Hello! I can not begin to tell you all how relieved I was to find this site! Most days I feel crazy, like there is no reason for me to feel the way I do, and wonder how much of it is just in my head. I needed to find a place with people that feel similar to me.
I am a wife and mother of two very ornery little boys that keep me more than busy lol. I use to work in the medical field until my symptoms worsened and I found it hard to keep up with daily living, now I stay at home and babysit, however I feel my days even doing this are numbered now.
I am newly diagnosed and so full of questions and wondering if every little thing I feel is the result of this or if its just me being paranoid lol most of which I am finding out is indeed the result of this awful disease. When I was first diagnosed (by a Rheumatologist) I was told that the only symptoms I should experience would be dry mouth and dry eye. I asked about my fatigue and brain fog (which at the time I didn't realize was brain fog at all and thought I was just loosing my mind completely) and why some days I felt so weak and more like I had the flu. to which my Doctor replied "I don't know, but I don't think that would be the Sjogrens" so I went with it. Since that time I have switched Doctors who I now love and trust dearly. but basically my first visit with him was me telling him that "Yes I am aware I have Sjogren's however I have not had any problems with that as of yet" my incompetence from being misled by the previous doc lol. so we shoved it under the rug for the time being, however the doc I have now said he would leave no stone unturned to ensure that we discovered why I am feeling like an 80 year old trapped in a 30 year old body. since then I have had countless tests ruling out diseases I have never even heard of. and will be scheduled for an MRI to ensure there is no sign of MS also. however in the mean time I have been researching on my own and discovered that not just a few but ALL of my symptoms in some form or another all come back to Sjogren's, even though I still do not have what I would consider dry mouth or dry eye. I see my doc again tomorrow and plan to further discuss my findings and his thoughts on this then and apologize for my ignorance on the topic in the beginning lol. I am sure he assumed that the last doc did the work up when in all reality he just wanted to send me away.
So anyway here I am researching and begging to feel normal again. I feel like I have forgotten what I use to be before these symptoms took over.
Lol And I am sure this made little to no sense, for that I apologize, bare with me as I am trying to make sense of it all myself. I look forward to talking with you all and hopefully can help someone else feeling like I do also. :)
Hi Stacey, and welcome to the site! I think everyone will understand how you're feeling- we all go through that wondering about every symptom... sometimes you don't ever find out, just have to accept it and get used to a 'new normal', but it's good that you have a new doctor and hopefully with the tests he's running you'll find out what you could get help with a what you'll have to adjust to.
How old are your boys? There's a group for Mums with children, you could join that for extra support/ friendship!
Oh man I bet you miss the younger years for sure lol when their lives were simpler and much less drama lol.
I do! It takes everything out of me! between them and the husband I feel like I have nothing left of myself to give! I babysit also so I have about three other two year olds here during the day five days a week. needless to say by the time 5 oclock hits I am ready for hibernation lol. I can do dinner but clean up aint happening lol Thank God for a hubby that jumps in and helps.
I know exactly what you mean!! The very person that caught on to the fact that I had SS (eye doc) has been repeatedly shocked when I talk about all of the other things going on i.e.; neuropathy, brain fog, fatigue, etc etc etc. LOL. Its funny how different your care is when you get a doc who knows something about this. There are a lot of docs I come across that don't even know what it is.
Know that you aren't a crazy person but don't get caught up in the what-ifs. While we all share the craziness of SS, each person's journey is different, Take each day one at a time, rest when you need to and really enjoy the little things.
Thank you! I talked to the doc yesterday and he now is suspecting some Polymyalgia Rheumatica? I do the best I can to not get caught up and also try pushing myself to prove I’m not just being lazy either lol. But I don’t know which is more nerve wracking, feeling crazy or like a guinea pig lol
@enjoylife. I noticed our symptoms started much the same meaning more pain than dryness… Just curious do you know what your sjogrens A and B labs were when you started your symptoms? I know I’m asking a lot lol my numbers weren’t all that high though is why I’m asking lol
Wow Stacey- where do you find the energy? I know, we're all different, but I know I couldn't do what you are handling. I have 1 son and thankfully he's grown so he no longer keeps me very busy (I'm not sure how it happened- but he'll be 21 in a few days).
