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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@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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Sorry, it is the Sjogrens thinking that made me ask what you are diagnosed with. I read your previous post. Duh! Sorry, I can only laugh at myself for not being with it. I do this about 25 times a day. If I don’t laugh I will cry so I choose to laugh it off. Please accept my apologies as I thought this was all kinds of disorders relating to autoimmune. The brain fog makes me feel stupid at times.

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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Remember, you are not a quitter, but you are disabled. Any financial assistance would help you. SSDI is not easy and I know how you feel. Just writing out a check or looking for something that you know you could find easily becomes an all day affair. Oh, and having to concentrate in front of a board of appeals is enough to put you into a tail spin. Concentrate! What is that like. I forget. Good Luck Meredith – don’t give up. 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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Thank you Sidepockets/Dee for your quick reply and support. I have taken note of your info re the Schirmers test. Did the titanium implants in your neck help?My daughter is in constant pain with her neck and gets very irritable (and I’m afraid it will drive off her BF.). Kate just got MRI results this week which show compression at 5 levels of her spine. When you suffer with chronic pain, it changes who you are which is such a shame. Kate was a cheerful, lighthearted girl. She can still laugh and enjoy life but has a tendency to overreact to things and become touchy and cranky..
As a child as soon as high school started (age 12 here in Quebec) Kate carried her backpack full of books all the way to school each day. I used to watch her straining her neck and leaning forward as she left the house. That’s when the pain, physio, daily Advil all started. She played the violin quiet seriously and that was another assault on her neck…and now she is paying the price. This may simply (and still seriously) be a spinal issue…but she has had dry eyes and mouth for quite a few years and drinks so much water and slathers on lip creams. A while back I thought she was diabetic she drank so much.
I must say, thank God for Medicare. Her doctor sees her the same day (because she works for an intl company that has its own doctor in the bldg) and the tests are done the next week or so. So things are moving quickly. We ruled out MS which was a big relief. We don’t have the added worry of the cost of anything. If she were unemployed or retired like I am, she would get the same care. Go Obama go! LOL

Dee, are you in the best shape you can be? I mean, do you eat well, get plenty of exercise, sunshine and are you managing to keep a healthy weight? I think we can all improve our energy levels, physical strength and general health so that we tire less easily, have more stamina and enjoy improved mood.
An example: last fall my new doctor wanted me on statins because my cholesterol was a bit over the limit. She was adamant and I refused. I told her that I would make some lifestyle changes and over the past 6 months I started on my health store ‘guru’s’ recommendations of daily Red Rice Yeast (a natural statin) and some cholesterol lowering garlic tablets as well as a TBSP of apple cider vinegar in water to start each day….vile! I did my step class at least 3x per week but did not lose any significant amount of weight…but am still working on it…and a recent blood test showed that my cholesterol is now in the normal range. The point being that lifestyle changes, sometimes instead of drugs, can work. I am not for a moment suggesting that you should not be on the medications you are on. Without them I’m sure you would be suffering. What I mean is that making lifestyle changes, can have a big impact on one’s health. We have been trained to think that you go to the doctor and you get a prescription. It confirms that you really do have a legitimate illness. But fewer drugs or lower doses of them might be required if we changed our habits e.g. not sitting in front of a computer or TV all evening after dark. Unless the eyes are kept from bright light, the body has trouble making melatonin which aids in a restful night’s sleep. This is just one simple lifestyle suggestion to people out there that I have picked up from my health ‘guru’ who is actually a pharmacist and also a naturopath and who owns two health stores here and is a godsend to our community. If only the doctors were willing to put down their prescription pads and consider, emphasize and advise lifestyle changes…
All the best!
Robin

REPLY
@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 go girl! 🙂 I’d never thought of recording a visit. I’m sure some doctors would be horrified. We really need a printout of every thing that is written or recorded electronically as well to be on the safe side.

I think cut and paste has become standard along with incorrect or misspelled medicine names. On a followup visit, I discovered that one of my blood pressure meds was incorrectly listed in my chart. The aid who took my blood pressure and listed my meds was not listening and wrote down what she thought I said. Since she is not a nurse or doctor, she doesn’t know the drugs and had no idea what she had done. I shudder to think what other errors are made on a daily basis.

REPLY
@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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sidepockets – Thanks for the response. I don’t recall whether those specific tests were done or not. I will check on that. I did not have a biopsy of lip tissue, which someone else mentioned. I know the presence of my other autoimmune diseases – relapsing polychondritis, vasculitis and Crohn’s – complicates the issue. I thought when I got my intestinal bleeding and anemia under control that I would feel better, but it didn’t happen. I do get tired of dragging myself around, like a rag, as you say. It is also embarrassing, because I don’t look sick! I’m sure there are people, maybe even doctors, who think this is largely in my head.

Take care, and thanks again. I had given up hope of ever hearing from anyone!

REPLY
@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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sidepockets – I never associated my brain fog w/Sjogrens, but I knew it had to come from one of my illnesses. I find myself mispronouncing words or using the wrong words when I know the right ones. I have wondered about that and have often thought I might be becoming senile. I actually do better on the computer because I can see the errors. Even if I correct myself when I’m speaking I’m embarrassed.

