It’s no secret that 2019 hasn’t been much of good year when it comes to making progress regarding my disability and constant pain.
However, the best thing that has come out of this year has been the concept of listening to my gut. Literally.
My gut told me Botox wasn’t right for me and the very – heavily backed by research – fear that I had of having damage in the nerves of my neck, became a reality. One that has made my upper back pain and neck tension more severe than it ever has been, and often times more problematic than my actual migraines.
Muscle pain and tension has pushed me all year to seek out answers deeper than migraine.
In the Spring, my first go at this was met with harsh accusations and doctors who didn’t want to treat me as an individual patient, but rather the next chart on their schedule of 15 minute increments.
And I’ll tell you, my gut hurt despite them dismissing me.
At that point, it was an inflamed colon, but something else has continued to hurt.
Dietary changes helped ease the colon pain and have helped it from returning, but the constant sharp pain surrounding the right side of my abdomen and under my rib cage never lets up.
This last week has been an especially painful bout that I believe was heightened by also having the flu for 3 weeks.
Primarily focusing on food to help my painful abdomen has done alright, but it isn’t enough.
The abdominal pain, however isn’t alone – my upper back, shoulders, neck, lower arms, wrists, and the sides of my thighs are often in moderate to severe pain. Pairing the widespread, chronic pain, with my history of injuries further complicates it.
I injured my knee as a freshmen in high school – this same knee hurts from time to time and is the same leg where the thigh pain is often present.
I injured my shoulder and the connective tissue my junior year of high school which has resulted in long term knots in the respective muscles.
My freshmen year of college I ended up with severe, bi-lateral carpal tunnel.
All of my most problematic areas coincide with an injury that has occurred – but at what point do we question if it’s simply how our bodies work versus an underlying cause that has prevented proper healing or perhaps was the root cause for the injury to begin with?
Which left me with a potential diagnosis to explore with my doctor: fibromyalgia
Fibromyalgia is characterized by widespread muscular pain accompanied by fatigue, sleep, memory and mood issues. According to the Mayo Clinic: “symptoms sometimes begin after a physical trauma, surgery, infection or significant psychological stress.” From my perspective, this seems most accurate with my symptoms and would explain why the pain exists where injuries have previously occurred in addition to why it has become more prominent as my migraines have gotten worse – I’d say disabling migraines can cause psychological stress. However, because migraine is my primary diagnosis its difficult to tell if the fatigue, memory issues, mood swings, and sleep troubles are caused by migraine or fibro, or both.
Other symptoms of fibro include: abdominal pain, back and neck muscle pain*, fatigue*, constipation*, nausea*, anxiety*, mood swings*, nervousness, forgetfulness*, lack of concentration*, cold/tingling hands, pins and needle sensations*, disrupted sleep*, headache*, sensitivity to cold, irritability*, joint stiffness. (anything with an asteric (*) also overlaps with migraine.
To my doctor, this all appeared very feasible even though we agreed that the pain possibly caused by fibro is not my major health concern – migraine is.
After a brief physical, and a more in depth poking and prodding into the right of my abdomen, we’re exploring two possible options:
- Something is very wrong with my gallbladder, which is to blame for the abdominal pain and the rest of my symptoms are simply migraine related and the results of injuries that will always be an issue.
- I have fibro and in testing a new medication – if it works – I’ll have a legit fibro diagnosis compared to the current hypothesis, and in turn less pain and hopefully less of the fibro related symptoms like brain fog, nausea, pain, and cold hands.
Next month, I’ll have a very less than pleasant ultrasound of my gallbladder which will provide answers for the first option. Thankfully, we don’t need gallbladders to live so they can just go ahead and take that out. The “less than pleasant” part comes in prior to the test where I’ve been ordered to fast before my appointment – and if you’ve ever read any of my pieces discussing morning routines and how important the process I go through is, you’ll understand why not being able to eat at the proper time, having no liquids, and not being able to take my medication leaves me in a very painful spot.
Roughly a week later, I then follow up with my doctor regarding the new medication (Gabapentin) to see if I’ve noticed any changes.
To me, this is all good and exciting news.
I’ve made next to no progress when it comes to brain pain and migraine management – if anything, I’ve gotten worse at it now that I don’t even have medication that works for the worst of the pain. Even my neurologist has had to step back on seeking new treatments since I’ve had nothing but major reactions, some allergic, limiting viable treatment options.
But, having a new medication for a totally different condition is huge. If I am in fact experiencing a host of symptoms because of fibro, rather than migraine, the path to general pain management gets easier if one of the fibro medications provides much needed relief.
I can thank my gut. Even if the abdominal pain is completely separate from my existing conditions, allowing myself to look at my entire body and look for conditions beyond migraine that could be causing pain gives me treatment options that didn’t exist before.
Unfortunately, I also can thank my gut for deciding it hates potatoes. I don’t know what it is about them, but when consumed they cause tremendous amounts of pain – so no more potatoes for me.
1/23/2020 Update: In December, we decided to increase my dose of the Gabapentin as I was tolerating the medication well. After an addition 2 1/2 weeks, there was no improvement and an increase in days where I felt rather zombie like – similar to brain fog but not connected to my migraine pain or symptoms like normal. The medication was discontinued and a Fibromyalgia diagnosis is primarily off the table.
12/4/2020 Update: I received a diagnosis this past summer, many of the symptoms can be attributed to Psoriatic Arthritis (you can read about that here). I am also now currently in the process of getting a confirmation of IBS providing a diagnosis for the other symptoms.
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