Difficult Decisions in Difficult Times

Difficult Decisions in Difficult Times
4.3
(9)

I was faced with making a difficult decision this week. I’d been wait-listed with my neurologist to have another round of trigger-point injections. After decades of suffering, this treatment, administered monthly, had finally proven effective for my myofascial pain syndrome.

At my last appointment, on June 4, the wait time for my next appointment was estimated at four to six weeks. But nine weeks had passed so far. Of course, I’d made pleading phone calls in the interim. Each time I told them, “My nerve pain episodes have become more frequent again. I suspect the stress of the pandemic is contributing to my worsening symptoms.”

The reply was, “We’ve had staffing issues and have had to postpone all of our appointments.”

So, to say I was delighted to receive a call from neurology last week is an understatement. When told the appointment would be in five days, I was absolutely ecstatic. It’s commonly a three-week wait from phone call to appointment. 

And then the details were outlined. First, the injections would not be done by my usual physician. A doctor I’d never met would be doing the procedure. Additionally, the appointment would take place at a different location. At this facility, patients were required to sign in one hour prior to their appointment time. I wasn’t happy about the first change, but the second one caused alarm bells to go off and mild panic to erupt.

I wasn’t thrilled with the prospect of spending any time in any building — mask or no mask — where people exposed to the coronavirus (or even symptomatic people) likely had been. But I reasoned that just as I’d done on June 3, I’d be in and out in less than 20 minutes.

However, this was a very different situation. I was being asked to spend closer to 90 minutes there — the required 60-minute wait time, plus an estimated 30 minutes with the doctor. Perhaps it would be even more because it was a doctor I didn’t know. These conditions were unknown to me when I’d pleaded for this appointment. It was then that I remembered my mother’s admonition when I was a child: “Be careful what you wish for.” 

I was frightened. However, I accepted the appointment, mostly as an opportunity for time to make a logical decision. Immediately, I began to assess the facts. 

My husband and I are both considered high-risk for the coronavirus. I’ve contracted every cold, flu, and miscellaneous illness that’s come along since I was a child. And my experience is commonly more severe and longer-lasting than the norm. My husband has several common ailments that accompany aging. As a result, we’ve both been extremely diligent about taking every possible precaution.

Wearing masks and social distancing are things we do routinely. No one else has been in our house since the beginning of March. The one exception was to have a new refrigerator delivered (definitely an essential). We’ve had no social contacts except with people who are across the street or with people we occasionally encounter in passing as we walk through our neighborhood. Our social interactions happen on Zoom.

Immediate family members have visited twice since March. Each time, we sat in the back yard at least 10 feet away from one another while wearing masks. Groceries are delivered to our front door. Everything else is purchased online. We leave the house only to walk our dog or for essential appointments. 

Previously, my neurologist’s injections qualified as essential. However, given the circumstances described to me, I reconsidered. An attack of excruciating pain usually lasting four to six hours was preferable to subjecting myself (and my husband) to the conditions we’d been diligently avoiding. At this moment, avoiding the coronavirus had to be my first priority. I postponed my appointment.

It was a terrible decision to make.

***

Note: Fibromyalgia News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Fibromyalgia News Today, or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to fibromyalgia.

Diagnosed in 1990, Christine has experienced fibromyalgia (FM) symptoms since childhood. After a career in aerospace finance she was trained as an FM support group leader by the Arthritis Foundation and participated in groups on both the east and west coasts. Designated a Leader Against Pain by the National Fibromyalgia Association (NFA) she advocated for increased funding and awareness for FM. She is the author of “More Than Tender Points: A Fibromyalgia Memoir,” available on Amazon. An Upstate New York transplant now living in Southern California, she credits the sunshine for improving her symptoms.
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Diagnosed in 1990, Christine has experienced fibromyalgia (FM) symptoms since childhood. After a career in aerospace finance she was trained as an FM support group leader by the Arthritis Foundation and participated in groups on both the east and west coasts. Designated a Leader Against Pain by the National Fibromyalgia Association (NFA) she advocated for increased funding and awareness for FM. She is the author of “More Than Tender Points: A Fibromyalgia Memoir,” available on Amazon. An Upstate New York transplant now living in Southern California, she credits the sunshine for improving her symptoms.
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12 comments

  1. Kathy says:

    Hi, My ex husband was very physically abusive to me. Have you ever heard of people that were abused in their teens and beyond being affected with fibro? Thank you.

  2. Patricia Gorsin says:

    Hi Christine,
    Just wondering what your Dr. uses in the syringe and does ur insurance cover the injections ? Hope you are feeling better. Thanks, Patti.

    • Christine Lynch says:

      Hello Patricia
      My doctor uses lidocaine – sometimes with and sometimes without a steroid added to it. And yes, my insurance covers the injections.

