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Spondyloarthropathy

Mark, age 28, Melbourne, Australia, Spondyloarthropathy with Enthesitis

Getting Diagnosed

As a teenager, I was probably just as healthy as anyone else. I played basketball and tennis, and I was active pretty much every day – I could run and jump and do lots of things. As far as family history goes, my maternal grandfather had rheumatoid arthritis.

When I turned 18, I fit some chronic fatigue, then the flu, then plantar fasciitis. From that point on, I just had chronic pain that never went away. So I went to some doctors and nothing came back positive. It probably took about three months of doctors visits to get a diagnosis; I saw a surgeon as well as a rheumatologist. A bone scan at the time also showed that I had inflammation in my feet and knees.

There were doctors who thought it might be fibromyalgia or something, but it was the bone scan from the rheumatologist that solidified the diagnosis.

I was diagnosed with spondyloarthropathy with enthesitis [inflammation in the connective tissue]. The inflammation occurs where the tendons and ligaments connect to the bone. This disease is different from rheumatoid arthritis; RA is inflammation in the lining of the joints, and mine is inflammation in the connective tissue. My disease is an inflammatory arthritis but it is just hitting a different tissue.

My feet were at that point very swollen, and I could hardly walk at all. I was in a lot of pain. I couldn’t leave the house at all; I was bed-bound and very sore. That was pretty horrible.

Originally I was just put on sulfasalazine and that didn’t do anything. Eventually I was put on methotrexate and that helped a bit.

The medications did work a little bit to get me out of the house, but the medications never helped enough to get my life back to where it was. I was also put on antidepressants, anti-inflammatories for pain and Plaquenil.

With all of that I was able to study and go to university, but I wasn’t able to do much else because I couldn’t walk that far. I was still in a fair amount of pain just doing anything.

People with my condition are usually diagnosed around the age of 16. When I was first diagnosed, I was told that within three months most people can be back playing sports or running. So I was always told that I should have a good outlook. It was just that I never really responded to the drugs that well. My doctors were always pretty optimistic that things could improve for me, but it never did with the drugs.

First Impressions of Bikram Yoga

At the end of 2014, I went completely plant-based, and that allowed me to start reducing my meds. I got to a point where I wasn’t quite as sensitive to heat as I had been.

Before I had been plant-based, I would be in a lot of pain if my body temperature up at all. So previously, I could hardly do any exercise. Like maybe ten minutes of walking or something very gentle. I picked up some tai chi and built up that way.

After about six months of that I was feeling pretty good. I had heard that Bikram Yoga can be really effective with autoimmune disease, so I thought I would give it a go. I figured that the worst that could happen was that I might be sore for a few days.

So I waited until after my exams at uni and then I went to my first Bikram class in 2015. I actually had a really good class.

The first thing I noticed was the heat. I remember feeling like it really knocks you out. The Plaquenil and the antidepressant I was on both make you more sensitive to the heat. So the first time I walked in, I felt like I got hit in the chest hard with the heat.

I really thought what was going to happen was that I was going to last about ten minutes, and then I was going to get sore and nauseated. But I got through it just fine. Once I was in the room, I actually never got the urge to leave at all. After the first class, I didn’t get sore at all, and I felt really good afterward.

I couldn’t do it a lot, but it just felt really good. During class, my pain levels were about the same as usual, but afterward my pain levels went down quite a lot. Like maybe fifty percent or something like that. I went back the very next day for my second class. I didn’t drink enough water though, so my second class wasn’t very good. After that I waited a week.

The following week I still didn’t have as good of a class as the first week. My problem for the first month or so was that my muscles were so tights and weak that I actually found it very hard to recover. I would feel great after class but then my recovery time – for sore muscles and everything – was quite tough. So I didn’t really get a lot of benefits to start off with. And at the beginning it was just really hard to get to class.

Pain, Triggers, and Frequency

I found that even though it was physically tough on me, my pain levels would always go down after class.

One of my biggest trigger symptoms is heat, so it is sort of strange how Bikram Yoga works for me. But it does.

I didn’t really know how long I would be able to keep doing Bikram Yoga just because of how hard it was. When I finished uni, I was able to start going more consistently; when I was able to build up to three times a week, I started noticing a bigger difference. At that time, I started practicing yin yoga as well.

At the beginning of my Bikram practice, I noticed more pain relief but I wasn’t putting on any muscle and I wasn’t getting more flexible. My body wasn’t changing that much, but I just felt good. When I picked up to three Bikram classes a week, I started to notice my body change.

I think that my biggest issue was that I was still on medications that were making it harder to handle the heat.

Stopping my Medications

When I started Bikram in 2015, I had already given up the anti-inflammatories and the methotrexate, but I was still on Plaquenil and the antidepressants. I was finding that both of them were making the heat very hard to handle; I was getting very dehydrated, which was making me very tired.

Also, my balance was very terrible. I was sort of feeling like my body was getting better, but I didn’t feel like the Bikram was going to get me all the way there without getting off the drugs. So I think it was April 2016 I got off the antidepressants. I found that really tough. It was probably sis weeks or so that I was feeling withdrawal.

Then, in October 2016 I started cutting down on the Plaquenil. I actually got really bad withdrawals from that one as well; I felt so dizzy. It got bad enough at one point that I was spending all day in bed, and it would actually get worse if I took the drug. I cut down from 200mg to 100mg.

As I was trying to take less of the Plaquenil, I realised that every time I took the drug, I felt terrible and I couldn’t do anything.

When I finally stopped taking the drug completely, I started to feel better and I was able to get to Bikram again. I haven’t taken any Plaquenil since November 2016. I saw my rheumatologist in mid-September 2017 and she was happy for me to remain drug free.

