I once heard from a doctor that MS does not cause any pain. However, I find it hard to believe that he had no knowledge on the subject. It is quite surprising that even a doctor can be clueless about this. This misconception can lead to various perceptions about MS pain.
MS pain is unique to each patient and can manifest differently. Some individuals with MS experience neuropathic pain due to nerve damage, while others suffer from muscle and joint pain caused by changes in gait, atrophy, or spasticity. Let’s explore a few examples.
One excruciating pain associated with MS is trigeminal neuralgia. Thankfully, I haven’t experienced it personally, but I’ve heard it described as one of the most severe pains one can endure. Trigeminal neuralgia is facial pain caused by damage to one or more branches of the trigeminal nerve. Although there are medications available for treatment, they often prove ineffective over time. In some cases, a procedure called GKRS (gamma knife radiosurgery) can be performed to alleviate the pain by directing radiation towards the trigeminal nerve.
Another type of pain linked to MS is eye pain, often caused by optic neuritis. This symptom, usually affecting one eye at a time, is characterized by inflammation of the optic nerve. It can result in blurry or double vision, color dimming, blind spots, flashes of light, and a sudden sharp pain when moving the eyes. Optic neuritis may occur due to exposure to high temperatures or overheating of the body after vigorous exercise. In most cases, the condition resolves on its own within a month. Steroids are commonly prescribed for longer-lasting symptoms to reduce inflammation.
Personally, I have dealt with eye pain long before receiving an official MS diagnosis, and I have not experienced any long-term consequences so far. For me, the pain is typically located above my eye and is triggered by insufficient sleep.
Now, imagine the sudden, intense pain that feels like being poked with a knitting needle right on the corner of the eye near the lacrimal duct. This pain is unexpected and can be extremely distressing. I have to pause whatever I am doing and often find myself tearing up and rubbing my eye until it subsides. Although the pain lasts only a few seconds, it is quite severe.
Moving on, there is the infamous MS hug that nobody wants. This sensation is far from affectionate and can vary for different individuals. Some describe it as a squeezing feeling around the ribcage, while others feel sensitivity or pain in their rib bones. It can also be likened to a tight band around the chest or stomach, making breathing difficult.
I experienced my first MS hug as a young girl, around the age of 6 or 8. It occurred multiple times, but I never mentioned it to anyone as I didn’t understand what was causing the pain in my ribs. I found relief by lying on the bed and resting my upper body on it. Many times, I would fall asleep in this position, and upon waking up, the pain would be gone. This pain subsided for several years, resurfaced briefly in my 20s, and ultimately disappeared after I heard a popping sound while taking a deep breath. However, I now experience tenderness in the center of my chest, near the end of my sternum and under my breasts. It is sensitive and unpleasant when touched.
The exact cause of the MS hug is still unknown, although some theories suggest muscle spasms between the ribs or changes in sensation could trigger it. Various treatment options are available based on individual preferences, such as cold packs, warm compresses, stretching exercises, muscle relaxers, anti-inflammatory drugs, steroids, and breathing techniques.
In multiple sclerosis, there is pain caused by MS and pain related to MS. Neuropathic pain is a result of nerve damage, leading to sensations of burning, pins and needles, prickling, and itchiness. Conversely, musculoskeletal pain arises due to changes in gait, falls, weakness, balance issues, and the stresses placed on the body by MS.
As you can see, there are different types of pain associated with MS, debunking the notion that MS does not cause any pain, as stated by that doctor. There is much more to discuss on this topic, and I will continue it in a second part to this article.
