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Would like to hear from people with Sjogrens
Autoimmune Diseases | Last Active: Nov 14, 2023 | Replies (76)Comment receiving replies
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
Replies to "Hi Meredith, I have the identical symptoms that you have. My problems began at 30 with..."
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.
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
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
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
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........
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,
Connect
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.