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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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.

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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.

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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 completely agree, it all must be straightened out, but the process is utterly fustrating and so horribly time consuming. I have thought at times to just ignore it. But because I was such a stickler for notes (was a nurse) being accurate and objective so the patient is properly advocated for, I expect no less from others. Not a tall order at all really from where I came from, but obviously it is from many others. And not only would I have been tossed out for such sub-par work, I wouldn’t have been able to consiously do that : slighting my patients.
We need complete-open-communication with all aspects of our medical records. I currently have to deal with a third party in obtaing them and by golly they never send the proper notes, and then to tend to the errors/adendems etc., It is a hefty portion of time wasted/working on something that is so vitally important, yet continues, is fustrating, and is counter productive in stress levels…which isn’t helpful for ill people. Proper documentation is a basic right of medical care! It should not be an exception. We all make mistakes, but this is to much!
I bought a small recorder recently so that I can bring it to visits, announce the visit will be recorded and see if this helps the situation.
We should all be accountable for our actions/work. We pay dearly for healthcare and such a broken state it is in. Since records are going national and there is legisation underway that will enable law enforcement to extract information, (medications/conditions etc.) then it is imperative that they be correct, for many reasons….the first and foremost being our own health advocation.

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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I’m sorry to hear about all your troubles. How nice of you to share and try to help others. You seem very positive in spite of all that you are going through. I wish you all the best.
I have read that ‘they’ are beginning to see a link between immunizations and immune disorders. There has been a huge increase in diseases affecting the immune system and it seems to make sense that with the increase in flu shots and hepatitis shots for kids in school etc…that we are provoking the immune system beyond what it can handle. My 4 year old grandson has so many allergies that all began with a bad reaction to his MMR shot. Look at the allergies that so many children have to peanut butter… When we were kids that’s all we ate for lunch!

And please, folks, get copies of all your test results, do your own research, know side effects of medications, read Dr. Weil and Dr Oz and get fit and a good weight. Remember, carbs increase inflammation in the body so eliminate 90% of bread, rice, pasta, cereals and potatoes from the diet. Swim, go to daily fitness classes, eat your 6 – 10 veggies per day. Keep positive and at a minimum take your winter 1000 – 2000 IU of vitamin D, daily Omega 3s and multiple Bs. Get out in the sun at least some of the time without sunscreen so you can absorb the vitamin D. Get plenty of sleep (I take natural progesterone cream and magnesium at bedtime) and engage in activities that you love. Keep positive and maintain relationships. All the best to you all!

P.S. Btw, my 30 year old daughter may have Sjogrens. She is undergoing so many tests to rule out other conditions. She does have dry eyes, drinks a lot, has chronic pain in her neck, back and knees, sleeps poorly because her arms will fall asleep when she lies on them and she has digestive problems. It seems like fibromyalgia to me…or maybe Sjogrens. I regret having her immunized against Hepatitis B or was it A…12 years ago.

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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Sounds like Sjogrens to me. Sounds so familiar. Yes, my daughter was immunized against Hep B 16 years ago. I hate to say it but she has a butterfly rash now and joint pain. Nothing showed in blood work yet. My bloodwork was not positive for years. I have learned that most opthamologists (sp?) diagnose Sjogrens first via a Schirmers test. I worked backwards. Finally positive blood work then went to see a top notch eye doctor. My eyes were so dry they were like sand paper. The can also do a biopsy of the lip. Have not done that yet.These are the appropriate steps to take for a preliminary diagnosis. Unfortunately, I worked backwards. When you have this peculiar disorder you don’t know where to start first. I hope she does not have Sjog. or some really mild form. neck pain is disturbing though. I know that all too well. I don’t want to be Negative Nancy but I have had titanium implanted in my neck twice. The bones were compressing the spinal cord. Not fun! Your post was a wealth of information and I believe you are 100% correct in your thinking. They will just brush this under the rug too, unfortunately. I wish I could go back and do things differently. I believe the polio vaccine screwed me up as a child. Became a sickly child after that. So, that being stated. Yes, I really, really wonder. Good Luck with this autoimmune debacle. I wish the best for your daughter and you. Take Care. We are all in this together.

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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 Mima,
Sorry to hear the dx of Sjogrens. Welcome to the club. Symptoms are so variable with this disease for each patient. Yes, I had skin problems, extremely dry, sensitive when the disease became full blown. Medrol and Plaquenil has helped with that. Much better now. Mild kidney problems right now. I did have unexplained bleeding from the urinary tract for a while. They told me it could be cancer it was not, it was from the disease. As for brain fog, this is strange a this is also a symptom of Lupus. I have it bad. I throw away my car keys. I have difficulty spelling now and at one time I could spell any word with ease. I throw drinks out in the trash can instead of in the sink. I have said some pretty embarrassing things in public as the words come out – not the way they should. I mispronounce syllables at times. I can’t tell you what I said but it had a lot of people gasping and in hysterics. Just as I was about to finish the word I was able to catch myself but the people around me knew what was about to come out of my mouth. It took me months to go back to the Ice Cream Parlor. My daughter was livid that I would not go back she loved this place. So brain fog, yeah, I know about that. I can barely type anymore, I just can no longer handle a key board. Sometimes I feel completely frustrated. I am ambivalent regarding my diagnosis, I definitely have Sjogrens however, the doctor told me I have R/A too. I wonder though, I have no joint disfigurement. Time to keep digging with this autoimmune stuff. At least, I can say that in one lifetime I feel I lived two totally different lives. One good, one not so good. But I try to take the good and the bad. My daughter keeps me going. Hope I answered this for you. Yes, it is a mystery to me too.

