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what it feels like: 'i went from healthy to not' with rheumatoid arthritis
14 minute read
sharmila sriram with her daughter. supplied
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sharmila sriram was just 29 years old when her knee gave out during a kickboxing class. in the weeks that followed, the inflammation in her knee spread to her ankle and then to her wrist. it would take a year before sriram would finally have a diagnosis: seronegative rheumatoid arthritis.
the condition involves the body’s immune system attacking the lining of the joints, which can cause pain, stiffness, swelling, and can eventually lead to long-term joint damage. patients with seronegative rheumatoid arthritis typically have lower levels of rheumatoid factor in the blood, making it more difficult to diagnose. it is believed that one per cent of the canadian population has rheumatoid arthritis.
now a mom who runs two companies, sriram sat down with healthing to tell us about the mental toll of her diagnosis, going through pregnancy with rheumatoid arthritis, and how she’s managed to stay so positive.
what led to your diagnosis with seronegative rheumatoid arthritis?
[it happened] literally overnight. i woke up one day, and my body was doing strange things. it actually took some time for me to understand what was happening with my body, because i went from being 100 per cent healthy to my joints and my body attacking me.
it took a year of my body literally coming at me left, right and centre and then after a lot of testing and a lot of poking and prodding, we finally were able to determine it was a form of rheumatoid arthritis.
what were the symptoms that made you realize something was wrong?
the main thing was an inflammatory attack. i was going to boxercise classes at the gym on a regular basis, and at that time i was working out three or four times a week. in one of my classes one day, my left knee locked and when i did sort of a swinging move with my arms for the punching and kicking, i fell to the ground. i felt nothing until that day.
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the next couple days after that i was icing my knee, but nothing was working. i had massive inflammation in my left knee and then about a week later it jumped to my right ankle and went to my left wrist; it kept jumping. my entire body was basically being attacked, all within three or four weeks.
what was it like, feeling like your body was under attack?
i was really devastated. i mean, i didn’t understand what was happening. i was mortified and i would break down into tears on a regular basis.
i had a friend at that time who had juvenile rheumatoid arthritis; i grew up with her and so i saw how debilitating it was for her and what it was doing to her entire body. when the doctors started thinking maybe it’s arthritis, and the fact that i couldn’t move my body, my fingers, my knee… i started panicking. i didn’t know how to how to mentally handle it, but also physically.
i used to travel for business. i had meetings everywhere; i used to fly internationally and the only way for me to get through it was to start popping pain meds that would give me that temporary relief. enough to fly, enough to drive to a meeting, enough to walk somewhere. but it was so painful, i was actually getting into a depressive state.
i started with tylenol until it didn’t do anything, then i was taking advil like it was candy. i was masking my pain temporarily and i kept popping pills until those stopped working for me. so, then i started taking naproxen. i ended up throwing bile one day because i burnt a hole in my gut; i actually got ulcerative colitis from that.
i still have ulcerative colitis because of that many years later, 20 years or so. i cannot take any of the nsaids [non-steroidal anti-inflammatory drugs], like ibuprofen, naproxen. i can’t take anything from that family at all, because it will immediately react in my gut.
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were you going through all of this while you were seeking a diagnosis?
it was at the same time that i was looking for [an answer]. i thought, okay, it’ll go away, it’ll go away. and it wasn’t going away. and then i just was like, oh my god, i think i need to see a specialist.
i went to a sports specialist; he saw me walk and he’s like, oh no, you have bigger problems underlying than what i can do for you. you need to see a rheumatologist. he referred me to my rheumatologist, dr. doreen campbell. that’s how this all started. and then, working with my sister, we went through so many different tests and x-rays. it took a long time; it felt like an eternity. and then the next step was what meds to get on.
it was pretty intense. it was insane. it’s very just taxing mentally, and then [you have to] put that out of your mind and push through it.
this is before i had gotten married, before i had my baby. by that point, my left knee was so far gone. even for my wedding, i remember, i took so many pain meds just so i could walk down the aisle. i’d have panic attacks, wondering if i would embarrass myself with everyone watching.
once you were referred to a rheumatologist, what was the process of getting diagnosed?
she ran a series of tests again. with any doctor, they do their x-rays, they do their blood tests. once the blood results came in, she said, yes, you do have elevated rheumatoid factor. but there were other things — the inflammatory marker was lit up with [other] tests. it took her a little while to figure out the exact prognosis, but she can come to the conclusions that i have seronegative rheumatoid arthritis, because the rheumatoid factor was borderline [on these tests]. it was elevated, but not too bad.
once she figured that out, [we had] to get my condition under control. because by that point, oh my gosh, if i was having a bad attack i didn’t know what was sending it off, i didn’t know how to get things under control.
