*Note 11/28/19: Charis now uses they/them/their pronouns. This post was titled before that change.
These questions were asked by friends of mine after I was diagnosed with Ankylosing Spondylitis. If you have a question, add it in the comments below!
How old were you when you started showing symptoms of AS?
I was 13 when I first began showing symptoms, although I’m beginning to think I was younger since I had really bad “growing pains” in my knees as a young kid. At 13, my hips began aching and cramping – I recall my friends in their 60s telling me it sounded like arthritis.
When were you first diagnosed, and how did you handle it?
I was officially (clinically/medically) diagnosed during the spring of 2013, although I knew what it was several months beforehand. I did not have insurance when I found out, so I couldn’t have an official diagnosis until after I found insurance. At the time I would have been charged more for having a pre-existing condition. My whole world was uprooted. I have accepted that I have the disease, but I have not accepted what I have lost and what I am and will continue to lose.
How did it present initially and how were you finally diagnosed?
Symptoms multiplied over time as I aged. In late middle school I began experiencing a dull achy pain in my lower back – it hurt to lie on my stomach and prop myself up on my elbows because it arched my back (that aggravated my pain). In college my back would spasm at night. Severe low back pain began my sophomore year in college, even while I was playing college soccer.
Throughout my life: I would be told by people I sigh a lot, but I did not notice it – it turns out I have always struggled to fill my lungs with air. I was also always a very fidgety person, never able to sit in one position for long.
Some upper respiratory bug caught me in the fall of 2012; it wouldn’t go away. I went to urgent care twice in two weeks for a pneumonia scare and a heart attack scare, but each time nothing was discovered. When doctors tried to give me anti-anxiety and anti-depressants, I did my own research and discovered I had inherited my father’s disease. This was days after my 26th birthday in 2013.
I didn’t connect all my symptoms to the same disease until after I was diagnosed.
Do you have a constant level of pain, or does the level change?
I do not know what it is like to be without pain. While I do have what I call my “base level” of pain, it fluctuates. Some days I have less, but many days I have more. When I have a flare the pain is debilitating. The intensity of the pain is different in different parts of my body. For example, my lower back is in constant, extreme pain. Recently my wrists and hands have had intense pain. While certain parts of my body have more pain, I have a dull, achy pain in every single joint.
Does the weather affect your mobility and pain?
Yes. Extreme temperatures can cause flares, but more often cold weather does it. Humidity affects my ability to breathe, which affects my ability to function (sleep, talk, walk, etc). Rain or pressure systems cause debilitating pain, fatigue, stiffness, and inflammation (widespread, but it is easily seen in my hands).
Is there a point where your walking will be completely affected?
My walking is already affected in that it is difficult for me to walk farther than say, a 1/4 mile, without worrying about flaring later (or just being worn out for that day and the next). Walking also hurts my back and I have to bend forward slowly to stretch and pop my vertebrae to feel relief. If my spine and hips were to fuse completely, my walking would look very different, like a shuffly limp.
When I travel or expect to be walking or standing for a considerable amount of time, I take my cane so I can lean on it to support myself and to rest, or I use a wheelchair. As far as my walking appearing different, I don’t know if or when that might happen. There are days that it is painful to do anything, so walking from my bedroom to the kitchen probably looks funny, but I get through that.
There are many people who have AS who use wheelchairs, and they are all ages. Disease prognosis is different for everyone.
How do you respond to the “But you don’t look sick.” statement? I hate that one.
“But you don’t look sick” comes in a variety of ways:
“But you are so young and beautiful!”
“You look so good, are you feeling better?”
“I thought only old people got arthritis.”
“At least you still look good.”
“Well, you’re not in a wheelchair, that must be a relief.”
“You just hide it so well.”
I’m still working on how to respond, and what I WANT to say is, “You don’t look ignorant.” But I don’t. Nowadays I have my business card with me and I encourage the person to read my blog because I rarely have energy to engage in a conversation. But when I do engage, I educate – and usually that becomes a powerful experience even though the strain is on me to use my voice even when I don’t want to.
What is the best way to encourage those with AS?
Just let us know we’re still valued and that you hear us. Also, one step further is to help us increase awareness. You can also read this blog post to learn more about supporting loved ones with AS.
How does it affect social life?
A lot. Pain and fatigue keep me home a lot. Lack of sleep on top of that makes it mentally difficult to interact with people. Since I’m unable to work, I miss out on a lot of opportunities to interact with and create friendships with coworkers.
