Hellobee

According to the American Autoimmune Related Diseases Association, autoimmune diseases affect up to 50 million in the United States. While there are many different types of autoimmune diseases, the basic common denominator is that the immune system attacks healthy cells. Depending on the type of disorder, the immune system may attack different body tissues or organs. I went for years without a diagnosis and would not have put it all together if it weren’t for my OB/GYN. The short version is that even seemingly unrelated symptoms can be very much related and it’s important to tell your doctor everything that might be bothering you.

In this post, I want to explore symptoms, diagnosis, and treatment/management of autoimmune disorders. There may also be pregnancy implications, depending on the disorder. While there are many fairly common autoimmune disorders such as lupus, Hashimoto’s disease, Addison’s disease, Grave’s disease, or fibromyalgia, to name just a few, I’ll focus on the two I’m most familiar with: Sjogren’s syndrome and rheumatoid arthritis (RA).

Symptoms

I first started having symptoms, though I didn’t realize it at the time, when I was 23-years-old. I was a third-year law student and started having incredibly dry eyes, but just thought the dryness might be attributed to heavy studying and computer usage. My eyes were tired, red, and had a gritty/sandy sensation. I went to an optometrist who suggested using various eye drops, specifically recommending preservative free drops. At one point, I had to completely discontinue the use of contacts for over a year and had punctal plugs put in to help. Still, I assumed that the problems I was having were purely opthalmological and didn’t mention this issue to any of my other doctors.

I have also had bad teeth for years, with a lot of cavities despite the fact that I generally don’t eat sugar and try to take very good care of my teeth. I very rarely have had dental insurance, though, so didn’t go to the dentist as regularly as I should have been. Again, something I thought was a standalone issue.

Another long-term problem I’ve had is muscle soreness and joint pain, but what person doesn’t as they get older? I attributed the pain to other causes including stress fractures, years of running or simply dismissed the problems as a normal part of life. I ended up with a stress fracture in a lower vertebrae during my first year of law school, something my doctor suggested was a result of high weekly running mileage as well as carrying too much in my backpack. Since then, I have also been a walking boot on four separate occasions due to stress fractures in my foot. During a particularly bad period, I also started struggling with pain in my fingers and hands. I was unable to open a bottle of water and it hurt to hold a toothbrush or the handle of my luggage.

Other symptoms that I had to varying degrees prior to diagnosis include persistent cough, dry skin and insomnia (coupled with fatigue). Since my diagnosis several years ago, I have also recognized other symptoms including extreme fatigue and tingling sensations in my hands, feet and shoulders.

As it turns out, sometimes all of these seemingly unrelated issues are actually very much related. Who knew that eye problems, tooth decay, and muscle soreness are all symptoms of a single disorder? I figured I’d talk to my optometrist about my eye issues, my dentist about mouth issues and muscle issues with my general practitioner. Because I never thought to talk to my general practitioner about all of these symptoms together, I may have ended up going through my entire life without ever getting a diagnosis if I hadn’t decided to get pregnant.

How I Was Diagnosed

Before we decided we were going to try to conceive, I scheduled an appointment with my OB/GYN to have a pre-conception consultation. I handed over my most recent lab results from blood work I’d had done six months prior and my OB/GYN flipped through it casually as we talked, assuring me that there probably wasn’t anything of note in the results because I was 29 with no noted health complications in my file. On the last page, he stopped and said, “Well, actually, I’m glad I looked. Did you know you’re ANA positive?” I’m pretty sure I gave him a completely blank look. I remember he said something about “antinuclear antibodies” and asked if he could run additional lab work. A few days later, he called with the results and suggested that I see a rheumatologist because in addition to being ANA positive, I was also SSA positive with elevated IgG levels. My OB/GYN explained that it was possible that I had something called Sjogren’s syndrome or rheumatoid arthritis. He also wanted me to see a maternal-fetal medicine specialist (MFM), a doctor who specializes in high-risk pregnancies.

My OB/GYN gave me a referral to a wonderful MFM. She redrew my labs because the previous labs only indicated positive results and not the actual titer (level) of antibodies. She also explained that SSA antibodies can cross the placenta during pregnancy and cause fetal heart block in a small number of patients so I would need to have weekly monitoring of the baby’s heart. After the appointment, she called to let me know that the results were consistent for positive SSA and ANA antibodies, but that I did not have a particular marker for lupus (something often associated with Sjogren’s and RA).

