Just diagnosed - feeling relieved but also scared

General
1

Hi,

I literally just joined this site a few minutes ago. Today (well, technically yesterday...October 3), I was diagnosed with Sjogren's Disease. But I've been fighting this for a long time. My life has been absolute hell for the past year. There were times I felt like I was dying. My birthday is later this month, and I honestly didn't know if I was even going to make it because of how I was feeling.

I'm sorry this post is so long. I don't even know where to start. My symptoms right now are extreme tiredness (and I mean extreme, like some days I can't even be out for more than 30 minutes or an hour at most and then I have to come home and lay down). I randomly feel dizzy sometimes, all my joints hurt, my feet are freezing cold all the time and my toenails turn purple! I also feel weak, and I have trouble climbing steps. I have a lot of trouble concentrating, like I just can't get my brain to work right, and my short term memory has been absolutely horrible lately. I easily forget things I did earlier in the week, or sometimes even on the same day. I'll forget the name of places that I've been going to for years. Sometimes I forget peoples' names. Then my mouth got really red and irritated, and it started hurting all the time, like I had a sore throat.

I've been fighting this for so long because no one would listen to me! Every doctor I went to kept dismissing my symptoms as "anxiety." I do have problems with depression, but when I kept trying to tell them that this was something different and there was something else going on, they wouldn't listen to me. Even my parents thought I was exaggerating or just telling stories. I fought this for months before a doctor finally decided to order a blood test to check for Rheumatoid Arthritis. I didn't have that, but I was positive for Antinuclear Antibodies. That was kind of the point where some doctors suspected that...gee, maybe something was going on. Other later tests finally showed that I was positive for SSA auto-antibodies.

This has to be the scariest thing I have ever gone through. When you can feel something very seriously wrong with your body, but you have no idea what it is...that's just the scariest thing ever. The past few years have been really bad, just with a lot of things happening in my personal life. It's been one thing after another. But this...this is just something that hit me out of nowhere.

What also drives me crazy is that according to the "statistics" I'm not even supposed to get this! I'm a 36 year old male. And yet on just about every single website I go to, they always say "90 percent of patients with Sjogren's Disease are women." Over and over again. One website even just kept saying "her" throughout the whole article. ANYONE can get this disease, and they really need to stop making it seem as if it's only women. I'm a young male, and I have it...and it has made my life absolutely horrible. But when websites and articles just keep saying about how "mostly women" get it, when you're a male it makes you feel like some kind of a freak when you already feel bad as it is :(

I'm sorry if I was ranting. I guess I'm just feeling so many things at once right now. And on one hand, I feel vindicated because all this time no one was listening to me, and now it's finally proven that I HAVE been sick all this time. But I'm also scared because I don't know what's going to happen to me :(

2

Welcome to the group! I’m glad to hear that you were able to get a diagnosis, as this means that you will be able to start treatment and dealing with your symptoms. For the Raynauds part, I was told to take ginkgo biloba in the colder months, and it made a difference for me. When I went on a disease modifying drug, I no longer had to use it. I have multiple diagnoses, with Sjogren’s being secondary for me. There is lots of great info here, and the site is searchable.

By the way, we do have at least one other man active in this support group. I hope that you can start getting some relief and quieting of symptoms soon.

3

Thank you so much Stoney for your understanding and kind words. Have you ever taken Plaquenil? Before I was even going to this new Rhumatologist, I had read about it and that it seemed to help a lot of people with Lupus and Sjogren's. So I was going to ask him about it...but he ended up prescribing it to me anyway. He said it was a more mild medicine, which they usually try first. I've only taken it for 2 days now, but so far I don't seem to have any side effects whatsoever. I really, REALLY hope it will help with the fatigue. That is the biggest problem I'm having. My joints hurt pretty bad sometimes too, but what is really ruining my life is the constant tiredness. I read that it takes a while for Plaquenil to start working...and I can accept that I guess as long as it will eventually help.

Can you think of anything else that helps with fatigue? I'm just tired of feeling tired all the time! I can't take this anymore.


Stoney said:

Welcome to the group! I'm glad to hear that you were able to get a diagnosis, as this means that you will be able to start treatment and dealing with your symptoms. For the Raynauds part, I was told to take ginkgo biloba in the colder months, and it made a difference for me. When I went on a disease modifying drug, I no longer had to use it. I have multiple diagnoses, with Sjogren's being secondary for me. There is lots of great info here, and the site is searchable.

