Would like to hear from people with Sjogrens

Posted by Meredith0903 @meredith0903, Apr 12, 2012

I was diagnosed with Sjogrens at age 23. I am now 38 and my main symptoms (aside from the dry eyes and mouth), were fatigue and numbness. Lately I have been getting concerned about cognitive problems. I seem to be more forgetful, have trouble concentrating, trouble with numbers, and coming up with solutions to problems. I feel like it is starting to affect my job and I can’t afford not to work. I have been blaming it on my constant fatigue, but now am not so sure. I would love to hear from anyone who has similar symptoms! Thank you.

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@marilly

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.

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Hi Marilly,
It’s Dee again. I am like a kid in a candy store since I found this site. I felt like an alien with this disease. My heart goes out to you and everyone here. Oh, you are not sick enough let’s throw Crohn’s into the mix too. My brother in law had this in the 70’s and nearly died because they thought he was faking. Faking, really? He was 6’2, weighed 220. Became so weak he could not brush his teeth. All he could do was lay. My sister has this disease too. Just having Crohns can put you over the edge. My brother in law was saved by high dose steroids at the time. And now he is having his 60th birthday in a few days. He is taking the drug called 6MP; also known as Mercaptopurine. It was tough for him to take it but he hung in there and finally after all the operations and only a couple inches of intestine left he is stable. He was not supposed to live this long. He ran a Crohn’s support group. At his worst he was 105 pounds. I was watching him die as a teenager. I know the old “Oh, you look fine routine.” My brother-in-law looks better than ever now. At 60, he looks about 40. He can exercise now and follows a strict routine of rest, exercise and limits his activities every single day. I give him credit. I am tired of people saying I look great. I am going to start carrying a picture of myself around before I got sick and ask them if I still look the same. What a contrast. I look old and haggard at 54. I should not look this way. But they still say, “You look great”. No, I don’t. I look horrible. We always say to ourselves, if they can fix this I know I will feel so much better. I am tired of waiting to feel better and I am coming to terms that this may be as good as it gets. Ugh! Don’t worry about the doctors and what they think. I know we need them for our health care which of course is very important. But these folks are not living what we live and they really cannot relate at all. It must be nice to be healthy with a great career. I know I miss my career. You have so many autoimmune diseases you have to be struggling. This is very common to have Sjogrens with these autoimmune diseases. I don’t know how to put on a link but go to Sjogrenssyndrome.org they have a great video and a wealth of information. Some authorities call this an orphan disease. It really is nt it is just not diagnosed and women primarily get this. So, there are 2 strikes against us. I wish you well, stay strong, take care and be kind to yourself. Everyone with ill health needs support. People need to understand that too often we are pushed aside because we have a chronic illness/illneses. I believe doctors get annoyed if it is nt something they can fix with an operation like appendicitis. Is there really people out there that think we would want to live like this? I want my darn life back. I had a great life. I loved life. I was blessed. Now, this is my cross to bear. So, we need to make the best of it and enjoy every moment of relief we get. Write soon. I now feel connected to the rest of the world again. Hugs to you, Dee

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@powerofpositive

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?

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Hi PowerofPositive:
Just checking in to see how you are? I am pretty much the same. You know, everyday can be a struggle. So much garbage. We tried so hard to be perfectionists trying to accomplish and end goal and always there is an incompetent or road block in our way. What has happened to the integrity of our society. Do you remember when people cared and listened to you and they actually relayed accurate information? Oh, the good old days and how we long for them. I read these posts and from the nuances I am picking up we are a group of intelligent people here. No baloney, just women possibly some men, looking for help that does n’t seem to come. Yes, with a lot of autoimmune diseases comes depression, why I don’t know. I have read and I wish I could quote from it but the brain fog takes over —– a lot— that the brain actually suffers from inflammation as well. They did a study and they used fairly high doses of steroids that appeared to relieve the symptoms of cognitive impairment. In my humble, non medical opinion, even though I read so much I think I could have taught these doctors a thing or two. I believe, there would have to be a depression in the mix. Any disorder that can potentially hit the brain and cause cognitive difficulties which slows our thinking would have to bring on episodes of depression. Take a look at Alzheimers patients. Another lovely disease process. This is known to cause depression. I have watched enough family members with that. Forgive me if I sound bold, this has always been my personality. There were times which I could not believe, I actually stated, to one doctor, that he was lacking in education as I was walking out his door and I watched his mouth drop. I was not always a bold personality until I realized if I did not speak my mind nothing would change for me or anyone else seeking the truth. I believe docs have a speech that they use on the patients that they find trying so they can go on to something that is easier and less taxing for them to accomplish. It is though they look for instant gratification in their practice. Pick the easy stuff as it is quick and easy. Just dump the difficult and hopefully they won’t come back. You know, almost like a sales pitch. I know for a fact not all doctors are like that however there is a large percentage. This disease and others are starting to receive respect. A very large Metropolitan Hospital has a building specifically for Sjogrens patients staffed with Rheumatologists. Opthamologists. Neurologists,Oncologists and many other specialists to treat and cornfirm this diagnosis. I know this as I called them. I can’t state who they are as this I am sure would be a conflict of interest on this site. America is finally picking up where the Asian Countries have been studying and developing new drugs for this disorder as well as Lupus, R/A. America is not the trail blazer of this disease. Two Asian doctors diagnosed me. One doc of Indian descent and one from China and they knew all about it. Hugs to you. Dee

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@powerofpositive

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?

