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Predictable Unpredictability

Predictable Unpredictability

I’ve been suffering from a bad flare-up in both ankles and my entire right foot for over two weeks now, and it’s driving me crazy. The right ankle is much worse (more swollen and painful) than the left one, which is usually the pattern for some reason, whenever this happens. Desperation has forced me to go back on prednisone, taking 30 mg for the last two weeks. And it doesn’t seem to be helping much, which is exasperating and worrying. I’m mad.

Resting, elevating, icing, wrapping–I’ve tried just about everything with this right ankle. I even took over a week off from work to try to get this thing calmed down. Luckily my rheumatologist was able to squeeze me in for an appointment in a couple days and I really hope that goes well. I’m guessing I’ll have to have another MRI scan done and maybe I’ll be referred to another orthopedic specialist again. It’s exhausting just thinking about it. During the last nine years that I’ve had problems with my ankles, I’ve been to so many different doctors and I’ve tried several treatments. Steroids, cortisone injections, physical therapy, orthodic shoes/inserts, taping, wrapping, acupuncture, surgery. It’s all too much. And now I fear that it’s going to start over again. But what can I do? My entire right foot is in constant, throbbing-stabbing-shooting pain. I can’t adapt to this pain level and try to forget about it. But I’m also dreading getting more of a run-around and being bounced from doctor to doctor.

While the pain is certainly bad enough, the emotional stress this flare-up is causing might even be worse. I absolutely hate the unpredictability of this disease! And all of the unknowns, anxieties, fears, unanswered questions. The not knowing of how long a flare-up will last, or if  it will even go away, is maddening. That’s what I’m having trouble dealing with right now. Every time I feel a stab of pain in my foot I get a sinking feeling in my stomach, wondering if this is going to get better. Admittedly, I’m a pretty anxious, worrywart of a person. I’m also very impatient. These things don’t work well together when you’re in the middle of an intense RA flare-up, obviously.

How do you distract yourself while you’re going crazy waiting for it to end? How do you deal with the unpredictable nature of this disease? Zoning out in front of the TV helps a little bit. Or zoning out at my laptop, goofing around on Facebook or other social media. Even though I knew better, I Googled some questions related to my ankle problems the other night. That of course brought up all kinds of frightening, traumatizing things. Don’t ever do a Google image search for “ankle surgery,” by the way. Trust me. Instead of making me feel better, looking up medical stuff on the Internet made me feel more anxious and stressed. So for the time being, I’m going to resist the urge to get my questions answered by asking the Internet and reading patient forums and things like that. Too risky! I can’t deal with that right now. The Internet can be a wonderful, abundant source of information regarding health and medical issues. But it can also scare the crap out of you.

What else can I do to help get me through this? Talk to someone? Pray? Drink a bottle of vodka every night (I’m not doing that, by the way)? Other than falling into a self-induced coma, I’m kind of out of ideas. I did go out to see and photograph a band last night with my friend, despite wanting to stay home and off my feet. Luckily I didn’t give in to that urge and I went and had a really fun time. Continuing to do fun things, to live a “normal” life, is probably a good thing to keep in mind. So is remembering to hold onto hope, even when you don’t know what’s going to happen next with this sneaky, cruel disease.

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Comments

  • jaide winn
    6 years ago

    Angela, as I have written earlier, I also have lots of problems with my feet and ankles. But, I did find some ankle braces by Incredibrace. I have Incredibraces for my knees and my elbows, and I love them. They warm the joint and they really do make them feel much better. I had ordered some socks, but they were too big. I was in the medical supply store the other day and they had a display which had sized ankle braces on it. I bought 2 ($28 each, but worth every penny), and wore them out of the store. I have had them on ever since. They have helped the arthritis and also the postop pain from my 2 recent foot surgeries. You can google Incredibrace, there are several places that have them. They are definitely worth the money. Also, if your doctor will write a script for them, then it can be tax deductible. Hope you feel better soon. I feel your foot pain and it is NOT fun.

