Hello everyone! This is my first post. I'm a 38 year old housewife. I have had strange little flare ups with mild symptoms for going on 15 years. On an everyday basis I have mildly dry eyes and IBS. About 1.5 hrs ago I had a flare where my most disabling symptom was dizziness and aches. I could not sleep for days and my appetite dropped. The dizziness lasted four months. My eyes and mouth were slightly drier during this period. My flare happened right after a viral illness.
I had lots of blood work to check for AI diseases and had an expensive full brain and spinal MRI. Nothing revealed itself. I knew that I had an autoimmune condition, but could not prove it to anyone.
Life went back to normal, raising my kids, playing tennis, etc. with minor occasional increases in my dry eyes or mouth. I used drops mostly at night for my eyes with ointment.
A few weeks ago I got the stomach virus going around town. After a few days of those "troubles" I had a strange attack. My whole colon felt as if it was on fire and was bloated. This has gotten much better, and i was going to schedule an appt with my GP. I really didn't think much of it until the
attack slowly turned to my eyes, nose, and mouth a few days ago. My eyes were getting a little drier over the course of the past few weeks. On Wednesday, I had temporary collagen plugs put in my eyes. It felt great for about 20 minutes or so. Then by the time I got home my eyes were drier
than ever, burning...then my nose and mouth. I cannot go more than a few minutes without eye drops. I have to wear the night time ointment all day long. My eyes are now pink from irritation. I have not slept in about three days. I have had chills and muscle aches and a headache. I am so miserable.
Last night I went to the ER, knowing from my symptoms that I was having an autoimmune reaction, and I was so miserable. Basically, the ER doctor didn't know what to make of me. He asked me about my symptoms, what I thought was wrong with me, and what he wanted me to do. Being and educated individual that I am, I explained my symptoms, and told him that I think I am having a Sjogrens flare and that I wanted a course of steroids. He said, okay. I took the first dose of prednisone, 20 mg daily, this morning, but it seems that nothing has gotten any better yet. I made an appointment with my GP for Monday afternoon.
My skin is burning all over. Things have actually gotten worse today rather than better. I feel like I am ready to die. I am using all of the dry mouth products. I'm drinking tons of water, using warm compresses on my eyes and tons of various drops. I'm not sleeping, even though I took Ambien last night. I am hardly eating due to no appetite.
Just a few weeks ago I was perfectly normal and happy and active. My husband and I were trying
to plan our third baby. Now, knowing about this, my dream is gone. I know I could not handle having another baby dealing with this condition and care for them properly.
I am already planning in my head how I will end my life when things get too unbearable. I feel guilty and selfish for having children that could possibly have autoimmune diseases like this one in the future. I'm trying to tell myself to take this one day at a time, but when I can't even take care of my children today because of my illness, I am consumed by anxiety and grief. As you can see, I am not in a good place right now. Am I going to get through this? How can I get through this? Thank you so much my new friends. I have nowhere to turn.
It is truly awful when the 'Sjogrens blanket' decides to wrap itself around us and you cant see a way out, you hurt, you feel sick, you feel ill, you are in pain and it is like having a hostile lodger in your body that you cannot evict.
Couple this with the stress that comes with having a flare and it becomes a vicious circle - anxiety+flare=flare+anxiety.
The more it brings you down mentally, the less equipped you are to deal with it emotionally and the lower you will go to the point of depression.
Now you WILL get through it, but I think you need help and quickly. When you see your GP on Monday you tell him what you have told us, that mentally you are struggling - I have heard that depression and Sjogrens are 'best buddies' so if you can gain some strength and recovery mentally, you will be able to concentrate on your physical recovery.
But I beg you, please tell your GP you are not coping well mentally because once you get your mind in a good place - you can move forward, with your mind being the 'engine' of your body so to speak, you will struggle if it isnt functioning as well as it should be.
Flares don't last forever, although it can seem that way - do you have a Rheumy? If not, is there any way you can find one on recommendation? My tests come back weak positive so I have been diagnosed as sero negative and lucky enough to be on treatment.
Take your husband with you to the doctors because quite often having a support person there with you gets you taken a bit more seriously, I am taking mine to my appointment with the Rheumy next week.
Ask your GP to do the following:
1. Refer you to a Rheumy (if he hasnt done so) and get one on recommendation
2. Refer you to an eye specialist (if he hasnt done so) - it was my eye specialist that got me diagnosed as I have zero tests If you have an eye specialist, get him to write a letter with what he thinks is wrong with your eyes - as in Sjogrens.