I completely agree with Enjoylife's response, I had a similar response going but that was a few days ago (I kept getting distracted and not completing stuff on my pc).
My symptoms basically started with pain and fatigue as well; I didn't actually realize how dry I was until my rheumy put me on Evoxac and suggested the Biotene products and my optometrist informed me that I should be using drops. Things go wrong and our brains make adjustments, we also tend to push ourselves too hard trying to be "normal".
I think I have my lab results from a few years ago, though my SSA and SSB were negative the lip biopsy was positive though. Please keep in mind that it's hard to compare lab results as labs can list varying numbers. One lab shows the number 4 in the high range another lab shows 4 in the range of normal- it's due to how the test is done so please keep that in mind when comparing numbers (even your own tests over the years).
Rae, Thank you for your response. I understand completely with getting distracted lol I seem to be doing a lot more of that these days myself, and the holidays do not make it any easier at all.
It is insane how fast our kids grow isn't it? I know how I feel with my two, I cant imaging teen years let along adulthood lol. And honestly I am not sure how I am keeping up myself anymore. I know that each day seems to get harder and harder. I feel like I am short changing myself and my loved ones most days : ( but like you said we strive to be as normal as possible no matter what the cost some days.
I understand completely what you are saying about the labs, and knew that from working in the field but completely forgot about it honestly lol. I feel like I have been grasping at straws to just understand my body again, and that's not a good way to live either I know lol. I talked to my doc this week and he is apprehensive that my symptoms are indeed Sjogren's due to my SSB being only 1.1 (with 0.0-0.9 being normal range) and my SSA being a good negative. I will try to explain this as best as I can without sounding completely crazy :) before the last couple months I have not noticed dryness so much as the pain/achiness and fatigue and memory issues (all of which started slowly about 3 years ago and have progressively gotten worse it seems). then a few weeks ago I noticed a new rash all over my legs. they biopsied it and it came back no connective tissue damage but severe dry skin, the dermatologist explained that the biopsy results would support my SSB results? lol I have had severe dry lips I'm talking to the point of cracking and bleeding just from a smile for at least 4 years I would say. I agree with you said about not realizing just how dry I am due to my brain focusing more on the fatigue and pain everywhere else. The doc mentioned this week trying to pay more attention to my eyes to be sure I am not experiencing any dryness, So like he asked I have been more in tune and sure enough my eyes feel sticky almost, not bad enough to complain about by any means, and could very easily be the result of my vision change too I suppose, but irritated none the less. I am due for my yearly eye exam so I plan to talk to the doc then about this. lol I almost hate going to the doc because I have such a wide array of symptoms and I am only 31 lol I have been on the other end of those visits and seen patients that "fake it for meds" and legit ones and trying to distinguish between the two is awful lol I hate knowing I am in that type of debate lol (fyi I hate all meds and struggle with taking even my vit d daily lol) but its frustrating for me I can only imagine how frustrating it is for the doc lol. from neuropathy and raynauds and dryness and achiness and digestive issues and memory and OMG the fatigue lol may as well take me out back and put me down lol
sorry for verbally throwing up there for a min lol but it felt good to just lay it out there to someone that just might understand. lol my husband just looks at me like... "ok I hear you but you look like you feel ok now so what's for dinner?" lol
Just a side note, I have been suffering for a few years with Sjögren’s as a secondary disease. I am completely seronegative for psoriatic arthritis and Sjögren’s.
