08.18.2015

Playing the chronic illness blame game

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We often blame all of our symptoms on "just fibro," but it's not a good thing to do that, as I recently learned.

When we’re chronically ill, it’s easy to play the blame game. Every new symptom becomes part of the complicated mishmash of our illness. If our shoulder hurts, we think it must be a weird new fibro or ME/CFS pain.  If we feel dizzy, we chalk it up to excessive brain fog. If we’re super tired, we figure we must have overdone it the day before.

But as I learned earlier this month, sometimes that kind of thinking is a big mistake. Not everything is fibro’s or ME/CFS’ fault.

For the past few months, my feet have been killing me. I couldn’t stand more than two hours before the pain became excruciating, and I would have to sit out the rest of the day.

When I woke up in the morning, some days my feet literally hurt before they even touched the bedroom carpeting.

At night, the pain and burning were so bad that I couldn’t sleep. Even the sheets hurt! The only thing that helped was slathering my feet in a cooling peppermint foot cream, putting on some extra soft, fuzzy socks and taking a bedtime dose of Flexeril to knock me out for the night.

I bought different shoes, thinking maybe my sandals with their thick soles and arch supports weren’t worth the extra money I’d paid for them. I bought and returned several pairs of new shoes because I couldn’t find anything that was comfortable.

I’d read online that fibro can cause foot pain, so I blamed my symptoms on being “just fibro.” Finally, after months of suffering, I broke down and made an appointment with a podiatrist, thinking I would talk with him about getting fitted for granny orthotics.

Within one minute of the doctor examining my feet, he diagnosed the problem, and guess what … it wasn’t fibro-related! I have plantar fasciitis.

Two steroid shots in my arches (ouch!) and a $25 co-pay later, I walked out of there limping and mentally kicking myself for not getting my feet checked out sooner. I’d just spent months suffering from foot pain and limiting my activities because I assumed it was “just fibro.”

How many of us fall into that same trap and suffer the consequences because of it? Just this week, I read a post on Facebook from someone who had constant ringing in her ears. She blamed it on fibro. A couple of weeks ago, someone posted that she’d just lost her control of her bladder, and again, it was blamed on fibro.

Yes, fibro is known to cause bladder issues, and sometimes tinnitus (ringing in the ears) coexists with fibro. But what if, in those people, those issues aren’t linked? What if it’s a separate problem that can be treated, so that your quality of life is improved?

What if you’re suffering needlessly, like I did?

I think sometimes we’ve internalized the message that somehow we are hypochondriacs – to the point where we ignore symptoms that affect our day-to-day lives – symptoms that may be able to be fixed if they received proper medical treatment.

And here’s a question that concerns me even more: What if some of these “new” symptoms are actually signs of something more serious? Would we recognize that something was going on, or would it just become part of our new normal?

I’ve learned a very big lesson from this experience: I need to stop playing the chronic illness blame game, and so do you. Our health may depend on it.

Update as of May 2016…

Following my plantar fasciitis diagnosis, I underwent three sets of steroid injections in my feet, laser treatments (which cost $400 out of pocket!) and physical therapy (which cost another $500!). Nothing worked!

After months of pain and increasing burning, numbness and tingling in my feet, I sought out a second opinion from another local podiatrist and learned that I don’t have plantar fasciitis; I have small-fiber neuropathy, which is extremely common in fibromyalgia patients.

The typical treatment for SFN is Lyrica, gabapentin or Cymbalta, none of which I can take due to side effects. I’ve been trying an assortment of topical treatments to help relieve the burning and numbness/tingling. Some of them help, but none of them relieve my symptoms entirely. It’s pretty frustrating because my symptoms limit my mobility and how long I can stay on my feet.

Update as of August 2016 …

Well, the drama continues! Towards the end of May, I was diagnosed with chronic Lyme disease and other tick-borne infections. Turns out, the burning and numbness in my feet probably ISN’T small-fiber neuropathy. Bartonella, a common tick-borne infection, causes similar symptoms. This diagnosis actually makes more sense since my symptoms were limited to just the soles of my feet. I always wondered why three different doctors asked me repeatedly if I had numbness and tingling in the tops of my feet as well as the bottoms. Classic neuropathy typically causes symptoms in the entire foot – not just the soles. The fact that only my soles were affected should have been a clue for the doctors to look deeper, but I guess they were just trying to get to their next patient. Apparently, Lyme and other tick-borne infections are often misdiagnosed as fibromyalgia. Everyone with fibromyalgia should read this!

 






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Comments

  1. Such a good point, I say this to people all the time.

    I remember how I was suffering with severe food poisoning once, and ended up being hospitalised. I thought it was just a CFS/Fibro flare and the Dr never tracked me down (they called but didn’t leave a message and I was too sick to get to phone).

  2. Lynn Phillips says:

    You’re exactly right! The trick is how are we able to discern what is fibro and what isn’t. Ugh!

  3. Batavia Russell says:

    I have this EXACT problem. Thank you for the post as I’m sure you just saved me a lot of time finding solutions that don’t work. I use a pain cream & rest reclined a lot. Also, I never walk barefoot. I make sure I’ve always got 1 pair of shoes I found that are the most comfortable (bought several pairs). I also stood on that Dr Scholls computer at CVS & bought $60 inserts. Best thing I ever did. Just have to remind myself to replace them before pain sneaks up again.

  4. wow, great post! I couldn’t agree more! Last summer I was having horrible IBS issues (TMI-sorry!) and just chalked it up to the fibro. It got unbareable within two days and I ended up in the hospital. It was a bacterial infection similar to e-coli. I was on IV antibiotics for three days and sent home with 2 weeks of more oral antibiotics. It’s scary to think what might have happened had I never went in!

    • admin says:

      I’m glad you were able to catch the infection and get it treated. Yes, I see people (myself included) overlooking symptoms all the time, and it’s not a good thing. P.S. There’s no such thing as TMI when it comes to fibro and ME/CFS. That’s what makes the fibro and ME/CFS community so great b/c we all “get” others’ health issues.

    • Mine were killing me back and forth to the foot doctor until I quit taking Gabapentin it went away.

      • admin says:

        That’s great news! Glad you were able to find some relief. I’m in the process of getting laser treatments now. The steroid injections didn’t work for me.

  5. sheri says:

    I totally understand and do the same thing. I hate going to doctors so much I’ve developed white coat syndrome. So I just ignore most pains. My feet hurt too and have for awhile so maybe I should go in… .:(

    • admin says:

      Hi Sheri, I would encourage you to make the appointment just to get checked out. You never know…you might be like me where it’s something that can be treated and helped. Foot pain, in particular, is really hard to live w/ b/c it affects your day to day life so much. I’m glad I finally went and found out it was something fixable.

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