By the way, we do have at least one other man active in this support group. I hope that you can start getting some relief and quieting of symptoms soon.
4

I just stopped taking plaquenil recently, having been on it for six years. I’m off it now since I wound up switching to a biological last spring. I had horrible fatigue prior to that. It didn’t make it perfect, and I still have fatigue. But it is nothing like what it once was. I never had side effects from it. It took a month or two for me to really notice the difference. Do get your eyes checked! Plaquenil can rarely cause eye problems, so you need to be monitored with a visual field test.

I’ve heard a lot of people really happy with plaquenil for fatigue and inflammation.

5

Dear Gateway,

I simply do not understand that it is acceptable for a man to have any other autoimmune disease, so why should it be that a man cannot/should not have Sjogren's Syndrome? It's an unnecessary stigma that needs to stop!

We do have men in our group, and they are very welcome to be here, as you certainly are. I'm glad that you have joined us and that you posted. We are all individuals who are suffering, and we support each other.

Please talk to your Doctor about your cold feet and purple toenails, it sounds like Raynaud's Phenomenon. I am familiar with the symptoms, as I too have it as many of our members do. There is a group here within the site for Raynaud's and I will give you that link, and here is a link to some info about it. My Internist gave me a prescription for vasodilators, to use as needed, this increases the blood flow to the hands and feet. The nose can also be affected, so be sure to stay warm!

http://www.mayoclinic.org/diseases-conditions/raynauds-disease/basics/symptoms/con-20022916

There is tremendous anxiety trying to get diagnosed and treated, and I strongly recommend that you are under the care of the very best Rheumatologist available to you.

My Rheum explained that the memory problems are attributed to chronic pain and lack of sleep from chronic pain, and they should be addressing the sleep problem as well as the Sjogren's.

I know this is scary, but knowledge, support, and a good Dr, will help to ease that. As for stress, do your best to simplify your life. I know there are only so many things we have control of, but stress will only make things worse. Forget statistics, and stigmas, and do your best to be good to your body.

Adjusting to this is a process, it will not come over night, and it may even be beneficial to talk to a professional. I did, for about 2 years, a PhD Psychologist whose practice was to promote resilience and it did me nothing but good. You have every right and good reason to be upset, we all were/are, but a professional will help you work through it, the beginning is always the worst. I was recommended to a woman about my age, who was also a grandmother, but you may prefer to talk to a man? Again, it's all about the individual.

There are meds available for the exhaustion, here is one possibility

http://nuvigil.com/AboutNUVIGIL/FAQ.aspx?utm_source=Google&utm_medium=cpc&utm_campaign=CONSB-ProductEval&utm_term=[NUVIGIL]&gclid=Cj0KEQjwtb6hBRC_57Pvyfn66LsBEiQAtlFVu2Xg9g7tgb-Wuz5KIXD5LhrkymsE37tEWWD9WKJJZYQaAi3e8P8HAQ

I am going to feature this discussion and hope that you get a good response, hopefully the guys are around!

You have come to a good place, this is a very supportive group, please know that you are very welcome here.

Wishing you well,

SK

6

Here is a link to our Sjogren's and Raynaud's group, there is a lot of good information there.

http://forum.sjogrenssyndromesupport.org/group/raynauds-phenomenon

7

Welcome to the group. Just about everyone here has gone through the agony of years of symptoms and has struggled to find someone to believe and diagnose. I am glad that you finally have a starting point for treatment.
Plaquenil is a front line treatment. It can take up to 6 months to feel relief but it may not relieve all symptoms. I started out on Plaquenil but recently found I had an allergy to it and had to stop. It did help joint pain but not my muscle issues. Everyone experiences Sjogren’s differently and responds differently to treatment.
I would like to suggest keeping a journal of symptoms and treatments and to keep copies of all labs. Your journal may help identify triggers and is useful to show your md progress or lack of it. Good communication is important with your md and if you don’t feel your rheum is listening you should feel free to move on. I went through three rheum’s before my current md.
I hope that you find the support that you need here. That is such an important part of handling our illness.

8

Welcome. You'll find compassion here, good information, and feedback. My Sjogren's is secondary to lupus. I also have autoimmune hepatitis and discoid lupus. Of all of them, Sjogren's has caused most of my challenges--it's a big deal trying to adjust. You will discover your own rhythm.

You got to hold on.

9

I can emphasize with you completely. I'm a male in my early 30s, and I've also been trying to deal with this illness for the past year. I've had some dry eye problems before that, but most of the symptoms (fatigue, joint pain, minor dry mouth) didn't hit until about a year ago. I knew something was wrong, because before that I had been very healthy. My first rheumatologist ran the usual blood tests, and when they came back negative, she told me that it was all in my head and she couldn't help me. She also mentioned that, as a young man, I did not fit the 'demographic profile' for Sjogren's, and she's not the only doctor to tell me that.

