a way to cope with all the symptoms. I also have Raynauds Limited Scleroderma and Carpel Tunnel Syndrome and Bronchitasis all which have been diagnosed very recently. I currently take plaquenil and omoprezol. I would like to talk to others near and far.

~~~~~

E-Pal number 2009-047

Name: James
Gender: male
Age: 33
Lives in: MI, USA
Years with: Pending

About Me: 33 year old male looking for someone to talk to about how to live life to the fullest with sjogrens new to this and i have no family to turn to for advice

~~~~~

E-Pal number 2009-046

Name: Tera
Gender: female
Age: 32
Lives in: TX, USA
Years with: 3 years

About Me: I am a 32 yr old mother of 2 boys, 10 and 6. I work full time in the automobile industry. I love to watch movies and read magazines, books and newspapers. I am looking for an e-pal who is around my age who would like to share advice, tips and sympathize about this crazy disease.

~~~~~

E-Pal number 2009-045

Name: Jodi
Gender: female
Age: 41
Lives in: USA
Years with: 5 years

About Me: I don't really know what I want in a "pal". I guess someone my age who I can bounce things off of. I have 2 kids. I home school. I've been married 22 years. I got diagnosed 2 years ago and I feel like I'm just starting to get an idea of what this means...maybe. I try to laugh as much as possible. I'm very blunt sometimes. Maybe that's 75 words??

~~~~~

E-Pal number 2009-044

Name: Wanda
Gender: female
Age: 35
Lives in: NYC, USA
Years with : recently diagnosed

About Me: I was diagnosed with Rheumatoid Arthritis 2 years ago. Then recently (within the last 2 months) I was also diagnosed with Sjogren's Syndrome and Meniere's Disease. I take many medications for these conditions and I'm looking to communicate with someone who is open to working together to find out ways to deal with this illness, because I'm finding it hard to deal with it alone.

~~~~~

E-Pal number 2009-043

Name: Elaine
Gender: female
Age: 55
Lives in: Ireland
Years with: 5 years

About Me: I've had Sjogren's for 5yrs, have R/A, thyroid probs & IBS. I moved from England to Ireland 2 yrs ago to my husbands home town. We lived in Cardiff, Wales for4yrs. I have 2 sons 28 & 26& a daughter 23. Id like to write to an e-pal in Wales, England or Ireland.

~~~~~

E-Pal number 2009-042

Name: Alex
Gender: male
Age: 68
Lives in: Florida, USA
Years with: 1 year

About Me: I am retired, widowed, aerospace engineer and live alone. Since 1994 I have been inundated with autoimmune diseases. First came vitiligo, then pernicious anemia, RA, hypothyroditis, Hashimoto's disease, then secondary SJS. My favorite pass-time is riding my motorcycle, which is severely restricted living in Florida with vitiligo and SJS.
I'm just beginning to learn what living with Sjogren's is all about.

~~~~~

E-Pal number 2009-041

Name: ES
Gender: female
Age: 32
Lives in: Texas, USA
Years with : 1 year

About Me: Was diagnosed with SS about a year ago. I'm 32 years old a mother of 3 kids. I would like to be able to talk to someone who is right around my age or anyone.

~~~~~

E-Pal number 2009-040

Name:   Cindy
Gender: female
Age: 52
Lives in: Florida, USA
Years with : 6 months

About Me: My name is Cindy and I would really like to talk to someone who lives in Florida and has the same problems as I have. I was just diagnosed with a couple different problems which are Sjogren's, Connective Tissue Disorder and Lupus. Boy, what a mess I am in and I have been healthy all my life until I moved here. I would like to talk to someone who lives in Florida because maybe we could find out why this is happening to us. Maybe its the climate or chemicals they use for plants and all the spraying they do. I had a really bad day today and just thought someone out there could explain to me what's happening to my body. Thank you.

~~~~~

E-Pal number 2009-038

Name:   Joel
Gender: male
Age: 56
Lives in: OR, USA
Years with : 30 years

About Me: Recently diagnosed with acute changes last 4 wks in my neurological status (spinal cord involvement). I was placed on ivig for 4 d and then every 4 wks and 10 mg prednisone daily. Does anyone have experience with high dose weekend prednisone? My nephew works at Washington University and that is how they use it there.

