I have to say I am surprised and pleased that there are so many men here. I didn't realize it. I think its great that we have a mix, much as I am sad any of us are dealing with this. Oddly enough in the reverse, being a woman docs are quick to assume you are just anxious or depressed. OR whining about symptoms that aren't really anything. Funny how both have an upside and a down.
I did want to mention (in response to an earlier post) there is a fairly new test called Sjo that tests specifically for Sjogren's. I got to mine through my eye doc but the new rheumy and other specialists I deal with all took the positive results seriously, immediately. It's only a little over a year old as I understand it but it helps a great deal for those of us that test negative on other tests. Its always worth it to ask.
And I agree, its not bad to have a little bit of an attitude with this. You need to listen to your body and rest when you need to, etc but I always take the attitude that I won't lay down and let it run me over either. BTW, there is nothing Un-manly about this disease. (male or female sufferer) If anything you have to be a little bit of a bad**s to handle it. Yay us!!!
Yeah EnjoyLife, it definitely seems like there is a much bigger mix of people who get this disease than most realize. Not just with gender, but age too. If you were to just go by all the generic statistics that are spouted on most articles and websites, they say that mostly middle-aged women get it. But there are a lot of young men and women who have it. And actually, it seems like more young people are getting it lately. Or at least more young people are being diagnosed with it maybe.
What worries me about the myth of Sjogren's being a "women's disease" is not the stigma...but the fact that a lot of men, and especially other young men like me could be suffering with this and getting ignored for the mere fact that they are men. In fact, the other rhumatologist I saw before my current one was no help and one of the reasons he completely discounted the idea that I had an autoimmune disease was because I'm a male! He said it was very unlikely, and that was one of the reasons he gave! Another doctor said I "didn't fit the picture," which I assume meant I didn't fit the stereotypical demographic. That's why I want all this nonsense about "9 out of 10 patients are women" to be COMPLETELY ELIMINATED from websites and articles. People read things like that, including doctors, and so then they ignore men who are sick with this disease and never treat them for it.
The other thing too is that something needs to be done to force doctors to stop ignoring everyone's symptoms as being due to "anxiety." They try to lump every symptom in the world as being due to anxiety and depression. They try to attribute WAY too much to anxiety, and it's complete BS and junk science. Anxiety and depression simply does NOT cause all the physical symptoms they try to claim it does. (I've had depression off and on since I was a kid, and I know what it does...it does NOT cause all these physical symptoms). Meanwhile, a person could be suffering with a real physical condition that needs to be treated and they're being ignored. I think we need some very strict Federal regulation which FORCES doctors to thoroughly evaluate every possible physical cause before they are even allowed to mention psychological causes. With what I went through, there are some doctors I would like to see thrown behind bars and I'm being completely serious about that. Sometimes, that's the only way to change things...with strict laws and scaring people with jail time. If some of these lazy doctors were told that you will listen to patients, or you will be arrested and face a mandatory sentence...well then maybe things would start to change.
There are good doctors out there. I'm lucky enough to finally have one now. But there are a lot of really bad ones too, and they made my life hell for the past year. If I had my way, they would have been in handcuffs.
hi i know exactly how you feel i was diagnosed a year ago and im just coming to grips with this junk, i feel so alone yesterday i came home from work heat beat exhausted it was only my second day back to work after being off for a year because I fell over a exercise ball in a class room ( I work with special ed children) i was out in the heat yesterday for ten minutes and it made me dizzy disoriented and I was so upset i can not handle the heat it gives me the ms like symptoms so I have read and I felt so sad I cant do my job. I m not sure what to do im also exausted all the time . I look back on all the stuff I used to do and cant. used to have horses show dogs hike quad and I can barley get up and do the dishes or clean the Bathrooms and now I have to go back to work to im so anxious.I am sorry to see you go trough this but reading these things make me feel that we are not alone.I to for years have told my Dr about all off my conditions and got the run around he told me I was getting old move to the north pole so I switched drs. I wish had more answers but I really know how you feel thats me I feel the same way sorry my writing is so jumbled I usually don't write on any thing but I thought Id join in this site has been so helpful to me.
