Chronic Illness Management Tips - Alexa
After first learning about my diagnosis I, of course, went online to find information. How do I live in a body that suddenly felt like the enemy? I didn’t find a community; all I found in my initial searches were articles about how Fibromyalgia is a fake disease. Now, this isn’t surprising since we still know so little about how the brain functions, since Fibromyalgia sufferers are typically women, and since it is a disease that doesn’t show up physically or on most tests. But the only impact these articles had on me at the time was making me feel more alone. So that no one has to feel that way again, here are a few suggestions I have found extremely helpful in my own invisible illness journey.
Compression Sleeves/Socks
Myth: Fibromyalgia sufferers have a lower pain tolerance.
Fibromyalgia affects the sensitization of the nervous system so pain receptors are simply more sensitive and need lower levels of stimulation to produce a response.
Fact: Pain tolerance varies by person.
One of the main symptoms of Fibromyalgia is unlocalized pain. Which technically means pain that occurs on both sides of the body, but for me it means pain that can pop up anywhere at any time. The painful sensation doesn’t even need to be caused by external factors. This, combined with an over-sensitization of the pain receptors, leave Fibromyalgia sufferers in varying levels of pain on a daily basis. It isn’t that people with Fibromyalgia have a lower pain tolerance; they literally feel pain more intensely and more often than the average person.
How Compression Sleeves/Socks help me: A hug for your muscles
One thing we do know that helps Fibromyalgia is that strengthening and tightening the muscles around the nerves can help lower pain sensitization. On days my symptoms are worse than normal, anything that compresses my skin helps random pains from shocking me throughout my day. They also help me hold pressure on the nerves at night as this is the time of day your muscles are the loosest and therefore your symptoms are most impactful.
Acupuncture
Myth: Acupuncture Hurts!
I have to admit, at first I was skeptical too. One of my personal phobias are needles so it took me many years of goading by my father before I finally tried it out. Then, it got to a point where my pain overpowered my fear and it was the best decision I could have made!
Fact: Acupuncture needles are incredibly thin.
As a self-proclaimed needle-phobic I did have to have my doctor show me the needle before we began. I can attest to it being barely visible. Acupuncture appointments start almost the same way a massage does; you talk with the specialist about your concerns while calming music plays in the background and then you lay down. If anything, the needle feels like a small pinch and at times I've felt a warm or vibrational feeling.
How acupuncture helps me: Relief that lasts
The same way a good massage can make you feel more relaxed for days or even weeks after, acupuncture helped ease my pain and gastrointestinal symptoms for weeks. Relief at times was almost instant! Since acupuncture is now covered by many insurances, I was able to go frequently enough to notice a significant difference in my pain even before I was on any medication. So, even a complete skeptic like me has stuck with occasional sessions for breakthrough pain symptoms.
Heated Mattress Pad
Myth: Sleep is always restorative.
One of the biggest hurdles to regaining my life was getting over the debilitating chronic fatigue that made every day feel like I was carrying 1000 pounds around. A good night's sleep is imperative to your overall health and your healing, but that isn't always easy when your body is fighting against you.
Fact: A symptom of Fibromyalgia is non-restorative sleep.
You are not making up the feeling of dragging through life endlessly exhausted. It is a common symptom to “experience wakefulness during the non-rapid eye movement (NREM) stages of the sleep cycle and receive less slow-wave sleep” according to the Sleep Foundation. Sleep is something we can’t live without so make room for your personal sleep needs; whether that's giving yourself longer to sleep or playing rain noises. Anything that provides peace and restfulness is worth the effort.
How a heated mattress pad helps me: Constant nerve stimulation
As a one-two punch for Fibromyalgia sufferers; symptoms do tend to worsen at night. I personally tend to spasm more forcefully and frequently while trying to fall asleep. My heated mattress pad is a life-saver because not only is it immediately more cozy and relaxing on the muscles to be enveloped in warmth but it also provides more soothing stimulation to my nerves than an ice cold bed would. Technically, a single nerve can only normally process one sensation at a time. So by providing a more comfortable stimulation, the amount of pain signals that get processed goes down. I could not recommend this enough; any type of heating source should help to ease discomfort and give you your best chance of a good night’s sleep.
Special Mention: Condition-Specific Communities on Social Media
One of the first, and most helpful, places I have found community is on social media. More and more people are talking openly about their experiences and creating content centered around living with all types of chronic conditions or disabilities. Having people to share with and relate to was life-changing for me. Finally it felt like I could help myself instead of just floating aimlessly in pain. When I found my personal favorite page, Coach Rachel Smith, I was ecstatic. I finally had actual information available to me about how to help myself. I have followed her fitness advice for years and am so thankful to have a community of people to turn to when my symptoms feel too overwhelming.
Thankfully, after I was diagnosed and put on the proper regime of medication for me, I have been able to live in ways that would have been impossible just a few years ago. Even on my worst days, my body no longer feels like an insurmountable obstacle to my goals. Hopefully some of these ideas help you heal and thrive in 2025!