Luckily I kept pushing, and finally found another rheumatologist who believes is treating the entire individual, not just the tests. So while I don't have a definitive diagnosis, we're treating it as Sjogren's since it fits my symptoms. He prescribed me hydroxycholoquine (generic Plaquenil), which I started about 3 months ago. I've only noticed small improvements so far, but I know the medication can be subtle and can take 6 months or more for full effect. Thankfully I haven't had much in the way of side effects; basically just more vivid dreams (I rarely used to remember them).

Though I'm still able to function and work for now, I'm also frustrated and worried about what this means for me, my life, and my career, especially at my age. I sympathize with what you've said, and I've been turning the 'why me' over in my head a lot lately.

I have done quite a bit of research into Sjogren's treatments. While there are some very promising items in the pipeline, there isn't much available at the moment; even Plaquenil is technically not FDA-approved for Sjogren's. If Plaquenil doesn't give you enough relief, there are a couple other possibilities like MTX, though they carry more potential side effects. You might want to consider some of the clinical trials for biologic drugs that are currently open. Unfortunately, they usually require positive SS-A or SS-B antibody tests, so it's not really an option for me, but it could be for you if you are near a testing location.

10

Welcome Gateway, I shared your blog with my honey so he can “get it” from a guys point of view. I’m sorry for your misery, because that is what we live. I can relate to the fear of the unknown etc. I wish I could introduce you to the healing and pain relieving powers of the willow tree in your back yard, literally. Peace & Joy

11

Thanks everyone for all your encouragement and advice. I'm hoping too that maybe sometime I can talk in-person with people in my area who have this condition. It's just starting to hit me that I'm going to have this disease for the rest of my life :(

I'm hoping and praying that when the medicine has a chance to kick in, I'll start to feel better. When I think back to how my life was before all this started, I just can't believe all the things I used to do and how I just took it for granted. I would hang out with my friends, we would go up to the mountains or beach and then go see a movie. Then I would be up until late at night playing computer games and watching videos on YouTube. All on the same day. One of my hobbies is photography. Before I got sick, I would be out most of the day taking landscape pictures and then I would be working in my darkroom all night developing prints, sometimes until 2 or 3AM. (Yeah, I use film, by the way!) That was just a couple of years ago. I feel like a completely different person now. I can't do hardly ANY of the things I used to do. If I have a good day and I can manage to go to the movies with a friend, that's a HUGE accomplishment for me. I go to Barnes and Noble with my mom when I can, and on days when I'm able to do that, I feel so lucky. I used to drive all over the place, and now I'm usually too tired to go hardly anywhere. Driving 30 minutes away is a major trip for me. I think about what my life is like now and how it changed so fast from what it used to be, and I just don't understand how all this could have happened so fast.

I haven't been able to work, partly for other reasons before this happened. But I was going to try to go back to finish college, and look for a job...then this disease hit me with a vengeance out of nowhere. It wasn't a slow progression...it hit me so fast, one symptom after another almost every day. It seemed like one moment I was just starting to noticed that I was feeling different, and before I knew it, it completely crushed me.

I know this seems childish for me to say...but it just seems so unfair. I feel like I'm way too young for all this to be happening, and it just beat me down so incredibly fast. I'm just shocked at how fast I went downhill.

Fortunately, I think my friends and my parents are starting to understand things a little more. Before, it seemed like everyone thought I was just being lazy or exaggerating things. But when they actually hear a doctor saying what's all wrong with me, and how I'm not doing well, it becomes real.

12

As a male with SS I can confirm everything you said in your first post. Apart from being a disgusting disease it is a very isolating one as no one can understand what it is like except other SS sufferers and being a male is even worse.

I totally agree that most sites on SS are written with women in mind and are written like women are the only sufferers. Also the tone and language in most SS forums is very "girly".

Because of this I feel an outsider and don't contribute much any more to any of them.

I have done extensive research and can offer nothing that medics can offer that helps with SS although many find relief with Exovac in the USA for dryness. Bear in mind all drugs used for SS were never "designed" for SS and all have strong side effects so monitor carefully and listen to your body. Many claim "alternative" thera[ies " help but I haven't found any success even with Chinese herbs that have shown promise in scientific trials sadly.