Are the treatments the same as other autoimmune “rheumatic diseases?”
First, AS is not technically considered autoimmune – research does not show that the body is actually attacking itself in a way that can be defined as autoimmune (AS does not have the auto-antibodies that are present in autoimmune diseases). We call it an immune-mediated inflammatory disease, although many people are not aware of this. If you want to read more, follow any of these links: James T. Rosenbaum, M.D, discusses AS with SAA, Dr. John Reveille answers the autoimmune question at minute 32:24 in this video.
Second, many of the treatments are similar to major rheumatic diseases when it comes to the use of biologics, but there are small differences – such as research that says pairing Humira and Methotrexate does not help AS in the way it helps RA (AS patients are suggested to stick to just the Humira, not with methotrexate, unless they have peripheral disease activity). The biologics that are approved for AS are Anti-TNF inhibitors, and recently, IL-17 inhibitors, and more are in the works.
Third, some patients claim that a change in diet helps them. Still others find relief from symptoms with acupuncture, massage, exercise, cannabis, and various other non-western treatments.
Finally, AS falls under the umbrella term Spondyloarthritis (SpA) or Spondylitis (other SpA diseases: undifferentiated SpA, juvenile SpA, enteropathic arthritis, reactive arthritis, and psoriatic arthritis) and all of these diseases, while similar, are treated slightly differently.
Does standing in one place for many hours exacerbate the pain?
Yes, it hurts to stand even five minutes in one place. My back gets extremely stiff and the pain makes me wince, gasp, and sometimes cry. I take my cane when I expect that might happen, or my wheelchair. It hurts my lower back initially, then the longer I stand the more it hurts from mid-back down. If I don’t sit or try to stretch (which looks weird and embarrasses me, oddly), I run the risk of my back spasming/convulsing all night followed by a flare of other symptoms.
When is other people’s caring and concern too much? How do you deal with people “just wanting to help” when it’s nowhere near what you need/want?
I am always appreciative of people caring and being concerned, but like you suggested, it is all in how that care/concern is implemented or broached. I will say that there is freedom for me in writing my blog because I feel that it is the only way I can get out my feelings in a comprehensive manner. But it sometimes serves as a trap for me because people may think I want to talk about it all the time, and I sometimes I’d just love to talk about what book I’m reading.
I have gotten and am getting better at being clear about what is helpful and what is not, and part of that is simply saying, “No thanks,” or, “Could you help me wash some dishes instead of telling me about the latest cure you heard?” I’m the kind of person who was always able to say, “Yes!” to everything, so learning to say no or ask for a different offer is a radical shift for me. It is also very difficult for me to accept help because in my mind I still want to maintain that I’m stubbornly independent.
It is helpful when people offer direct help, like, “Can I buy you some groceries?” or bring me a fresh-cooked meal. It’s also helpful for me to ask for specific things, like help cleaning or rides to the doctor. When people say, “I’d love to help, let’s set up a time to do whatever you need.” I kind of run away screaming in my mind because “whatever I need” is overwhelming to think about (like, I need a cure yesterday!). I’m also intimidated both because I have limited energy and never know what my days will be like. Planning something ahead of time is a mixed blessing; having something on my calendar gives me something to look forward to, but if I end up having to cancel I feel even worse from letting not just myself, but others, down.
Are there supportive objects or clothing or anything that minimize AS’s effect on your activities?
I have and use several pairs of Imak brand compression gloves made for arthritic hands. I have had extreme pain in my hands and wrists and the gloves provide compression and stability and also reduce inflammation.
I wear wrist braces off and on during the day for my wrist pain.
I use a cane for support if I expect to be standing for longer than 5 minutes or so, and my wheelchair if I will be standing or walking for longer than thirty minutes.
I have always had tight IT bands (outer hip down to the knee), whether or not that is related to AS, and I use a foam roller to alleviate that tightness so I can walk without pain there.
I use a pillow when I’m traveling or expect to be sitting for a while.
I use a jar opener adapter to open lids.
Biofreeze and Tiger Balm are a couple topical creams I use regularly.
Questions and answers about other stuff:
Be the first to ask a question about other stuff! Comment below – don’t be shy!
FYI: I am not a doctor. All answers are from my own experience and should not substitute for doctor advice or care. If you want medical, research-related, statistical information about Ankylosing Spondylitis or Spondyloarthritis, visit the resource page.
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