3. Go to the dentist and get him to check your mouth out - my dentist played a huge part in my diagnosis.
Arm yourself with back up to take to the Rheumy so you can get your diagnosis/treatment.
Please dont think about ending your life, illness and pain that goes with this is so very hard but you are loved and things will get better for you with the right treatment.
And you are not alone and you have us to turn to - remember that.
Hi Ark Mom, yes you DO have somewhere to turn. It's called Sjogrens World and it's a very active place with many Sjogrens patients, some diagnosed, some not diagnosed, others with Sjogrens and other autoimmune diseases. Young women, older women, one 14 year I saw today. We have all gone through similar feelings you are talking about. We may not be worried about having a third child, but I can tell you more than one of our current posters is pregnant.
I don't know if you have Sjogrens or not. Only your doctors will be able to tell you that, and maybe not even them. Sometimes it takes years to show positive antibodies in your blood. When you see your GP see if he will treat the symptoms until you get more data on your condition. In the meantime, you need to keep your eyes moist. Use artificial tears without preservatives. TheraTears and Refresh (many varieties) are both good basic ones to try. You need to try more than one to see which works best for you. Also, if you can wear glasses both indoors and out. The barrier goes a long way to keeping drafts, heating vents and wind directly out of your eyes. Warm compresses are always good, but cool ones also soothe the eyes.
I hope the dr was very specific in the prednisone prescription. Hoping this will help you through this flare (if that's what it is). Ask your doctor for a referral to a rheumatologist. A teaching hospital is a good place to start if you are close to one. I was dx by one and it was 100 miles away and it was worth it. Many others here have used university hospitals. Try chewing sugarless gum in addition to your mouth products until you figure things out. You are always welcome here and will have lots of friends. On the weekend, it is a little slower than normal. I am up late and read your post and wanted to say hi and as "Joe" (one of us) would say, "breathe." Try and relax in the meantime. Sjogrens will not kill you although you might feel like it at times. I suspect the ER doc didn't know very much about Sjogrens, probably just what you told him. Some GP's are better than others in their knowledge. Remember, this goes one day at a time. Get as much rest as you can and ask others in the family if they can lend a hand until you feel better. Lucy
ArkMom, You may be experiencing multiple AI diseases. Sjogren's could be part of it. Here is my Sjogren's welcome.
While I am glad that you found us, I do not like it than anyone else should have to deal with this health challenge. I am more frustrated when I see younger people with this illness understanding that there is so little that is being done to help us. I believe that the medical model for Auto Immune disease is wrong. I use alternative therapy because of bad reactions to Plaq and MTX.
Sjogren's – Dry eyes, dry sinuses, dry mouth, dry skin, and dry bum.
You may or may not be faced with other health challenges related to this disease that the doctors do not tell you about. Auto Immune (AI) diseases love to bring their friends. If you have one, eventually you will have more than one.
I like also suggest that people with AI diseases read "Spoon Theory" on the web. It helps to explain how our lives have changed and helps us understand how we can manage the changes to our lives.
http://butyoudontlooksick.com/navigation/BYDLS-TheSpoonTheory.pdf
1. Don't Panic – Anxiety can make your symptoms worse. I suggest that you read and practice the exercises in the book "Feeling Good" by David Burns. The book is on Cognitive Behavior Therapy (CBT). It has information on dealing with depression, grief and other mental health issues that you may face in living and managing this disease.
2. Breathe – For as long as you live always remember to breath. When we are in pain, our muscles go into a splinting action. I know that it is hard but we must remember to breathe through the pain.
3. Meditate – Meditation can help you deal with pain and symptoms. When you can do it for 15 minutes you will be at that stage. Here is a very easy meditation technique that will help you as it has helped me. Find a safe comfortable position and close your eyes. With your eyes closed, look to the top of your forehead. As you breathe in, think "I am" as you breathe out, think "calm". Repeat as needed. Meditation can be as good as sleep.
With Sjogren's we tend to have a lot of infections so wear your "polar fleece mumps scarf" to bed. This will help your body to fight these infections. This link will help with the gland issues: http://www.chakraforce.com/Tonations.html#228.