It is a very scary disease and I fully empathise with everything you say. I hope you find some help on this forum. I am in the UK so our experiences are somewhat different but like most of us medics are useless and say you don't have SS until it is impossible to deny it. They also usually lack empathy or any knowledge of the many facets of the disease - true both sides of the pond. With regard to the comments about typical profiles of SS sufferers - they are all bunkum.

The average age of onset is between 30 and 40 but children as young as 3 have it. It is far more common in women for reasons that are totally unknown. I don't buy the hormone hypothesis - no eveidence I suspect it is genetic possibly with an X chromosome origin and women have 2 X chromosomes so greater chance of the gene(s) being expressed?

I was in bed for 4 months last year with extreme fatigue but this has reduced a bit. I cannot function normally but do get up normally now.

Hope you find some relief and that your wife can learn to understand and support it is very difficult for the partner.

Best Wishes Assybish (Mike)

13

Well, so far everyone here has been very friendly and helpful, and I really appreciate that. I'm really scared about this disease, especially since it hit me so fast and changed my life so much. But it's good to have other people to talk to about it.

By the way, Mike, I'm not married. I don't think a girl would put up with me right now, with this disease or not! The problem I've been having is with some of my friends and my parents. Up until recently, everyone seemed to think I was just lazy or exaggerating. They're just now finally starting to realize that I'm actually sick.

14

Sorry just assumed hit me the same. First signs were irritated eyes like hay fever 23 months later totally dry mouth over the space of 2 days. 1 month later urticaria dry skin and fatigue, hypotension dizzines and then bed for 4 months couldn't move or think terrible tremors couldn't eat lost 27 KG etc as of last week 2 years after eyes am sero negative and 99% of medics don't accept SS but have no alternative hypothesis so just call it SICCA

I now walk and use PC and eat better but dryness symptoms are unchanged.

There is a body of evidence that suggests men suffer more with SS than women but I suspect the rest of the forum will differ :) with that hypothesis - not mine by the way ladies. No one believes you are sick as "oyu look normal" Even best friends are clueless sadly. I lost 2 freinds as they can't cope - their loss my remaining friends ar wonderful and make up for it.

15

Gatewaycityca,

Welcome to the group. I'm 35 year old and I'm male too. We do exist! I also had a hard time in the beginning with all the information on SS being addressed to women. I got a few books on SS and they are all geared towards women. Eventually I got to a place where it didn't bother me as much. As the vast majority of those with SS are female, I can understand why they address their writings to them. It does not mean we are more different than the women or that we shouldn't have this condition. One thing I did was to change the pronouns when I was reading about it. Every time an article referenced she or her I read it as he or him. It's interesting how this changed my perspective and made the whole thing a little easier.

The extreme tiredness and brain fog can be a major problem. There for a while I was having a very hard time it. I have a job and losing it is just not an option. But there were times when thinking and functioning was not possible. The scariest part was that it would get so bad that I physically could not keep my eyes open or my head up, even when driving to work in the morning. Thankfully I have to leave so early that there aren't many people on the roads and I didn't get into any accidents. Now, I still get tired but no where near as bad.

Drs can be very frustrating especially when it involves SS. Since there isn't a definitive test for SS, Drs are very reluctant to diagnosis it. Hopefully, you have a good rheumatologist that will help you get to a better place.

One thing to keep in mind is that most people go through cycles of one issue or another. Some symptoms may always be present but others will go away or at least reduce in severity. Some times a flare can last a year or longer and it seems like it will never end. But, I believe it's important to be hopeful and positive that things will improve. As one person has already said, stress can make SS worse. So try to be positive and don't expect your going to feel this bad for ever. There's a good chance at some point you will feel better and the exhaustion will reduce as well.

Josh

16

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.

17

Welcome to the group! Sorry you have had such a difficult time but you are in the right place. The good news is that now you have a diagnosis, you can start treatment and you will learn so much from the great folks in this group. I face the same exact symptoms you have been experiencing. It's difficult but you will have to learn your limitations so you don't over do it and end up in bed for days afterward.

I take plaquenil, methotrexate and ultram. The methotrexate is only 1 day a week and I take 8 pills. I take the plaquinil twice a day and the ultram is every 6 hours to manage pain. For the mouth sores, I take folic acid daily.

I have found that some yoga poses are awesome and help me to relax and focus. I have not been able to find anything to help with the brain fog. I am just honest with whomever I am talking with that I am having trouble finding the words. I don't drive myself anywhere anymore. I forget where I am going and have even forgotten how to turn the car on when out shopping once.

The bottom line is this, you are not alone. Men and women face this daily and together we are able to live our lives and enjoy it.

