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Connective Tissue Disease

Gina, age 38, Haverhill, Massachusetts, USA, mixed connective tissue disease

Low-Level Symptoms in Early Life

Around age 9 or 10, I vividly remember waiting at the bus stop, and my hands started turning purple. I remember looking at the other kids, and their hands weren’t purple. I told my parents, but I guess it didn’t seem that severe – they didn’t think much of it.

Soon after that, my primary care doctor noticed, and he diagnosed me with Raynaud’s disease. Because the symptoms were uncomfortable and a bit embarrassing, he put me on a calcium blocker. That medication didn’t work, though, so he recommended Ginkgo biloba, which did help.

So it seems that I was experiencing some low-level autoimmune symptoms from that time, up until the age of 16 or 17. At that point, things started to get a lot worse; my hands and my feet started to swell, turn red and purple, and itch to the point that I couldn’t wear normal shoes. The increased temperature of my skin from the shoes would make my feet itch so bad I couldn’t stand it.

By my senior year of high school, I was missing a lot of school because I couldn’t get relief. The only thing that helped was soaking my feet in a sink or bathtub.

My doctors at this point were questioning whether it was just Raynaud’s. Then, in my early 20s I had some digestive issues, but it ran in my family, so I sort of brushed it off. It wasn’t too severe, so I didn’t think much of it.

Disease Onset

A few years later, though, I developed severe abdominal bloating – to the point that even though I was a normal weight, people would ask when I was due, thinking I was pregnant.

At that point I didn’t have health insurance and I was broke, so I just tried to deal with it. I wasn’t doing yoga or anything.

When I finally did get health insurance, I went to the emergency room and found out that I had developed a bowel blockage. Over the course of the next few years, I had several bowel blockages, and on two occasions I had to have part of my intestines removed.

Surgical Interventions

My first surgery (2008) was a cecal volvulus. It was very unusual; twenty year olds don’t just have their intestines tie themselves up I’m knots. Mine was so unusual that none of the doctors in Boston had seen anything like it before. They had to take out a whole bunch of colon; the ascending colon, the cecum, and part of the transverse colon. Prior to the surgery, I felt like I couldn’t get any doctors to help me. They didn’t seem to believe the amount of pain I was in.

The only reason I got the surgery so quickly was because I presented in the emergency room as an emergency case. I had some complications and an infection.

A year later, I had a second surgery – a small bowel obstruction – in the same type of emergency situation, because no one in the meantime would treat me (or they couldn’t figure out how to). They thought my problem was an adhesion from the first surgery.

So for the second surgery, they removed part of my small intestine, and they tried to fix the problem from the first surgery.

Disease Diagnosis

After all of this, I still didn’t have an officially named autoimmune diagnosis. In addition to the digestive system problems and swelling of my hands and feet, I was also dealing with systematic full body rashes. It would happen whenever I would eat food of any kind. And the rashes would be full body – I mean lobster level colouring. Something was clearly wrong, but we just didn’t have a name for it.

My doctor finally recommended that I see another rheumatologist. My blood work came back abnormal, and I was officially diagnosed with mixed connective tissue disorder, which is also sometimes called undiagnosed connective tissue disease.

Several other doctors who have seen my blood work said I had enough symptoms to be diagnosed with lupus, but they never put that on my paperwork.

I was prescribed Plaquenil, but it didn’t seem to make much of a difference.

I actually got the lost relief by avoiding inflammatory foods – especially dairy and gluten. For me, my symptoms were way worse than my blood work showed.

I stopped working completely, because I couldn’t handle being up and about physically with the abdominal pain. It was so sad.

My doctor finally concluded that it was the autoimmune disease that was making my intestines react like this. It wasn’t technically an intestinal problem, because I had had all the gastrointestinal tests and had passed them with flying colours. So gastroenterology couldn’t find any explanation.

At other points doctors thought it scleroderma. But no one was able to definitively call it something that was recognised.

My symptoms were so all over the map that no one wanted to attach their name to the wrong disease or do a surgery on me that wasn’t needs. They did all the usual tests, but I passed them all. They gave me medication to try for my stomach, but none of it worked.

It took high levels or effort to keep my pain manageable. I had to take a herbal laxative regularly and I would have to put a heating pad on my stomach for about two hours every night to calm everything down. So I had this routine where I would take the pills and then lay down with the heat in pad. A few times I had traveled somewhere by plane, and I didn’t take my heating pad. I would end up in the ER at my destination because I was in so much pain.

In the meantime, I was trying to run a business and do a competitive adult gymnastics, and I also had family commitments. I felt handicapped by all the health issues.