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Yes, I have been shuddering for years,regarding your statement regarding errors. In my opinion, this is utterly a disgrace. I have watched this for decades. I handled the care of my ailing mother for years. I had more screaming matches with Doc’s than I would like to admit. Sometimes the words that spilled out of their mouth’s or their nurses were complete lack of regard for their profession. For those of us who are perfectionists and on this site, and I don’t know why there appears to be a common thread of perfectionism. Can this possibly be a personality trait of this disorder. I do know that certain traits go hand in hand with some illnesses. Need more research on that one! I am not an belligerent personality but I am intolerant with a profession that demands respect but does not give any in return. Where is the fairness here? We deserve so much better. We are supposed to be dedicated to what we do for a living. Have we lost the intelligence that once graced this planet. Or have we just become complacent? Sorry, I am venting again. However, do we deserve this type care and disinterest from professionals. I definitely think not. I do not want to leave this earth as my mother did. Neglected in a nursing home. whenever I had to attend to my career and family. I felt like a prison warden overseeing staff at a nursing home that cared only about how much overtime they could collect. What is wrong with this picture? I can’t be a doctor, lawyer, chief, cook, and bottle washer for the rest of my life. I now have to take care of me and have compassion for mankind. Alright, I am off my soap box. Thanks for listening but what I read here makes me see a commonality that is not what we deserve. I do know now, that I was not alone in this very difficult plight of ours. Take care all. Keep the faith and believe in yourselves. You really are not alone. Hugs to All, Dee

REPLY
@sidepockets

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

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Hi Robin,
To answer the question regarding the titanium fusion. Yes, it really worked. I had crepitus and pain. My neck was actually making a crunching noise when I would turn it. I never really thought much about it I just lived with the pain. I found out this is not a good idea to ignore any bone spurs or spinal cord compression. I did not really want the surgery and put it off and the neurosurgeon found out and called me on the phone. I was told quite directly that is not what I should be doing and don’t ever postpone this operation again. This time, I thought it was a mild issue and got yelled at. So, Robin if Kate is having spinal issues they need to be closely watched. I ended up having two surgeries within 3 years. The first surgery was directly performed on the front of my neck. Not so bad except you can have a tendency to choke a lot until you finally heal. The second was for C-4, C-5 compression. This time they went in from the spine. Not so easy as the Sjogrens was rapidly progressing at this point and still no diagnosis. I dried out like a prune after the operation. I understand your concern regarding your daughter’s irritability. Yes, dealing with this day in and day out, and if it is not one thing it’s another can pretty much put a person in a foul mood. It is a relentless slowly progressive, strange disease. Has she been checked for Sjogrens antibodies yet. The tests are not always positive. I went for years with symptoms and nothing to back up my claims. The responses from my docs were not pretty. It was you are stressed out, you need a vacation. In other words, all in my head. Actually it was all in my joints and bones. But I had a bone scan and the doctor kind of giggled and said, “You have arthritis all over, even in your feet!” When are you going back to your Rheumatologist. Still, no positive results and still strange looks. You can have proof and they still question your motives. I don’t know what motives I could have had other than I was eating Advil, Motrin like candy. Yes, the backpacks are killers on our children. They have done many studies on the effects. Please keep in mind that Sjogrens is not always a stand alone disease. It can be primary which means comes with no other autoimmune diseases. Or secondary to lupus, R/A, Hashimoto’s Thyroiditis (Hypothyroidism) I have that one too. She should have the Lupus A and B profile done and that also encompasses Sjogrens. The Schirmer’s test and lip Biopsy is usually the first place to start. My doctors never started there. Just the same old blood work, with the same results. Your daughter needs to have a full workup done. The earlier they know the less damage is done. Also, some labs are just better than others in detecting certain diseases. I am not sure how it works in Canada but we have all different labs that are available. Possibly you do too. I myself am a skinny wreck. Can barely eat and no my diet is horrible. No appetite and that causes me to not want to cook. I have been cooking lately though and trying organic foods. Will continue……..