Omega3, D3, C, Multivitamin, Probiotics seem to provide general support to our bodies when we are facing AI diseases. I like to add an 8oz glass of carrot juice every day to help my body generate endorphins.
I take what I call the Fabulous Five supplements and I wish I had known about them when I got my first AI disease. They are Alpha or R Lipoic Acid, Acetyl-L-Carnitine, Biotin, PQQ, and Co-Q10. As with any drug or supplement, do your own research and consult with your healthcare professional.
Sip-Swish-Swallow are the three S's of Sjogrens.
You will get through this, once you see a rheumatologist who can help you. I know how frustrating it can be I had many symptoms and was sick of going to doctors before I finally found out what was wrong, now I know its much easier to deal with it than not knowing.
I like you had plans of a third child and tried for a while but then I started with symptoms and got diagnosed. I spoke to a rheumatologist about this and she said that even though I have the antibodies for sjogrens it would be only a very small risk, and my own g.p doesn't see a problem in having another baby. Also there has been people pregnant on here. For me I think its more anxiety than sjogrens that holds me back but my 2 children are getting older now and I have decided to focus on them than starting again, but its very much a personal choice.
I hope you get some answers and relief.
Leanne
Sleep! I'm another of the Sjögren's World people who is up tonight, and just saw your post. Welcome to the Forum. I'm glad you found us, and sad about the dire straits that led you to us.
I'm getting pretty familiar with Prednisone, in the last six months. It does knock down flares in some ways. It will ease the muscle and joint pain and weakness and general overall discomfort. It seems to return me to functioning as before-flare in five days, plus or minus two. It has some effect on rashes, also.
It does not do anything, in my experience, for dry eye and dry mouth and dry nose and dry butt (constipation). At higher doses, Prednisone keeps me awake. I just get more done that way, like answering this post, so I love it for that! It lifts a TON of mental fog, which improves my mood. Yeah, and it brings the clarity of thought that has me wondering about whether my daughter will develop an autoimmune disease -- or already has one incubating. And I felt so guilty as that realization dawned. Since then I am stepping back. I can't run her life in terms of the Sjögren's I *may* have given her -- assuming it's a sex-linked genetic transmission. The bad genes come with the good, and she has some terrific genes too, even has some of the terrific genes from ME.
For dry eyes and dry mouth, your PCP can probably get you started.
For dry eye s/he needs to prescribe Restasis -- use the search function here to look up the clues to having a good immediate experience with Restasis, and look at the recent discussions first. Dry eye is a common effect of many causes; dry eye and dry mouth can be diagnosed separately as Sicca Syndrome, without the blood work to diagnose Sjögren's as an autoimmune disease.
For dry mouth, there are two prescription products. The older and cheaper one is pilocarpine (Salagen), now in generic form. I tested as producing one drop of saliva in 5 minutes of a standardised testing procedure. The oral surgeon doing the testing had to run after the lab tech who was taking away the vial with the one drop in order to dispose of it/wash it/whatever. The oral surgeon ran after the tech to say "No, no, that's a sample, that one drop is *the sample.* So my mouth was pretty dry. I had to ask the rheumatologist to prescribe Salagen; he didn't offer. I'm glad I did, because it has made a huge difference in saliva production, and adds to the moistened eyes (during the day) from Restasis. You will probably still feel that your eyes are dry at night; there's no tear production when your eyes are closed, so my ophthalmologists just informed me.
So it takes more than Prednisone to manage Sicca Syndrome/Sjögren's Syndrome.
I have put my dreams on hold to manage this disease. My time frame for learning to manage is flexible, but it's there.
Treasure you GP/PCP as the person who can help you maintain good overall health, which will minimize the effects of flares. This would include an anti-inflammatory diet, and gentle exercise as tolerated or as taught in physical therapy.
You are tough and organized. You will do fine! I'm not promising you will BE fine all the time, but you will DO fine at managing your Sjögren's -- SjS as we sometimes write it.
Much success,
Soycoffee
Thank you everyone. I am so grateful from the bottom of my heart. My husband, who does not know how to deal with things like this has shunned me. He is irritable and short-fused. I try to ignore his behavior because I know he doesn't know how to deal with the fact that I am sick, and all of a sudden he is thrust into the job as weekend care-taker to our 4 yr old and 2 year old.
