New member diagnosed in September and having a hard time dealing

Hi everyone, I’m 30 years old and was diagnosed in September right on my 30th birthday. I do not have the symptoms for dry mouth or dry eyes yet though my gums take much longer than normal to heal and my ophthalmologist thinks I have dry eyes but just don’t experience discomfort because I’m used to it. Anyway, the worst part for me has been the joint pain. At times it’s downright debilitating and unbearable. I’ve been on plaquenil since September. I wonder how much worse this pain would be if I wasn’t on plaquenil. I initially got diagnosed out of chance. I had a knee injury at the gym that wasn’t healing for months. I went to my aunt’s doctor’s office and she suggested we test my SED rate. It came in pretty high and a few follow ups and blood tests later, my primary md referred me to a rheumatologist who confirmed a Sjögren’s diagnosis. For the last several months my pain was limited to my knees. It’s hard for me to exercise, work on my laptop or desktop, as this severely aggravates my knee pain. I had to quit my full time job at my prior law firm. At times it really angers me that I worked so hard and accumulated to much in student loan debt to become an attorney and now I can’t even work full time and build the career I’ve always wanted. I’m gathering the energy to open my own practice so I can at least work part time with a more flexible schedule. I’m not sure how much I can handle. Last week I started noticing that my wrists and palms are starting to hurt as well. I can’t really discuss my feelings on this subject with my friends and family. They try to be supportive, but they don’t understand. To the outside world, I look fine. I can’t verbalize properly what this pain and fatigue feels like. And on top of it I’m starting to spiral into depression and anxiety. I get so anxious about the possibility of retinopathy from plaquenil. I see an opthamogist every 6 months but I still worry. And I worry about pregnancy. I worry whether I’ll have healthy children. My rheumatologist told me I would need to be off Plaquenil when I decide to get pregnant. I’m reading contradictory information online. I’m actively looking for a different rheumatologist because I just don’t connect well with this one and I don’t trust his judgment. He doubled my dose of plaquenil to 400mg. I’m only 5ft2 and according to my opthamogist who specializes in retinopathy and plaquenil damage, 300mg is a more appropriate dose. My rheumatologist also told me eye damage from plaquenil is always reversible but my opthamogist tells me that’s not always the case. My insurance doesn’t cover most of my visits so I pay out of pocket and I’m just all around frustrated. Sorry for the rant.

Karina I really feel for you being diagnosed so young and at a time when you want to push forward with your career- it will take to time to adjust to this so it's not surprising that your feeling anxious and depressed. (Quite a few members feel this; there's an ongoing discussion about medications for depression and anxiety, so even if you feel you don't want any more medication, at least by reading that discussion you'll see you're not alone).

A lot of members find explaining to family and friends hard, that they don't understand. Again, there's been discussions about this before, with a useful open letter some members have printed off to show their relatives. Here's the link:

http://www.sjogrenssyndromesupport.org/forum/topics/open-letter

It sounds like your ophthalmologist really knows what they're talking about, so that's good. Finding a good rheumy is something other members will sympathise with too! It's good that you're getting regular check-ups to look for any retinopathy. Have you been tested for Rheumatoid Arthritis too? As your hands are hurting? It might be good to get that checked out, as Sjogrens can cause neuropathy, but is also linked to carpal tunnel syndrome, and splints can help with that.

Feel free to rant; it's a good place to let off steam!

Thanks so much for your reply and your warm welcome Jules. So far the rheumatologist has told me I’m only positive for Sjögren’s but again, I don’t fully trust him. My latest appointment was a few weeks ago. I’m going to just pay out of pocket for a second opinion somewhere else. It’s so expensive where I live. The good rheumatologist want $500 just for a consult. I’m looking forward to interacting with people who are on the same boat as me. Hopefully I can help people out as well.

Hi Karina,

Welcome it sounds like you have worked really hard to get your career going and it must be really frustrating to have to put things on hold while you are dealing with all this and being so young as well.
I had to give up a full time job on a good salary to a part time job on lower pay with a bit of flexibility and it has taken time to adjust to the financial implications as well.
This site and info has helped a lot as you don’t feel so alone.