Just a pesonal point can we agree to stop calling it a syndrome _ this just perpetuates the myth that it isn't a "disease" so isn't serious. This one thing I really would like addressed by te Sjogrens foundation and other "bodies" that claim to represent us. SLE is equally a syndrome if you stick with this stupid outdated nomenclature. All AI are allegedly "women's" diseases ie more common in women. But there is one hell of a lot of misdiagnosis out there and men are notoriously reluctant to go to quacks and complain about health despite the "man flu" allegations.
As i have shown before the average age of onset is actually between 30 and 40 not mid 50's as reported everywhere.
This is another reason I tried to get support in this group to push for changes in the establishment approach to Sjogrens. But that's just a male rant and expectation of deeds and action I guess? Sorry you have Sjogrens and I understand your fears _ I was terrified as it hit so hard and so fast and no one knew what was happening in medics and I had never heard of Sjogrens. Still bl*** scared as it progresses and the prospects are not attractive.
I'm glad we've been able to share some information that's given you hope for better days. Even with my aches and pains I remember where I was a year or so ago and I'm thankful I'm doing so well. There where days my exhaustion and brain fog were so bad, as much as I tried I didn't really hold it together. I was an intern at my job and I was terrified I was going to get called in about it. Some how I made it through. Now I'm really thriving at work and making some good impressions.
I tend to agree with where you're coming from with the Dr.s. For years I've hated going to the Dr because I always feel like they see me as a hypochondriac and they don't take me seriously. I'm still pissed at my GP. I told her something was going on with my lungs and she shrugged it off as part of my asthma, gave me a pneumonia shot and sent me home. A few days later I was worse and one of the other (new & young) Dr saw me, she was concerned that I had pneumonia and consulted my GP, she came in, listened to my chest and said nope. Home I went. The next day I ended up in the hospital with pneumonia. I wanted to go home (with the proper meds of course) and they told me I was really really sick and they were admitting me. I was there for a week! This was like 2 yrs. ago, but it still pisses me off. The only good thing, is that now, if I say there's something going on with my lungs she listens.
arr. I guess I needed to rant a bit myself.
I think the internet is going to have a very big impact on the medical profession. Now Drs aren't the only ones in control of our health. We have the ability to do some research our selves, ask questions, request certain tests and meds. Something tells me more and more people are going to be getting properly diagnosed. The more Drs that realize we have SS even if we don't fit their mold of the typical SS patient the more we will effect the fields idea of who gets SS.
Josh
Gatewaycityca said:
Thank you, Josh! I feel a little more hopeful now, knowing that this can come and go in cycles, and eventually I might start feeling better. I had read about that before, how autoimmune diseases like Lupus and Sjogren's can have times with "flares" and times of "remission" where symptoms ease...but it seemed like once this thing hit me, it wasn't letting up at all. I just kept getting worse and worse. The weird thing is, I've only been taking Plaquenil for a couple of days now but it already seems like I can feel something happening. I'm still tired, but it seems like somehow it's not quite the drop-dead completely overwhelming fatigue I usually have, and my thinking is just a tiny bit clearer. Almost like someone has turned up the lights just a tiny bit brighter. I don't know for sure, it's way too early to tell. I guess it could also be that maybe I have a little bit less stress now that I finally got a doctor and rhumatologist to listen to me and actually do something to treat me. But I generally don't believe in the whole "mind over matter" stuff. If you're sick with something, you're sick period and you can't cure yourself by just wishing it away. I am hopeful about the Plaquenil since I read that it has helped a lot of people, but that isn't just a placebo effect on me...I also saw a lot of case studies where it was actually reported to have an observable improvement.
At this point, I'll take what I can get! I'm happy for any kind of hope I can get that eventually I'll start feeling better.