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before i even saw a rheumatologist, i saw a naturopath. there was a little bit of crossover, or like, it was in conjunction. the naturopath actually helped me quite a bit because they’re very firm believers that dairy and night shades are big factors for causing inflammation in people. i was learning. at that time, it was just a learning process.
and then, like i said, the doctors, my rheumatologist, were at that point determined to get me on the right set of medication to get my body under control. that involved a lot of medication and there was a steroid shot. she was injecting me directly into the joints because it was so bad. and then they had to remove the inflammation, remove the fluids.
how long did that treatment go on? are you still going through that now?
i’m still seeing [my rheumatologist]. she always calls me her special young case, because i was 29 or 30 when i saw her. she knows the hell i’ve been through and so she is the one who helped me get my condition under control. i still see her, 18 years, 19 years later.
you were so young when you were diagnosed. what goes through your head when you find out you have arthritis in your 20s?
i started bawling my eyes out. i started crying. i didn’t even know how to handle it.
i have general anxiety, but i didn’t know that then. i started getting better coping mechanisms so i [would] know how to handle it better. but back then, i used to panic. i was just crying. i would just sit in my room and cry and think i was a victim. and i [would tell myself] just get up, pick it back up. but it was so painful, that’s all i could think about. my body hurts me, my neck, my fingers, my toes or whatever, it all hurts.
[i was a] 29-year-old; i had a good career. it was so hard to cope with it: i went from healthy to not, literally overnight. that was tough. but i mean, you know, what doesn’t kill you makes you stronger, right? i’ve learned a lot over the years.
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now that you have this treatment, are there special considerations you have to take in your daily life?
health wise, physically, mentally, i mean, there’s so many different factors i’ve considered, and not perfected, but definitely enhanced over the years. things like, you know, gluten is a really nasty thing and it can definitely cut things off for sure. i cheat sometimes, but i try to stay away as much as i possibly can from gluten.
dairy is secondary. [i don’t eat dairy because of] my arthritis, but it’s also for my gut as well because of the colitis. so, i have to watch from both perspectives to kind of tackle both at the same time.
physically, yoga definitely helped me when i had my surgeries. i’ve had two knee replacements and a hip replacement, all before my [mid] 40’s. that’s how aggressive and advanced my condition was, and that’s sort of why my doctor referred to me as a special case. my [first] knee and my hips were done in my 30s, after i had my baby.
yoga helps me. i can’t sit still for one second; i’m just constantly moving around. there was a time where i couldn’t have walked from one side of the room to the other without being in agony. i needed a cane. so i needed, you know, tools or devices to help me. now, because i’ve had my joint replacements and because my condition is somewhat under control, for the most part, i’m able to walk, i’m able to go places, i can handle exercise, i can do yoga.
i meditate as well, for mental well-being. i do affirmations, just to keep my mind [clear]. if i’m experiencing pain, i don’t focus on it anymore. but that took me years and years of training my mind and my body, because i have pain every single day. i can’t even move my left arm today. but you know, the point is, i just keep going. i know how to keep my mind off it so that i can do my daily tasks. i have two companies that i run, i have my child, i’m a single mom. i have a lot on my plate, right? i need to be sure that can get everything done; i can’t afford to stop.
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what was pregnancy like with rheumatoid arthritis?
i couldn’t walk — i needed a cane. i was very sore and tender all the time because my joints were so bad, especially my left knee. i couldn’t straighten my leg. so from that perspective, it was tough. by the time i delivered [my daughter] i found it tough to walk, but anyone would find it tough to walk by then.
but the pregnancy was relatively decent. it’s when i delivered her that was the worst. obviously [my daughter was] a beautiful blessing. but i didn’t take [my arthritis] medication, because [there wasn’t much] scientific data or clinical evidence to show that it would not affect the fetus. my specialist told me to keep taking it, but i did not take anything. the only thing i took was a bit of tylenol if i was in pain and then i took a little bit of prednisone, like four milligrams per day.
i paid for it afterwards, because then the body’s like, oh, you’re done having your baby now so we’re gonna attack you again. and, oh my gosh, it hit me full-on. i couldn’t move anything, i couldn’t hold my own baby. she was only 5 pounds when she was born. i still couldn’t hold her — as a new mom, it was really hard. that got me emotional because, my poor baby, i could barely hold her.
how did you persevere through that?
i don’t know, to be honest with you. i think back and i think every mom — doesn’t matter whatever condition you have, healthy, unhealthy, doesn’t matter — every mom thinks we’re wonder woman. we have no choice, our baby is depending on us.
i struggled. i couldn’t even breastfeed properly. but i pushed through it. i didn’t even take a second to think; there was no time for that. i’m gonna be honest, i blocked it out. you know, when you go through tough things, sometimes you block it out. i think that happens. it’s far back away from conscious because i don’t even know how i got through that. i just kept pushing through.