  3. DM says:

    I was diagnosed with Fibromyalgia 20 yrs ago but had it for yrs before they put a name on it. The skin pain was manageable, tolerable until a couple of yrs ago. I developed Fibro fog. Thought it early dementia as it runs in the family. Then the rashes started about a yr ago. Didn’t itch as much as burned like a sunburn. Bumps developed that didn’t go away and felt like hundreds of little paper cuts. I couldn’t bear rubbing let alone scratching my skin. I am a diagnosed hypersensitive which in my opinion covers emotions that manifest into physical anomalies. Having endured traumas starting at age 6, I’ll be 68 in a couple of months, the most recent and most devastating 7 yrs ago causing a nervous breakdown. They don’t call it that anymore but that’s what it was. I’m still picking up the pieces. I can only hope and pray they find a cure or a medication that “fixes” the flares. I do recommend cannibus. It helps!

    • Christine Lynch says:

      Hi,
      Thanks for your comment. I too am hypersensitive – to everything. That would include cannabis. I’m surprised you can tolerate it. May I ask in what form you take it? And how much you take of that specific type?

  4. DM says:

    Hi Christine. I smoke Indica (only!) and use the edibles. You might try the lowest THC percentage amount. Tolerance is an individual thing. You could try CBD oil but make sure it is 100% and You get it from a reputable company! You might also try acupuncture. The needles are extremely fine and do not hurt and it does work. Insurance can be an issue so check with your carrier. Learn how to decompress. To mentally, emotionally calm yourself. Meditate. Literally walk away from toxic people and situations. Stay calm and in control as much as possible. I know easier said than done but train yourself!

    • Christine Lynch says:

      I’ve tried many different THC:CBD ratios. Each one produced an unpleasant experience or had no effect at all. Sadly, I’m just someone who cannot tolerate foreign substances. I have tried at least 8 different acupuncturists over the last many years. The best ones were able to reduce my anxiety. But none of them were able to reduce my pain or improve my IBS. We’re all different. And I do meditate, and have done so daily since 1997. For me, massage is usually the most effective therapy – if only cost wasn’t an issue.

  5. MyraM says:

    Thank you for sharing your story. I live in a high risk area, and have come to terms with my own fears of going out in public with the current situation at hand. My FM was diagnosed 3 years ago but I’ve been suffering for longer without proper diagnosis. The current living situation has put me in place where my anxiety is more heightened than ever, causing even more pains. And to make matters worse I lost my mother during this time not to the virus but to other health issues. It left me without the ability to mourn her properly which led to even more difficult times for me. My family has been able to deal but it’s not the same for me, my constant pain and anxiety, the tender points constantly ache, my skin is on fire. I’ve even had multiple bouts with my IBS. Insommnia has now become my new best friend. I’ve turned back to pain meds on occasion with continuous arometherapy and massage as my alternative to days where pain meds do not work. Much success and many blessings to all who suffer in silence during these treterous times…

  6. DM says:

    Myra, my heart goes out to you. The anxiety is crippling! I have to prepare for days just to run to the market. This disease affects every aspect of your life and only those who have it truly understand. I’ve been called a liar, a fake. But at the end of the day it’s their problem and you have to leave it with them. I find I grieve life’s losses intensely, constantly. So I give into it when it washes over me, have a good cry, then get in with life. The hardest part for me is how alone I feel. How isolated I’ve become. People mean well when they say go do something. They have no concept of the depths the anxiety. How it’s safer at home. Even though you yearn to be out there. There are any things I’ve resigned myself and accepted that this is my life and that’s just the way it is. I’m still adjusting. I guess I’m many ways it’s a life long process. And that okay!! It is disturbing your doctor has you in pain pills. The only conclusion I can make is he/she hasn’t a clue about treating fibromyalgia/myofascial pain. Pain pills are not prescribed by any doctor knowledgeable with Fibromyalgia! They are addictive and one day you will have to get off them. Try Gabapentin or Lyrica if you’ve decided oral medication is your avenue for relief. There is no magic pill unfortunately. As for an acupuncturist, mine is Chinese and has a PhD in pharmaceuticals from China and 4 yrs of western medicine. She teaches a class at the local University that combines Eastern and Western medicine. Sounds like you’ve been to many but you need to do some homework to find one who knows what they are doing and are dedicated to relieving your pain. This path to find what works for you can be long and arduous. Can involve a combination of methods. Me…I’ve found several that makes the pain tolerable, manageable. But nothing takes it completely away. I try not to focus on it. I refuse to feed it, give it my power. comI envy those who can tolerate massage. For me the pain is too deep. You might try finding a grief councelor or therapist. With everything going online you might find one who will Zoom with you. Blessings and peace be with you!

  7. DM says:

    Sorry Christine, the acupuncture info was meant for you. Ultimately I can say I have tried all methods for relief for the pain and everything that goes with it. ie IBS, anxiety, insomnia, all encompassing grief, fibro fog, aching joints, teeth grinding, anger, etc. The methods that help are temporary and fluctuate with the degree and intensity of the pain. We can only really talk about what we’ve tried, what helps, and hopefully help each other. As I’ve said…no one knows except those that live with it. Find your peace. Find your new normal. Disregard the what used to be your old normal. You are unique and as individual as fibromyalgia is. I’ve discovered talking to you and Myra has helped me. Seems like this message is combined for both of you. I hope in some small way I’ve helped you both! Blessings!

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