“I’m Walking on Legos”

And It Doesn’t Feel Good

This past week I’ve been away from my writing desk while we visited my father in Tennessee.  During that time, I scheduled pre-written posts to fill the gap, but now I’m back to creating new work, and it isn’t easy. 

This morning, I planned on writing a piece about our trip and the mutual journey through life we all share, complete with photos, but I couldn't enter that flow state to create anything good. Because I’m in too damn much pain.

What hurts you ask?  Everything.  My joints, my bones, my skin.  My hair hurts too much for a ponytail or clip, so I’m wearing a headband.  Anything tight on my body is out of the question, including a bra.  I put on a clean pair of pajamas after my shower to endure the least amount of fabric friction against my skin. 

My teeth and jaw ache, so chewing is off the table.  Soup and smoothies are on the menu for today.  Every step feels like I’m walking on Legos, made of broken glass, and they’re on fire.  In fact, all of my nerve endings happen to be on fire, from my fingers to my toes.  Speaking of which, my fingers are so swollen I can’t remove my wedding ring.

Gidget McFidget is prepared in stay in bed with me all day if necessary.

With only three hours of sleep due to pain waking me throughout the night, I’m surprisingly alert this morning.  I’m sure it will end soon, so I better write while I can. I’m not writing this for pity.  Everyone has pain at some point in their lives.  Mine has come and gone for the better part of twenty years. 

Shortly after my first heart transplant, I suffered a migraine so intense it blinded me while I felt around for the bucket near my head which I used as an emesis basin.  Jay rushed me to the emergency room at my transplant hospital where they ran several tests, including a head CT.  As a last resort, they performed a lumbar puncture, or spinal tap, to rule out meningitis.  That showed no infection.  I’m grateful that the LP did no damage.  A friend of mine who had her heart transplant at the same hospital presented with similar symptoms a couple years ago, and the LP damaged her spinal cord, leaving her with permanent paralysis. 

For a decade, I saw pain management specialists, chiropractors, massage therapists, along with neurologists, treating my migraines which stole multiple days from me every month.  My two stepsons despised the sound of me screaming into the toilet, but I’ve never been able to purge silently.

When I experienced those migraines, I often had full body pain like I’m experiencing this week, but the pain in my head and neck obscured any sensation elsewhere in my body.  If you can imagine dropping a brick on your big toe at the same time as being punched in the eye by a heavyweight boxer, you can see how the brick would be inconsequential.

The hospital which performed my second heart transplant changed me to a different cocktail of medications, and the migraines stopped.  The primary anti-rejection drug I had taken for thirteen years listed headaches as a known side effect.  Thirteen years of seeing specialists, getting injections in my head and neck, missing time at work for those appointments as well as sick time for the migraines, using all my vacation for sickness so that I never had the ability to take an actual vacation – all that suffering could have been avoided with a medication change.

Still, all is not wine and roses.  Actually, I don’t like wine, and I prefer lilacs to roses.  My current drug regimen includes a chemotherapy drug whose off-label use can treat a specific form of rejection – known as Coronary Artery Vasculopathy – in heart transplants.  This drug knocks me out and makes me feel sick for a few hours every afternoon.  I’ve learned to manage my time by getting up early and making the most of my mornings, then lunch and a siesta, followed by another good stretch after dinner.

The medication insert for the chemo med lists potential side effects which include tingling hands and feet, fatigue, and nausea.  When I mentioned this to my transplant team, the doctor seemed surprised, stating those are not known side effects to his knowledge.  He thought those symptoms sounded like fibromyalgia and suggested I follow up with my primary care physician (PCP).

My PCP ordered the basic bloodwork for inflammatory markers and referred me to a rheumatologist when the tests showed nothing. I prepared for the appointment by creating a document with my family history and a list of my symptoms and noted triggers.  The rheumatologist told me to put the document away.  When I tried to tell him about my late mother’s symptoms of pain in her legs and hands and diagnosis of MS in the early eighties, he said, “I don’t want to hear about a diagnosis a doctor made forty years ago about someone who is now dead.”