18

Hi Gateway, to a large extent everyone here has covered a lot of what I would say but I do want to offer you support. It took over 10 years for me to be diagnosed. I went through doctors saying there is nothing wrong with me and a (now ex) husband telling me I was playing sick as an excuse to ruin his good time. I had many years in the martial arts and have always been a physical person so I can tell you that the psychological adjustment to what I am now was more difficult than dealing with the pain and fatigue. Give yourself real time to process that but don't dwell on it. We can't afford to get lost in our disease and think we can keep going.

I am on Plaquenil too. Be patient as it does take months to build up in the system but it does help with the fatigue a great deal. I also found that while I still have pain, my flair ups are much shorter in duration. A lot of the little hints you will get from other members help too for managing symptoms. (Believe it or not, anti-inflammatory diets help too)

I can relate to the idea of not bringing anyone new into my life right now. While I'm not dooming myself to a life alone, I think I need time with me to get used to the on-going adjustments SS brings. Its ok to process things but like everything else, relationships develop naturally. Don't push people away. We all have something and there is no telling where things will go for either of you.

Good luck with your journey. I guess you know by now we are all here for you.

19

Welcome to this group. I understand about this being a female disease and how everything we read seems to exclude men. I am a 62 year old male and like you I have had the 'symptom's' for quite a few years. I was misdiagnosed with every kind of illness by different doctor's through out the years including being told that I was faking pains/illness. I even had doctors tell me that I was unable to discern what my own body was feeling like. All of this up until four months ago when a doctor's assistant suspected something and sent me for blood tests that focused on auto-immune disease. The rest is history, the next doctor's visit was with a Rheumatologist and further tests. All the test's showed that I was positive for Sjorgren's and probably Lupus. He prescribed Plaquinil and prednisone. I avoid the prednisone but I have faithfully taken the Plaquinil. I have not felt any effect from the Plaquinil yet and if this continues after another 3 months my doctor will change my medication. So, as you can tell I too am in the early stages of treatment and therefore am feeling all the symptoms just as your are. But from the posts on this site I am hopeful that the Plaquinil will kick in in a few more months and the pains/exhaustion and sickness will decrease to a much more tolerable level. No need to apologize for venting your frustrations here on this site we all need to vent from time to time. As far as being men and getting what has been known as a "women's" disease, we men who have Sjogren's/Lupus need to just adjust our lives to the perimeters this disease causes just like the women have to do. I think that in time more of us men who have this disease will be coming to the surface because of proper diagnoses by competent medical people. This is not an 'un-manly' disease it is just a disease that affects human's period. Hang in there your on the right track.

Patrick

20

Hi and welcome to our group,,,,,,when I first was diagnosed with SS I was very scared and upset I have been diagnosed for more than 20 years now, I was diagnosed at 31 and all my symptoms had come together,,,, the fatigue was huge for me,,, I literally sat on my bed for two years,,,,,, But I had a new born baby so it made it extremely hard, so she literally sat on the bed with me,, I gradually began to feel better after two years, Concentration was a big thing for me too, man it is still bad today, I still forget peoples names and when they are standing right in front of me.

My doctor told me that I could have had SS for more than 10 years before I was diagnosed with it,,,,,Back 20 years ago there was not a lot of information on SS and at the time I did not have a computer,,,,, You are going to have many feelings and emotions come up over the weeks months and years to come I was scared to too about what was going to happen to me too, everyone is different at how SS progresses, what has happened to me over the last 20 years I went on and got a degree,,,,, I just left a job in the last two years working full time because I cannot work full time any more,,, but I am ready to go back to work for just two days a week..... I still walk every day for 20 to 30 mins a day and do strength training,,, I also am very strict about my diet I only eat what the sun grows apart from two fish meals and one meat a week..... I have been in hospital with phumonia and was on life support for 11 days and pulled through that and that was due to complications of SS as well,,,,, always have your flu injections and phumonia injections,,, I do not take any medications except for one sleeping pill a night although I do rub a anti inflammatory gel into my sore joints and muscels,,,,, I always have had a bit of a attitude and I have always thought this SS is not going to rule me I am going to rule it ,,Somedays I am so miserable getting out of bed it sucks but I would sooner be alive,,, I have 8 grandchildren and 2 live with me, so they keep me very active too and I do enjoy everyday despite being in pain everyday,,,,, SS is a part of me it isn"t all me if that makes sense... We will all be here to help you as much as possible it has not been all doom and gloom for me,,, I have gone into remission several times in my having SS but in the two years have been the worst for me,,, but I have had it for a long time now,,,