In terms of pain meds, there are many rheumatologists who won’t prescribe them at all. I’ve never had a prescription for them from mine. I am on a DMARD, biologic, and frequently on NSAIDs. I will likely also wind up using something for pain from neuropathy as well. There are a few issues with pain meds, including that they don’t do anything for treatment or control of the disease process. This is something I encourage you to talk about with your doctor.
So far my treatment has been Mobic as needed along with Advil Tylenol on lighter days and now Steroids to rule out the Polymyalsia Rheumatica (the doc said if the steroids work then I am looking at 10 months on them and this diagnosis but if they do not then this is ruled out and I go see a different Rheumy.) The Mobic does wonders for the achiness but does nothing for the stress when I wondered why it was there in the first place lol. I have never heard of being seronegative the psoriatic arthritis? what does this mean? I know what you mean with the pain meds not treating the problem but acts more as a band aid, this is not at all what I want! That was the problem with my first rheumatologist, he did a whole work up and said that the only thing that showed up was Sjogren's and an elevated ESR and my WBC was off but didn't want to listen to my symptoms at all in less I had the dry eye and mouth, when I asked him if it would cause my other symptoms he said he didn't know and wanted to just prescribe pain meds to see if it helped. I told him I could manage the pain fine I didn't want to start that I just wanted to understand why I felt the way I did.
Nothing shows up in my bloodwork, no autoimmune antibodies. My mom is the same. It sounds like you were right to move on to a different rheumatologist.
Stacey said:
So far my treatment has been Mobic as needed along with Advil Tylenol on lighter days and now Steroids to rule out the Polymyalsia Rheumatica (the doc said if the steroids work then I am looking at 10 months on them and this diagnosis but if they do not then this is ruled out and I go see a different Rheumy.) The Mobic does wonders for the achiness but does nothing for the stress when I wondered why it was there in the first place lol. I have never heard of being seronegative the psoriatic arthritis? what does this mean? I know what you mean with the pain meds not treating the problem but acts more as a band aid, this is not at all what I want! That was the problem with my first rheumatologist, he did a whole work up and said that the only thing that showed up was Sjogren's and an elevated ESR and my WBC was off but didn't want to listen to my symptoms at all in less I had the dry eye and mouth, when I asked him if it would cause my other symptoms he said he didn't know and wanted to just prescribe pain meds to see if it helped. I told him I could manage the pain fine I didn't want to start that I just wanted to understand why I felt the way I did.
Yea I had 2 ANA's come back really high but other than that everything has been normal. Hopefully I can continue on the right path now. but I have to tell you all I feel so relieved to talk to you guys and know that you all have felt or feel the same as I do. and you don't think I am crazy even though most days I am convinced I am loosing my mind and everything attached to it lol. Thank you all so much!
Hi Stacey. Sorry it took me a little while to answer. The tests the first rheumy did & redid were all negative for Rho, etc so they literally told me there was nothing wrong with me. Once that happened, my primary stopped looking. They told me it was probably just a little osteo, little stress, etc. I went undiagnosed for years because of that one *&%#$. LOL. It wasn't till my eye doc spent 2 years doing everything to stop the dry eye that he asked if I was ever tested for anything. He got kind of mad that they stopped looking and ordered the Sjo test, which came back positive. He sent me to a new rheumy that actually understood SS. Yes, my symptoms over the years have more been pain and fatigue. That has been going on since my mid-20s. I have dealt with cracked lips since childhood. They dry eyes were the last of my symptoms. I wish for others that more docs knew to look for this.
