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Conquering Sjogren’s: Follow us on our journey to change the face of Sjogren’s

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Tracking Your Symptoms

 

Living with an Invisible Chronic Illness (ICI), like Sjögren’s, can be difficult because you don't look sick. 

tracking your symptoms Image

Tracking your symptoms or keeping a symptoms journal is a great way to "show" your doctor what symptoms you're experiencing, as well as, a great resource to help them recognize any patterns, should they become present. 

Tracking your symptoms is also a great resource if you're filing for Social Security Disability by showing the frequency, severity and duration of your symptoms. 

Click Here for a printable "Tracking Your Symptoms" worksheet.

 

Click Here to Become an SSF Member


Comments

İam sory İ can naot write in detail in İnglisch. Becouse my inglisch is not enough. İ can do Turkisch.. İ am living with Sjögrens since 11 years..  
Yours sincerely 
F.Gurbuz Yilmaz
Posted @ Monday, September 30, 2013 3:33 PM by F.Gurbuz Yilmaz
Thank you for posting the worksheet. I learned to live with SS.I have accepted it as flu. 
I'm fine and very well.  
Posted @ Monday, September 30, 2013 3:51 PM by Lale Afrasyap
I also have fibromyalgia plus other illnesses so it is hard to tell what is affecting what? I'm just tired of being sick and no one really understanding.
Posted @ Monday, September 30, 2013 4:45 PM by Janet Hurguy
OMG.....I know how Janet Hurguy feels. I also have Fibro and several other health issues I never know whats going on with my body, too many overlapping symptoms. I feel as though family and friends will never understand!!!
Posted @ Monday, September 30, 2013 4:53 PM by Linda
I was diagnosed with Sjogren's about 5 years after my bout with breast cancer. I was having so many symptoms that originally they thought I had Lupos. Then they finally figured out it was Sjogren's. As I have followed your post and read other's remarks, my symptoms are making much more sense. I was starting to think I must be imagining things. It's great to finally have a diagnosis to go with the symptoms.  
Posted @ Monday, September 30, 2013 5:47 PM by Tammy
I have had sjogren's all my life but for some reason no one could identify what was wrong with me. However, thanks to my son who is a student studying medicine asked that my DP doctor give me a blood test which did verify that I do have sjogren's at extremely high levels.. Now I have been in a state of confusion with inflammation of the knees and I am not sure if it's sjogren's or athrities. Sometimes I have severe pain and other times its like my knees are on fire. Can not find a doctor that handles Sjogren in my area. Does this happen to anyone else?
Posted @ Monday, September 30, 2013 5:55 PM by jane ross
I was diagnosed with sjogrens 2 years go . My symptoms are very dry eyes and mouth and pain in my neck. I am on plaquenil twice daily . I take omega 3 , b6, evening primrose oil,and sea buckthorn oil. That helps me a lot.
Posted @ Monday, September 30, 2013 5:57 PM by Norma. Winter
I was diagnosed with this also R.A. I get tired and always have pain
Posted @ Monday, September 30, 2013 6:19 PM by Yolanda Orona
Jane Ross 
 
Joint and muscle pain is common in Sjogren's. I get tingling feelings in my feet and toes and sometimes, the tops of my hands are swollen and burning sensation. 
 
