Hi everyone. I have Fibromyalgia. My question is how do you know if you have Sjogren's if you already have Fibro? I mean, they have so many similar symptoms in common. Does anyone know how to know if you have Sjogren's? Did any of you first have Fibro and then have Sjogren's? If so, how did you know it was Sjogren's and not just a symptom of Fibro? Also, if you have Sjogren's, what are your all's symptoms that go along with the disease? And how did you get it diagnosed(what tests?)Thank you for all your all's help.
Good question. I know that many CFS patients have dry eyes, dry mouths and frequent thirst. So do you have Sjogren's or are your symptoms CFS... which often overlaps with fibro ?
People who have Sjogren's can have:
~ a positive ANA result
~ SSA and SSB antibodies will be positive in most patients
~ a positive RF (rheumatoid factor)
~ an elevated ESR (AKA: sed rate) --- measures inflammation
~ Immunologbulins (they are usually elevated in Sjogren's Syndrome)
There are additional tests (which I would recommend for you because you have fibro)... such as the Schirmer's Test, which measures tear production.
Well I had a CBC where I guess they measured all those things(all blood tests)? But I'm not sure if they measured all those or not. I know that at the time the blood tests were taken, I was negative for everything and all my results were normal. However, I didn't have the Schermers test or any eye or mouth tests. I went to an opthomologist and he said all was normal but I know he just did a regular eye exam. I don't think he did the Shirmer's test or any other test checking for dry eyes or Sjogren's. I've just had the reg blood tests and they were all normal. Does that mean I don't have Sjogren's or would I have to get those additional tests done(not just blood tests) to diagnose Sjogren's?
An oral Surgeon can do a lip biopsy as well. I had one done at the recommendation of my Corneal specialist after they discovered I produce NO tears!! It was painful but helpful since my ANA's has fluctuated and never given me a definative answer. I have severe dry eye feels like sand in my eyes. I have dry mouth and joint pain which could be related to another Autoimmune disorder that I may have.....
A regular blood panel (CBC - complete blood count) would not include the tests for Sjogren's or any other auto-immune illness. They have to be requested specially. A positive ANA doesn't really mean anything. Probably 50% of the population has a positive ANA at one time or the other in their life, but only a small percentage of those people ever actually get an autoimmune illness. The higher the "tieter" (how ANA is measured) the more likely an autoimmune illness will be found. ANA tieters multiply - so "0" is null, "60" is the first measure, then "120", then "240", then "320" then "640" then "1280" -- so yours is clearly raised. There are loads of other autoimmune antibody blood tests that can be done to help determine which illness you have, but symptoms would be a much faster and less painful way to go. A lip biopsy seems extremely extreem to me. Can I add another extreem to that somehow? I've had 2 vulva biopsies, and I'd guess a lip biopsy is the same, or worse, and would not wish that on my worst enemy!!! There are so many other ways to arrive at a Sjogren's diagnosis -- I'd call that Oral Surgeon a monster if I were you! Sjogren's isn't fatal or progressive -- why such a painful diagnostic tool!!! Ohh. I've got to get a cool drink with some ice. Hope I've helped someone.
I can tell you that a positive ANA is found in 29.3% of patients who have fibromyalgia. There is a theory as to why this happens and this theory also explains why people who have autoimmune diseases are susceptible to other symptoms and/or overlapping conditions.
"When mycoplasmas exit certain cells, such as synovial cells, nerve cells, among others that can be infected, they can stimulate autoimmune response. Our recently published studies demonstrated a possible link between mycoplasmal infections and CFS and FMS, since we found high frequencies of mycoplasmal infections in these patients."
Yeah, I agree a lip biopsy sounds really painful and I don't want to get that in order to know whether or not I have Sjogren's. Is it possible to know without getting that? Would I just need to get the blood tests like ANA, SSA and SSB, RF, ESR, Immunologbulins, and any other autoimmune tests from a Rheumatologist to know if I have it? Or would I have to get the Schirmer's test and other dry eye and saliva (dry mouth) tests as well to know? Also, who does the saliva tests-what kind of dr? And why didn't my opthalmologist test for dry eyes and do the Schirmer's test as part of the routine eye exam? I think they should've done that since they're testing for diseases!
I guess what I'm asking is since I have Fibromyalgia, would I need to get BOTH the blood tests for Sjogren's AND the eye and mouth tests or just get the blood tests and that's all? Because like I said, so many of the symptoms of Fibro like dry eyes and mouth are the same as Sjogren's and I need them to know if it's just Fibro or Sjogren's too?
It is true that in most cases SS is not fatal, but for those that have primary disease it can lead to several organ damage, and in a small number of people lymphoma. I had a lip biopsy, and it wasn't that bad. I had some swelling and brusing for about 2 days, and some numbness for a while. In my case it was the only way to diagnose it, and I was having severe symptoms. Listen to your DR, they are the experts. You need to know so they can treat you correctly. It really wasn't that bad. I have had worse.....Not knowing is worse. The only part that really bothered me was the stitiches. My kids have had stitches in their lips from sports....it isn't any different than that.