~~~~~

E-Pal number 2009-037

Name:   Rita
Gender: female
Age: 56
Lives in: SC, USA
Years with : 10 years

About Me: I have Secondary Sjogren's along with Rheumatoid Arthritis and have had many symptom's since my diagnosis in 1999. Dry eye's, corneal ulcers, swollen glands, strawberry tongue, chronic fatigue, fever, flu-like symptoms, Sinusitis, breathing problems etc. I am on Remicade and Methotrexate treatment since 2001 and have gradually done better. I still have flare-ups but God has blessed me with a great sense of humor, faith and friends. Although my friends support me, nobody knows what you are going through until they have been there. I am looking for people to share my experiences with and to try to help someone else like myself.

~~~~~

E-Pal number 2009-036

Name:   Marcia
Gender: female
Age: 41
Lives in: Missouri, USA
Years with : 6 to 8 years

About Me: I have Sjogrens and do not know of anyone else that has it and no doctor even has a clue what it is around my town. What Im looking for is someone that knows what I am going through to talk to. Someone that can help me to understand or just to talk to in my down times. Thank You.

~~~~~

E-Pal number 2009-035

Name:   Jean
Gender: female
Age: 56
Lives in: NC, USA
Years with : newly diagnosed

About Me: Have just been diagnosed. Dr. recommends I take Plaquenil as I have all the symptoms even though my blood work was negative. Want to correspond with someone about my age/gender who has previously been in good health as I want to know what I can do to help myself through diet, exercise, etc.

~~~~~

E-Pal number 2009-034

Name:   Valentina
Gender: female
Age: 32
Lives in: United Kingdom
Years with : waiting for a diagnosis

About Me: Hi, my name is Valentina, I'm Italian but I have now lived in London for over 10 years.
I have taught English to speakers of other languages for 5 years before leaving my job and re-starting on a Psychology degree. I'm on my second year now. I have started having symptoms in October, dry sinuses, sinusitis etc. As for now hypothyroid and diabetes have been excluded and I'm waiting for a diagnosis. I will join the SICCA project here in London and, hopefully they will be able to diagnose me. I'm looking for someone who is going through the same thing, someone who will listen and that I will listen to.

~~~~~

E-Pal number 2009-033

Name:   Jonnell (mother of 4 year old with Sjogren's)
Gender: female
Age: 4 (child's age)
Lives in: NJ, USA
Years with : Just diagnosed

About Me: I am a parent of a 4 year old little girl diagnosed with Sjogren's I need some help and guidance on how to handle the whining and pain she displays. am also interested on info on asthma and sicca.

~~~~~

E-Pal number 2009-032

Name:  Liliana
Gender: female
Age: 27
Lives in: South Carolina, USA
Years with : Just diagnosed

About Me: Hi, my name is Liliana. I have just been diagnosed with Sjogren's. I am experiencing the dry eyes and the dry skin. I have a decreased amount of saliva, but my mouth is not really dry yet. I also have dry lips. I would like to talk to someone that has tried natural alternatives & find out about their experience with that.

~~~~~

E-Pal number 2009-031

Name: Priscilla
Gender: female
Age: 31
Lives in: Texas, USA
Years with : diagnosed 5 months ago

About Me: Hello, I learned I had Sjogren's a few months ago. I would like to talk to anyone who has some tips on how to overcome the fatigue nothing seems to help me. I am on meds. I have a seven year old son in which I need to have energy. Thanks, hope to hear from you.

~~~~~

E-Pal number 2009-030

Name: Carol
Gender: female
Age: 56
Lives in: MN, USA
Years with : 1 year

About Me: Newly diagnosed most likely secondary to my auto-Immune thyroiditis. I am looking for someone to hold my hand and cheer me on, while I do the same for them...especially someone to laugh with, share the stuff we can't seem to share w/family and friends. I need a pal who knows what's next. THANKS!!

~~~~~

E-Pal number 2009-029

Name: Marsha
Gender: female
Age: 42
Lives in: OH, USA
Years with : 15 years

About Me: Hi all! I've had Sjogren's ,or at least been diagnosed with it, for about 15yrs now. I think I've probably had it my whole life tho. I'm 42 and it feels like the symptoms are getting worse. Usually my approach to it is that's just me and it will get better but I'm starting to think that's not the best way to deal with it. I'm looking to talk to people who are actively managing this so I have fewer days of feeling just plain tired and sore.

~~~~~

E-Pal number 2009-028

Name: Melissa
Gender: female
Age: 35
Lives in: Nebraska, USA
Years with : many

About Me: I am 35 years old and was diagnosed last year with Sjogren's. I have had symptoms and hospitalizations for many years. I am a nurse and sometimes have difficulty while at work. I am looking for someone to chat with and someone to support and cheer on!

