Would like to hear from people with Sjogrens

I was Dx with Sjogrens last year, Sjogrens primary-cutanious b-cell lymphoma ?secondary. Also RA and ...., I'm 54, Had intense eye & thirst issues since @2006. Fatigue indescribable,off and on,then always & ever increasing with sleep and pain isssues, etc. I no longer work. Miss it, but am finding and revisiting hobbies. I have noticed now that the world wind of the last year is slowing down (Diagnoses, 2nd opinions, Chemo (talk about a fog) ego maniac physicians, major problems with my medical records...which I advocate to others now to obtain on an ongoing basis...it is amazing the errors over and over 'cause they copy off each others notes, 9why sit there talking to them...they obviously were'nt listening) miss quote you, ommit issues brought up etc.....! Sad state of affairs and may the heavens help us all if electronic medical records goes national...with the errors in my chart, like cardiac surgery in my 20's that never occured it is insanity at best. And I'm not alone, the more I speak/advocate for this, so many others have horror stories. All that said. The fatigue has improved alot from where it was, stress, anxiety and depression post diagnoses/treatment added a different dimension to the fatigue. But it has improved. Sometimes we can be hard on ourselves Fatigue surely affects the cognitive process to varying degrees. Is there depression? Some adjust easily to chronic illness, others not so much. Talk to your Rheumy ( and get the records), try to sort this out. Could be a few issues compiled. Oh, I had issues with numbers prior to diagnoses/treatment but not now. Fatigue? Sjogrens? Pain? Who knows?