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and you had to have your knee replaced shortly after giving birth?
that’s right, [my daughter] was a year and a half old when i had my first knee replacement. super scary thing, but i had to because i was, like, dragging my leg behind me. i couldn’t bend it, couldn’t straighten it, nothing. so my specialist referred me to the head of orthopedic surgery at [st. michael’s hospital in toronto].
i had [the knee replacement] done and was so glad, but [because i had been compensating] for my left knee, i started putting a lot of pressure on my right knee. it was a matter of time before that got pretty bad, but then my hip was also pretty bad because the pregnancy shifted my centre of gravity, so i couldn’t stand up straight. the bigger issue was the knees.
then a year later i had my right hip done because i couldn’t walk. i mean, i couldn’t walk from one end of the room to another without being in sheer agony.
what’s recovery from surgery like when you have rheumatoid arthritis?
you know, i think it depends — and this is my honest answer — it depends on how strong you are going into it. the first time i had a surgery it took me a long time to recover from that because i didn’t go in as strong as i could in terms of my muscles. i didn’t exercise before that.
the following year, i was doing a bit more activity, or trying to, to get my muscles ready for it and then i was seeing a chiropractor. i was doing a lot of [acupuncture]. i was getting my body ready for the surgery, and so each time i had surgery, my recovery time was less.
now that you’ve had both knees and a hip replacement, how is walking? is it more comfortable?
much better. i can now do things that i couldn’t even fathom doing before. like, as an example, when my daughter was five and i took her to disney, i needed a motorized wheelchair. i couldn’t handle it; i couldn’t even handle sitting, waiting in line, nothing. now fast forward three years after that, i walked that park twice, every single one — we went to five of them — without a wheelchair.
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i’m able to handle so much more physically. i went to an orange theory class two weeks ago, so i’m able to handle certain things, obviously listening to my body and within reason. but i can go dancing now. it’s so much better.
are you on biologics to treat your ra now?
yes, i am. i have a monthly infusion, and so every month i go into the clinic and they give it to me through [an] iv infusion. it takes usually about a couple of hours or so. i used to have other medications and stuff like that, but my doctor doesn’t like when i self [administer] because it’s more effective, she said, when i have it done intravenously. so the last five or six years i’ve been taking this medication through iv.
it doesn’t stop it, it slows it down. like, i’m seeing changes in my hands for sure. it’s still damaging my body, not the medication but the condition, but [the medication is] slowing [the arthritis] down. that’s the whole point, to slow things down. i don’t think about it, i just keep going. i can’t afford to slow down. there’s worse problems out there.
you have a very positive mindset.
i have to. there was a time it took over. there was a time, like early on, i was getting into a depressive state. i didn’t know how to mentally handle this. i think definitely having a positive mindset really helps: [if i put out] good vibes, good energy, then i get that back in return. you know that saying, what you put out you get back? i really do my best to stay positive at all times, and it comes back to me, it gives me that strength for my daughter. i have to push through so that i can give her that life that i want to give her. she’s been my inspiration since she was born.
now that you’ve gone through this, what drives you to talk about your experiences?
i want to be able to just share my knowledge and be able to, not just create awareness, but help individuals out there that are suffering from this. early on, it took me a little while to start looking at all the resources that were available back then for patients like me and i want to help spread the word and give back to the community. because after so many years, i finally understand what’s going on, what this condition means, what it does and how i was able to persevere through it and better accommodate this. it’s in my life now; i can’t get rid of this. either you grow with it and evolve with it, or it takes over you. so i want to be able to share that with others that have been affected with this disease.
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i think that many people associate arthritis with an old person’s disease, it’s often not the case. i was 29 when i started seeing symptoms, right? it could be at any age. i think by shedding light on this topic, it’ll help not just drive awareness, but help people that are going through this right now. because it’s really hard to go from not understanding what this is to being diagnosed with the condition. you know: what is an autoimmune condition? why is this happening to me? if i could help just one person understand it and be able to cope with it, then i’m happy.
what it feels like is a regular series that explores the experience of being diagnosed, treated and living with a health challenge. have a story to tell? email info@healthing.ca.
emma jones is a multimedia editor with healthing. you can reach her at emjones@postmedia.com or on twitter @jonesyjourn
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