I asked my general practitioner for a referral to a rheumatologist. I did a little bit of research and all my symptoms and blood work suggested that I did have Sjogren’s syndrome. When I visited the rheumatologist, though, he came in, took one look at me and literally said, “There can’t possibly be anything wrong with you. You just look too happy.” When I explained that my OB/GYN sent me after the pre-conception appointment, the rheumatologist replied, “Oh, I see. OBs are so paranoid. They just want to know if you’re high risk or not. I’d guess you’re fine. Those lab results are probably wrong. Let me just redraw the labs.” Of course, the lab results came back exactly the same as the previous two times I had my blood drawn in the last month. I decided to forego future appointments with that rheumatologist.

I was not diagnosed with anything at this time or throughout my first pregnancy. It was only during a conversation at one of my MFM appointments when she asked whether I was being actively seen by a rheumatologist that I mentioned I really didn’t like the one I had been referred to. She gave me the name of another rheumatologist that one of her patients saw.

Several months after I gave birth to my oldest, I made an appointment with this second rheumatologist. She started by looking at my prior lab results, taking down my full medical history, and asking me about symptoms I may or may not have had. Rather than just asking, “What symptoms do you have?” though, she asked a series of questions like, “Have you experienced dry eyes?” and “Do you get a rash that worsens with sun exposure?” She asked appropriate follow up questions when I answered in the affirmative. I think this approach helped immensely because all of those things I thought were unrelated suddenly made sense. She drew labs (again) and the results were the same. Based on my responses to her questions, the labs, and in particular my history of dry eyes, she diagnosed me with Sjogren’s syndrome. Secondary rheumatoid arthritis was also a possible additional diagnosis. Finally, seven years after I first started having extremely dry eyes and mouth, I was diagnosed. It’s not uncommon for autoimmune disease to go undiagnosed for years. I suspect one reason it takes so long may be because people assume that many of the symptoms they have are unrelated, like I did.

Relation to Pregnancy

As I mentioned above, because I was SSA positive, with my first pregnancy I had to have weekly appointments between 20-28 weeks. I ended up alternating appointments between an ultrasound with heart monitoring at my MFM’s office and a full fetal echocardiogram at the children’s hospital. Additionally, because of the positive ANA result, I was told that I would need to be more closely monitored once again beginning at 32 weeks, probably with MFM appointments every other week in addition to my usual OB/GYN appointments.

With my first pregnancy, almost all of the fetal echocardiograms went well. There was one appointment where the pediatric cardiologist said they detected a “drop” of backflow from one heart valve to the other. She explained that this could be nothing, basically something that normally happens and would never be detected if I wasn’t being monitored so closely. She did mention that some things like green tea can also contribute to some of these issues so I noted that I had green tea just the day before and she recommended discontinuing use of it through the rest of my pregnancy.

At 32 weeks, I visited my MFM who commented on how pleased she was with how smoothly my pregnancy had progressed. Of course, the very next day, I started bleeding and called my OB/GYN and told him it looked like I had started my period; I’d had a partial placental abruption. I was constantly monitored that first evening in the hospital to ensure that the baby’s heart rate was good and warned that it was possible that I would be giving birth by c-section that evening. My OB/GYN explained that they were concerned that the abruption meant that not enough nutrients and oxygen would reach the baby. Luckily, the abruption seemed to stabilize and the baby’s heart rate was good. I was also given medications to prevent contractions and speed development of the baby lungs, just in case delivery was imminent.

