Once more, I am participating in A Chronic Voice’s monthly linkup.  For reasons that will become apparent as you read, this is also my post this week!

Prompts: Meeting, Advocating, Tweaking, Working, Curating

These prompts together make me think of the fight so many of us with disabling conditions and chronic illnesses have to consistently participate in to properly care for ourselves and get the medical community to understand our struggles and meet our needs.  

Meeting the right doctor

All doctors are not created equal, and many doctors seem to be satisfied with the status quo and are disinterested in really working with their patients. Because of this and the vast amount of medical knowledge out there (that is not always fully understood even by medical professionals), we often find ourselves meeting with multiple specialists before we find one who may actually be able to help us.   

I saw three different neurologists before my FND was diagnosed(it was called Conversion Disorder at the time). FND is not a rare illness, being about the second most common reason patients go to neurologists. Despite that, a huge number of us are improperly diagnosed – either as having FND when in fact there is another, often rarer, condition actually occurring, or by being repeatedly told that we are making it up and do not have a neurological condition at all.  

Either way, I have found that I have had to put a lot of effort into advocating for myself – and I know others with FND have had an even more challenging time than I have.

The first neurologist I saw decided that I was having a severe reaction to stress, put me on some clonazepam and wished me well.  My symptoms did slowly recede over time, so I accepted her initial explanation to some extent(and it wasn’t incorrect, as FND appears to often be stress and trauma-responsive).

When my symptoms came back with a vengeance another year or so later, I went to a neurologist who specialized in seizures and seizure disorders(we couldn’t think of a better description for the often violent and intense movements that I had).  He repeatedly tested me for epilepsy, and when he couldn’t find any evidence of it, he eventually referred me to the center for Parkinson’s disease and other movement disorders in NYC.

I saw a psychiatrist during my hospital stay who made multiple observations of dubious value but failed to identify my movements as conversion symptoms.  I   continued to push, meeting with multiple doctors and advocating for a diagnosis that made sense.   I finally ended up being correctly diagnosed with Conversion Disorder 3 years after my symptoms became glaringly obvious, about a month after my hospitalization.

I have, over my 18 years of being treated, curated a list of doctors who I know and trust well enough to be able to look over my symptoms and help confirm if I have something that does need other medical treatment, or if I am experiencing a new conversion symptom.

Advocating for yourself

I also had to advocate for myself for pretty much every treatment I received. It was my research and curating of data that led to me discovering useful treatments for FND – my connection to FND Hope led to my being treated by the MoRe program in Louisville, Kentucky, and my self-advocacy that led to me being correctly diagnosed and treated.

I have found myself tweaking the recommendations and, often with guidance from the appropriate professionals, adjusting my expectations and experimenting with treatments.  Generally, standard recommendations haven’t worked for me without major adjustments in the process.  

My primary symptoms are movement symptoms, so are the opposite of subtle.

I spend a lot of time, energy, and effort working on finding the best way to manage my condition, finding doctors who either are knowledgeable about FND or are willing to work with me after I explain my diagnosis.  Many times, I will have new or unusual symptoms that are best diagnosed by seeing a doctor who specializes in the apparent symptom and can confirm that I don’t have what it looks like I have.

For that purpose, I have had appointments with a urogynecologist, a reproductive endocrinologist, an ophthalmologist, my GP, urologists, and of course my neurologists.  The leading cause of death for people with FND isn’t the condition itself, it’s having a different condition masked by FND that isn’t recognized until it’s too late.

So every time I have an FND symptom shift(which is part of how the condition works and happens relatively frequently), I need to confirm that I don’t have some other health concern, as well as figuring out how to manage what I hope is just a new conversion symptom.  

Altogether it’s a lot of work, especially knowing how few doctors really understand what FND is and how it works, leading to occasionally seeing doctors who refuse to acknowledge my FND diagnosis and misdiagnose me as having a different condition.

Tweaking treatments so they work for you

Any time I physically relax, the symptoms are likely to increase(as I am releasing control a little bit) and any time I am under stress in any form(including happiness or excitement) my symptoms are likely to happen.  

I have had many people recommend meditation, for example, but it is challenging for me to meditate as it’s actually an extremely physical process for me. If I try to sit and breathe deeply, I start rocking, shaking, or rotating in place, often with pretty severe forward motion!

Through experimentation, I have found that the only safe way for me to meditate or consciously relax is if I am lying on a large soft surface like a bed or a mattress – if I’m having a really good day, I might be okay on a couch, but I run the risk of rolling myself off of it!  