Around 1 am, I was getting so very bad. I couldn't stop shivering and burning and aching all over. I took my second prednisone dose 3 hours early because every time I would try to fall asleep my body would jerk awake. (It is so strange. No matter how tired I am from not sleeping for days, I would always jerk awake. ). Within an hour I was feeling better, well enough to actually sleep for 4 hours.
I'm concerned that since I started to have lots of activity late in the day makes me wonder how long the drug is effective throughout the day. I have not checked on the half-life of the drug.
@soy coffee, as much as I want to treasure my GP, I feel like he has let me down. When I had my last bad flare in the fall of 2010, he felt sorry for me, but reassured me that because my ANA panel was normal, CRP negative, MRI negative, etc., that I was in the clear was autoimmune diseases. Since I have Generalized Anxiety Disorder, everyone told me that everything was probably just anxiety related. Because my symptoms went away I dropped the issue instead of digging for more.
I appreciate your support and will ask him to get me started on the Restasis for sure. I had a tear test done over a year ago, and the opthamologist mentioned I might try it. He said my eyes weren't too dry at the time, never mentioning Sjogrens.
This time when I see him, since my symptoms are not mild, more defined this time around, I am certain he will listen to me and refer me to a rheumatologist.
Thank you all so much. I will check back later.
Hi Ark Mom, everyone has given you such great advice so I only wanted to add that I too am a young mom (32) and my children are the same age as yours (4 and 2) so I know how difficult it is to raise young children with a chronic illness.
I also have pretty bad anxiety (you can see my meds below - I take clonazepam twice a day and Zoloft once a day to control it and depression) and I can't imagine anyone trying to tell me my SjS symptoms were caused by anxiety. Why do drs always fall back on anxiety when patients blood work is normal? I can understand chest pain, racing heart, sweating, etc. but not what you're experiencing.
In addition to finding a good rheumatologist, and possibly gastroenterologist, I really recommend seeing a good psychiatrist. Less than a year ago, right after my diagnosis, I was so depressed I couldn't get out of bed and my mom had to come help me take care of my kids when my husband had to go back to work. I saw a psychiatrist fairly quickly, got on the right meds, and things started getting better quickly (clonazepam is a fast acting but short-lived anti-anxiety med). Having a chronic illness changes our lives, but doesn't end them - we can find the right meds and techniques to deal with our symptoms and problems and still have a good life.
Hang in there and please keep us posted.
Hi Arkmom!
I am 35 and currently pregnant with our second child. Right now I am in a flare but with a bit more rest it seems to be getting better. I am anything but a typical SJS patient. My issues are fatigue and severe joint pain. I had issues off and on for years but when I got diagnosed it did happen quickly due to everything for me was positive. I also dont really have any dryness syptoms (although I think that might be changing). Once I sarted treatment my jointpain, brain fog and fatigue got better and I am funtional. I also take zoloft for anxiety/depression and right now I am off of it per my OB but I will be starting it back here in about a month so when baby boy gets here Im not hormonal and anxiety crazy.
My husband is also a no-help.....he thinks I am just lazy etc. it makes me so angry, I wish he had the fatigue and jointpain like I have for just one day.....but then again, it wouldn't matter because I would take care of our 2 1/2 year old, where as he doesnt really help me .......
You can always vent to us, we do get it!
just remember that you life will change some but your life wont be on hold either. once you get things under control your docs will say that there is no problems with having another child. I can say for me that Im in my 3rd trimester and up until a week ago or so I have been feeling great. You will have a flare after having a baby but my docs are aware of it and we are working on a treatment plan to start before I deliver to lessen the flare or forgo it altogether.
Take care-hootyhu
@mshistory, I have not taken any medication for anxiety for over five years because I was in my breeding period. I nursed both of my children for over 1.5 years each. Then, I was getting ready to have another baby. So, medication use over the past few years has been none. My father, also a doctor, as well as everyone else in my family tried to discredit me by trying to convince me that it was all anxiety related. My husband was particularly cruel and accused me of having Munchausen Syndrome or hypochondria. When I voiced my concerns to my mom about needing help with my daughters (my last flare lasted four months), she replied, "I am NOT spending my retirement taking care of you." She is a very kind and generous person, but alos very self-involved in her retirement activities. I had to beg her to come stay with us for 4 days when my youngest was born. Now, that things are happening again, I am terrified to reach out to anyone in my family.