~~~~~

E-Pal number 2009-027

Name: Vessi
Gender: female
Age: 25
Lives in: Indiana, USA
Years with : newly diagnosed

About Me: Hello,
I am a paramedic, married, no kids. I was born in Bulgaria (Eastern Europe), and moved to the US when I was 17. The SS symptoms started 2 years ago. Until recently I hadn’t heard of Sjogren’s. I had Lasik eye surgery done about the same time my dry eyes began, so my dr. dismissed it as a side effect of the surgery. I have the dry mouth as well, (always have water near by in the ambulance). My dr. is still testing to determine if it is SS or LUPUS, or both. I am determined to live my life to the fullest, and won’t let this disease stop me. Diet changes, lifestyle changes, I will do whatever it takes. Anyone with advice or just looking for a friend is welcome to e-mail me.

~~~~~

E-Pal number 2009-026

Name: Florine
Gender: female
Age: 22
Lives in: UK, Guildford
Years with : new diagnostic

About Me: Hello!
I'm French and I'm doing an engineering placement in Guildford, UK. From February 2008,( it started while I was doing an Erasmus exchange in Spain.)
I have been through a lot of CNS problems, Optical neuritis,  leg weakness >> Wheelchair...Lots of cortisone infusions (40 days)... but fortunately I'm well again after the infusions. Sjogren is my last diagnostic after MS and Devic...I'm waiting to start a treatment. I would be happy to chat with someone who can understand how difficult it is to live without knowing what you have.... If you live in UK next to London it would be even better, we could meet in real life..:-):-)
but if not its also ok I like to travel :-) Hope to talk with you soon ! Cheers

~~~~~

E-Pal number 2009-025

Name: Debora
Gender: female
Age: 51
Lives in: Idaho, USA
Years with : 3 years

About Me: recently diagnosed, have had symptoms for several years. I am a grandmother and I work full time as a medical coder. It's harder and harder to manage the symptoms and balance family life and work. I don't want to quit, don't want disability - just want to learn how to cope. I'd like friend to talk with that understands the daily struggle

~~~~~

E-Pal number 2009-024

Name: Joy
Gender: female
Age: 22
Lives in: London, UK
Years with : 5 years

About Me: Hi My name is Joy and I am interested in finding an e-pal who shares the same interests as me and is around the same age group. I was diagnosed last year April but have had symptoms since I was 17. I'm currently in my last year of University, studying Information Systems. I love music, the arts, anime, films and games... If there is anyone out there who wants an e-pal to share experiences with as well as receive and give support to, then I would be happy to be that person :)

~~~~~

E-Pal number 2009-023

Name: Shas
Gender: female
Age: 40
Lives in: Munich, Germany
Years with : 10 years

About Me: Hi, I have been suffering from SS for at least 10 years and was finally diagnosed 2 years ago. Fed up of doctors asking if the cause of my symptoms are stress. Like many others I have little understanding from other people about my condition, in other words I have to fight to be sick!! I would love to just be in contact with other sufferers. Drop me a line.

~~~~~

E-Pal number 2009-021

Name: Jackie
Gender: female
Age: 38
Lives in: HI, USA
Years with : 2 years

About Me: Hi my name is Jackie this is the first time I have known of others with my Sjogrens. I feel alone and have 2 other autoimmune disease's. Its hard on my family but i am very blessed to have wonderful friends and family. I just want to talk to someone who knows how i feel and would like any information that i don't know yet.

