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LUPUS Autoimmune Disease

Jennifer, age 41, East Lansing, Michigan, USA, Lupus

Pre-Diagnosis

If you had asked me about my health history in my early thirties, I would have said very average. I suffered with a few things like seasonal allergies, sinus infections, and random viruses. I had mono as a teenager. I never had and sports injuries or accidents. My only official medical diagnosis was chronic urticaria, more commonly known as hives, that can on suddenly in 1997 when I was 21 years old. My hives were an everyday occurrence so I had been instructed by a doctor to take an antihistamine. The hives persisted, and as soon as the antihistamine wore off, they would reappear. After I suffered with hives for ten years, an allergist agreed to run a detailed battery of tests and even tested me against my own blood plasma to see if I had built up an allergy to myself. But nothing showed up as a cause and I was told just to continue on with the antihistamine on a daily basis.

So fast forward a few years. I was married, I had two kids, I was a full time wife and mum and spent many hours helping out at school and church events. It was January 2012 and we had just returned from a Christmas trip to see relatives in California. Like every holiday season, I was fighting off a bad cold that I always attributed to lack of sleep, poor diet, and added stress. One cold night I was brushing my teeth and looking in the mirror and my face was super red – very flush like I had just run a race, but in reality, I had only been on the sofa reading. As I looked closer in the mirror I noticed an unusual shape of the redness. It was across the bridge of my nose and stretched across under both of my eyes and seeped down toward my mouth. It was a distinguishable shape like a butterfly. I called my husband in to see if he noticed the redness and he did. He asked if I should go to the doctor and I replied, “Why? I feel fine. I’m sure it will be gone in the morning.”

The redness was gone in the morning but reappeared a few days later, and within a week, I started feeling weird. Tired, foggy thinking, couldn’t concentrate, low energy. By the next week I had sore muscles even though I hadn’t done anything. The following week fatigue set in. It was so severe. Unexplainable. If I took a shirt out of the dryer and shook the wrinkles out, my arms felt like they were going to fall off. I couldn’t understand how I went from being super energetic to being so tired that I didn’t have the energy to drive. At one point it got so bad that I would need to build up the energy to put on my coat, and then I would need to sit and rest in order to regain enough energy to walk out to the car, and then I would need to sit and rest again before I would move my arm to put the car into reverse.

The fatigue was unlike anything I had ever experienced. It was not like sleep deprivation, or pulling an all-nighter in college, or even having a colicky newborn. This was a new level or tired that felt like my bones were tired and my body was failing. It felt like my muscles were deteriorating.

I tried to self diagnose. I didn’t have any medical background but I wasn’t afraid of a little research. I read about symptoms and pain and fibromyalgia. I searched through webmd.com. I read a book called Women and Autoimmune Disease by Robert Lahita, MD. I had heard of serious conditions like chronic fatigue syndrome. I felt like I had rules out MS and diabetes, and when I result started to evaluate myself I was confident I had lupus or lymphoma.

One thing was clear – it was time to go to the doctor.

Getting Diagnosed

I made an appointment with a primary care provider in late January 2012, and I had to drag my failing body to the doctor’s office. I remember so clearly how hard I was trying to keep it together – I felt like crying with weakness and fatigue. The doctor was very supportive and said he could tel I was not in peak condition. He asked me what I thought was wrong so I told him straight up, “I think I have lupus and I’m scared I have lymphoma.” He said, “Those are valid concerns but I think it might just be your thyroid. Let’s try you on a thyroid medication and I’ll run some bloody work to check for any red flags.”

He suggested that I go on Armour Thyroid which is a natural thyroid medicine. If it was my thyroid, I would feel better within forty eight hours. This was the most hopeful I had felt in a long time. I was so sick of being sick and I wanted a quick fix. Even though I was practically running on empty, I dragged myself to the pharmacy and filled the prescription and then waited and prayed that I would feel relief.

Sadly it wasn’t my thyroid. I took the medicine but my symptoms persisted. The good news was my blood work showed healthy blood and no signs of lymphoma. At the same time, a few weird things showed up in my blood work that pointed to likelihood of autoimmune problems. My doctor then suggested that I see a rheumatologist because my issues were outside his expertise. Unfortunately, I had to wait two months for an appointment.

While I waited to be seen, several new symptoms emerged. I became sore to the touch. My husband couldn’t even put his arm around me without me wincing. It felt like I had bruises everywhere. I had body aches. The best way I could describe the feeling to others was explaining how your body aches when you have the flu or a high fever.

Silently I kept asking myself and wondering, “What is wrong with me? Why am I not getting better? Is this all in my head?”

Some days I felt so bad that I didn’t even have the energy to read while laying on the sofa. All I could do was lay there. On better days, my kind was clear enough to read a book, but my arms were too weak to hold the book in place. It really felt like I was losing my life. “How can a person function if they don’t even have the strength to hold a book?” I thought.