REPLY
@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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dear marilly and sidepockets, so glad to hear from you. i have primary sjogrens with distal renal tubular acidosis, also arthritis not ra. i take evoxac for my mouth which made my tongue and mouth stop hurting.. unfortunally i have lost alot of my teeth due to very little saliva. the dentist recommended biotene for tooth paste, this was a great thing for me because i cant tolerate regular toothpaste. also evoxac really helps make saliva, at first i choked it was so much. one of my problems was people had trouble understanding when i spoke now so much better and i no longer choke o food. but i still drink alot of fluid. i use restasis 3 times aday for eyes and tears 4 times aday. my renal disease is caused by sjogrens. i didnt know i had renal disease because i guess my former dr didnt take my labs seriously. now i have to see nephrologist every 3 months. so please ask your dr for lab results. if i had been more pro active maybe i wouldnt have ended up in hospital for a week and was then told my true diagnosis. also now see rhematologist every 4 months. i really loved plaqeunal, it really helped my muscle and joint pain. but after 3 weeks i developed head to toe hives and n/v and kidneys tried to fall and in hospital 5days. tried methotrexate but got shingles 2 times ouch. now on sulfasalzene , waiting to see if helps joint pain. because of pain at night cant sleep which makes me forgetful.. i could not understand why my spelling is worse and then i read article about brain fog and that made me feel better, that i wasnt loosing my mind. i suspected for years that i had sjogrens but even wth positve ana the dr just blew it off. all this started when i was 42, now im 58. sorry for all typos im not a typer. some days i fill positive, somedays i feel down about this illness..im trying to take it 1 day at a time. i have supportive family and friends but i still feel like a complainer. i joined the sjogrems site and they sent some good info. they have a quarterly news letter also that drs who have this specialty participate in. they sent aiso info on groups you can go to . in my state they are 100 miles away. but i may contact any way. sorry so long winded, just nice to talk to someone who can understand. marilly i also have same problem and sometimes i see people look at me funny then i know i must of used wronge word or something not correct. but i remind myself to pay more attention and i smile alot and know this is kinda out of my control.. please write again. mima

REPLY
@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 – Do you have a link to the Sjogren’s site? I’d like to join and get the newsletter. I may increase my Restasis to 3 times daily. I see my eye doctor this month and will ask. To make matters worse, I have rosacea in my eyes. I had known about rosacea on my face, but no one had ever mentioned the eye problem. He plugged my tear ducts, which helped, and prescribed doxycycline. However, the combination of Imuran and doxy caused my liver enzymes to soar and I had to get off the doxycycline. If it’s not one thing…

Do you know which lab tests reveal kidney involvement and how often they should be repeated? I don’t think I’m on any schedule of lab work except at my hematologists. He monitors my anemia and I see him more often than anyone. My rheumy recently sent me for a nerve test because the numbness in my feet is getting worse and I’m having episodes of numbness in my hands as well. The neurologist, who was about 12, said everything looked OK, and I haven’t heard from my rheumy. I don’t know what to think. Everything is NOT OK!!

Thanks for posting, Mima. Your info is really helpful. Good luck.

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, I wrote an incredibly lengthy reply and I think it did not post to your response. I hit an incorrect key. Poof, I can’t retrieve it back. I will check to see if it shows on the blog tomorrow if not I will re post. If it does post it will have an incomplete ending.. Sorry about this. Just give me a day to see and I will let you know the details as this is important for you and your daughter. I appreciate your information and insight. It all comes down to knowledge is power. Will write tomorrow. Thank you sharing your info with me. Dee

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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, I am finally starting to realize that I am not the only person in the whole wide world with this weird disease and even stranger symptoms. I am so tired of feeling like an outcast regarding my health issues. Renal Tubular acidosis. I tried to tell one of my doctors that I thought that was what I had and she freaked out. When I was urinating, and even defecating,( I don’t like being graphic but if we don’t come out of hiding we will never be heard.) I had burning urine all the time and even when I would defecate. My blood work was showing odd signs of dehydration yet I was drinking all the time. My urine now has no color which is abnormal and another abnormality of which I forget. I have to pull my electronic records off my computer. But if I do that I may lose this post too. I just replied to someone, very lengthy and hit a wrong key and poof it is somewhere in cyberspace. My hands don’t work too great anymore or my mind. Wow, I cannot believe that we all have a form of the identical symptoms and yet so many of us were ignored. I hated going to these doctors, I searched and searched until I found, well I can’t say I found him a phlebotomist told me about him. She said to me, listen, if this guy can’t figure it out, no one can. She was right. We even have to network our health. Mima, I can give you words of advice when you feel down, think about us on this site, chances are we are feeling down too. We are all struggling with this bizarre disease everyday and boy, is it a struggle. People can support each other from a distance. Believe me, I am not one to post or blog however, this is our plight. Our right to be heard and believed. Question, were you taking the brand name Plaquenil or the lovely generic. I ended up calling Sanofi the drug maker which I would never do to thank them for the quality of their product. I hope I can post that. It seems to cause very few side effects and I get side effects from everything. The Plaquenil was a miracle for about 6 or 8 weeks and symptoms starting popping through again. I was to take the cocktail of Metho, Plaquenil and Prednison (steroids). Forget the Metho, at least for me. Started itching, swelling in strange places and feeling just awful. This was my second try at the Metho. Mima, you need to vent. Stop trying to suck it up. Women are always told to suck it up. We need to be heard and understood. We have to talk about this and the medical profession needs to listen. I write too much. They are probably cutting me off. We all have a lot say and we are here to listen. Write often, this is therapy for all. Hugs, Dee

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