I probably got fifty percent relief from changing my diet and removing gluten and dairy. I was not always diligent about sticking to this, but I did my best. I was struggling with an eating disorder during this time, and my food cravings got the best of me at times, but I was making an effort to follow the gluten and dairy free plan.

In 2008 I incorporated acupuncture treatments, and they helped a lot with the stomach pain. A non-inflammatory diet plus acupuncture gave me about eighty five percent relief, meaning that about fifteen percent of the time I was having a flare up of pretty severe abdominal pain. I would need to take pain medication manage it.

Bikram Yoga Enters the Picture

All through this time, I was keeping up as best as I could with my favourite hobby, competitive gymnastics. I was even competing some of those years, but it would depend on how healthy I was. When I felt well I did great, but when I didn’t feel good, I couldn’t even practice. It was very stressful to not know whether or not I’d feel well on any given day, as the practices and competitions are scheduled, and I would set up my work schedule around them. I wanted to be able to count on my health day to day.

All told, I did competitive gymnastics for eighteen years; from age 14 through age 35, with a few years off in between. Although I was successful and even won some gold medals, there is no doubt that the sport would have gone even better for me – and been more enjoyable and less stressful – if my health was under better control.

At one point, I had a problem with one of my knees. My coach had always noticed my purple hands too. I remember one day my coach saying, “Between your knee and your circulation problems, I think Bikram Yoga would really help you. You should at least give it a try.” She had recently started Bikram Yoga herself, and she was loving the results.

If someone tells me something like that, I am pretty proactive; so I thought I should go. My coach practiced at a Bikram Yoga studio in New Hampshire, and I lived in Massachusetts. But I looked it up and was happy to find that there was a Bikram studio in North Andover, about fifteen minutes away from where I lived.

I told my gymnastics coach that I really wanted to give Bikram Yoga a try and skip some practices for a bit in order to fit it into my schedule. She was extremely supportive of that, because she knew it would be better for me in the long run to heal my body then to get practice every day.

First Impressions

So I just showed up to a class on a Saturday, a few days after my coach had told me about it. I had read online about it a little bit in advance; people said it was really hard, so I was expecting a challenge. But I think because my gymnastic practices were at least four hours long – and without air conditioning in the summer – I felt like the typical obstacles for me weren’t there: I wasn’t afraid – just curious.

I had tried other yoga in the past and I always thought, “Well, they aren’t asking me to do a flip or a full backbend, so this isn’t hard stuff.” I had also tried tough at my fitness gym in the past, but I didn’t like it enough to stick with it.

One thing I noticed right away about Bikram Yoga was that my endurance wasn’t that good. I could get into a posture, but I definitely couldn’t hold it the whole time. The class wasn’t too bad or too challenging, but I was kind of intrigued that I wasn’t able to hold stuff for the recommended length. That humbled me a bit.

I was tired at the end of the first class, but it wasn’t one of those come to Jesus things for me it really that big of a deal. In my 10 day intro special, I think I went to seven of the ten days.

So after the first few classes, I felt I was able to relax a bit better because I knew what to expect. I think in other yoga classes, part of the difference was that I wasn’t able to relax in the class; I was always trying to learn what I was supposed to be doing rather than just letting go and letting the instructor guide me.

I reloaded that with Bikram Yoga, the class wasn’t going to change. I could go listen to the consistency of the instruction and the postures and just get through it. For me it was more of a mental thing than anything physical.

Although, speaking of the physical – the benefits started right away. I started getting relief from my knee pain within those first ten days. Since I had ten days to go as much as I wanted, I felt like I might as well take advantage of it. Looking back, I don’t think I was having any pain at all that week. My knee felt better, and I didn’t have abdominal pain.

I think the break from life was huge – just going in and not thinking about anything else for 90 minutes.

And not having any mental pressure was a big deal. When you are training in competitive gymnastics, there is always some degree of pressure. You are afraid you’re going to get hurt if you miss one thing, or your coach is going to be mad if you don’t concentrate or whatever. Even though my coaches were relatively laid back, still it was a lot of pressure.

So after my 10 day Bikram Yoga trial, I did a punch card initially but after about a year, I just got an unlimited plan.

I had tried yoga again at my fitness gym, but I still didn’t like it enough to stick with it. I craved the heat – having the heat was incentive for me to go to the Bikram Yoga class. I also really liked the community at the Bikram Yoga studio, so that was another motivation to get there.