Stunned by his dismissal of family history, I tried to give him my list of symptoms to which he replied, “Don’t come at me with a list.  I’m not Santa Claus. Tell me one symptom that’s bothering you today, and we will treat that.”

Facebook meme - artist unknown.

My worst problem was the inflammation of my IT band which made walking very painful.  He prescribed physical therapy. As he scratched out the order on his notepad, I tried to describe my second most pressing issue, my swollen hands, but he held up one finger to stop me and said, “You came to the doctor to hear what he has to say.  So, stop talking and listen to the doctor.”

The next time I visited him, two months later, I wanted him to address the issue with my swollen hands and trigger thumb.  He ordered an X-ray, but the machine in the office was not working so he suggested we deal with that on my next visit in another two months. My impression, based on the overflowing waiting room, was that he kept his patients on a steady assembly line of follow-up visits to maximize his revenue.  I did not return to him.

The second rheumatologist I visited was a woman with a six-month waiting period before I could see her.  On the first visit, she listened to what I had to say and did a thorough physical examination then had me fill out a questionnaire about my pain and locations.  At the end of the visit, she diagnosed me with fibromyalgia and prescribed medication.  Unfortunately, the prescribed drug was a Non-Steroidal Anti-inflammatory Drug (NSAID).  I can’t take those due to my transplant medications and told her so.  Next, she offered Cymbalta, an anti-depressant shown to help with nerve pain.  Again, I had to decline the drug because my PCP had already tried it.  I have a history of bad reactions to anti-depressants and this one was no exception.  Her final offer was gabapentin, but on previous attempts it knocked me out like a sleeping pill.  I already have one medication that does that to me. I don’t need another one. 

Frustrated, she told me that if I could not take any of the medications she wanted to prescribe, there was no point in seeing her.  She dismissed me from her care and referred me back to my PCP.  Demoralized, I left her office and never sought out another rheumatologist.  It’s been nearly eighteen months since that encounter, and I still feel embarrassed, like she thought I was wasting her time.

Again, I’m not writing this as a pity party.  This is an example of the life of a person who suffers from a chronic illness.  My original pain was eclipsed by the migraines, which turned out to be drug-induced.  The body pains have grown worse over time, and I can’t honestly say if they are medication side effects or an underlying condition that is exacerbated by the medications. 

My PCP has been understanding and ran bloodwork which ruled out lupus and rheumatoid arthritis.  I’m grateful those are off the table.  The diagnosis of fibromyalgia seems more like a rushed catch-all diagnosis from the second rheumatologist. 

Recently, in a support group with other women with hypertrophic cardiomyopathy, I discovered that three of them were diagnosed with psoriatic arthritis.  Dr. Google tells me that hand swelling, tendon issues such as my plantar fasciitis, trigger thumb, and IT band problems could be symptoms.  The jaw and teeth pain along with my swollen left eye during a flare have been associated with the disease. Each of the three women confirmed their own sensation of walking on Legos, especially in the morning.

Now, I must consider whether I want to subject myself to yet another doctor who might dismiss my concerns or become frustrated with the unique restrictions of being a transplant patient.  But I have to do something.  The only medicine that touches this pain is ibuprofen; however, it’s forbidden by my transplant team because it can cause damage to my kidneys. 

Despite the daily transplant medications which assault my kidneys daily, my lab work still looks good.  One doctor dubbed them “cast iron kidneys” since most heart transplant patients require a kidney transplant at the same time as a second heart transplant.  I should avoid anti-inflammatory drugs if I want to keep my kidneys healthy, but sometimes I need to weigh long-term health against just surviving the day.  Drinking extra water helps flush out the kidneys, right?    

Thank you for bearing with me on this lengthy rant.  In what ways have you been frustrated with seeking a diagnosis or treatment for a chronic condition only to have the doctor dismiss or ignore you?

If you’d like to support my work without a paid subscription you can do so by:

·                 ‘Hearting’ this post and others.

·                 Leaving a comment (I respond to each comment).

·                 Sharing this post by email, Notes, or on social media.

·                 Recommending my page on your page.

Thank you for being one of my readers, I appreciate every single one of you very much!