I used to take Cymbalta and had good luck with it, but I am afraid to add too many medications all at once and add anything that will contribute to dryness. I cried when I read your post "still have a good life". That is what I am so afraid of, not for me exactly, but for my children. With me being sick in my living room chair, I am not a good mom. My kids have watched more TV in the past four days
than in a whole month. I used to be a really mom, a healthy mom, a joyful, energetic mom.
Thank you so much for your support.
Thank you, Hootyhu, yes I do remember having a flare after my last baby for sure. I am so happy to hear that you are having a successful pregnancy. It is encouraging. OMG, I have heard "lazy" from my husband ever since I married him. We have been in therapy together for a little while due to some problems. Thank god he has good insurance! Right now, life isn't about having a good marriage; I am in survival mode. He is a good dad and provider. I know he won't leave me stranded.
I got online and made an appointment with a new dentist. Now that this is happening I started evaluating my teeth. I have one implant, and there is some gum tenderness at the implant site. I better get that taken care of soon.
QuoteI cried when I read your post "still have a good life". That is what I am so afraid of, not for me exactly, but for my children. With me being sick in my living room chair, I am not a good mom. My kids have watched more TV in the past four days
than in a whole month. I used to be a really mom, a healthy mom, a joyful, energetic mom.
I know - I've had those exact same thoughts. I'm not the mom I used to be, and sometimes it breaks my heart that I have to go lay down every evening after dinner because I'm just so exhausted. I just don't have the energy to be the mom I used to be who could play with her kids and take them places all the time. But I'm still their mom, and they love me unconditionally. In fact, they couldn't possibly be more attached to me unless they were still literally attached to me :) We have to learn to forgive ourselves for not being who we used to be - that can be the hardest part of chronic illness. We moms deal with SO much guilt even when we're perfectly healthy because it's just part of being a mom - we expect perfection of ourselves and we will always fall short.
Just remember that your kids love YOU regardless if you have the energy to play for hours in the backyard or if all you can do is cuddle up on the couch and watch
Tangled for the umpteenth time. All they need is your love and attention, and in whatever form you can offer that to them, they will be just fine.
You're in my thoughts and prayers.
Is there any chance you could have Lyme disease? Have you been in the wilds? Do you have pets that could have picked up ticks? You could have chronic Lyme. It sounds a lot like my husband's course of things. Think back to what you did before your first "attack,"
Look for a Lyme expert in your area; if you have to travel, then do it.
Also, look up the "Spoons theory" and "fatigue" and show it to your husband.
Hugs, Sharon
Welcome, but I am so sorry you had to seek us out. I wish I had the perfect words to make you feel better about your situation. Just know that there are many here who are ready to help and support you. It truly makes a difference to have people to share and commiserate with.
It can take months/years of having symptoms before anything shows up in blood work and for many it never does. :( Don't be afraid to change GP's if you feel you are not being taken seriously. I went to a dr. at age 39 for a 2nd opinion after a low positive ANA (at my husband's request) and a bout of debilitating joint & muscle pain. He told me, "You know you're a woman & you're getting older. You're not going to need to go to the dr. to get every ache & pain checked out." I went on to find a rheumatologist who treated me symptomatically until I showed a positive anti-ssb. It can take awhile but some of the meds do help, if this is what you end up having.
I do feel for you. My boys were 6 & 8 when things started spinning out of control for me. I understand the guilt, helplessness & exhaustion and I wasn't dealing with toddlers! It will get easier, especially as they get older and no matter how you feel or how much you can or cannot do, they need their mommy. Please talk with your doctor about how you are feeling. Your family cannot crawl into your skin and know what you are truly going through. There is no shame in taking something to help with the very real symptoms and feelings you are experiencing.
Quote from: slccom on February 26, 2012, 09:56:08 AM
Is there any chance you could have Lyme disease? Have you been in the wilds? Do you have pets that could have picked up ticks? You could have chronic Lyme.
Thank you for this suggestion, and of course as many of us are seeking answers to unknown ailments, I considered it; however I live in Arkansas, an area that isn't endemic to Lyme's. If I lived in New York then I would be banging on the lab's door for that one. I have been bitten by ticks a lot in my life, but didn't give it any thought due to my location.
thanks GeorgiaGirl for your insights as well. I feel like the only mom going through this, like everyone in my street/neighborhood/town is fine and healthy except me. this time I am demanding to see a rheumatologist when I see my GP tomorrow. Wow, how is it that husbands can be so insensitive? Mine just doesn't know how to deal with fear and pain I think.