We are so used to hearing that Sjogren's is only dry eyes and dry mouth, but you don't hear that it is a rheumatic disorder. It can affect every part of the body in different ways.
Posted @ Monday, September 30, 2013 6:36 PM by Kathy Gordon
I was just diagnosed with sjogrens with cns involvement, after 8 yrs of going to a lot of different Drs.,
Posted @ Monday, September 30, 2013 9:08 PM by Pat Scarpati
I was diagnosed with SS and lupus originally and then it was changed to RA and SS. I have a lot of symptoms like dry eyes and nose. My skin is so very sensitive and I get rashes very easy. I have lots of joint pain and most of the time I dont know if its my RA or SS or both. I also deal with depression that seems to have gotten worse since being diagnosed. I am on Mtx injections 1x week, plaquenil, folic acid. The one thing I wish is that my family would be supportive and understanding but I am thankful for my SS group they are my family and without them I would feel so alone.
Posted @ Tuesday, October 01, 2013 3:54 AM by Doris
It's been very difficult dealing with sjogrens. Fatigue , chronic pain,extreme dry eyes, nose n throat.plus more uncomfortable feeling. I'm very depress,and feel the hurt that no one I know understand, but with the faith in GOD I push forward .sincerely cmj
Posted @ Tuesday, October 01, 2013 5:09 AM by Carmen Maria Johnson
Há cerca de 8 anos que me foi detectado o S.S. Até aí,quase cheguei à loucura, pois os médicos no hospital, acho que pensavam que eu sofria de mania. Os sintomas, eram horriveis. Hoje estou mais calma, e durmo melhor. Até a minha boca, a principal causa do meu sofrimento, está melhor. Graças ao tratamento que faço há quatro anos no Dr. Pedro Choy. Graças a ele,me encontro viva e com alguma qualidade de vida. Graças a Deus tambem. 
Posted @ Tuesday, October 01, 2013 11:26 AM by Rosa Teles
Is there a special diet for SS ? I would like to get some info . I would like to know if anyone have the sympoms of tingling in the head ? I get that often!! My eyes get something like mucus, does anyone get that?
Posted @ Tuesday, October 01, 2013 1:23 PM by Norma Winter
Hi, 
I have been on a gluten free diet for over a year. Everyone tells me I look a lot better. I also watch the vitamins I take I original took the omega 3 which contains iodine highly allergic I could not explain the pain in my knee joints it was horrendous, I had to figure what was this sudden new kind of pain it was definitely Omega3 with the fish oils. I am highly allergic to iodine but when I looked at the label it did not registered. Now I know better and I take Omega 3 with plant oils. I think we really have to stay on a strict diet and start from that point to get better. 
Iam on Euflexxa injections and limbrel500 some relief but not everything by any means. These injections must be taken every six months. I am still looking for another way without surgery. I am at high risk for surgery so I am looking into stem cell injections if they exist. Any help?
Posted @ Tuesday, October 01, 2013 4:48 PM by jane ross
Thank goodness you are all out there. I am 58 been sjoggy for about 10yrs, diagnosed for 3. Trying to find employment which will fit in with all the diverse symptoms is impossible. What on earth is a person supposed to do?
Posted @ Wednesday, October 02, 2013 2:34 AM by jilly reynolds
Hi Jilly Reynolds and everyone else, I am 54 yrs old. Never had a positive biopsy for this but my doctor thinks, from all of my symptoms, I have sjogren's. I wanted to tell you, Jilly, I filed and was approved for disability. My problem is that I've never worked enough to get SSD so I got SSI which is income based. I no longer get it because their income limits are so low. My parents bought us another vehicle and that put us over the income limit so I don't qualify for SSI anylonger. So, yeah, I've thought about going out to get a job but with all of my disabilities/illnesses, I just cannot imagine how I could work. When asked when I could work, the HR person would laugh at me!
Posted @ Wednesday, October 02, 2013 2:46 AM by Janet Hurguy
Hi everyone, 
I was diagnosed with ss 2 years ago and also fibro and neuropathy plus multiple others. I know what ya'll are saying about not knowing with illness is causing what. I thought for a long time that I was the only one and no one knew how I felt till I started studing everything and boy was I wrong. Just very glad to know that I'm not and everyone has been so wonderful with help and support. Thanks for all the info ya'll put out. 
Posted @ Wednesday, October 02, 2013 3:35 AM by Monessa Hall
Hi 
I highly suggest that people join the Sjogren's Syndrome Foundation. I get both the Moisture Seekers and the Quarterly because they educate me and also my husband and keep us up to date. I found this helps us to educate family and our true friends. I now get a lot more understanding of why I can't always attend gatherings because of sun and unexpected symptoms and pains. Give family members the link to Sjogrens.org so that they can see others' comments of what we experience in our daily lives. 
Keep faith, laugher, and hope in your lives.
Posted @ Wednesday, October 02, 2013 11:48 AM by Kathy Gordon
soy mexicana con 41 años, hace 2 años fui diagnosticada con Sjogren ,me hicieron biopsias de pielm estudios del ojo seco y muchos estudios en sangre, mis dolores reumaticos estan muy fuertes,dolor de cabeza ,inflamacion de ojos y pies,resequedad de piel y ojos,boca,nariz y vagina seca, mi doctora me recomendo capsulas de BIO TEARS ,son buenisimos, aparte mi dentista me aplica FLUOR 1 vez al mes ,ya que con la sequedad de la boca ,por falta de saliva se pueden producir rapidamente las caries, en la piel me ayuda mucho el aceite de almendras,les recomiendo un producto buenisimo llamado ASEA es un liquido que es un suplemento unico de señalizacion Redox,que va directo a las moleculas, se consigue en varios paises, se toma, se puede rociar el ojos,nariz y boca, en las areas donde hay dolor y realmente es increible, les deseo mucha suerte y tolerancia y animo para enfrentar nuestra enfermedad, saludos
Posted @ Wednesday, October 02, 2013 12:44 PM by GEORGINA CARDENAS
I thought in case someone doesn't know Spanish (I don't!) or if they don't know how to use a translator on the internet, I would put Georgina Cardenas' comment in English: 
 