One of the things we all have to do is find our new norm. Its easier once you really listen to your body. It will tell you when you need to conserve, rest, etc. Staying active goes a long way towards holding off the fatigue. TJ posted an interesting explanation once about how normal fatigue and autoimmune disease are actually different which is why cardio is so important. I am a do-er so it kills me to have to slow down or ask others to deal with it but I have come to understand that it is necessary. its also helped me get my priorities a little straighter. LOL. I wish you the best in the journey. I'm glad you are finding that you are among lots of people who get it. :)
ok so I have an off the wall question for you all? What exactly does "dry eye" feel like. as I said before I have been trying to pay more attention to this to be sure I do or don't experience it. I feel like there is something in my eye almost all the time. not like a hair or anything but more like a thin film of sand paper or something, I wake up almost every morning feeling like I have so many eye "crusties" if that makes any sense. I have a difficult time producing tears BUT my eyes water easily when I yawn or sneeze etc. I frequently have the feeling that my eyes are just tired and get head aches behind them a lot it seems. Is this what I am experiencing or am I still just crazy with "nothing wrong" ; ) lol as for my mouth... I still occasionally drool in the night but notice that I do wake up with my tongue stuck to my mouth more often than I drool.
@Enjoy Life I know exactly how you feel with the docs just basically saying nothing is wrong and giving up. my poor GP has tested for everything and at the last visit basically said "I just don't know, and I don't have an easy answer for you" hes grasping at straws and I feel bad for him too lol.
I do have to say the steroids he has put me on has helped a lot with energy level but hasn't done to much for the achiness really. which was his goal. it has also brought on some new insomnia which doesn't explain anything at all in adding energy I know lol but It felt good to be able to actually cook an amazing dinner and be able to clean up after it all on my own! It was a "proud crazy lady moment" for me. : )
and again thank you all soooooo much for your answers and support! If I could hug you all I would. so Ill send a virtual one instead :)
I would describe dry eye almost exactly the same way you just did, including the moments of tears at odd times. The only thing I might add is that at times, they feel as if they have windburn in them.
Steroids are funny….I have the same issue where I do feel better on a lot of levels but they cause insomnia too…more than I already get with SS. They are weird. I'm glad that Plaquenil works so well for me. It holds off the need to them.
Ok then maybe my eyes are more dry than just ready for a new prescription lol. I am going to ask my eye doc to do that test at my apt. It’s bad that I am almost afraid of the results as bad as that sounds.
Yes these steroids are definitely different before I was up all night with neuropathy or peeing lol now I’m just up with all this energy I haven’t seen in months lol. I’m glad plaquinil is working for you though! Hopefully I can get on something that will help soon too. Does it seem to help with all of your symptoms or do you still feel anything but normal so to speak
Its worth mentioning to your doc. I already have plugs and am on Restasis twice a day. The prescriptions help protect the eye from further damage. On top of that I use drops during the day and occasionally something a little thicker at night.
I have neuropathy too…you really do have similar history. uh oh. LOL…. Plaquenil is considered a disease modifier that can help slow the progression of the disease. It went a very long way towards easing the fatigue. Mine was downright scary at times. For me, it only helps some with the joint pain on a daily basis but it does help reduce the occurrence and severity of flair ups for me. It takes a few months to build up in the system but for me, it was worth it. Quite honestly I haven't felt "normal" in a very long time. Sadly that only happens when i've had a sinus infection or something and need to do a round of steroids. Then I get a few good days towards the end of the week. Honestly though, I have other issues and can no longer take an Advil or Aleve when things are bad so I don't have anything to take the edge off or hold the joint pain back so i think its hitting a cumulative point now. It was a lot easier to get through when i could take one occasionally, if I really needed.
Lol Thankfully and sadly we are very similar! you are right about the fatigue, just getting the edge off of it this week has made me feel almost 50 percent better. And I don’t know how you are coping with no advil or aleve! If it weren’t for those some days I’m sure I wouldn’t be doing much of anything! Don’t get me wrong I stay pretty active with all the little ones here lol but once 5 pm hits my body is beyond done!
you are right about the fatigue, just getting the edge off of it this week has made me feel almost 50 percent better. And I don’t know how you are coping with no advil or aleve! If it weren’t for those some days I’m sure I wouldn’t be doing much of anything! Don’t get me wrong I stay pretty active with all the little ones here lol but once 5 pm hits my body is beyond done!