After three months of suffering I was starting to feel depressed. Plus, the symptoms were so inconsistent, I was questioning whether it was in my head. Some days I woke up feeling terrible and stayed the same throughout the day. Other days I might wake up feeling decent and then crash a few hours after getting up.

Finally the day arrived and I was headed to the rheumatology appointment. I was told that the initial visit might take up to an hour, so I had prepared as much detailed information for the doctor as I could. When the doctor entered the room, she asked me to explain my symptoms. I pulled out the typed, double sided list I had prepared so I wouldn’t forget anything – I was so relieved to finally have a chance to be heard.

She listened to all my symptoms and then, as she was gathering her things to walk out the door, simply said, “I’ll run a few tests, but in the meantime, you should think about your problems less.” In total, she spent about 8 minutes with me.

I walked to my car and cried because I had waited two months for this appointment. I felt like she was brushing me off and thought I was crazy. This was a very low point. I didn’t know how to move forward.

A week later I received my lab results in the mail. I got online looked up scores, and tried to figure things out. It showed high numbers for my DS-DNA and low numbers for my complement component C3 and C4.

Sure enough, my blood work indicated I had lupus. A few days later, the rheumatologist called me and apologised for not contacting me sooner. She had been out of town and was reviewing lab results that had piled up on her desk. She simply said, “I just wasn’t expecting to find anything. But I’m surprised and you actually have lupus.”

I responded very naturally, “I’m not surprised at all. I won’t be returning to your office, so I’m going to find another doctor.”

She responded, “I understand if you don’t want to see me. But please don’t ignore this. You need to be under a doctor’s care. You need to take this seriously.”

What I really wanted to say was, “No, lady, you needed to take this seriously. You made me feel like a head case. You made me feel like I was losing my mind.” But I kept my composure, said Thankyou, and ended the call.

At this point, I felt validated. But also scared.

This was the first time someone actually said, “You need to take this seriously.” I started reading everything I could find about lupus, treatments, side effects, life expectancy, organ involvement, and autoimmune overlap conditions (a common occurrence when a person who has one autoimmune disease can easily have multiple diseases under the autoimmune umbrella). It turns out the hives that started in 1997 were probably an autoimmune problem that had been plaguing me for seventeen years but had gone undiagnosed.

Recommendations for Treatment

The first line of Defense for lupus is prednisone. Prednisone is a corticosteroid created in 1955 and used on a regular basis to suppress the immune system and decrease inflammation. After doing a considerable amount of reading and research, I had come to the conclusion that I didn’t want to spend the rest of my life on steroids. Because that’s basically what doctors do – they prescribe long term corticosteroids. You take them every day for your whole life. That is the go-to treatment for lupus.

When I went to see Rheumatologist #2, she said I needed to go on steroids.

When I said, “I don’t want to,” she replied, “Then why are you here?”

“There has to be another option. I don’t want to be on steroids for the rest of my life. The side effects from long term steroid use can be worse than the symptoms.” Side effects are no joke – retina degeneration, depression, fluid retention, cataract, glaucoma, severe face swelling, muscle atrophy, ulcers, and dementia.

“I’ve read that diet can make a difference,” I offered.

“Diet won’t change anything,” chided the doctor.

The rheumatologist stared at me blankly. But after a civil discussion she offered me an option I had not yet come across. She suggested that I use prednisone for five days intervals as needed. She explained it can sometimes work to kick start your body back into balance. Five days is long enough to get the benefit, but a short enough duration that the medication won’t greatly impact your organs. This sounded like a good option and I was willing to try it. The steroids made me feel better within eight hours. I had more energy, my brain was much more alert, my body was less painful. But on the flip side it gave me terrible insomnia and anxiety. The good news is the five days of prednisone helped me feel better for a few months. I’m not sure why doctors don’t offer this course of action more often. This discussion and outcome made me more confident to talk to doctors about alternatives options. I feel like I’m not a textbook case and I don’t deserve a textbook diagnosis.

Attempts at Self Treatment

A friend suggested that I see a nutritionist to help with my lupus aches and symptoms. Unlike the long wait for the rheumatologist, I was able to make an appointment for the following day.

Prior to meeting the nutritionist, I felt like I was a relatively healthy eater in my adult life. We didn’t eat fast food. I didn’t drink coffee or soda. I loved carbs and I loved to bake cookies and cakes and, although I enjoyed food, I wasn’t overweight.

The first thing the nutritionist said was, “Let’s try no gluten, no rice, no soy for three months.”

What? Ninety days? It sounded extreme, but I thought if it would help me feel better, I could do anything for ninety days. He also suggested that I take vitamin D and fish oil.