In relaxing, I also release the control I am constantly using(without thinking) to keep my body movements minimal, so I instantly start to roll around or kick my feet, or other distracting motions. I have worked to simply accept those movements as part of my meditation process and lose myself in the moves just like most people try to lose themselves in their breathing.

Most relaxation processes I read about or movement-related treatments I explore assume that stillness is the default and that just isn’t true for me.  I make the adjustments and tweaks I need in my life to manage my condition, but it is frustrating that pretty much every treatment out there makes assumptions that simply don’t fit my condition.

Managing my expectations: My current struggle with bronchitis

Two weeks ago, I started having temperature dysregulation issues – I suddenly would start sweating even though I wasn’t feverish. I felt a little off and out of place, had a headache, and my nose was stuffed up.

I started having FND symptoms that I hadn’t had in years – my head slamming backward, my legs nearly collapsing, more prominent limping – and I needed to figure out what was going on.

one of the few positives of being sick – kitty cuddle time!

Last Thursday, I dragged myself out to see my neurologist, who comforted me. 

The temperature issues were most likely from my body fighting a virus, and the conversion symptoms were my own body’s stress response to the infection.  He feels confident that once I recover from this bug, I should be pretty much back to my normal self.

I ended up going to my GP’s the next day, and saw a new health professional.

Working with new doctors when I am sick is a bit stressful, as I never know how they will respond to my conversion symptoms – and I am in no shape to try to manage my symptoms, and am not feeling particularly eager to get into a big discussion about my FND.

Since being sick is very stressful on the body, my symptoms are glaringly obvious – almost constant rocking and frequently limping when I walk.

The nurse practitioner who saw me initially(my GP was booked up that day, but is part of a decent-sized practice) handled things pretty well, and I felt very lucky to have a good rapport with her pretty quickly.  I have bronchitis, which was brought on by the virus that my body had apparently been fighting for a few weeks now.

The second visit, when the first round of antibiotics didn’t work, didn’t run as smoothly.

That doctor also had never heard of FND before, and my movements were severe enough that I couldn’t even stay still for having my blood pressure taken.

While taking my blood pressure, not only was my torso shaking, but my left arm was kind of moving all around(the cuff was on my right arm and I was focusing on not moving it, by shifting the movement into my left arm). 

She reached out toward my left arm, and my whole body reared backward, my legs stood straight out, and I doubled back over(apparently I also said ‘no’ pretty loudly too)

This surprised and scared her a bit, I think – she then asked permission for each step in the exam(‘can I look in your ears now?’).

My movements were in response to the idea that she might try to restrain me – my symptoms always increase when there is any hint of somebody intending to force me to stop moving. 

One of the many challenges working with new doctors while managing my FND symptoms – especially since I’m very responsive to the emotions of others – so if the doctor is anxious, that also increases my symptoms.

I just did some research and it looks like the CDC is now opposed to using antibiotics to treat bronchitis.  It may be helping in my case, as my nose is starting to clear, but that could also be the virus running its course.  Either way, I am feeling a little better, but nowhere near my usual self.

I also apparently am suffering a bit from an allergic reaction to something that I took, so on top of having trouble breathing and severe coughing fits, I’m also going through periods of severe itching all over my body.

I suspect it’s a reaction to the inhaler I was prescribed(the other possibilities are the cough pills that I stopped taking when the itching started or the antibiotics, which changed), but I don’t have the energy to advocate for a change of treatment at the moment. Also, thanks to my insurance, that inhaler was more expensive than all my normal monthly medication expenses combined.

The itching isn’t constant, but it does mean Al and I are also a little extra vigilant for more severe allergic reactions(like hives or my tongue swelling), which would necessitate an emergency room visit.

For now, I need to take things as easy as possible and take the best possible care I can of myself- lots of fluids, lots of rest, and taking my meds as scheduled. Hoping I will feel well enough next week to get fully back to my regular form of posts.  How have you managed your medical fights?

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2 Comments

  1. Thanks for joining us again Alison! This was an informative post, and yes sadly we need to advocate for ourselves in all areas of society 🙁 Hopefully this improves in the near future!

  2. I am sending you gentle hugs Alison. You did an a wonderful job explaining what you go through with your symptoms and trying to get doctors to understand. I have Fibromyalgia and I immediately understood somewhat of what you go through. Especially the “status quo” of doctors. It is like trying to find a doctor that actually wants to help you is like trying to find a diamond in the ruff sometimes. I wish you the best and am here if you need a friend.

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