Hi Meredith,
I have the identical symptoms that you have. My problems began at 30 with Hashimoto's and other very peculiar symptoms. In retrospect, it was Sjogrens. I always had rheumatic problems since I was a child. Horrific, yes, horrific pains in my legs as a child and I would scream at 3:00 am and wake up my parents who would put extremely hot compresses on my legs until I fell asleep. I never felt like a healthy child or adult. Always tired, always sick with some bronchial problem at least once per month. I always overslept during my career in marketing. I finally had to leave my career because doctors were baffled. I was dismissed with my symptoms. I went on social security for so called depression. I later realized my mother had Sjogrens as well which even today it is a tragedy as she never got the help she needed. I believe the lack of treatment was my mother's demise. I am your twin with symptoms, HOWEVER, I was just diagnosed in December 2011. I am taking Plaquenil and a low dose of steroids; Medrol 4 mg. per day. Plaquenil is 200 mg. x 2 per day. I became allergic to everything in my later years so I was scared to death to take Plaquenil. I finally went on it when I got the diagnosis. My Rheum. get pushing the drug on me without a definitive diagnosis and I was frightened to take a drug without a diagnosis. I was also diagnosed with seronegative arthritis. I met with a jeweler today who told me she had horrible symptoms and they put her on this horrible drug called Plaquenil. I had to laugh as this drug saved my life. Of course, I laughed to myself as her R/A luckily for her must not have been too bad. Because of the Plaquenil and low dose steroids I am starting to get my life back after ten years of shear heck. Also, my doctor is still pushing the drug Methotrexate but I had an adverse reaction similar to an allergic reaction from the injection. The Metho is a stronger DMARD medication than Plaquenil. Sanofi Adventis is the brand name manufacturer and the generic gave me a set back in my symptoms. Now, you are not experiencing fatigue you are experiencing weakness. This disease is a disease of dehydration and this disease affects everyone differently. Oh, to just have dry eyes and dry mouth I would consider myself perfectly healthy. I love to hear that some people are so optimistic but they do not have our symptoms. Before my diagnosis I kept telling my Rheum. that I felt like I was experiencing dementia. He ordered an MRI and nothing was a miss. However, I know it as a fact that this disease causes inflammation of the brain and you feel as though you are going senile. I know this well when I spin around trying to figure out what I am supposed to be doing. I call it the slow burn into the abyss. I read an article and I can't recall who it was written by but it was a major study on mild cognitive disfunction. Otherwise known as mild dementia. This study stated that steroids will assist in bringing the cognitive difficulties under control. I do not want to sound as though I know everything regarding this disease but I lived through this nightmare for a decade and longer just milder when it first hit. You have peripheral neuropathy. Do you notice any burning sensations in the bottom of your feet. Any strange muscular cramping? The list goes on and on. Please do not confuse your fatigue with weakness that was my biggest issue, I kept saying I am so tired. When I realized, no, I am just so weak. I used to throw 50 pound bags of dog food over my shoulder and slowly my boyfriend watched me waste away to someone who could not even get out of bed. You need to be drinking plenty of fluids all day. You are dehydrating. Your bun to creatinine ratio will sometimes show that, as I asked a doctor why that was and I was having urinary problems and his statement was Oh, "You have mild dehydration." Really? I was drinking more water than usual because I was always dry. This was the first clue. The Plaquenil takes a while to work and then one day you wake up on time and the strange symptoms start going away. My bleeding stopped from the throat, mouth, and nose and even my vaginal area. Oh, I was the great mystery with my doctors. The worst was the burning tongue, and the choking on dry food and regurgitating what I had just swallowed. This felt like I was having a heart attack. Scared the daylights out of me. Again, they had no idea. The frustration was unbelievable. I remember the first sign of improvement when I awoke and I could literally hear fluid running into my ear. Even my ears dried out. Please answer this question if you will, what is your medication regimen and I hope it is not just eye drops and special mouth products. It sounds to me as though you are not getting appropriate treatment. For those of us who have severe symptoms we are in quite an ill state of health. This is a variable disease. I would like to know if you ever watched the program, Mystery Diagnosis? There is a segment called the Woman Who Could Not Cry. This woman, her name is Linda is from Philadelphia where I lived for 50 years. Her plight is quite similar. Plaqeunil costs me 200.00 per month out of pocket. I tell the pharmacy every month I don't care what it costs. It is giving me my life back. Many doctors are totally clueless to this disease and I mean most. A rheumatologist is the only one to help get the medicine you need. My doc wants me on a biologic but forget that - way to dangerous for me and I am trying to raise my daughter. I need to live to see her through in life as I am a single parent with a very fragmented family. I hope you are getting the appropriate treatment. You got the diagnosis but I wonder about your care. I did not get the diagnosis but now that I know I am getting appropriate treatment. My life is not perfect but I am no longer that strange person that I was with the disease at its peak due to lack of a diagnosis. There is a drug called Gabapentin for peripheral neuropathy which you are expressing that you have the old familiar strange numbness. This disease can destroy your future, your life, your career. I know, it happened to me. Do your hands change strange colors, if so you have Raynauds. I have that too. Any severe joint pain? Do you have difficulty spelling words all of a sudden? I was an avid speller and all of a sudden I could not spell any words. It felt like I was having a stroke. I hope you are getting the medication you need, now if you are on this medication I will worry that my symptoms will revert back. Oh yes, I can throw in the skin problems, I dried up like a prune all of a sudden and the skin would just slough off my body. It was horrible. But mostly all I could do was drag my body around in a fog of weakness. I was always dressed with makeup and everything had to be perfect. Now, I am lucky enough to get dressed but this is greatly improving. Yes, this is truly a mystery illness but it sounds like you need a health care partner, I hope you are successful with this. You will be in my thoughts always. As your story mirrors mine and I know your pain. I really know your pain, frustrations, sadness, and praying you can get your old self back. Every week I notice a new improvement. I can write again without leaving out letters. I can go to the stores that I need to go instead of telling my daughter that I just don't have it in me to go to another store. I hope my plight helps you. I hope I gave you information that will help. I hope you have an understanding support group and family. If not, find a Sjogrens support group. Sometimes they are hard to find. For me now, since I moved from the comfort of my great city of Philadelphia had I known I was going to finally get a diagnosis I would have never moved to the mountains of Pennsylvania. All is not lost, fight for what you need. I have had to fight for everything but fight I did. You deserve your life back. At least there are treatments out there. And they work if you can get over any issues you may have with these treatments. Take care of you. Demand it!
Sincerely,
Dee