I was in the hospital for several days before being discharged and put on “house arrest” for the next four weeks. Those every-other-week appointments became three appointments per week; two at the OB/GYN and one at the MFM until I hit 35 weeks, with non-stress tests (NSTs) and ultrasounds. I was told that if I had another abruption, that would be it and they would deliver the baby. When I asked how long they’d let me go beyond 40 weeks if I didn’t go into labor, both my OB/GYN and MFM looked at me like I was crazy. My OB explicitly said that because of the placental abruption, he hoped I would make it to 37 weeks, but we would induce after 39 weeks. I asked my MFM for a second opinion because I wanted to go as long as possible. She said that even prior to the placental abruption, because of the positive ANA, she wouldn’t want me to go beyond 40 weeks. After pushing back, she finally stated her concerns of an increased risk of the baby being stillborn. I scheduled an induction date at 39 weeks and 3 days at that point. As it turned out, it didn’t matter because I ended up having a second placental abruption at 37 weeks and my OB/GYN stripped the membranes to get labor moving faster.

With my second pregnancy, I now had a rheumatologist I was seeing. When I told her that we were considering a second pregnancy, she recommended plaquenil/hydroxychloroquine, an anti-malarial drug that has also been shown to drastically reduce the chances of fetal heart block (and can treat other Sjogren’s symptoms including rashes and joint stiffness).

Because I had now been diagnosed with Sjogren’s syndrome, I had to deal with other labs and tests. However, perhaps because of the plaquenil, a re-draw of my blood by my MFM indicated that I was no longer SSA positive and didn’t have to have weekly fetal echocardiograms anymore! I thought this was great news and looked forward to a normal pregnancy. Of course, at 30 weeks or so I started having somewhat regular but mild contractions. At 33 weeks, one evening I had contractions that were five minutes apart for several hours and was sent to the hospital by my OB/GYN. I was again given a medication to speed development of the baby’s lungs and to stop contractions. I was informed that these medications are only given until 34 weeks and had it been a week later, they would not have done anything to stop the contractions. Two days later, I was discharged from the hospital and had contractions off and on (sometimes fairly regularly, spaced 5-7 minutes apart for several hours) for the next several weeks. Ultimately, my second baby was born at exactly 36 weeks.

What role the positive ANA and SSA antibodies had on my pregnancies I don’t know for sure. My OB/GYN did say something along the lines of “crazy things happen with ANA positive patients” and I believe he links the placental abruption with ANA. Whether these antibodies had any correlation with the pre-term contractions and labor with both babies is also an open question.

While I recognize that every person and every pregnancy is different, my own personal experience was that all of my usual symptoms went away during pregnancy. The dry eyes, dry skin, fatigue and joint aches virtually disappeared while I was pregnant. I had more energy and felt better than I ever had. Pregnancy was a welcome respite from how my body normally feels. However, several months postpartum, I felt like everything came crashing down and I was slammed with awful symptoms all at once, particularly with respect to muscle and joint aches and fatigue. It was really difficult to feel like I was being assaulted with the return of symptoms while trying to adjust to life with a newborn!

How Autoimmune Diseases Affect Me as a Parent

I wish I could say that these disorders only had negative effects on pregnancy, but there are days when it hits me really hard and affects my everyday life. Before I had children, I could crash and stay in bed all weekend watching movies to recover. With children, though, I feel like I have to pull myself together and get out of bed, make waffles on the weekends, take the kids to the park, pick them up and play with them all weekend.

Sometimes it is difficult for me to figure out whether the muscle pain is a result of picking up my toddlers and carrying them around too much or whether it’s a result of my autoimmune diseases. I can usually fight through the muscle pain and joint pain during the day and then just go straight to bed to lay down after we put the kids to bed. I sometimes have my husband help massage my shoulders or hands. At times, it is so bad that I can’t sleep because I feel so uncomfortable with the back and shoulder pain.

The bigger problem is when the extreme fatigue hits. Sometimes when I complain that I’m tired, people are very dismissive and will tell me that it’s just because I have two toddlers or that all parents are tired. While yes, it’s true that running after two toddlers can be exhausting, it’s different than the all-consuming fatigue that sometimes hits. On my worst days, I have had to shut the door to my office and lie down in the middle of the floor for 20 minutes just to get enough energy to get back up and sit at my desk again. I literally do not have the energy to physically sit upright on those days. On my best days, I feel great and can (and have) run marathons. I do my best on the weekends to fake the energy I need to play with the kids, but it can be really tough. There are times, especially as the day wears on, that I have to ask my husband to watch the kids while I lay down for a few minutes. All I can do it try my best and recognize my limits.

