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This blog is another opportunity to feel grateful. Thank you, dear Universe, you continue to bless me with recovery and health.
Imagine waking up daily to intense muscle cramps and spasm. Until today, the excruciating pain leaves me feeling helpless and wondering!
What is this pain all about and why isn’t there any cure?
Many people across the globe use the term rare disease to address an uncommon condition. I use it as an association with my Neurological condition called Isaacs’ Syndrome. It is also called Neuromyotonia. It is a rare neuromuscular disorder that makes the fire too much. It causes muscle cramps, muscle stiffness, body weakness, and pain.
Initially, the doctors thought my poor clinical tests were the key to all the muscle cramps. They put me on medications for various vitamin deficiencies and bad cholesterol. My health condition deteriorated fast. I had constant body pains, muscle cramps, fasciculations, and weakness.
Ultimately, my hospitalization with all detailed medical evaluations confirmed me as rare.
Along with Isaacs’s Syndrome, I also discovered that I had chronic illnesses like Lyme disease. Lyme is a bacterial illness that gets transmitted through ticks. Glaucoma also accompanied me. Glaucoma is an eye-related disease that damages the optic nerves. And Membranous Glomerulonephritis is a progressive kidney disease. I faced tremendous issues with my gut, stomach acid, and digestive enzymes. During my journey, I also developed Irritable Bowel Syndrome (IBS), Diabetes, Frozen Shoulder, Eczema and Blood Pressure.
During my school football days, I heard about muscle cramps for the first time. I saw the participants in pain, screaming for help. But now it had become my own experience and one of the most notorious symptoms of all.
A muscle cramp is the sudden, tightening of one or more muscles causing severe pain. It is sometimes also called charley horse. A muscle cramp is also related to a spasm however the major difference is in the pain level and severity.
Muscle cramps are generally more painful and intense than muscle spasms. It is more frequent in the legs while muscle spasms can occur in any muscle.
Cramps affected my muscles which include the lower legs, front of the things, back of the things, and calf muscles.
The excruciating pain made it worse only by the shock of their arrival. It kept me cautious during the daytime and caused several sleepless nights. It was a sudden sharp pain that lasted for a few minutes. I still remember those days of immobility because of the intense pain in the calf muscles.
I was fortunate to have several discussions with medical experts to conclude
- The Cause: In my case, it happened due to some medicine side effects. Also, chronic conditions like Membranous Glomerulonephritis added fuel to the fire. Isaacs’ Syndrome, inflammation, over-exertion of muscles, and dehydration were also some seen causes.
- The Concerns: I had muscle blockages which restricted blood flow. There were essential mineral deficiencies and also nerve compression.
- The Prevention: I realized that cold weather worsened cramping. Also, exposure to airy conditions aggravated it. My prescription suggested plenty of fluids to keep me hydrated. Modify the menu to add essential nutrients like magnesium, Vitamin B, and D.
I was also instructed to have a warm water bath and cover my legs during sleep. I was strictly asked to avoid caffeine and be slow in stretching my muscles. During painful moments apply a hot water bottle. Some other important considerations were:
- Regular clinical investigations included Vit B12 and Vit D levels.
- I was asked to learn to maintain body postures that prevent calf muscles from shortening.
- Quinine pills are considered to be one of the key treatments for cramps. However, it was mutually decided by the team of doctors to keep me away due to the associated side effects. With time the team prescribed more natural ways to control the condition.
- Treatment: my treatment focused on treating the underlying cause, Isaacs’ Syndrome. The medicines included ways to treat muscle cramps.
I initiated symptomatic treatment which seemed the only source of immediate relief. It included medicines and therapies like steroids, immunosuppressants, muscle relaxants, IVIg, Plasmapheresis, etc.
I spent significant time with Western medicines before trying natural ways of healing. Holistic healing was done to refrain from side effects and generate long-term benefits.
Some other worth mentioning treatments were
- Alternative treatments: it included Ayush methods like Ayurveda, homeopathy, meditation, and yogic practices. Doctors prescribed physical and mental therapies. The treatments catered to cramps and other associated problems.
- I was put on Electrolytes from time to time.
- My diet was made conducive to help cut down on cramps, and twitches and correct digestion.
My key takeaways from this experience
- Muscles certainly have a mind of their own. It was important to indulge myself in various mind-body techniques of relaxation.
- Many a time while dealing with rare diseases we feel the need to take that extra pill. Using multiple medicines could lead to adverse effects. I strictly followed my prescription and refrained from popping unnecessary pills.
- Keeping all my doctors looped and forming a common link was very important. I realized that efficient communication could bring a noticeable change. It changes the way we perceive and approach treatments.
- In case my main doctor was preoccupied, I consulted his junior instead of making my own decision.
- During my journey, I developed side effects like diabetes and blood pressure problems. Keeping a watch on symptoms and being regular with medicines helped. Also, maintaining regular medical records eased the process.
- Patience was key. I started with stretching exercises and massaged the affected area with natural oil. I tried to refrain from the comparison business as every individual is unique. It is important to understand physical limitations and stop overdoing things.
For me, seeking help was a sign of strength and not weakness. By doing so, I took control of my well-being and improved my quality of life. Healthcare professionals, support groups, and online communities were a matter of finding solace. It empowered me to connect with people facing similar challenges.
We as patients, are not born with high levels of resilience. It is something we earn through practice. I request my readers to perform their best and not appear weak. Standing strong will only open doors to moving forward. It will give strength to fight rare diseases like Isaacs’ Syndrome and associated symptoms like cramps.
DISCLAIMER
The views expressed in this article are the author’s own and do not represent any kind of medical advice.