Hi Meredith,
I have the identical symptoms that you have. My problems began at 30 with Hashimoto's and other very peculiar symptoms. In retrospect, it was Sjogrens. I always had rheumatic problems since I was a child. Horrific, yes, horrific pains in my legs as a child and I would scream at 3:00 am and wake up my parents who would put extremely hot compresses on my legs until I fell asleep. I never felt like a healthy child or adult. Always tired, always sick with some bronchial problem at least once per month. I always overslept during my career in marketing. I finally had to leave my career because doctors were baffled. I was dismissed with my symptoms. I went on social security for so called depression. I later realized my mother had Sjogrens as well which even today it is a tragedy as she never got the help she needed. I believe the lack of treatment was my mother's demise. I am your twin with symptoms, HOWEVER, I was just diagnosed in December 2011. I am taking Plaquenil and a low dose of steroids; Medrol 4 mg. per day. Plaquenil is 200 mg. x 2 per day. I became allergic to everything in my later years so I was scared to death to take Plaquenil. I finally went on it when I got the diagnosis. My Rheum. get pushing the drug on me without a definitive diagnosis and I was frightened to take a drug without a diagnosis. I was also diagnosed with seronegative arthritis. I met with a jeweler today who told me she had horrible symptoms and they put her on this horrible drug called Plaquenil. I had to laugh as this drug saved my life. Of course, I laughed to myself as her R/A luckily for her must not have been too bad. Because of the Plaquenil and low dose steroids I am starting to get my life back after ten years of shear heck. Also, my doctor is still pushing the drug Methotrexate but I had an adverse reaction similar to an allergic reaction from the injection. The Metho is a stronger DMARD medication than Plaquenil. Sanofi Adventis is the brand name manufacturer and the generic gave me a set back in my symptoms. Now, you are not experiencing fatigue you are experiencing weakness. This disease is a disease of dehydration and this disease affects everyone differently. Oh, to just have dry eyes and dry mouth I would consider myself perfectly healthy. I love to hear that some people are so optimistic but they do not have our symptoms. Before my diagnosis I kept telling my Rheum. that I felt like I was experiencing dementia. He ordered an MRI and nothing was a miss. However, I know it as a fact that this disease causes inflammation of the brain and you feel as though you are going senile. I know this well when I spin around trying to figure out what I am supposed to be doing. I call it the slow burn into the abyss. I read an article and I can't recall who it was written by but it was a major study on mild cognitive disfunction. Otherwise known as mild dementia. This study stated that steroids will assist in bringing the cognitive difficulties under control. I do not want to sound as though I know everything regarding this disease but I lived through this nightmare for a decade and longer just milder when it first hit. You have peripheral neuropathy. Do you notice any burning sensations in the bottom of your feet. Any strange muscular cramping? The list goes on and on. Please do not confuse your fatigue with weakness that was my biggest issue, I kept saying I am so tired. When I realized, no, I am just so weak. I used to throw 50 pound bags of dog food over my shoulder and slowly my boyfriend watched me waste away to someone who could not even get out of bed. You need to be drinking plenty of fluids all day. You are dehydrating. Your bun to creatinine ratio will sometimes show that, as I asked a doctor why that was and I was having urinary problems and his statement was Oh, "You have mild dehydration." Really? I was drinking more water than usual because I was always dry. This was the first clue. The Plaquenil takes a while to work and then one day you wake up on time and the strange symptoms start going away. My bleeding stopped from the throat, mouth, and nose and even my vaginal area. Oh, I was the great mystery with my doctors. The worst was the burning tongue, and the choking on dry food and regurgitating what I had just swallowed. This felt like I was having a heart attack. Scared the daylights out of me. Again, they had no idea. The frustration was unbelievable. I remember the first sign of improvement when I awoke and I could literally hear fluid running into my ear. Even my ears dried out. Please answer this question if you will, what is your medication regimen and I hope it is not just eye drops and special mouth products. It sounds to me as though you are not getting appropriate treatment. For those of us who have severe symptoms we are in quite an ill state of health. This is a variable disease. I would like to know if you ever watched the program, Mystery Diagnosis? There is a segment called the Woman Who Could Not Cry. This woman, her name is Linda is from Philadelphia where I lived for 50 years. Her plight is quite similar. Plaqeunil costs me 200.00 per month out of pocket. I tell the pharmacy every month I don't care what it costs. It is giving me my life back. Many doctors are totally clueless to this disease and I mean most. A rheumatologist is the only one to help get the medicine you need. My doc wants me on a biologic but forget that - way to dangerous for me and I am trying to raise my daughter. I need to live to see her through in life as I am a single parent with a very fragmented family. I hope you are getting the appropriate treatment. You got the diagnosis but I wonder about your care. I did not get the diagnosis but now that I know I am getting appropriate treatment. My life is not perfect but I am no longer that strange person that I was with the disease at its peak due to lack of a diagnosis. There is a drug called Gabapentin for peripheral neuropathy which you are expressing that you have the old familiar strange numbness. This disease can destroy your future, your life, your career. I know, it happened to me. Do your hands change strange colors, if so you have Raynauds. I have that too. Any severe joint pain? Do you have difficulty spelling words all of a sudden? I was an avid speller and all of a sudden I could not spell any words. It felt like I was having a stroke. I hope you are getting the medication you need, now if you are on this medication I will worry that my symptoms will revert back. Oh yes, I can throw in the skin problems, I dried up like a prune all of a sudden and the skin would just slough off my body. It was horrible. But mostly all I could do was drag my body around in a fog of weakness. I was always dressed with makeup and everything had to be perfect. Now, I am lucky enough to get dressed but this is greatly improving. Yes, this is truly a mystery illness but it sounds like you need a health care partner, I hope you are successful with this. You will be in my thoughts always. As your story mirrors mine and I know your pain. I really know your pain, frustrations, sadness, and praying you can get your old self back. Every week I notice a new improvement. I can write again without leaving out letters. I can go to the stores that I need to go instead of telling my daughter that I just don't have it in me to go to another store. I hope my plight helps you. I hope I gave you information that will help. I hope you have an understanding support group and family. If not, find a Sjogrens support group. Sometimes they are hard to find. For me now, since I moved from the comfort of my great city of Philadelphia had I known I was going to finally get a diagnosis I would have never moved to the mountains of Pennsylvania. All is not lost, fight for what you need. I have had to fight for everything but fight I did. You deserve your life back. At least there are treatments out there. And they work if you can get over any issues you may have with these treatments. Take care of you. Demand it!
Sincerely,
Dee