So I left the nutritionist with a prescription for healthy eating. Extremely healthy. Basically I could only eat fruits, vegetables, nuts, and meat. No bottles salad dressings, no processed foods, no eating out. Luckily I was able to find some great PALEO recipes, which made the process a bit easier – but it was still super challenging. It took the fun out of eating and I felt like the downer in the family who was keeping everyone else from eating out and having fun.

The good news is the hard work and sacrifice was worth it. I was feeling better. I was smiling more. My body felt like it was starting to recover. The diet change was worth the effort.

I was REALLY hoping when the ninety days were over that I would find that I could eat bread again. I loved my toast and bagels and tortillas. But wouldn’t you know it – when I slowly reintroduced foods I found that gluten was my biggest trigger. Every time I tried to eat just a small amount of gluten, the body aches would quickly return. It was informative to find out my trigger food, but it was disappointing at the same time.

In addition to diet, I tried to keep my symptoms in check by carefully monitoring my sleep and activities. I was careful not to overcommit to things because I knew how I would be feeling. I was very strict about getting eight hours in bed. Notice I say “in bed” instead of “asleep.” I struggled to stay asleep and I was restless at night, but I was aware of how much my body needed rest so even if I wasn’t asleep, my body was still in resting position.

Diet and rest helped to alleviate my symptoms, but they weren’t a total fix. When I was being extra careful about diet and sleep I would still have random lupus flare ups.

Life was moving on and I was learning to love with my “new normal.” I was coming to terms with the fact that the lupus symptoms were going to plague me on and off and I was just going to have to learn to live with them.

By the summer of 2015 I had been diagnosed and strictly gluten free for three years. I was managing but not thriving. I was ready to find a way to exercise to try and improve my strength and endurance. I had been saying for months – no, make that years – that I couldn’t work out. When my kids were little, I couldn’t work out because I was taking care of them. Then I felt that I couldn’t afford to take exercise classes. Then the kids went to school and I was busy during the week with school commitments and volunteering. I still liked going for walks, but the truth is the weather (especially cold weather) kept me from getting out there. So here I was, weak and lacking muscle mass of any kind… and complaining about it.

A Bikram Yoga studio opened about two miles from my house. I drove my it probably a hundred times and one day mentioned to my husband how I might want to try it out. It appealed to me because it was close to my house and there was plenty of parking. I also heard that Bikram was “hot yoga” and I was always freezing due to my bad circulation. A few days later my husband came home and surprised me with a gift – which was very out of the ordinary – of a one month trial to Bikram Yoga.

Looking back I think I was in kind of a bad spot – mentally drained, frustrated with my health issues, stressed out about family issues. It is frustrating when you feel like your body is letting you down. I felt like he bought me the one month trial pass and – although he didn’t say it out loud – must have been thinking, “If you’re not going to do it for yourself, then do it for us.”

First Class Recollections

The first class I attended was three years after my lupus diagnosis. It was August 2015 when I stepped in the hot room for the first time. The class truly seemed like it was three hours long. I knew it was heated yoga but I wasn’t prepared for the reality of what I would experience.

First of all, I wore pants. What was I thinking? But I managed to follow along and tried all the postures. My first thought was, “I have never sweat this much in my whole life.”

And I was so out of shape. It felt like all of my muscles were on fire. I couldn’t even hold my arms up over my head for more than a second or two.

The next morning I woke up sore. So sore. I hadn’t used these muscles in years. So the next day, class number two, was even harder. Because this time I knew what to expect and I was sore. I remember thinking during the class, “I’ll get my money’s worth for a month but there is no way I could keep doing this on a regular basis. These people must be crazy to come every day and do the same exact poses. It is so monotonous.”

Progress

By my third class, my mind really started freaking out. I started making excuses and comparing myself to others. My head was processing all these thoughts as I was struggling in the postures.

  • My neck has always been tight and my lymph nodes are always swollen – “My neck will never bend back like that.”
  • My shoulder has a calcification and even physical therapy didn’t help at all – “My shoulder is never going to get better.”
  • The inflammation in my feet is from lupus and I can’t sit on them in a resting position – “There is absolutely nothing I can do to fix that.”
  • “This is good for them but not for me,” or “Lucky for them, their body moves like that. My body does not move like that.”
  • And sometimes I was just thinking, “Get me out of here.”

Then I had a wake up call. The teacher came over to me while I was attempting to do Locust Pose on the floor, and she corrected my form. She also told me not to quit just because I was uncomfortable. “If you are not dealing with an injury, but just dealing with tight or sore muscles, then try to hold the posture just a little longer each day. You will see results in ten classes,” she instructed. That was the carrot on the string for me. I needed a goal. Something to shoot for. A deadline to assess my progress.

Another yoga student told me after class, “You really need to do it ten times. You can’t really judge Bikram Yoga unless you have done ten classes.”