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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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Marilly,
Yes, there is but it sometimes does not become sero positive for a while as in my case, I just think the blood labs stink! The test is under two categories; Category A, Systemic Lupus Profile A which has seven specific tests.RNP Antibodies, Smith Antibodies, RA Latex Turbid., Antichromatin Antibodies, Sjogren’s Anti-SS-A,
Sjogren’s Anti-SS-B; Anti-DNA (DS) Ab Qn. If you are positive for Sjogren’s SS-A they say that is is secondary to another autoimmune disease. I wonder about that though. It does not make any sense in my case. I am told I have Primary Sjogren’s Anti-SS-B. Next Profile Systemic Lupus Profile B; Complement C4, Serum, Complement C3 Serum, ANA Direct. A “Vectra DA” test was performed on me to see disease activity in my body. This is normally used to follow Disease Activity in R/A patients this test is not a definitive test for R/A it monitors activity and response to chemical treatment you are receiving. Mine came back moderate/high while taking methylprednisolone. The Plaquenil worked very well with me, albeit a short time. I felt like my old self again.But I am supposed to be on an autoimmune cocktail of drugs. Medrol, Plaquenil, Methotrexate. I cannot tolerate the Methotrexate. Allergic to that stuff. It has just made me very sick again. I am now on high dose of Prednisone now. I feel crappy again. I was told that I need to be on a biologic such as what you are on. Sorry, just can’t afford it. I know you feel terrible because that is what this disease can do. I know your frustration and agony. Don’t you just get tired of dragging your body around like a rag? I call it the slow burn. Like you are slowly losing yourself. I wonder just how debilitating this can get. As though it is not debilitating enough. I don’t know what to do about improving your stamina, I fought this symptom for years and I have lost the battle. I try to just pace myself and if the dishes don’t get done or a load of laundry does not get done I figure it will still be here no matter what. So, I just shut the door or close my eyes to the mess. I do what I can. I used to be so active, as I am sure you were too. That is what we miss the most. Who we used to be. Hang in there, we need to adapt no matter how hard that is. I know I am still in the denial stage. I am sure one day I will get there. Life is a tough road. They said it was n’t going to be easy and they were n’t kidding. Keep your chin up and push those doctors for answers. If we all push together we may all accomplish the impossible.

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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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You are a Maverick in your actions and I commend you. I learned a lot here as well. I am also tired of being ignored and treated like an incorrect medical record. We are lucky to get 15 minutes out of a doctor. Now really, the only way we can fully tell a doctor what is wrong with us is to write it down, have him read it. Sure, he/she will read it. LOL. and then leave the doctors office. All of these autoimmune diseases have very, very, weird symptoms. Some I hated to discuss because in the back of my mind I know they are thinking, (liar, attention seeker, hypochondriac, histrionic, menopausal, neurotic, crazy, woman). Funny though, for twenty eight years in a high powered, male dominated profession no one ever looked at me that way. Not until I became sick, did this industry of health professionals make me despise them. I like your style and passion to our plight. We have to start demanding respect from these so-called professionals. I guess I need to start pulling more of my records. I already have a 50 pound box, literally, no joke. Thank you for the education as there is nothing more powerful than being armed with knowledge.

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@ronni

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.

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The coconut water works? I will have to get some of that too. I definitely am tired of the scalded mouth syndrome coming and going at will and the mouth sores. Been hospitalized for dehydration interesting. I always called this a disease of dehydration. Because of the fact that one day, I became wrinkled and dried up almost overnight and my eyes sunk into the back of my head. Try telling a doctor that one. My skin turned into a pile of (sorry for this) dandruff. I would take my clothes off and it looked like it was snowing. So sorry for being graphic. I really freaked when my hair kept falling out in clumps and this had nothing to do with medicine. It just happened. I had such a thick head of hair and now it’s gone. Fine, dry, and well just not normal. I used to pass out too. Is that what it is caused from dehydration? Got to go to Amazon. I’ll try the Zico. I will try anything at this point. Sounds promising. Thank you very much. This site has turned out to be a wealth of knowledge for us, I believe. We have to be informed to take care of ourselves and any and all advice from you folks here is greatly appreciated. By the way, I feel like a chronic complainer too. I am just tired of it. Who would want to feel like this? You’re right I guess it could be worse.

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@meredith0903

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.

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Dear Meredith,
I hope that you just did not resign. Disability????????????????? You are disabled dear. This falls under disability. Review the Sjogrens Syndrome.org website. The S.S. admin has now listed this as a viable disability and there was a great meeting with social security and people or I should say doctors discussing autoimmune diseases. Do you have Lupus, Sjogrens, R/A if you mind me asking? The site had a recorded session from social security and the information was mind boggling. Take care of yourself. Apply for SSDI all they can do is say no.

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