Hi Karina, welcome to the site. I am sorry you are feeling so overwhelmed right now. I think we've all been there. If it helps any, I ask my docs tons of questions, and frequently the same questions because they all explain it a little differently. If it helps any, my docs both told me that the eye issues may not be reversible but a big part of that is catching it early on, which is why we go every 6 months. If you blew off appointments for extended periods of the it would be a bigger cause for concern. Also, I have pretty massive join issues (many of which have improved) but for the knees the rheumy gave me info to read on the shots they do now that puts fluid back into the joint. It not only relieves some of the pain at the root (rather than just masking pain) , the newer generation of shots helps the body start creating its own joint fluid again. I may give it a try. You may want to ask about things like that.

I seriously think that the emotional toll this all takes can we worse than the physical pain. Please know that you aren't alone. Don't apologize for the rant….this is definitely the place for it. :)

Hi Karina! I'm new to this site and so glad I've found people who feel the same things I do. I can relate to what you are saying about explaining things to others. My co-workers don't fully understand. My extended family don't understand. Some of my friends don't get it, even though they spend a lot of time with me. Luckily, I have a best friend who lives close by and also has autoimmune issues (though different from mine). We are always discussing how frustrating it is to have an "invisible illness". People have no idea what we are going through on the inside. They think I'm fine, because I look fine when I'm at work, but they don't see that I'm in the bed most of the time I'm not at work. They don't know that I often can't do chores around the house that I would like to do because I'm in pain or just so tired it feels like I'm walking with concrete shoes. Most of the time, I have to choose one chore to do and let the others go until the next day - which is so frustrating because my house is never completely in top condition all over. Doing a load of laundry can wipe me out some days.

My friend is actually on disability now due to her autoimmune condition. I work part-time with flexible hours (never have to be there before 10:00a and this summer they are letting me start later as long as I get my hours in). I was just telling my husband today that if my job required me to be there early every morning, there would be no way I could maintain that. I have a very difficult time in the morning. I usually have to sit with my coffee for over an hour just to get my body moving. My joints are very stiff and it seems like my entire body (even my brain) takes a while to wake up and be alert.

I take Plaquenil 400 mg. My Dr. agreed to let me try to reduce to 200 about a while back, but I ended up having more symptoms and went back to 400. My hip joints have recently been giving me a lot of trouble. I have had some success by avoiding inflammatory foods, but it's a difficult diet to stick to long term.

I have depression and anxiety both. My body is simply unable to regulate stress. Any stressful stimuli (mental, physical, whatever) escalates my already alert stress reactors, without the ability to calm. I've had a difficult time recently dealing with a situation with a family member (not immediate family) where I've had to back away and distance myself from the stress for my own health. No one understands why I've had to decline to be involved and even look at me like I'm being selfish. When I've tried to explain, they just look like they are glazing over. To them, I look fine - to them, I can work part-time and do other things, so I should be able to help out. If you haven't been through it or known someone close who has, it's really hard to relate.

Hate that we all have to deal with these things, but glad that we have each other to lean on!

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Hi Karina, I'm sorry you are going through this at such a young age but you are fortunate that there are many diagnostic tools and medications compared to when I was diagnosed 22 years ago. I had been having symptoms for about 13 years and I was finally diagnosed when I developed pulmonary fibrosis when I was 50. It was treated with steroids and (mostly) Plaquenil (300-400 mg. daily) in addition to inhalers and I've been fortunate that the fibrosis has been in remission for about 6 years now.

I always got the eye exams every 6 months and visual field testing once a year, but January 2016 (after 19 years of being on Plaquenil) my visual field test showed that the Plaquenil was finally affecting my eyes. I was referred to a Retina Specialist who confirmed the Plaquenil toxicity. I saw the retina doctor last week for a follow up exam and he said the toxicity has stabilized, so he feels it was caught early. I was worried about the vision changes, but he said it was not bad enough to prevent me from driving. I'm almost 72 now so I feel blessed to being doing as well as I am. I'm now on Imuran and adjusting to it pretty good with less aches & pains and more energy.

Just make sure you get the eye exams done regularly every 6 months!

Hi Im sorry for all you having to deal with I was diagnosed when pregnant with my fourth baby, my husband and I try to get informed about ss, my son is now 14 months and since my diagnosed I haven’t been able to take any medication due to my pregnancy and now breastfeeding my son, my rheumatologist say he is not giving me medications until im done nursing my son, he say that they would be doctors that approved the medication while breastfeeding but he knows there is always a chance that he is not willing to take and so do I. So I highly recommend you get a second opinion… Hugs and if you need to talk send me a pm…