Hi, my name is Deb and I'm 46 years old.I have suffered with high blood pressure, migraines and underactive thyroid for years.... then a couple of months ago my ankles started to hurt really bad,i couldn't put shoes on because of the swelling, then came fevers, then eyesight wasn't right, lost my balance, muscle and joint pain, then my voice went and I had a dry cought,friends said I had hayfever.I just about had every symptom going and with a foggy brain didn't know how to start trying to explain to my doctor what was wrong with me,i thought they were going to say its all in my head.Then when I plucked up the courage to go, another series of weird things were happening to my body... dry gritty burning eyes, dry mouth, dry nose and dry ears!! Ive got every pain type you can think of all going on at once, my doctor noted my father is diabetic ,my mother had arthritis and I of course already had interactive thyroid(had for 17yrs)she listened to me and I was amazed..the blood tests were back in under ten hours,i went back to doctor and was told my Ana and ema blood tests were strong positive 1:1280 titre and ro positive.I'm seeing specialist tomorrow, but was ill a couple of days ago and hospital already told me its lupus and sjrogens ,as I say I'm seeing specialist tomorrow and I'm so confused and scared,i feel like a little girl, lost without her mother.That's my story and I've turned to you lot for help xxx
Many of us have has hypothyroidism and migraine headaches. I don't know how it relates to Sjorgren's syndrome but it seem to have some connection. For me correct treatment took time to find, i.e. right doctor, and then took time for my body to respond to the treatment. I still have flare-ups and I will never be like I was but I function much better than three years ago. For me, I have learned to change my life-style and work within the limits my body gives me. Nevertheless life can be good again.
Hang in there. We are here for you. This is a safe place to vent your feelings and you are among people who really understand. It is difficult for many people to understand what is happening to you. Many people have said to me, "Well, you look good. You must be feeling better." I am thinking, "I'm glad I don't look as bad as I feel because I feel horrible." But I know that can't understand so I smile and go on.
Please let us know what is happening with your treatment and good luck. God Bless.
hi there. im new too. 48 years old and just diagnosed 2 weeks ago. I had no postive blood tests at all but diagnosed with lip biopsy. I guess my doc is sending me to JOhns Hopkins. they have a speial Sjogrens clinic there. If there is anything in can do to support you just ask!!
:))amy
Thank you, so kind, this is such a great place to find support and info x
Hi, yes there does seem to be alot of migraine sufferers and hypothyroidism, with immune diseases.Glad to hear your treatment helps somewhat and thank you for your story x
Snowflake said:
Many of us have has hypothyroidism and migraine headaches. I don't know how it relates to Sjorgren's syndrome but it seem to have some connection. For me correct treatment took time to find, i.e. right doctor, and then took time for my body to respond to the treatment. I still have flare-ups and I will never be like I was but I function much better than three years ago. For me, I have learned to change my life-style and work within the limits my body gives me. Nevertheless life can be good again.
Hang in there. We are here for you. This is a safe place to vent your feelings and you are among people who really understand. It is difficult for many people to understand what is happening to you. Many people have said to me, "Well, you look good. You must be feeling better." I am thinking, "I'm glad I don't look as bad as I feel because I feel horrible." But I know that can't understand so I smile and go on.
Please let us know what is happening with your treatment and good luck. God Bless.
Welcome. This sight will help you with everything--I mean it, everything for this adventure. Can't tell you how many times I've solved a situation by just reading.
Let us know the results of you next visit to the doctor.
You got to hold on.
There is light at the end of the tunnel for sure! I’m. 68 and just learning for sure that it’s Sjogrens ! I have suspected it for years but never took the step to have the biopsy because no matter if it’s was positive, not much can be done but treat the symptoms . My blood work kept coming back neg. In retrospect, when I was your age I was starting to have symptoms of arthritis and I found out my pain was not primarily the Sjogrens but a genetic connective tissue disease called Hypermobility Syndrome affecting all connective tissue in my body. Sjogrens is the culprit that is making that diagnosis worse because there is no lubricating going on anywhere in my body. The double whammyso to speak. Or triple whammy if you count Hypothroidism. My point to make to everyone is what my Gyn told me 40 yrs ago that autoimmune diseases can come in multiples. At the time I was dealing with low blood sugar which is a form of autoimmune disease just like diabetes he warned me to keep my eyes open for other immune diseases and I’ve been vigilant over the years. Just be vigilant for another to raise it’s ugly head and is if never happens to you then count your blessings it’s only Sjogrens .
I tell you this primarily to keep you from thinking your symptoms are all from Sjogrens. Just we watchful as you age if your primary auto immune is just Sjogrens or any other autoimmune disease and you are young when diagnosed. Just don’t concentrate or think of the current Sjogrens autoimmune disease as things can and do change over a lifetime. I can and do speak from almost 70 yrs of experience that when I had my partial hyst it was only 6 mo after until I lost thyroid estrogen and not too long after that I started experiencing symptoms of Sjogrens. So the years post menopausal may play a factor and if I can help anyone out there by telling my story I am willing to share these facts with anyone. The worse part of this is that I can’t do what I used to do and could always push through everything but my advise to all is to avoid that urge to make yourself do what your body is telling you you can’t do. The fact that I did not listen to my body is costing me now. I’m facing shoulder and possibly back surgery from worn our joints that have been overused when having a connective tissue disease all my life and did not know for sure what it was until years if complaining multiple doctors that would only read the test results and not take my complaints seriously! I should have seen more doctors and a lot sooner than I did. Good luck and welcome to the group.