I am Mexican with 41 years, 2 years ago I was diagnosed with Sjogren, they did biopsies of pielm dry eye and many studies in blood, my pain rheumatism are very strong, headache, swollen eyes and feet, dryness of skin and eyes, mouth, nose and dry vagina, my doctor recommended me capsules BIO TEARS, are buenisimos, apart my dentist applied me fluoride 1 time per month , since with the dryness of the mouth, due to lack of saliva can be produced quickly decay, skin helps me much almond oil, I recommend a product called buenisimo ASEA is a liquid that it is a single supplement of Redox signaling, which goes straight to the molecules is achieved in several countries, is taken, the eyes may be sprayednose and mouth, in areas where there is pain and really is amazing, I wish good luck and tolerance and encouragement to face our illness, greetings 
Posted @ Wednesday, October 02, 2013 7:28 PM by Janet
Was diagnosed 7/2008 with Sjorgren's. Due to symptoms I have, posting and research I have read, I can tell you Sjögren's made its presence known when I child.....unfortunately NO ONE had a clue!!!! At 56, and learning how to deal with dry eyes, dry skin, constant fatigue, severe pain in my joints, a freakin rash that comes and goes with the wind - burns & itches beyond belief (thank God for the Organic Coconut Oil I found!) - bloody noses, coughs, constant hoarseness, on & off bronchitis, inability to focus, memory loss, (have had blackout episodes as well - has anyone else ???) swelling of feet & hands, tops of my toe joints bleed, TMJ so severe that left joint completely was 100% closed and right joint 95% closed and my dentist literally had to pry my mouth open and insert a device in order to keep it open so he could make molds for me!!!  
 
Vertigo so severe it took me 8 months of PT to regain my balance. I still find myself getting off-balanced and have to slow down. Unable to lay on either side, or ride for long periods to the pressure it put on my hip joints. 
 
Due to my severe allergies, I'm unable to take prednisone, cortisones and several of the other meds that are available.. 
 
Today I requested my PCP's advise regarding extensive food/drug testing. Due to fact I've have TWO positive ANA for Lupus & ONE negative....... 
 
I need answers NOT .... "Well we aren't positive, but we think I could be"  
 