Ark Mom, welcome to the board, but I am so sorry for all you are having to go through. Many of us have to see a psychiatrist for meds to help with depression, anxiety or both. Looking back I do think the autoimmune diseases probably brought on the clinical depression for me.
I also understand about wanting to be understood by Dr.'s that haven't picked up on this yet, and the husband thing. My current husband is wonderful, and has his own issues with health. We try to help each other, but my ex-husband was the same as you said. He never even got sick so couldn't understand, and not able to do something equaled lazy.
Please hang in there, and come back as often as you need to, but never give up, there is always a new day, and with it a better day ahead for you. Believe me, I know for a fact this is true.
susanep :)
Quote from: Ark mom on February 25, 2012, 07:09:35 PM
Hello everyone! This is my first post.
. . .
My skin is burning all over. Things have actually gotten worse today rather than better. I feel like I am ready to die. I am using all of the dry mouth products. I'm drinking tons of water, using warm compresses on my eyes and tons of various drops. I'm not sleeping, even though I took Ambien last night. I am hardly eating due to no appetite.
The burning skin -- is it in the areas exposed to light, any light? Then it may be due to UVB (and some UVA) rays from fluorescent lights for someone who works or shops or goes anywhere commercial.
BUT it may also be due to Compact Fluorescent Lightbulbs (CFL bulbs). These are the energy efficient bulbs that I used to replace every light bulb in my apartment!
I got a fairly severe facial sunburn from a high intensity CFL bulb used in a reading lamp. I was testing the bulb again, and got a burn on my shoulder, where the light fell most intensely, that day. My burns are the type that shows up in skin reddening. Apparently the one on my back, which was quite painful, but small in area, didn't appear red to my rheumatologist; he didn't comment. It *did* burn like heck.
This, I believe, is an undocumented feature of Sjögren's, that also can occur in Lupus, and has been tracked to the SS-A (Ro) Antibody, I believe.
I consulted two rheumatologists about this, one by phone. They did not seem to think it was part of the picture of Sjögren's, and didn't mention Lupus.
The UVB rays can penetrate light clothing, so it doesn't have to be "sunburn" (i.e. UV burn) only on exposed areas.
If I've sold you on that being what it is, what do you do about it.
1. Sunscreen indoors and outdoors at all times.
2. Cover up with clothing, hats, floppy slouch hats -- indoors in a flare, and outdoors all the time. Hoodies are good.
3. I used A+D ointment to ease the pain somewhat -- it's mostly vaseline, so you could use that if you have it on hand.
4. For repair of the burned skin I'm using, at various times, Shea Oil, Vitamin E Oil, and/or Almond Oil. The almond oil is the easiest and quickest to use, with kids around, because you can wash your hands, use a few drops, and it sinks in, right away. You can also put Vitamin E oil on your face without worrying about it not sinking in right away.
I'm sure others have some further suggestions for care. The burning does seem to be connected with minor and major flares, as the reports on this forum tell. I don't know what the best search term is, though.
I'll just list a few to put them in this post -- sunburn, sun burn, CFL bulbs, fluorescent light, photosensitive or photosensitivity, light sensitive.
If this does not seem to be diagnostic of your problem, and it continues, please post some more and someone else will recognize the specific features of your burning.
There are solutions, if not cures,
Soycoffee
An aside. Do you also have an itchy scalp with this flare? I've had one for several years and mine went away when I started covering my head.
Soy coffee, I appreciate your detailed information regarding the burns. Very interesting, indeed! Thank you!
Actually, the prednisone has really kicked in. Everything has stopped burning. Chills are gone and aches are almost gone. My eyes are still dry and irritated but not as badly. My mouth feels much better and is less dry and not burning. I put on wrap around sunglasses to protect my eyes and went out into the backyard to play with the girls, basically the first time I have been off the couch since I went to the ER. I was afraid to go outside in the wind, but the sunglasses really helped. Even though I am still sick feeling I can't believe that a few hours ago I felt like I was dying.
Thank you to everyone who, as complete strangers, took the time and energy to write and help me. I will update tomorrow after my appointment with my GP. Hugs to everyone!
So glad that you are feeling better! It's nice to be able to get outside and enjoy the little ones. I hope that your appointment goes well tomorrow.