REPLY
@sidepockets

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

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This is part 2; I got knocked off for being long winded. That is what happens when you move from a big city with throngs of people to the mountains where when you finally see somebody you want to run up and hug them! Lonely up here.
I keep getting knocked off. I write too much. Robin you are absolutely correct in the use of statin drugs. I can’t take those drugs. I turn yellow and my liver enzymes become high. They are awful. Yes, anyone truly can do this naturally. I used to laugh when a commercial would come on the television that statins are for those who can’t control it with diet and exercise alone. They just did not do the right things, the right way to get their cholesterol and triglycerides under control. I can picture a guy, smoking, eating pizza, drinking and sitting on the sofa saying to his doctor, “But I tried everything you told me to do.” Wrong. My cholesterol was through the roof all my life due to the hypothryroidism, and my eating, my lack of exercise, my smoking, my stress level until I made a complete change. It works and I would have thought no, my mom had this, my dad had this. It is just in my genes to have this. Wrong. I was not doing the right things. My cholesterol is through the roof again but I barely eat. But, I don’t exercise due to pain, wrong, I eat quick easy to make foods because I feel awful, wrong. So, again, I am back where I started from. I wholeheartedly agree with you. I let myself go and I used to be so physically fit. I did not know that about the melatonin. Very informative. Yes, I think the developed world has become more or less lazy and we think if there is something wrong just pop a pill the doctors will fix it. No wonder they are so nasty. The probably look at us as though we are unwilling to do anything to improve our lifestyle and in most cases they are probably right. I need a health food guru and someone to push me my brother in law has tried since I moved up to the mountains – he lives across the road from me. But since I moved up here the flares have gotten worse and it always seems to be something going on, my daughter, the dogs, the house, my whining, the neighbors, whatever it is can throw me into a tailspin now. I used to be able to handle anything, now if something happens I just fold. I am just not who I used to be. But if I don’t make changes it might just end up being who I was. It’s good advice and I am doing a little each day to make things better. I hope your daughter can find a resolution to her health problems as it is a terrible way for a young woman to have to live. I know, I lived it since I was 30. A struggle to keep my head above water everyday. Thank you for the advice and tips they are all great. I have to remember these words and live by them. It is time to be proactive and not reactive for a change. Take care of yourself and your daughter,

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@mariongreen

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.

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Hi Marion:
Some positive news here is good. You have a great attitude, with a lot of positive thinking. I need a good dose of positive thinking. I would like to think myself healthy again. This just becomes so old so quickly. I find I am in a rut of, “now what is going to happen?” I used to be a positive, bubbly person. Laughter truly is the best medicine. Live, love, laugh. Take care and stay positive.

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Hi, Meredith. I’m so glad I found a resource to visit with others with Sjogren’s! I’m 47 and was diagnosed with Sjogren’s and Rhematoid Arthritis a year and a half ago, but of course I had dry eyes for years before being diagnosed. I had my tear ducts plugged, taking Restasis, and use Genteal severe eye ointment and Oral Balance mouth gel at night. My eye vision is poor so I have been too scared to take the plaquenil drug, as the rare side effect is blindness. Do you take this drug and have any side effects? I take vitamins and 2000 iu vit day per day. For the last 4 years I have had constipation issues and drink Dr Millers Iaso Tea which greatly helps. Do you have this issue too?

Multiple fingers on both hands have arthritis symptoms and wake me with pain but usually only after I pull weeds in my garden or in general in the winter. I have mild tingling in hands but nothing regular…yet. During winter, I keep a humidifier next to me at all times, but I sitll wake up min 3 times a night for eye drops and 5-6 times for mouth Oral Balance gel or a drink. Just recently, fatigue has been overwhelming where I can’t stop thinking about taking a quick nap. And now my face has painful acne fluid-filled sores — which is nothing like the blackhead/whitehead stuff in my earlier years. Do you or did you have this acne problem? I also noticed that I have memory issues but didn’t think it was related to Sjogren’s. Perhaps it is. I work full-time (at home) on a computer all day.

The memory, acne, and fatigue symptoms are all happening so fast and regular now, I think I need to see the doctor again and re-evaluate my need for plaquenil. The Advil regimen alone isn’t working anymore.

How fast did your symptoms progress from 23 to 38? How are you today? What meds are you taking? So sorry you were diagnosed with this at such a young age. Were you a sickly child?

My parents both chain smoked and I had tonsilitis/strep continually. I don’t drink or smoke. I had bronchial and sinus infections alot in my 30’s and 40’s. I’ve had the flu twice where I was hospitalized; since taking the flu shot, I haven’t gotten this anymore. I also had viral meningitis when I was 29; I think that is what spurred my decline in health. I’m really hoping for NO NEW SYMPTOMS. UGH@~! @meredith0903

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@powerofpositive

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?

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Why would this sjogrens ‘wing’ at a metropolitan hospital include oncology? I understand the other related docs like rheum and opth.

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