Please ANYONE with similar symptoms chime-in!!!! 
Regards!!!!
Posted @ Thursday, October 03, 2013 12:23 AM by Jeanette Wadsworth
Jeanette 
Nothing against your PCP but you need a specialist that is well experienced in autoimmune disorders, not just AR. It took me going to John Hopkins for a diagnosis after 15+ years of fatigue, eye problems, and joint and skin issues.  
I am on Plaquenil which is given for Lupus. Lupus and SS are both systemic disorders and PCPs are not really trained to deal with all the diverse symptoms. 
Don't give up - you can get help. 
Posted @ Thursday, October 03, 2013 11:47 AM by Kathy Gordon
Hi  
I visited my doctor today my blood work that I do every 3 months my ESR is still 103 has not gone done much since I was diagnosed in 2011. My RA and lupus test is negative has always been negative . But the ANA test is positive for SS . I am confused because I have dry eyes and mouth with some pain on my neck and head nothing like what others are suffering , my doctor says its primary stage . 
Can someone tell me if their ESR is that high? I am taking meds for hypertension and on plaquenil for SS and Celluvisc for my dry eyes !! Was on Restassis not anymore as it hurt my eyes too much . Can someone help !!! Thanks!!
Posted @ Thursday, October 03, 2013 7:14 PM by Norma Winter
103 is high but not way high. Here is a site that explains ESR which is also referred to as SED rate: http://labtestsonline.org/understanding/analytes/esr/tab/test 
I take restasis, too, plus an anti-inflammatory drop. I have a plug in the lower right eye drainage duct. I seem to have chronic burning in both eyes but the past few months it's been more the right eye. I've found that a lot of blood tests come out neg when they are really positive. My ENT doc says even though the biopsy for SS came neg, with all of my symptoms, he thinks I do have SS.
Posted @ Friday, October 04, 2013 10:39 PM by Janet
I was recently diagnosed with Sjogrens and fibromyalgia, I have not felt good for 20 years. I have seen too many Drs. to count, I also found out I have gerd, miroscopic colitis I am 52 and have tubes in my ears, I have osteoarthritis, been through sinus surgery, esopogitis,pancreaitis plus more is all of this connected, My dr says no, ha just said this is what you have and handed me a booklet and that was it, frustrated, Tammie Indianapolis
Posted @ Tuesday, November 05, 2013 2:46 PM by Tammie
Hi Tammie 
First of all, join the Sjogren's Syndrome Foundation and sign up for the Moisture Seekers. Also, the fourth edition of the book "Sjogren's Syndrome" will give you the information about all the problems that can happen with the disorder. I would highly recommend it. It has affected my many of my organ systems. Knowledge of your disorder is your best friend and also make sure you have a Rhemologist that is familiar with Sjogren's. Remember to try to smile and laugh each day.
Posted @ Wednesday, November 06, 2013 12:50 PM by Kathy Gordon
Does anyone has eye pain ? Especially at night. My left eye hurt so much I can't sleep feels like a pressure on the eye. 
Is there any special diet for SS . I am on plaquenil twice a day for SS and Diovan 160 for hypertension. I take omega 3 fish oil and b6 evening primrose oil and sea buckthorn oil. It seems to help with the dry mouth. Thanks for all the info.
Posted @ Wednesday, November 06, 2013 4:33 PM by Norma Winter
I just wanted to say thanks for everyone's comments. I was finally diagnosed with SS and fiber in 2009. I'm not able to work full time any more and currently trying to get SSD but have already turned down once before so not holding my breath anymore. Just knowing there are so many people with the same pproblems makes me feel less like a freak. Thanks again for letting me know you're out there.
Posted @ Thursday, November 07, 2013 1:45 PM by Ronda
Norma 
I had a lot of eye pain that I would describe as stabbing. If I was you, I would get my eye pressure checked because of the Plaquenil. My eyes were always red and extremely dry. I used the prescription drug Restatis and it made the biggest difference. If you do get it, keep the vials in the refrig because the coldness lessens the sting. Try putting warm compresses on your eyes before bed and gently rub right above your top eye lashes because the tear oil glands might need a little help.
Posted @ Thursday, November 07, 2013 3:03 PM by Kathy Gordon
Kathy thank you for your response,I enjoy reading all the post as i am researching primary sjogrens, asmuh as I would like, I cannot join SSF,i literally do not have 32$ to join,but I will continue to read this and other sites, tammie Indianapolis
Posted @ Thursday, November 07, 2013 3:09 PM by Tammie
Ronda 