~~~~~

E-Pal number 2009-020

Name: JJ
Gender: female
Age: 44
Lives in: IL, USA
Years with : 4 yrs diagnosed

About Me: I would like to find some folks close to where I live just to be able to talk face to face with...but also e-pal folks who can understand what we go through. I love everyone on this site and finding a close personal friend would be so very cool. My BF and I like to ride and attend rallies...and as much as he cares for me cannot seem to wrap his head around it.

~~~~~

E-Pal number 2009-019

Name: Aurea
Gender: female
Age: 40
Lives in: NY, USA
Years with : 1?

About Me: Hi all. I'm a 40 year old female with sjogrens. I was diagnosed a bout a year ago. I have two wonderful grown kids who are very supportive. I've worked with animals for the last 15 years but had to quit my job because of extreme joint pain and inflammation. Now after some recovery I am able to go to school and hopefully change my career. I only know one other person with sjogrens and her symptoms are different from mine. Sometimes it feels like I'm the only one suffering from this. So if you would like to talk and give each other advise on how to cope and and make this a little easier to live with, please feel free.

~~~~~

E-Pal number 2009-018

Name: Jackie
Gender: female
Age: 51
Lives in: VA, USA
Years with : 4

About Me: I have had Sjogrens for 4 years now, symptoms are dry eyes, nose, ears, mouth, renal tubular acidosis. Kidney stones, fatigue, aching body, numbness. I'm raising my 9yr old grandson with (ADHD). Until I read about you guys on the internet, I thought my fatigue was in my mind. Now almost 5yrs later and my hair wants to start breaking off. Is there anyone out there that's going though the same as I am, I would like to hear from you

~~~~~

E-Pal number 2009-017

Name: Beth
Gender: female
Age: 52
Lives in: Iowa, USA
Years with : 11

About Me: I've had all the appropriate symptoms of Sjogren's for close to 11 years now (thinking back), but was not diagnosed until about 2 years ago. My eye doctor had a suspicion because I kept going in with inflamed corneas and my eyes were so dry, so I was sent to a Rheumatologist, who said he was certain I had Sjogren's despite my blood tests coming back negative for all the various antibodies. He put me on Plaquenil and an anti-inflammatory called Sulendac, which I later quit taking because it tore up my stomach so bad. Everything about my body is experiencing dryness (eyes, mouth, lips, throat, vaginal area, skin), I invariably hurt everywhere, and I have experienced fatigue so profound it boggles my mind. The parotid gland on my left side swells so much sometimes that it causes me to bite the inside of my cheek. In the past year my dentist has found 3 cavities and 3 chipped teeth I manage to work full-time, but in front of a computer all day, it does no favors for my dry eyes. I use Restasis as well as OTC eye moisteners (mostly Optive). Just yesterday I passed two kidney stones (same thing last year). Lately, while at work, I have had to use the eye drops as often as every half hour. I'm grateful for an opportunity to communicate with others having the same experiences because even though my friends and acquaintances shake their heads in sympathy and wish me well, I know there's no possible way for them to understand what I'm really going through; ditto my husband. I suspect that, in secret, more than half of them think I'm a hypochondriac, and I would put a few doctors in that same category. My third set of blood tests in two years was run this week, with everything still negative. The doc (a different Rheumy than the one who diagnosed me) says he thinks my type 2 diabetes is the cause of ALL these symptoms and he hates to put me through a lip biopsy "just to rule Sjogren's out." It seems to me that the only ones who DO need the biopsy are those who have all the symptoms but don't have the positive serology. Why waste a biopsy on someone who's already got the proof in their blood work? I can offer a lot of understanding to others going through this, and need some of my own!

~~~~~

E-Pal number 2009-016

Name: Gayle
Gender: female
Age: 53
Lives in: OR, USA
Years with : newly diagnosed

About Me: Have had symptoms for years but was just diagnosed with Sjogren's today. I'm scared about the future and would love someone to "talk" to. Anyone interested in support and friendship welcome.

~~~~~

E-Pal number 2009-015

Name: Gayle
Gender: female
Age: 53
Lives in: OR, USA
Years with : newly diagnosed

About Me: Have had symptoms for years but was just diagnosed with Sjogren's today. I'm scared about the future and would love someone to "talk" to. Anyone interested in support and friendship welcome.

~~~~~

E-Pal number 2009-014

Name: Nancy
Gender: female
Age: 47
Lives in: IN, USA
Years with : 5 years

About Me: Hello.  I am looking to talk with others who are suffering from this disease to compare notes on treatments used to try and improve our quality of life.  My symptoms have affected my life in a very negative way.  I once was a very active, outgoing, energetic and overall happy person.  That has all changed for me with this disease.  I hope we can help each other.

~~~~~

E-Pal number 2009-013

Name: Kelly
Gender: female
Age: 32
Lives in: Wales, UK
Years with : 1 1/2 years

About Me: Hi I am a 32 year old single parent who has been afraid and suffering for about a year and a half so far. am seeing various specialists, hospitals, doctors but the more I read about Sjogren's the more definite i am that i have it. The thing that is the worst is feeling so lonely and that friends and family think i may be going mad. Would just love a friend right now.