In another class sometime that month, the teacher said, “Get up on your knees and move to the top of the mat, and think to yourself ‘It is a privilege to be here.’ Then see what happens with this posture.”

Wow, that really spoke to me. That comment didn’t have anything to do with the yoga, the postures, my weaknesses, or my ailments. But it had everything to do with my attitude and perspective. So even though I had a different teacher for the following class, I kept thinking about the words from the day before. When I wanted to quit or complain, in my head I thought, “It is a privilege to be here.” I continued on in that way, class after class, day after day.

Even with all that doubt and stubbornness, after nine classes I could sit on my feet in Half Tortoise – something I had not been able to do for twenty years.

After about fifteen classes I could scratch my back – something I hadn’t done in about three years.

And those two things alone encouraged me to keep going’s when my thirty days were up, I decided I needed to continue. After only one month, I could feel the inflammation in my neck to way down. A few weeks after that, the back of my neck started to relax and I could move my head easily.

I also saw other benefits. My breathing was improving, and I was able to take long, deep breaths. My skin was soft and clear and much less dry. My sinuses were staying clear. My arms were getting stronger. Muscles in my legs were appearing after being MIA for over a decade. And little by little, I was able to do the entire class.

Reflecting on all my lupus issues I was able to see how my diet changed relieved some issues and my strict sleep regimen helped my body through the day, but Bikram Yoga practice was making big strides in my physical body. Bikram Yoga was bringing life back to my body and helping me move with more range and less inflammation, and I felt better than I had in years.

Why Do I Keep Going to Bikram?

Bikram Yoga helps me live with my autoimmune condition instead of being controlled by it. It helps me keep my symptoms at bay. It helps me stay focused on improving my health issues without being consumed. It helps me feel like my body is getting younger instead of older.

Is it hard to get to class? Yes!

Is 90 minutes a long time to spend in a hot room? For sure!

Do I feel better when I go to Bikram Yoga? Absolutely.

So I keep going. Trying to work on the details of each pose. Trying to increase my strength and endurance. Trying to ignore the sweat in my eyes. Trying to not let my mind wander.

I haven’t “perfected” the postures by a long shot. I still can’t keep my legs straight when I touch my toes. I still don’t feel like I can do Rabbit Pose. But I try and I focus and I tell myself it is a privilege to be here or I’ll be glad I did this later today. And that is always the truth.

Finding Balance with Lupus, Bikram Yoga, and Life

Between 2012 and 2015, I lived with my lupus diagnosis and I had not yet discovered Bikram Yoga. For those three years I used diet as my main medicine. I saw a rheumatologist, a naturopath, and a nutritionist; I read lots of books, I kept track of how much sleep and rest I needed and worked hard to achieve it. I eliminated foods from my diet that made me feel bad. I determined that internal stress and strife is a big trigger for me and increased my inflammation. It is a daily acknowledgment that I have to make myself rest and care for my body, knowing I can’t push my body to the limit because then it can take days or weeks to recover.

Bikram is part of my life now. My body craves the heat. My body needs the stretching and strength building. I miss it when I can’t get to class and I can feel the change in my body if I have a few days without Bikram practice.

Living with lupus is like solving a puzzle – always searching for what pieces make you feel better and what pieces make you feel worse, and constantly gaining knowledge through experience. As I learned more and more about my body, it was easier for me to pinpoint what to do to heal faster.

Internally, I try to find a personal contentment while also realistically understanding that I can’t do everything. People with lupus must find their own personal prescription for balancing life with their disease.

I have found that Bikram Yoga is a reliable activity that I must keep in my weekly routine in order to keep my inflammation down and my lupus symptoms in check. I have found that two classes a week of Bikram is not enough to accomplish this, but five classes is too much for my system. Three to four Bikram classes per week seems to be the sweet spot. Three classes gives me a little more time in my week if I need to schedule in rest. Four times a week in the yoga studio keeps my inflammation at the lowest possible level, and it allows me to eat a bigger variety of foods without feeling the negative consequences. Plus, four classes a week keeps my joints more flexible, and since I suffer with stiffness this is important to consider.

Lessons Learned

For a while I was scared to miss yoga for vacation or if we had company staying with us. I felt compelled to go – I was so afraid if I got out of the habit then I would lose everything I had gained. One time I picked all my yoga gear so I could go to yoga classes on vacation. I was so stressed about fitting in classes with family commitments that the stress relief we are causing inflammation in my lymph nodes, and the pressure to keep my yoga schedule (my own pressure in my mind) was causing me alternative health issues. So now when I travel, I don’t put pressure on myself to find a Bikram studio. I try to do the standard breathing exercise in my hotel room in order to keep my neck flexible. If I do make it to a yoga class on vacation, then then it is just a bonus.