I am new to this disease myself . I find that eating right and keep movin and alternate tylanol and IBphrophen for pain.
Before I found out what was wrong with me I was in the hospital three times. First time thought I was having a stroke . 2) almost had a heart attach and all they told me was my white blood cell count was very high and they did not know why.
Finall I heard one of them say I was dehydrated. I went I can not be I drink a ton of water all day long. I went home and figured out that I forgot I was taking a diaretic every day to keep my blood pressure down. I quit taking them every day and only took it when I need it and I have not been back in the hospital
I am fxin to be 57 this month. I know that my docotors have misdiagnosed me for 6 years. I started with the swelling glands in my jawl area and hurt. I told a coulpe of my doctors and they said it was something viral
I also told them the glands under my arms and behind my knees hurt and swell
I was hoping for just arthritis myself and this is a downer but I have been trying to find a way to keep the inflamation down inside my body. Eating right is first then I am going to try a few products I have heard about. My name is Beth if you ever need to talk instead of typing all this let me know ok?
Thank you so much for taking the timeout to share your story with me..thank you
Ginger said:
There is light at the end of the tunnel for sure! I'm. 68 and just learning for sure that it's Sjogrens ! I have suspected it for years but never took the step to have the biopsy because no matter if it's was positive, not much can be done but treat the symptoms . My blood work kept coming back neg. In retrospect, when I was your age I was starting to have symptoms of arthritis and I found out my pain was not primarily the Sjogrens but a genetic connective tissue disease called Hypermobility Syndrome affecting all connective tissue in my body. Sjogrens is the culprit that is making that diagnosis worse because there is no lubricating going on anywhere in my body. The double whammyso to speak. Or triple whammy if you count Hypothroidism. My point to make to everyone is what my Gyn told me 40 yrs ago that autoimmune diseases can come in multiples. At the time I was dealing with low blood sugar which is a form of autoimmune disease just like diabetes he warned me to keep my eyes open for other immune diseases and I've been vigilant over the years. Just be vigilant for another to raise it's ugly head and is if never happens to you then count your blessings it's only Sjogrens .
I tell you this primarily to keep you from thinking your symptoms are all from Sjogrens. Just we watchful as you age if your primary auto immune is just Sjogrens or any other autoimmune disease and you are young when diagnosed. Just don't concentrate or think of the current Sjogrens autoimmune disease as things can and do change over a lifetime. I can and do speak from almost 70 yrs of experience that when I had my partial hyst it was only 6 mo after until I lost thyroid estrogen and not too long after that I started experiencing symptoms of Sjogrens. So the years post menopausal may play a factor and if I can help anyone out there by telling my story I am willing to share these facts with anyone. The worse part of this is that I can't do what I used to do and could always push through everything but my advise to all is to avoid that urge to make yourself do what your body is telling you you can't do. The fact that I did not listen to my body is costing me now. I'm facing shoulder and possibly back surgery from worn our joints that have been overused when having a connective tissue disease all my life and did not know for sure what it was until years if complaining multiple doctors that would only read the test results and not take my complaints seriously! I should have seen more doctors and a lot sooner than I did. Good luck and welcome to the group.
Again to all of you thank you for sharing, helps to know people are going through the same weird symptoms as yourself.I have been a vegetarian most of my life but my diet was appalling, lived on sweets and chocolate, and rarely had any of my five a day, but in this last month diet has completely changed and eat no sweets or chocolate now, to get myself as healthy as possible
douwantabe said:
I am new to this disease myself . I find that eating right and keep movin and alternate tylanol and IBphrophen for pain.
Before I found out what was wrong with me I was in the hospital three times. First time thought I was having a stroke . 2) almost had a heart attach and all they told me was my white blood cell count was very high and they did not know why.
Finall I heard one of them say I was dehydrated. I went I can not be I drink a ton of water all day long. I went home and figured out that I forgot I was taking a diaretic every day to keep my blood pressure down. I quit taking them every day and only took it when I need it and I have not been back in the hospital
I am fxin to be 57 this month. I know that my docotors have misdiagnosed me for 6 years. I started with the swelling glands in my jawl area and hurt. I told a coulpe of my doctors and they said it was something viral
I also told them the glands under my arms and behind my knees hurt and swell
I was hoping for just arthritis myself and this is a downer but I have been trying to find a way to keep the inflamation down inside my body. Eating right is first then I am going to try a few products I have heard about. My name is Beth if you ever need to talk instead of typing all this let me know ok?
I have also had a fever, I have had one for 6 years its low grade 100-101 but so frustrating. So does Sjrogrens cause fever in some patients? I thought it was some kind of cancer. Also I have hyperthyroidism when they went to treat it I was sent to the ER, apparently treating the thyroid was the wrong way to go as there was something causing it which ended up being SS. I see a lot of hypothyroidism is it both? I have pretty much all of your symptoms Deb, I sure hope things get easier for you