I reread my earlier post :o ... it was the dr. that made the insensitive comment about me being a female getting older, not my husband. Great bedside manner that guy has. ::)
On the husband topic, there have definitely been stages where mine didn't understand. We've had some major blow-ups that have stemmed from my inability to do everything I used to do. I think you are right that fear plays a huge part & also, I bet it's hard being the spouse looking on when there is no quick fix for all that's going on. One thing that did help him understand was when I gave him pages & pages of blogs & forum posts from other people with similar symptoms and feelings. I know that he did not understand that I actually mourned the loss of things I used to be able to do ... and the complete frustration of the fatigue that can come out of nowhere.
Quote from: Ark mom on February 26, 2012, 05:35:36 PM
Soy coffee, I appreciate your detailed information regarding the burns. Very interesting, indeed! Thank you!
Actually, the prednisone has really kicked in. Everything has stopped burning. Chills are gone and aches are almost gone. My eyes are still dry and irritated but not as badly. My mouth feels much better and is less dry and not burning. I put on wrap around sunglasses to protect my eyes and went out into the backyard to play with the girls, basically the first time I have been off the couch since I went to the ER. I was afraid to go outside in the wind, but the sunglasses really helped. Even though I am still sick feeling I can't believe that a few hours ago I felt like I was dying.
Thank you to everyone who, as complete strangers, took the time and energy to write and help me. I will update tomorrow after my appointment with my GP. Hugs to everyone!
Thanks for taking the time to reply, especially when you are feeling better -- hooray!
I'm glad the Prednisone worked -- as it should. There is a downside to it, but the way it turns everything around in quick order is simply marvelous.
I am in awe of your ability to convince an ER doctor to give you 20 mg/day -- perhaps that's the upside of having doctor(s) in the house and family. I can't convince my rheumy to give me more than 6 mg /day, so I add supplements.
Hope your day with the GP works out well, and you get the rheumatology referral. Let us know.
Wishing you much success,
Soycoffee
Morning!
Being stuck in a bad flare is awful. I had a virus last April which brought on a severe onset: everything just shut off. I functioned pretty normally before that, and pouf! No saliva, no tears, my eyes were swollen, I had thrush everywhere because I had almost no saliva, my nose wouldn't run... on and on. Actually it was my eye doctor who got me relief: my GP had hoped for a plugged salivary duct because most people believe the virus was the main cause. It was sort of just the trigger.
I decided to see my regular eye dr because of the dry eyes. She referred me to a specialist who gave me steroid eye drops (dexamethazone) and Restasis. Well they fixed up like nothing in less than 10 days. He sent me to a rheumy who got me started on Salagen which took until October to work quite well (I went in June, but I was a severe case of dry mouth so you may be different). I got Plaquinel along the way.
Honestly, once you have meds, you can learn to cope and function and live.
I have 4 kids: 2, 4 (almost 5), 7 and 9. I am really busy and although I am not the most energetic Mom, we go places now and I run them to and from school etc. I am LUCKY though in that I don't have joint pain. or pain of any kind.
Anyway. There is light at the end of the tunnel but you have to keep moving through it and ask your dr for meds to help. Even if you don't have Sjogren's (my bloodwork shows nothing) you need symptomatic treatment and relief.
And yes, my husband had a time with it as well. He has learned as well as I have, has started to account for me when I am in a tired mode, and he was not an understand individual prior in this way. (he is a good person, just a spoiled person and not used to having to carry his weight.) He has learned, for the most part now!
Good luck.
Good morning all.
I got into my eye doctor today, one who sees SS patients. His nurse was awful with the Schirmer test. She got about 15 from both eyes. I have red irritated spots on my eyes where they rubbed and irritated. When he came in, he saw me sipping water and said, "That isn't a good sign when I see people drinking water.".
Wow, just, wow... thanks for that, buddy.
Anyway, we talked about everything that has happened. He asked to redo the Schirmer test, and this time I was to close my eyes. This time they were 17 and 18 mm. He said he didn't believe that those were my basal tears, that he thought I was having reflex tearing of the lacrimal gland. So, he told me to go see a rheumotologist and gave me a steroid eye drop and restasis.
In a short while I will be off to my GP for that lovely portion of my day. This is how I am spending my 39th birthday today. LOL. More updates later.