~~~~~

E-Pal number 2009-012

Name: Shelly
Gender: female
Age: 37
Lives in:  Oregon, USA
Years with : 7 months

About Me: My name is Shelly I have 3 great boys and a wonderful husband. I love animals, 4H, fishing, hunting, and gardening. Basically anything outside. I haven't officially been diagnosed with Sjogren's however, my RA thinks that is what I have. I am scheduled for more test. I have the symptoms that have been mentioned with Sjogrens.

~~~~~

E-Pal number 2009-011

Name: Carol
Gender: female
Age: 46
Lives in:  Michigan, USA
Years with : tested positive for Sjogrens antibody

About Me: I'm married with no children and recently tested positive for secondary Sjogren's antibody. The primary antibody I tested positive for seems to be SLE (Lupus) although I don't seem to have any symptoms. I believe I am having early symptoms of Sjogrens (dry eyes, mouth, and tingling in arms/legs). Interested in talking to someone to help me understand this syndrome better, how to cope, or anyone newly diagnosed to chat with about their issues with the disease.

~~~~~

E-Pal number 2009-010

Name: Carol
Gender: female
Age: 46
Lives in:  Michigan, USA
Years with : tested positive for Sjogrens antibody

About Me: I'm married with no children and recently tested positive for secondary Sjogren's antibody. The primary antibody I tested positive for seems to be SLE (Lupus) although I don't seem to have any symptoms. I believe I am having early symptoms of Sjogrens (dry eyes, mouth, and tingling in arms/legs). Interested in talking to someone to help me understand this syndrome better, how to cope, or anyone newly diagnosed to chat with about their issues with the disease.

~~~~~

E-Pal number 2009-009

Name: Karen
Gender: female
Age: 46
Lives in:  Canada
Years with : 3 years

About Me: Hi Friends! Just diagnosed with SS; previously had a hyperactive and hypoactive thyroid, but haven't taken thyroid meds in years. Main problem is extremely dry eyes; no tears. Also have dry mouth, swollen glands and other "symptoms of the day". I work full-time, gazing at a computer screen 8 hrs/day. I'm single with a wonderful daughter; enjoy travelling, concerts, piano, playing cards. Want to meet someone for mutual support/tip-sharing. I won't exclude anyone but I'd be particularly interested in hearing from fellow Canadians who've had success with their drug plans covering eye drops; I've been denied and this is getting expensive!!

~~~~~

E-Pal number 2009-008

Name: Brenda
Gender: female
Age: 44
Lives in:  Iowa, USA
Years with : 8 months

About Me: I have recently been diagnosed with Sjogren's. I have 2 teenage children and a wonderful husband. I am having trouble communicating with so many different doctors about so many different symptoms. Symptoms include; migraine hand other unidentified headaches, joint pain, dry eyes, dry mouth, abdominal pain, IBS, asthma type lung problems, foot pain, hair loss, foot, hand and face tingling and intense fatigue. I have wonderful family support but I feel it would be nice to get to know people, like myself, who have to live with all of this. I am curious to find out how people are able to maintain stable employment through all of the medical issues. My interests include trees, flowers, plants, animals, beautiful landscapes and camping.

~~~~~

E-Pal number 2009-007

Name: Dan
Gender: male
Age: 45
Lives in:  Atl. Georgia, USA
Years with : 2 1/2 years

About Me: I am a happily married man. I have ignored this for way to long, so I suddenly am experiencing a barrage of symptoms. I love coaching my kids in sports or chaperoning field trips. I am not working now as the result of a 2 level lumbar spinal fusion. I used to be active working 2 jobs minimum, now I collect Worker's Comp, which Bites. I hope to settle my W/C claim soon and try to get on with whatever kind of life I can have. I look forward to conversing with people that know what this is like.