Apply again. Sjogren's Syndrome is listed on SSDI's listing of covered immune disorders thanks to the hard work of SSF. Make sure you include your lip biopsy, letters from all your physicians, esp.your Rheumatogist. Also include your labs for antibodies and CBC. Go back to all your doctors to get copies of reports, work related letters. Do the legwork as much as you can, phone ahead and then pick up all your info.
Posted @ Thursday, November 07, 2013 3:13 PM by Kathy Gordon
Hi Kathy, 
Thanks for your response, I check my eyes every 3 months because of the plaquenil pressure is ok I was on restasis too did not agree with me it made my eyes burn more and I keep it in the fridge. My ophthalmologist prescribed Celuvisc every 4 hrs that is what I am using at this time , I will try the warm water and the massage. Thanks again !
Posted @ Thursday, November 07, 2013 3:54 PM by Norma Winter
I have applied for disability the 3rd time, now my Sjogrens was diagnosed by health history and blood test, doI need a biopsy?
Posted @ Friday, November 08, 2013 12:40 PM by tammie
I have Sjogrens. It's interesting to hear that several also have fibro. My doctors believe that I also have it. Lately I have a sharp pain in my right knee. I just figured that it was arthritis. There are times that I can barely move. It is so depressing because I have a very active husband. I feel it's not fair to him.
Posted @ Tuesday, November 12, 2013 1:42 PM by Becky
Thanks
Posted @ Tuesday, November 12, 2013 3:52 PM by Valerie
Hello all, I have been diagnosed with sjogrens and sarcoidosis for 3 years now. I have pain both legs, arms, lower back. I can't sit, stand or walk for long periods with out being in pain. My feet feel like they have pins/needles in them at times. I have heart problems also. I take 6 pils a day including plaquanil 2 a day trimadol 50 mg 2 a day. I get so tired of being tired.
Posted @ Tuesday, November 12, 2013 7:58 PM by Lisa in Alabama
I feel like I've been beat with a pipe,unreal pain!!!I have Sjogrens,Fibro,Neuropathy, there are days when I can't speak properly,can't type or spell.My nerves are all damaged it seems.Can't even put asentence together properly..this is a good night for me!
Posted @ Tuesday, November 12, 2013 10:58 PM by
Like most of you I never know if it's SS or some other 
problem. My PCP doesn't think that I need a Rheumy, but I'm not sure. My Big Question is: I will have 
my 60th birthday next week and I want to know if it 
is safe for me to get the Shingles Vaccine. My FIL suffered for years with Shingles and after seeing how it affected his life, I know that I don't want to get it. 
I would love to hear from anyone who knows about getting this vaccination
Posted @ Thursday, November 14, 2013 12:03 PM by Dolan Watterson
Dolan, my rheury told me to get one. I just did this year. I am 58.
Posted @ Thursday, November 14, 2013 2:24 PM by Becky
Becky 
You and I are rowing the same boat. We had a very active lifestyle on the water with our boat and also we both had our own jetski. We travel islands in both the Caribbean and Pacific Oceans. 
Now, I can even be out in the sun and when the humidity is high, I can't even go outside because of breathing problems. Also, I no longer perspire and heat stroke or exhaustion is a big concern. My husband has a lot of energy and I feel guilty because I feel like I am holding him back. He tells me if the situation was the other way around, that I would be there for him and he is right about that. 
Try to smile and laugh each day for your soul.
Posted @ Thursday, November 14, 2013 2:27 PM by Kathy Gordon
I have had primary ss for years prior to diagnosis. I also have fibro and feel like I am 90 most of the time. My main issues are fatigue, atonic colon and no interest in food. My questions are does anyone have info on an inflammatory diet? I go gluten free when I find items identifying such. Does anyone else have colon issues? If so how are you treating them? And finally my rheumatologist informed.me my fatigue was caused by lack of exercise. I am literally falling asleep in my chair at work. How am I going to lift weights or do aerobics. I am extremely frustrated. I joined thr Sjogrens foundation and have been so educated by their books and pamphlets but they are miles away from what the dr says. Please help with information if you cam. Anything will help. Have asked to take 4hrs off from work each Friday but have hit a stone wall there too. Thanks for listening and thanks in advance for the information . Maggie
Posted @ Thursday, November 21, 2013 8:34 PM by Maggie