I have had sjogren's for several years. I use restasis which has helped a lot. I continue to work and work long hours since the diagnosis. I am 62. I am optimisitc that I will continue to lead an active life.

Hi - I was never given a definite dx of Sjogren's, but my Schirmer's (sp?) eye test showed severe dryness, and I have been dxd with several other autoimmune diseases. Is there a specific test for Sjogren's? I use Restasis and have had my tear ducts plugged. My eyes are better since the tear ducts were plugged, but I still have to use drops frequently. Fatigue is my biggest complaint. Anything I do tires me out to the point that I have to take a nap. It's very frustrating. I'm wondering if there is anything I could take to improve my stamina. Currently, I take Imuran. It may control some symptoms, but I feel terrible and am very limited in what I can do.

I was Dx with Sjogrens last year, Sjogrens primary-cutanious b-cell lymphoma ?secondary. Also RA and ...., I'm 54, Had intense eye & thirst issues since @2006. Fatigue indescribable,off and on,then always & ever increasing with sleep and pain isssues, etc. I no longer work. Miss it, but am finding and revisiting hobbies. I have noticed now that the world wind of the last year is slowing down (Diagnoses, 2nd opinions, Chemo (talk about a fog) ego maniac physicians, major problems with my medical records...which I advocate to others now to obtain on an ongoing basis...it is amazing the errors over and over 'cause they copy off each others notes, 9why sit there talking to them...they obviously were'nt listening) miss quote you, ommit issues brought up etc.....! Sad state of affairs and may the heavens help us all if electronic medical records goes national...with the errors in my chart, like cardiac surgery in my 20's that never occured it is insanity at best. And I'm not alone, the more I speak/advocate for this, so many others have horror stories. All that said. The fatigue has improved alot from where it was, stress, anxiety and depression post diagnoses/treatment added a different dimension to the fatigue. But it has improved. Sometimes we can be hard on ourselves Fatigue surely affects the cognitive process to varying degrees. Is there depression? Some adjust easily to chronic illness, others not so much. Talk to your Rheumy ( and get the records), try to sort this out. Could be a few issues compiled. Oh, I had issues with numbers prior to diagnoses/treatment but not now. Fatigue? Sjogrens? Pain? Who knows?

I have so many symptoms I feel like a chronic complainer. I am now getting so many severe symptoms I am very concerned. I do know however, I have been hospitalized for dehydration so severe, I was not talking coherent. Best thing like an instant IV. Zico~~is coconut water out of green coconuts. Very costly but can get a good rate from Amazon. Saves me many times from passing out is the best thing for an instant dose of moisture in my mouth. Better than anything I have had in the way of mouth moisture. I can hardly walk anymore and horrible pain everywhere. Hard to talk and very fatigued. I could be worse though with something else.

Wow- thank you everyone for your replies. It is nice to hear from others who understand what i am going through. My rehumatologist ordered an MRI after we discussed my symptoms (forgetting things, confusion, not feeling like I was processing information quite like I used to, numbess in face, hands and feet.) He was concerned about MS but scan showed otherwise. Blood tests came back like always with the positive antibodies and very low vitamin d levels. Am now taking 2000 mg. per day of vit. d.
Work has added to my stress and as a result (my doc thinks), I am more fatigued than usual and my hair is starting to fall out. I didn't realize how bad it was until I saw a photo of myself in the pool with my children . . . the wet hair showed thinning patches. 🙁 My wonderful husband agreed I needed to take time off so I resigned from work and we are trying to make it work on his salary alone. Am hoping this will decrease stress and improve symptoms.