I agree whole heartedly. The lip biopsy was my only way to diagnose sjogren's. It isn't that bad just sore. When you have so many other things going on like Fibro or other auto immune issues it's seems the blood tests don't always give a clear picture...good luck hope you get your answer
Ok. Thanks for all your answers. Does the Rheumatologist do the lip biopsy, other saliva and mouth tests, Schirmer's test, and other eye tests to check for dry eyes and dry mouth(Sjogren's tests)? If not, which kinds of drs do which tests?
I had my lip biopsy done by ENT specialist because they are they experts. Some of the eye test can be done by an eye dr, your Rheumy dr will refer you to where you need to go. The nice thing is, once you get an answer you can start treatment and deal with some of your symptoms. Seriously my lip biopsy wasn't as bad as some of the other test I have had, and I was able to get a clear cut answer in just a few days. It is uncomfortable, but not for that long. You can look up on the net all of the complications of having one, and weigh it out for yourself. Good Luck. :[)
I went to the Rheumatologist yesterday and told him I had Fibro and at the end he did some blood tests to check for any Autoimmune diseases. I mentioned that I had dry mouth and eyes and asked him if he could check for Sjogren's Syndrome while he was doing blood tests. He said he would although I don't know exactly which ones he ordered. I just hope that's enough to diagnose Sjogren's(those blood tests) because he didn't seem to want me to get any more tests for it and I didn't press him for getting any other tests for it. I already have alot of diagnoses and I know he doesn't want to give me anymore, he told me that. So I didn't want to push for more thourough tests for it not wanting to seem like I wanted to have Sjogren's or anything. Do you think the blood tests will be enough to diagnose it? People can still have Sjogren's and have normal bloodwork though can't they?
ok I have several questions, a doctor recently told me they thought i may have sjogerns. I tested positive for a RA but then they told me in the office they didn't think I had RA cause of the fact they moved my legs and arms and very little pain was the result. Is there anything that might cause a falso positive for RA reading in the blood such as perhaps a medicine steroid or such that had been taken before the blood work was done that may have still been in the system? I don't have a lot of dry eye but there are times when i do get some dry mouth not all the time. I have throid problems but my mother had that also. No one in my family has ever had this and I am trying to understand if i have it for sure. Cause they said that's what I had based on the fact i have some dry mouth. Is occassional dry mouth enough to prove that? I have some bad teeth but that was cause by some problems i had with braces I had years ago. They left stains on my front teeth. My dentist tells me my teeth are good teeth it's just the stains the braces left behind created some weak spots. I am confused by this. I don't know what to believe. I don't want to end up on meds for this if i don't really have this problem. I have had a little dryness at times to my eyes but not like totally dry in fact the last few weeks i've had a problem with one or the other watering due to allergies. I am a little sluggish at times but other times i am fine but they are just now getting my thyroid meds to the right level also so that makes me sluggish and fatigue but since i am on a better level of meds i'm not as fatigue as i used to be. I have thought about asking for a second opinion but rhomo doctors are hard to get into. Can u tell me anything that might help. I really don't feel like I have this in all honesty. Confused Chrissy...
you say you have already been diagnosed with many things? if so, do you think it's possible all of your symptoms are related to some of those things and not another disease?
There are a couple blood test a doctor will do for SS one of them is ANA (which is antinuclear antibodies) Another is SSA and SSB (these are antibodies usually found is Sjorgens patients.) They can also check your Rheumotoid factor. If you have the positive ana and/or ssa or ssb don't expect a diagnosis based on that.
Research the disease, you will find diagnosing this disease can take up to 7 years. Not saying it will always take that long, but that is the average given on the foundation website.
if you have the positive blood test they will ask your symptoms, family history etc. then they can do other tests such as a lip biopsy to confirm
out of curiosity.. what have you already been diagnosed with?
I to have just been told I may have sjogrens by my optician ,
Apparently there's no oils in my tears and I do have dry mouth I have to take Vaseline everywhere I go !
And have been very ill for over six years now .
I have recurring kidney infections,stones,pain and it has even blocked,
I also had a hysterectomy last year age 27 due to pain and scarring,
And I have been suffering with extreme depression,confusion and lack of concentration and fatigue like you .
There are many different symptoms and I think you should ask your doctor for more test !
I have have been doing some research and there are many herbal medicine's
To treat auto immune desease I suggest you look in to it ,
I have been pumped full of medicine by my gp for years I didn't know what day it was, so be wary !
What really interested me was what you say about braces,
I to had braces as a child and ended up with staining but my dentist informed me the enamel itself was stained and nothing could correct it and over the years the places where the Staines where are decaying and pitting holes in the fronts of my teeth and my front left tooth recently snapped in half at the site of the staining which has really panicked me as I am only twenty eight and do not want to lose my teeth !
It's strange that you have this staining as I have never met anyone else who had this happen after having braces :-/
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