Ultimately, I have to pick what I want to do with the kids when I’m having flare ups. Everything becomes a cost-benefit analysis. I might want to take the kids on a hike, but I know that with a toddler on my back for a significant period of time, I might have trouble walking the next day. So the hike might have to be postponed for a weekend when my body is feeling good and I know that the cost won’t be as high. Alternatively, there might be a fun street festival that I want to go to with the kids. Even though I know that I will be exhausted by the end of the day, that festival only comes around once a year and I want the memories of experiencing it while our kids are still young.

I have had to learn to ask for help when I need it, primarily relying on my husband to pick up the slack. I’m fortunate that he is very understanding, an excellent parent and a caring spouse.

Treatment

As far as treatment goes, a lot will depend on the particular autoimmune disease and your symptoms. While there is no “cure” for an autoimmune disease, there are many types of treatment that can help in managing symptoms.

There are pharmaceutical treatments for the symptoms of Sjogren’s and RA, some of which may or may not work. For example, I tried a medication to help with the dry mouth issue that was waking me up in the middle of the night, but the effects were minimal so I stopped taking it. As I mentioned above, plaquenil/hydroxychloroquine can be used to treat a rash that I sometimes develop on my neck and shoulders during the summer months. Steroid therapy can be controversial, but I’ve found it can really work wonders for muscle pain and fatigue. It can give an immediate boost that seems to help even several months down the road. Of course, it’s not something that can be done regularly because of the risks involved with continued steroid use. There are topical creams for joint pain. Many of these treatments cannot be used during pregnancy, though, and you must stop their use if trying to conceive.

To treat dry eye, there are prescription eye drops, but they weren’t covered by my insurance when I first tried them years ago and were super expensive. I’ve found a lot of over-the-counter treatments to help. One of my doctors highly recommended preservative free eye drops and Systane is one of the biggest names out there. While Systane helped, it only did so marginally. I’ve tried probably a dozen different drops and for me, TheraTears worked the best. Basically, try different things and brands because you never know what will work! At the height of dry eye, I used gels and ointments right before bed. They’re too thick to see through so you can only use it when you’re prepared to close your eyes for awhile, but they helped significantly. Warm compresses over the eyes also help stimulate tear production. If you’re trying to quickly reduce the redness in your eyes (sometimes my eyes are completely red, not just blood shot, but it looks like all of the whites of my eyes are pink/red), use a cold compress instead.

To treat dry mouth, there are mouthwashes like Biotene. My rheumatologist also recommended the use of xylitol, which is used as a sweetener and commonly found in various sugar-free gums. It’s good for your teeth, particularly if you are susceptible to tooth decay like those with dry mouth are. Because those with Sjogren’s syndrome have issues with tooth decay, make sure that any candy you might be sucking on is sugar-free.

Diet can be a little controversial and I don’t love the suggestion that if only I cut X out of my diet, I would be fine. That said, for me personally, I have found that certain foods exacerbate inflammation and have tried to reduce or eliminate them from my diet. For me, these foods include red meat, tomatoes and caffeine. My joints aches and pains were at their peak when my caffeine consumption was also at its highest, so I now only have an occasional cup of tea in order to reduce inflammation.

One of the biggest things that I’ve found to help with symptoms overall is large consumption of water. Seriously, water is my miracle drug. It seems to help with overall dryness caused by Sjogren’s syndrome. It also seems to help with fatigue. I generally drink about 16-18 glasses of water each day and my body definitely feels it when I’m not drinking enough.

I’ve had various referrals to a physical therapist and it can help with overall muscle issues, but it is time consuming and with a full-time job, side gigs and two toddlers, I often don’t find the time for it. Sometimes, though, you can get a PT massage covered by insurance, which can also work wonders and help with overall fatigue because when my body feels better, I feel better overall.

I’ve covered my own personal experiences pretty extensively, but autoimmune disorders affect everyone differently. I think most people do experience ebbs and flows in the symptoms. There are time periods where I feel great and ones where I can barely stay upright in the middle of the day. I know that many people think I’m completely “normal” and don’t realize that I have any health issues, which is fairly typical for many autoimmune diseases. Ultimately, I know that I’m pretty lucky because I have more good days than bad and a great support system in my husband.