Sharing Your Experience

I am part of a few support groups online. I don’t feel like people are really that interested in Bikram Yoga. If I talk to people about it, most people are not interested because they are worried about being hot. And most guys don’t seem to be interested in yoga.

I do recommend Bikram to people in my arthritis support group. But I don’t know if anyone has actually tried it.

A couple years ago I went on holiday, and it was the longest break I had had from Bikram. With the challenge of climate, I did fine. It was was up in north tropical Queensland, so it was nice and warm.

Living in Melbourne, where the weather gets cold, I really need the heated yoga.

Besides not having the heat, my other issue with “regular” yoga is that there is often quite a lot of pressure on the wrists. In Bikram Yoga there is not pressure on the wrists, so I don’t have any problems.

If I wasn’t going to Bikram, I don’t think I would be able to manage my condition as well, and I am pretty sure I would still be on all the drugs.

Intensity, Rest, and Modifications

When I am doing the Bikram class, I find that if I follow the dialogue exactly – especially when I am having a really sore day – it can actually make my pain levels go up. So I have sort of learned that sometimes you shouldn’t push yourself as hard and just find a way to do the postures that actually helps you.

That might mean doing less of a posture, or sitting some out, or even trying to modify some postures.

When modifying the postures, my sim is to take a bit of pressure off whichever joint is a bit tender. However, the dialogue does a good job of teaching you to do this. The trick is to make sure that I contract my muscles to take the pressure off my joints.

Even thought there is a lot of emphasis on locking the knee when standing on one leg, I completely ignore it. If I contract the muscles around my knee, then I just end up hurting myself. If I just keep my leg straight, my muscles contract just enough by themselves.

When squatting down for the first part of Awkward Pose, for a long time I would get pain in the front of my knees. To take a bit of pressure of the knees I made sure that I stick my bum back and that my knees line up with my ankle. When the knees start going forward or the ankle, they start to take more pressure and that is when I get pain.

I lessen my effort in many of the postures, depending on how I’m feeling. I have learned that even if I just come to class and lie down in Savasana for a while, even that can help. It just calms my body down a bit by being in the hot room. Just lying there can feel really nice.

Diet

I’m on a completely plant-based diet. If I went off that all my pain levels would go up instantly. I’m even strict within the plant based diet. I basically live on quinoa, oats, nuts, seaweed, and vegetables. It is very bland, but it keeps my pain levels down.

Mental Health

Before I started Bikram, I had a lot of anxiety, and probably a little bit of depression. I have found that that is pretty much all gone now. Just being in the hot room and trying to dk all the postures really does help my mental health.

Bikram Yoga brought me out of my shell a bit and made me more confident. All of that sort of thing has been good. I do find that it is a little bit hard sometimes, because the postures can be tough when I’m very stiff and sore. But it is good for my mental health, regardless of how much I can accomplish in class.

Stress and Pain is Connected

I’ve felt my best when I was able to do six Bikram classes a week. It sort of depends, because sometimes my body just isn’t able to do it. Overall, I have mostly averaged three to four classes a week.

A couple months after I went drug free, I was looking for a job, and that was quite stressful. At that time, my pain levels went up quite a lot. But I was able to get the job (that I am still at now), and I was able to bring my pain level down by doing a lot of Bikram Yoga, a lot of cold showers, and massage, plus chiropractic visits every three weeks.

I work as a software engineer and programmer. I made the mistake of trying to up my hours at work a bit. I had been working three days a week and I added more. After a month or so my health started going backwards.

I went back to working three days a week, however, I did not manage to get my body back to what it was. I was having problems with my liver and feeling overall quite tired.

Currently

I do quite a bit of walking, probably thirty minutes a day, which is a lot more than I used to be able to do. I also try to do spin bike, because that is really good for the knees. It gets my blood pumping.

Pain is all over my body but it is all very low. Most of my pain has been in my feet and hands and some in my knees. Once I came off the drugs, I noticed pain in my elbows and then in my back and neck and jaw. I also have headaches and eye pain. It is not anywhere near what it used to be, but instead of just concentrated in a few joints, it’s everywhere now.

I ended up seeing another rheumatologist to get a second opinion. The rheumatologist confirmed my diagnosis, however, it did not really matter anyway. My inflammation levels were low, and with ongoing issues I was having with my liver, he did not want to put me on medication anyway. My second rheumatologist pointed out that a lot of my symptoms were consistent with Chronic Fatigue Syndrome, however there are so many possible causes and no treatment. So that was a dead end.

I looked further into my liver issues, as the liver specialist I was seeing at the time was concerned. The presumption was that it was autoimmune related, however, I never got a diagnosis. The good news was that after doing multiple biopsies of the liver, it was concluded that there is nothing to worry about and my liver is slowly getting better anyway.

As going down the medical path did not help me, and increasing my yoga was not working completely, I needed to find something else. That ended up being meditation. I found that if I meditated thirty minutes to one hour, then I would feel much better. As a bonus, if I meditated before Bikram, I would have a much better class.

As a break from work I travelled to Ko Pha-naan in Thailand for a yoga health retreat. The yoga was not Bikram, instead it was focused on deep breathing and moving the spine. I spent three weeks eating very fresh vegan food, doing yoga, and breathing in the nice fresh air.

By the end of it, I felt much better. I can eat any vegan dish that I like, my pain levels are much better, I have more energy, and I just feel better overall. I have even been able to increase my working hours to four days a week and started learning to drive! I am not cured yet, however, I am still improving every day. I just need to keep looking after myself and I will be fine.