I'm so sorry about all you have been through, Gateway. They need to stop assigning things to only some genders -- like hearts attacks to men, women to Sjogrens and Hashimotos, etc. because they close to their eyes to the diagnosis that could help this person. I had a young male friend who felt so sick and went to every doctor who told him there was nothing wrong. He was from India so he quit his job and returned to his family in India. Once there, the first doctor he saw did the blood test and found he had Hashimotos. They think only women get that here so he suffered for a year with no one listening to him. The doc in India put him on the thyroid hormones and his health returned.
One thing I've written about here several times is that I had bad fatigue -- but not as bad as what you are going through. But I couldn't climb up stairs or stand for more than a minute or two before having to sit. I read a book about alkalanizing the body to its normal pH by drinking ONLY mineral water. So that's what I started doing, and 3 days later, I could climb stairs and walk up a hill and stand for much longer periods. I do sometimes get fatigued -- but it's a short period and it passes quickly. So I think I would still be so weak if not for the mineral water --- if your get it, don't get the sparkling kind -- that has an acidic ph. Only the regular mineral water will do.
I feel for you. But welcome to our group. We're glad you joined with us.
You got hit with both of them then, huh, Josh! Did you also have trouble getting the Hashimotos diagnosed?
I have a feeling SS and Hashimotos occur together a good number of the times for some reason. For the Hashimotos, at the advice of my acupuncturist, I was taking 200mcgs of Selenium and gave up gluten last year, and 5 months later showed normal thyroid levels on the blood test. Then I went to a horrible nutritionist who told me I should never take Selenium (because it is toxic at levels above 400cgs -- which I was NOT taking) and blah blah blah so, stupid me, I listened to her and stopped taking the Selenium. At my last blood work, I'm back to hypothyroidism so I'm back to regularly taking the 200mcgs a day of Selenium again. Now it's harder to get it back down for some reason. I should not have listened to that woman when I was already on the right path.
Diane
joshedu said:
DLT88,
I have Hashimotos too! Ha, that two of the so called women's diseases.
From what I've been reading, a lot of people who have Sjogren's Disease also have thyroid problems. I have hypothyroidism. I think I was first diagnosed with it sometime in 2011. They never said specifically that I had Hashimoto's, but just that I had hypothyroidism. My doctor at that time put me on 100 micrograms of Levoxyl. That worked until about a year ago, which is I guess when the Sjogren's really started messing me up. Now I'm taking 60mg Armour Thyroid. I'm beginning to think that Sjogren's is what caused me to have the thyroid problems in the first place. They haven't found a direct cause-effect relationship, but to me it seems like there is one, especially if thyroid problems are that common with Sjogren's.
So now I'm wondering how long I could have had this? I wonder if I could have had this for years, and maybe I just never had any obvious symptoms. I remember there were times years ago when my skin seemed really dry, but I just assumed it was because of the dry air or maybe I was taking too many showers or something.
Interesting that you mention that because I'm thinking that the Hashimoto's hypothyroidism caused the SS to develop in my body. I didn't know that a lot of people had SS and thyroid problems. Thanks for sharing what you read. Yes, it's interesting to think way back, and remember some symptoms we passed off as something else when, just maybe, they were the start of these AI diseases.
Gatewaycityca said:
From what I've been reading, a lot of people who have Sjogren's Disease also have thyroid problems. I have hypothyroidism. I think I was first diagnosed with it sometime in 2011. They never said specifically that I had Hashimoto's, but just that I had hypothyroidism. My doctor at that time put me on 100 micrograms of Levoxyl. That worked until about a year ago, which is I guess when the Sjogren's really started messing me up. Now I'm taking 60mg Armour Thyroid. I'm beginning to think that Sjogren's is what caused me to have the thyroid problems in the first place. They haven't found a direct cause-effect relationship, but to me it seems like there is one, especially if thyroid problems are that common with Sjogren's.
So now I'm wondering how long I could have had this? I wonder if I could have had this for years, and maybe I just never had any obvious symptoms. I remember there were times years ago when my skin seemed really dry, but I just assumed it was because of the dry air or maybe I was taking too many showers or something.