It is nice to near the comments from other patients of this disease. I was diagnosed 3 years ago and have many of the same complaints that you all mention. I think I will start a journal....I have more new symptoms all the time - lately some dizziness....have sharp jolts of pain in my feet also (new)....I still work a travel job, 2 weeks per month.....am thankful for that....not a day goes by without alot of pain. I have a rheumatologist....and go once per year for follow-up, so far. Hope to continue to converse with others with Sjogren's - mine is primary, as far as I have been told.
Posted @ Thursday, December 05, 2013 5:36 PM by Margie Martin
Maggie, you sound like my twin.I've been diagnosed for 11 years, just stopped work 2 years ago. I have fibro and primary Sjogrens. I have finally found a Rheumatologist, pain management and primary MD's that believe me and treat me with respect and understanding. What a difference it has made in my life. Most days my pain is under control, however weather changes send my body into "meltdown." I can't sleep, my pain intensifies, can't eat, I'm swollen like the little dough boy and by colon just stops. I've just started having the parathesis or neuropathy on my left side only. The pins and needles are unbelievable. I can hardly stand it. My physicians and I are working with that now. He wants me to start imuron, I'm not sure. My research on the medicine scares me a lot. We will see. I use Systane eye drops for my dry eyes. Liquid during the day, gel at night. Both have given me much relief. Someone further up asked about the white mucus from the eyes, I have that as well but I do not know what to do about it. I need suggestions on bowel function and the lack of it. I would appreciate any suggestions. Kathy
Posted @ Thursday, December 26, 2013 4:10 PM by Kathy Owens
For a very long time I had a positive ANA and my primary felt something was wrong and referred me to a rheumatologist. At first the rheumatologist felt nothing was wrong and that the positive ANA was probably normal inflammation. I was misdiagnosed with Lyme's disease and was treated for it. After years of this, my primary told me to get a lip biopsy and after some minor setback in finding one who would send the results to Johns Hopkins, I went directly to Johns Hopkins for the biopsy. I was finally diagnosed with Sjogren's at the end of 2009. Since then I have had many other issues arise which I wonder if are brought on or complicated by Sjogren's. I am currently taking Plaquenil and was prescribed Salagen but do not take the Salagen because it brings on major hot flashes. Does anyone else have that happen with that medication? I have horrible digestive issues and don't know what to eat because it seems like everything I eat now causes bloating and pain. Does anyone else have bad digestive issues? Any suggestions on a good diet to help with digestion?
Posted @ Saturday, February 01, 2014 8:45 AM by Natalie W
Hi Kathy, 
I don't know much about Salagen never taken that before.  
About the digestion yes most people with Sjogrens will suffer from acid reflux and bloating diet is very important .when I ate wheat grains it made me very sick with acid indigestion . Now I try to eat more alkaline foods. Stay away from fizzy drinks eat more green leafy vegetables and most cooking oils you can use olive oil, coconut oil. It works for me I stay away from caffeine ,drink decaf green tea with honey no dairy . Hope it helps you .it works for me and of course stay away from gluten. 
N
Posted @ Sunday, February 02, 2014 4:45 AM by Norma Winter
Sorry I meant Natalie.
Posted @ Sunday, February 02, 2014 4:50 AM by Norma winter
I have read several comments about avoiding gluten in your diet, nobody actually mentioning celiac disease in connection with sjogren... does anyone have celiac disease diagnosed along with sjogren? thanks for sharing.
Posted @ Sunday, February 23, 2014 6:30 PM by Edith
I was diagnose with sjogrens 16 months ago. Along with an extremely rare form of neuropathy, as fibromyalgia, Prolong QT, chronic pain syndrome I was also back in 2000 diagnose with IBS.  
I take Gabapentin,Plaquenil, Salagen, address(for the cloudy head from Sjogrens)Hyoscyamine for IBS and Drisdol (vamins.D) my level was at 4 and it should be 30 or higher. 
Im a mess! Got so bad I started with tremors and then a stroke, the wheel chair and bed ridden massive pains all day no matter what. I did PT but the pain is to much. I walk around my house with a cane whwn I can and outside the home with a scooter very embarrassing For only 34. I do feel completely alone my mental state is just gone. Im so depressed I cant stand living. My husband is divorcing me mostly because he does/can't deal with this. I have 13 & 14 year old daughters and I can no longer be the mom they knew.I haven't been able to drive in over 17 months now. Please tell me im not alone here too.im miserable! ! 
Posted @ Wednesday, April 09, 2014 9:27 PM by AnnMarie
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