One of the unexpected benefits for me was getting a better handle on my appetite/food cravings. As I mentioned previously, I had been struggling with an eating disorder – something I dealt with for approximately twenty years to varying degrees. I was very close to being symptom free when I started Bikram Yoga. But after doing Bikram for a couple of weeks, my symptoms improved so much to the point that I basically forgot I had eating issues altogether. I no longer felt that ravenous feeling that would cause me to be out of control with food. I also think my blood sugars were evened out from the Bikram Yoga.

For me, the eating issues tied into the digestive problems. The problems started because my stomach always had a more bloated appearance due to the digestive problems, which then caused me to feel self conscious about it. That caused me to either starve myself in attempt to make my stomach smaller, or over exercise or purge my food in another attempt to make my stomach smaller or feel less bloated. So between Bikram Yoga helping me feel calmer and less stressed, I started digesting better, and I started making better food choices (namely not too large of portions and sticking to the autoimmune diet of gluten free and dairy free better). Making better food choices reduced the bloating, so it all started working together.

I used to abuse food to calm my anxiety, and Bikram Yoga taught me how to use my breath for the same purpose. From what I learned at Bikram Yoga, I was able to switch my coping mechanism over to something healthier. I also found that by seeing all the different body shapes and sizes in class, I started being kinder to myself if my body didn’t look perfect. In gymnastics, most people who do that sport are in crazy good shape, but by seeing “real” people at Bikram Yoga, it helped me to reframe what a normal body looked like and what bodies of all shapes and sizes could do. Being being bigger or smaller didn’t seem to matter that much in class, and that was useful for me to see.

Bikram Yoga and Autoimmune Symptoms

I feel like Bikram Yoga started helping my autoimmune symptoms after about one or two months. My hands definitely weren’t as purple.

The improvements in my stomach issues were much more apparent. The problem didn’t do away completely, but my stomach would swell much less often. I would say that it went from being once a week to once a month. Now it is even less than that.

Once I started Bikram Yoga, I didn’t need to use my heating pad anymore on my abdomen to help my digestive system. And that was huge! I mean, I don’t even know where my heating pad is right now, because I don’t even need it. So now that I go to Bikram Yoga, I don’t have to worry about the laxative pills or the heating pad or any of that. I can just live my life.

I had asthma and was on an inhaler and that is better now.

I look very different after Bikram. Before practicing Bikram Yoga my face was so full it was crazy’s my body was swollen and inflamed. All that has improved.

I recommend Bikram Yoga to a ton of people, and I have brought people with me. I really like to tell people when something is working! I work as a personal trainer, and on the back of my clipboard for my business there is a Bikram Yoga sticker. So every time I hold my clipboard, clients can see it. My personal foundation is fitness, so although I do promote it heavily, I think of Bikram Yoga as an on the side sort of thing. I like to use it as my recovery days during my exercise week.

As a personal trainer, I also support any person’s decision. So if they only want to do yoga, or if they want to do running and yoga, that is fine. My whole thing is that you should just do what makes you happy and what leads to your best life.

So if I’m talking to someone and I think they could benefit, I certainly encourage them to go.

Currently

I have been practicing about twice a week lately. That is less than I did at first. Initially I went at least four times a week.

I had ankle surgery a few years back, and since then I’ve been struggling with nerve pain in my feet. Some weeks and months I feel good and can push myself in class, but other times I choose to sit out the more challenging poses on my feet and let my body soak up the benefits from the heat and the breath work in a more gentle way.

When I am limited physically, I find that the class helps me work mentally and spiritually. I am the type of person that likes to go one hundred miles per hour at all times, but I have come to realise that if you do not bike in breaks into your day, week, month, and year, your body will force you to take them by becoming sick or injured. Now I try to not let it get to that point by listening to my body more than ever.

In that vein, my body was telling me it was done with all the pounding and stress of gymnastics, and I chose to be done with it a couple of years ago. I am not sure I would have realised that if Bikram Yoga had not taught me to listen to my body, and I might have contributed to the point where I developed further damage. I am glad I have improved the skill of listening to my body, and I believe Bikram yoga was a huge part of that.

Fortunately, I still get benefits from doing Bikram yoga once or twice a week. It definitely keep my autoimmune symptoms in check. It helps my stress levels and check as well.

I went back to the rheumatologist when the foot pain started, because my primary doctor wanted to make sure it wasn’t in an autoimmune problem. My rheumatologist confirmed I no longer have any signs of autoimmune disease… Which is amazing.

Back when I was in the early stages of diagnosis, I had several doctors in Boston tell me that I would have to learn to live with debilitating symptoms of my autoimmune disorder, and now most days I literally have no symptoms at all. I’m proud of the work I did to help my body get to this point. I continue to tell folks all about Bikram yoga – for me it truly was and is life changing.