Thanks for the update. You know, as long as they make the right call (Restasis), it doesn't matter what they say. In commenting on your sipping water, perhaps he was noticing a small detail that suggested Sicca Syndrome (dry eye, dry mouth), and went with his clinical judgment and your report, rather than the Schirmer test. That's not a bad thing -- except you don't have a Schirmer test below 5, to take home to the doctors in your family. Ah, bummer!
The other immediate relief product, that you might get from your GP, is Salagen (pilocarpine) -- or perhaps Evoxac, which is more recent and more costly. These medicines greatly improve salivary flow.
It's interesting that there is approximately a fifty percent reserve of tears and saliva, even when they are not being produced to meet the need. For this, see The Sjogren's Book, edited by Wallace, 2012 edition -- and/or search for the reference quote I posted here. It might be of interest to the doctors in the family, though perhaps it would take some cleverness to introduce it. Or direct them to call one of the heads of the Sjogrens Syndrome Centers -- in San Francisco, in Philadelphia, or at Johns Hopkins.
I hope this afternoon's appointment goes better than you anticipate, whatever that may be, and that you get relief and direction for the next steps.
All the best,
Soycoffee
Had a pelvic US today to look for a possible explanation for lower left quadrant pain. The radiologist said he didn't see anything obvious, but would take a second closer look.
I am almost off the steroids. Last night I couldn't sleep again and had night sweats that bothered me. I can feel that my flare is easing up somewhat, and by using the steroid eye drops has helped with the burning and pain in my eyes to a point where I can go an hour or more without drops.
I started Restasis yesterday without any problems at all other than faint temporary blurring.
I haven't heard anything about my current round of blood tests yet.
My appetite is coming back, which is a good sign that my flare is winding down. The chills are gone but a low fever remains. I don't have my energy back, but today was the best day I have had in a week. I usually don't have flares that last longer than a few weeks. I have only have three major flares that have made me bedridden in 15 years, the rest have been minor.
I'm worried that my blood work will not reveal the typical immunological markers for the disease and will have a hard time getting disease altering treatment.
Got my labs back today, and although I won't get the exact data until tomorrow when I go to get copies, the evaluation is complete. All labs came back normal. ESR was 10 (ref 0-20; the only value i have so far on line). How can I have an ESR of 10 while going through the worst flare of my life? I know I have had this disease for over 15 years. I don't get it. Now, I'm sure
my GP will think I am a joke again. I realize that my body can be making atypical autoantibodies than the ones the lab tests for but what about the ESR? Any ideas? My GP will not refer me to a rheumatologist, but my opthamalogist said thy he would do it.
Please print what you have wrote to us, take it with you to the doctor on Monday. Let him read it and help you. I have only recently been diagnosed with Sjogrens but have been dealing with it for over 25 years. You need to know what your demon is and then you can tackle it. I understand how hard it is to fight something without a name. BUT - once you do, you will find you ARE strong and can still have the best years of your life to enjoy. It may be a bit different that you thought but still absolutely worth enjoying!
Gayle
One thought I had was the original illness - did you take an antibiotic? I have henious reactions to drugs like Bactrim and Ceflex!
It was my eye doctor who referred me to the rheumy. My GP had persisted that I was suffering from a blockage, not Sjs. Although my blood work shows a healthy woman, the rheumy treated me for symptoms and is a wonderful doctor who takes me seriously. I tell you those eye doctors are worth their weight in gold.
In my case, by the time my blood work showed my other problem (hormone imbalance due to PCOS), I was very, very ill. So I guess I get sick first and then my blood changes in response. And there is a teensy part of me that hopes that the virus triggered an auto immune response which is going to be fully repaired and stay that way. A girl can hope, can't she? ;)
Quote from: 4Kids on March 02, 2012, 05:41:26 AM
It was my eye doctor who referred me to the rheumy. My GP had persisted that I was suffering from a blockage, not Sjs. Although my blood work shows a healthy woman, the rheumy treated me for symptoms and is a wonderful doctor who takes me seriously.
The nurse called me today to tell me all of my bloodwork was normal. I guess I will rely on the opthamalogist's referral. Thank you!
Quote from: artsyamerican on March 01, 2012, 06:29:13 PM
One thought I had was the original illness - did you take an antibiotic? I have henious reactions to drugs like Bactrim and Ceflex!
No, I didn't take anything because I had the same viral illness that everyone in my family just had. No one else got as sick as I did! :)
Thanks, Gayle, and everyone else for your comments. I am running into a brick wall, but won't qive up.