  • Mark
    6 years ago

    Hi Angela,
    The med that helped the most with my knees and feet was Celebrex. 400 mg’s a day 200 in the am 200 at night. This has been good for the past 6 months, but I have had to go back on prednisone when the flare pain out does the Celebrex. Hope this is helpful.
    Mark

  • Janine Thiemann
    6 years ago

    Having been in a constant flare for 16 years with no hope of any remission I can definitely say doing the activities you enjoy and still can do are a good distraction. I personally am a Christian so my faith keeps me going until my next challenge.
    I was curious as to whether you have any cartilage left in your ankles or if your doctors have offered ankle fusion as a viable option? My ankle was fused six years ago. I decided to “rip the bandaid” off and solve the problem. Not for everyone I suppose but pretty much after my disintegrated joints are replaced or fused my quality of life improves. I’m 51 and had both my knees replaced in last six months and have a new lease on life. I still have various other joints that are constantly painful but thank God most not weight bearing. Surgery a last resort but I figure I’m not getting healthier systemically so the time was now for me. I pray your ankles calm down and that they aren’t surgical!

  • Wren moderator
    6 years ago

    While it’s been a very long time since I had a flare like the one you’re having now, I do remember, exactly, how it felt. And so I can empathize, deeply, with what you’re going through. And even though I know it won’t help, really, please know I’m sending you my very best wishes in the hopes that your flare will take a powder very soon.

    Because they do that, too, don’t they. Just the same way they show up and disrupt everything. Suddenly. No warning. Without mercy.

    I was relieved to read your last paragraph. YES–the thing to do, as best you can, is to DO stuff even though it hurts. Have all the fun you can grab. Enjoy the sublime distraction from the pain. And know, like you’ve done every time before, that you’ll get through this one, too.

    Sending a warm hug and all the comfort I can muster your way.

  • jaide winn
    6 years ago

    I have lots of pain in my feet and have done all the things that were mentioned. I just now am recovering from having plantar fasciitis surgery on both feet, one was done in Jan. and the other in Mar. However, the pain is not the same, I still have it, and my ankles still hurt. I am still hoping and praying that with some time they will get better. It is so difficult not to have your feet and be so limited. I understand what all of you are going through. I have found a walker helps take weight and pressure off my feet and I have one that I can turn around and sit on for resting my feet. I also use a wheelchair if going a long way.

  • Mark
    6 years ago

    Hi Angela,
    I read your article and feel and understand your frustration and the pain. I also am suffering a flare up with my right ankle at the current time. I need more rest as the fatigue is really bad too.

    I am in the midst of moving from our home of 20 years as I am unable to maintain it any longer. I have recently been to a pain management doctor who has helped me greatly and the medication is working for the rest of my joints so far. Feeling this pain means that the flare up is severe as my knees, wrists and hands are in flare up too, but the pain in them is lessened by the meds.

    You did not mention seeing a pain management doctor in your article so perhaps you can find one. They are hard to find but perhaps there is one close to you.

    Remember that we (the other ra’s) understand what you are going through and wish you a speedy recovery from this flare. So do the best you can and keep your sprits up. thanks for sharing.

  • jaide winn
    6 years ago

    Mark, I have problems with my feet and other joints too. You mentioned meds and pain mgt doctor. I have a very good pain mgt doctor too, but could you share the meds he put you on? I understand if you don’t want to, but I wanted to know if it may be something I could try. Thanks.

  • Damian
    6 years ago

    Hi Angela
    I read your article the other night and couldn’t reply. The article is really well written. I hear you, I feel your pain, I totally sympathize with you.
    I agree that you can’t let the disease rule your life. Talking to other RA suffers is something positive.

    All I can really say is that I felt personally better after reading your story.I can relate.

    You wrote ‘Continuing to do fun things, to live a “normal” life, is probably a good thing to keep in mind. So is remembering to hold onto hope, even when you don’t know what’s going to happen next with this sneaky, cruel disease.’
    That there is the trick. If we can be reminded of this every day we might be able to feel ‘normal…again’

    I hope that your RA goes into remission 🙂

    Out of curiosity what pain killers do you use?

    Have a great day & thanks heaps for sharing

    Damian

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