Lessons Learned in Diagnosing Chronic Pain

Perhaps that title should read “Lessons Learned from Attempting to Diagnose Chronic Pain” since I still don’t have answers…  I haven’t written much lately due to some chronic neck pain/shoulder/arm that has been plaguing me for months. I come home from work exhausted and drained, and spending more time in front of a computer is the last thing I want to do.

Down the Rabbit Hole

Do you ever feel like the hassle and expense of getting to the root of a medical problem might outweigh the benefits of finding out what the problem is? For the last several months, I feel like I have gone down the proverbial rabbit hole in “Alice in Wonderland”, where everything is not as it seems!

   

I wrote earlier in March about this flare up/recurrence of neck/back/arm pain I am having. The spine and back doctor I saw never quite gave me a diagnosis, but thought epidural injections in my spine would help.  Not gonna lie. The thought of a needle in my spinal column was scary.

 

“It would be so nice if everything made sense for a change.”  ~ Alice in Wonderland

This drove me to seek a second opinion from the neurosurgeon who did my neck surgery five years ago. It took me over a year to get that issue diagnosed, so I felt like I was little more prepared this time around. The symptoms are similar to what I had then: pain in the neck, shoulders, and arm (mostly right), numbness of the right arm, muscle spasms in my neck and across my face. Clearly there is a pinched nerve of some sort, but getting to the root cause has been less than easy. And the symptoms have only gotten worse.

One Test after Another

My neurosurgeon said the first MRI didn’t give him enough information for a diagnosis, so he ordered a myelogram. If you have never had one, or heard of it, the procedure doesn’t last long, and it’s not painful (well, that is as long as they stay away from nerves – electric shocks down my buttocks and legs!). Once the dye is injected in your spinal column, there is a feeling of extreme pressure in your lower back that then moves as the dye flows down/up. A few images later, and you’re done. I made the mistake of lifting my head as I was going in for the CT Scan – killer spinal headache. After the procedure, it’s home to lie flat in bed for 24-28 hours.

This produced unremarkable findings. Really one of those good news, but bad news situations as I still have no answers.

Next was the Electromyogram (EMG) and nerve conduction study. Again, good news is there is no nerve damage. Bad news is, still no answers.

Finally, my neurosurgeon ordered a CT Scan with and without contrast to study the brain, and see if my pineal cyst had changed any. Still nothing.

So at this point he referred me for physical therapy and back to see my rheumatologist for my fibromyalgia and radiculopathic pain in my arm. Great, now I feel like I am just going crazy. Four tests. $1,800 out-of-pocket costs. Still no answers. At least a few things have been ruled out. I often wonder if it’s my fibromyalgia that is messing with me, but this pain is different. And difficult to diagnose.

“I am not crazy. My reality is just different than yours.” ~ Cheshire Cat from Alice in Wonderland

Curiouser and Curiouser!

Two days after my first physical therapy session, I was in the most excruciating pain yet. Pain pills didn’t touch it. I tried ice, pain pills, TENS, Motrin, more ice, and rest. I couldn’t move my arm without writhing in pain. I couldn’t drive or get dressed or do my hair. I was anxious and on edge. The physical therapist referred me to non-surgical back/neck specialist. The first visit to this office I walked away with a prescription for a baby dose of gabapentin to calm the overactive nerves (I am highly sensitive to drugs’ side effects),  orders for X-Rays and more specialized MRIs of my shoulder and brachial plexus nerve. The neck and head have been ruled out, so we are working our way down.

The Latest

The tests are scheduled for this Saturday, and a follow-up visit with the doctor next Monday. The estimate of my portion of the bill gave me sticker shock. Almost $2000! So I now I go back to my earlier statement… I am sitting here wondering if the expense and trouble of getting to the root cause of my pain is worth it. I worry that I will spend the money and still have no answers.

The X-rays showed some degeneration in my shoulder and recent scans have shown my osteoporosis is responding to medication and I now have osteopenia. So my hope is fewer tests might be needed. Expecting a call back tomorrow on that.

What I’ve Learned

I am hopeful that I will have some explanation and resolution for my pain soon. Having to deal with chronic pain makes life difficult. Trying to get a diagnosis can sometimes compound the difficulties! So much of my energy has been consumed with just getting up and getting ready for work, that my productivity has been impacted at work and quality of my life at home is suffering. So here are a few things I have learned during this latest journey:

1. Ask for a Second Opinion. Or even a third. If you’re not happy with what you hear, don’t be afraid to talk to another doctor. They call it practicing medicine for a reason — they don’t have all the answers. It’s your body and your medical treatment, so feel comfortable with what your doctor recommends. And don’t give up until you are ready to.
2. Do your research. I don’t mean google your symptoms on WebMD. That is a bad idea, although I have done it many a time! Read up on the procedures that are recommended and medications that are prescribed. Ask questions. If you are sensitive to medications like me, make sure you mention that to your doctor. Perhaps the normal recommended dosage can be adjusted for your needs.
3. Keep a medical journal. I started this back in 2011, but I have a OneNote folder where I keep track of symptoms, tests, results, treatments, etc. Helps me remember when I am filling out forms. And don’t be afraid to ask for a copy of tests or reports. I keep all of my MRIs and scans so I can easily provide them to the next doctor.
4. Ask for estimates ahead of time. We all know that medical costs are rising. Not a day goes by that there isn’t a news story about our broken healthcare system. Make sure you understand what tests are being ordered and what your cost is before you go, so you are not surprised and facing sticker shock at the last minute. This gives you time to investigate and make informed decisions.
5. Understand your medical plans and benefits. Take advantage of pre-tax flexible spending accounts if you have them. I also have a benefit with Compass to help us navigate our health care costs. They will help us look for cheaper options and review bills. (For example, a review of my upcoming MRIs showed the place I am scheduled is twice the cost of other providers.)
6. Don’t be afraid to ask for help. Sometimes asking seems like more trouble than it is worth, but when you can’t even lift your arm to do your hair or zip a zipper, sometimes assistance is required.
7. Take a little time for you. Take a bath, read a book, or binge watch Netflix. Do NOT feel guilty taking a little time to rest and recharge. Dealing with chronic pain is a constant energy drain and we need to recharge our batteries when we can. It’s OK to be a little selfish once in a while.

I am tired. I am tired of being tired and in pain. I miss sleeping through the night. Sometimes giving up seems like a better solution than going from one doc to the next, but I need answers. Answers, and relief.

“Begin at the beginning, go on till you come to the end, then STOP.” ~ The King from Alice in Wonderland

Do you have other things to add to the list? Have you had similar experiences with the medical profession, searching for answers?

Cheers!

Cynthia

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