Many years before I was diagnosed with Sjogren’s I had a partial thyroidectomy because of suspicious nodules that turned out to be benign. My mother had Graves’ disease and Paget’s. Thyroid disease seems to pop up a lot in autoimmune disease.
Gatewaycityca said:
From what I’ve been reading, a lot of people who have Sjogren’s Disease also have thyroid problems. I have hypothyroidism. I think I was first diagnosed with it sometime in 2011. They never said specifically that I had Hashimoto’s, but just that I had hypothyroidism. My doctor at that time put me on 100 micrograms of Levoxyl. That worked until about a year ago, which is I guess when the Sjogren’s really started messing me up. Now I’m taking 60mg Armour Thyroid. I’m beginning to think that Sjogren’s is what caused me to have the thyroid problems in the first place. They haven’t found a direct cause-effect relationship, but to me it seems like there is one, especially if thyroid problems are that common with Sjogren’s.
So now I’m wondering how long I could have had this? I wonder if I could have had this for years, and maybe I just never had any obvious symptoms. I remember there were times years ago when my skin seemed really dry, but I just assumed it was because of the dry air or maybe I was taking too many showers or something.
I would suggest having them check to see if you have thyroid antibodies. If you do, then you have Hashimoto's. The reason it's important to know is because Hashimoto's is treated differently. The treatment for non-auto-immune thyroid with not work for Hashimoto's.
Does anyone know if having Hashimoto's and SS makes your SS secondary? I have both, but since Hashimoto's only attacks one part of the body, I'm not sure if I have primary or secondary SS.
From what I've read, if you only have Hashimotos, then you have Primary SS -- and boy, is mine attacking just about everything I got. I read that it's only secondary if you already have a 'connective tissue' AI disease like Lupus or RA. I suppose if you have Hashis AND RA, then your SS would be secondary.
Diane
joshedu said:
Does anyone know if having Hashimoto's and SS makes your SS secondary? I have both, but since Hashimoto's only attacks one part of the body, I'm not sure if I have primary or secondary SS.
Not really, my GP tested for both thyroid and thyroid antibodies. Though she didn't tell me I had Hashimoto's, only that I had low thyroid. I had to see one of the other Dr.s in the practice for something, and she mentioned it from the records in my file. Then I did some basic research on it and realized it was important to know it wasn't just normal low thyroid.
I'm taking Levothyroxine (also known as Mylan) 100MCG
The biggest problem with the thyroid meds is that they are hard for the body to absorb. So, your supposed to take them first thing in the morning on a completely empty stomach. You cannot have anything to eat for 2 hours and little to no calcium or iron for 4 hours.
I'm diabetic and I was trying to eat better and meet the above requirements. It was a nightmare! It's really hard to eat low carbohydrate and low sugar breakfast as it is. But to find things to eat that didn't have significant amounts of calcium or iron!
I read an article about a study that showed taking the meds just before bed may result in as much benefit as the morning routine. The thought is that we you sleep your digestive system slows way down. Therefore the meds stay in the system longer and the body is able to absorb more of it.
I can't really say whether I'm getting all the benefits or not. I haven't had my thyroid numbers checked in a while.
Josh
DLT88 said:
Josh,
You got hit with both of them then, huh, Josh! Did you also have trouble getting the Hashimotos diagnosed?
I have a feeling SS and Hashimotos occur together a good number of the times for some reason. For the Hashimotos, at the advice of my acupuncturist, I was taking 200mcgs of Selenium and gave up gluten last year, and 5 months later showed normal thyroid levels on the blood test. Then I went to a horrible nutritionist who told me I should never take Selenium (because it is toxic at levels above 400cgs -- which I was NOT taking) and blah blah blah so, stupid me, I listened to her and stopped taking the Selenium. At my last blood work, I'm back to hypothyroidism so I'm back to regularly taking the 200mcgs a day of Selenium again. Now it's harder to get it back down for some reason. I should not have listened to that woman when I was already on the right path.
Diane
joshedu said:
DLT88,
I have Hashimotos too! Ha, that two of the so called women's diseases.