~~~~~

E-Pal number 2009-006

Name: Nicolasa
Gender: female
Age: 19
Lives in:  New York, USA
Years with : 4+ years

About Me: MY Name is Nicolasa I go by Nikki for Short. I'm gonna be 19 on Jan 26. I have been diagnosed with Sjogren's & 4 other Chronic Diseases. I was fully Diagnosed in may of 2008 (when I say fully I mean the doctors have been scratching their heads for 4 years trying to figure out everything that's wrong with me). I live my life now for god (through the process of diagnoses I stopped believing in god & blamed him for everything that has happened) but now I believe he has a bigger purpose for me. I Love to sing, I am learning to play Guitar, I'm into photography,& when the words come to me I write. I love music & I watch alot of movies. But other then that I am in college for Early childhood Education. I am also a Hockey Fan (Sabres all the way!!). I'm a very Nurturing person, kind, and I love to help people when they need me. Also I'm a good listener. I've always wondered what it would be like to have an E-Pal, But to actually Email someone who is going threw the same things I am going threw, Amazing!! I am looking for someone to talk to that is my age & someone who is going threw the same things I am going threw.

~~~~~

E-Pal number 2009-005

Name: Brenda
Gender: female
Age: 54
Lives in:  Florida, USA
Years with : 7 years

About Me: I was dx's w/SS after seeing several rheumatologists, and also have fibromyalgia and arthritis. My Sjogren's has been getting progressively worse, and this past month has been almost more than I can take at night time. During the day I can take Evoxac, Plaquenil, Restasis, and NSAIDs for pain, but when nighttime comes, I dread going to sleep. I run a warm humidifier and still wake up about every two hrs to drink water, rub my eyes w/water, and take a mouthful of synthetic saliva, not to mention the pain all over my body. Then later of course I have to go to the bathroom, and the cycle continues. I am so depressed. This is the worst it has ever been, and I have found this site hoping for support from someone who understands. I know there is not a cure, but I can hope that God continues to give me the strength to endure. I just need to not feel so alone right now.

~~~~~

E-Pal number 2009-004

Name: Tanya
Gender: female
Age: 38
Lives in:  Tenn., USA
Years with : newly diagnosed

About Me: I am interested in talking with people who have had Sjogren's for some time or recently diagnosed to understand some of their symptoms, doctors, and how to deal with this disease.

~~~~~

E-Pal number 2009-003

Name: Bridgett
Gender: female
Age: 34
Lives in: 
Years with : 3 years

About Me: I am married with three children and a nurse. I feel I have had this most of my life since age 12y I have had chronic left neck gland infection. until recent have had positive testing so I would love to know if my symptoms are real I have so many question and the doctors don't seem to answer so if anyone could help please email me.

~~~~~

E-Pal number 2009-002

Name: Linda
Gender: female
Age: 56
Lives in:  AL, USA
Years with : 14 years

About Me: I am 56 years old and I have six beautiful grandchildren. I was diagnosed with Lupus, Fibromyalgia and then SS. I've had 3 blot clots on my lungs, I have Hyperthyroidism, Diabetes, Severe pain, Depression, weight gain, forgetfulness and I don't sleep. I had to stop work but now I own a business and it has been hard to keep it going.

~~~~~

E-Pal number 2009-001

Name: Lee Ann
Gender: female
Age: 55
Lives in:  Indiana, USA
Years with : 2 years

About Me: I am married with 3 children. One still at home. Five years ago I was diagnosed with Breast Cancer. Then after coming through that I was told I have RA and Sjogren's. In the past year I have had greater than usual trouble in walking and extreme pain. I have muscle weakness and my legs hurt all the time. Until 5 years ago I was very active and fit. Now I am scared of being in a wheelchair which I now have but am fighting not to give in to it. I think something else is going on, and need to check back with my rheumatologist. Any one else having problems like this? I really don't know all the symptoms of Sjogren's. Maybe this is par for the course?

~~~~~

• CNS Articles
• Useful Links
• Books / Reviews
• Live Chats
• E-Pals
• Message Forums
• History / Staff
• Disclaimer
• Site Map

Sjogren's Syndrome...

is a chronic, slowly progressive autoimmune disease that affects the "exocrine" (moisture producing) glands of the body.

It is classified as a "connective tissue disease."

Sjogren's Syndrome causes dry eyes, dry mouth, and it can also affect other major organ systems. Uncommonly, it can affect the central nervous system. Read more here.