Hyper- and hypothiroidism are both autoimmune whether it be Graves or Hashimotos.
Hyperthroidism is too much thyroid hormone.
Hypothyroidsim is too little.
I had Hashimotos. I had radiation therapy to knock out my thyroid. When it finally petered out after 3 years, I was put on thyroid replacement. And so this was my introduction to autoimmune.
I'm afraid hyper and hypothyroidism aren't always AI diseases.
Graves is but hyperthyroidism due to lack of iodine isn't. Hypothyroidism isn't only AI it can be caused by endocrine malfunctiosns too. Accept that AI is the most common cause worldwide but not locally in some countries dietary defficiencies are more common.
My personal opinion is that there is no difference between "primary" or "secondary" Sjogrens it's just more box ticking by ignorant rheumatologists.
People with "primary" often develop RA, FM etc later so is it now secondary?
If you appear to develop FM first then develop sicca does that mean it is secondary?
AH BUT WHAT IF YOU HAD SS but mildly so didn't notice when you had more obvious FM so were diagnosed as FM with secondary Sjogrens although ypu had Sjogrens first but undiagnosed? There is eveidence from Scandinavia that many Sjogrens show antibodies up to 8 years before symptoms!
MORE IMPORTANTLY DOES IT MAKEANY DIFFERENCE TO TREAMENT (or lack of it actually) ?
Answer NO there is no treatment for Sjogrens other than palliative and other symptoms are "treated" individually eg. plaquenil for muscle/joint and fatigue etc.
So is there a difference and if there is does it matter?
I want to bring to the discussion that it is an absolute necessity to have a bottle (or in my case 2 or more) of water with you at all times. I found this out the hard way when I passed out on the hardwood floor and my poor husband had to call 911. Turns out I was dehydrated. I had been feeling lightheaded and dizzy for some time and had to grab a wall or chair when it happened so I wouldn’t fall down. Stupid me just chalked it up to all the flipping health problems that I have. Now most of the time my husband will bring me water if I’m in bed and also takes a few bottles with him when we go somewhere.
One thing that made me so upset when I woke up and was in the ER. I had more than one doctor or resident rebuke me because they
" couldn’t believe how many meds" I take. I wanted to scream and say “Do you really think I want to live this way!!!” Other docs I have had to see are extremely judgmental when they see I have to take pain medication. They try to shame me. Just once I would like those people to have my body just for one day, and maybe then they would understand.
What if they all come on at once? Mine did. What's primary, what's secondary, what's tertiary. Symptoms overlap. The SICCA (Sjogren's International Collaborative Clinical Alliance) symptoms are the worst for me and have caused the most damage, esp skin (thin and bruises easily), teeth (rotten) and lungs (bronchiectasis). Usually there's some thyroid problem that's thrown in there.
I'm afraid hyper and hypothyroidism aren't always AI diseases.
Graves is but hyperthyroidism due to lack of iodine isn't. Hypothyroidism isn't only AI it can be caused by endocrine malfunctiosns too. Accept that AI is the most common cause worldwide but not locally in some countries dietary defficiencies are more common.
My personal opinion is that there is no difference between "primary" or "secondary" Sjogrens it's just more box ticking by ignorant rheumatologists.
People with "primary" often develop RA, FM etc later so is it now secondary?
If you appear to develop FM first then develop sicca does that mean it is secondary?
AH BUT WHAT IF YOU HAD SS but mildly so didn't notice when you had more obvious FM so were diagnosed as FM with secondary Sjogrens although ypu had Sjogrens first but undiagnosed? There is eveidence from Scandinavia that many Sjogrens show antibodies up to 8 years before symptoms!
MORE IMPORTANTLY DOES IT MAKEANY DIFFERENCE TO TREAMENT (or lack of it actually) ?
Answer NO there is no treatment for Sjogrens other than palliative and other symptoms are "treated" individually eg. plaquenil for muscle/joint and fatigue etc.
So is there a difference and if there is does it matter?