Each person that lives with Multiple Sclerosis will have a unique journey, as this illness impacts everyone differently. I believe this is one reason why it is often referred to as the “snowflake” disease. The symptoms are vastly different from person to person, and we all handle the symptoms in our way. Of course, each symptom is frustrating, but some can be much easier to tolerate or even get used to. 

For over twenty years, I have battled with Multiple Sclerosis. When I was diagnosed, I was young and did not have extensive knowledge regarding the disease I would be forced to live with for the rest of my life. I was terrified, angry, sad, confused, and everything in between with the diagnosis because of what I did know about MS. I knew MS did not have a cure and it could be extremely unpredictable and there was a possibility to become disabled. Given my age, I was naïve and could not see any hope for my future, which made acceptance almost impossible.

Over the last two decades, I have experienced many different symptoms that had a variety of challenges. For instance, the first and only symptom I had was optic neuritis. This is commonly one of the first symptoms of MS. Optic Neuritis is a temporary problem. When the optic nerve is inflamed it can cause pain and partial or complete vision loss. Typically, this issue gets better on its own, but some cases require steroid medication to reduce the inflammation. 

During the early years after being diagnosed, I went through several frustrating days. Accepting the doctor’s diagnosis was painful and emotionally draining. Every appointment would start with me being argumentative and dismissive of anything the doctor said but would then end in tears. I could not fathom why I had this condition or why my life had to be altered so drastically and at a very young age. The truth is, I have always been a strong-willed person who could take care of herself without any help! I’ve never wanted to rely on anyone for help and was scared I would have to at some point in my life. 

The other frustrating part was deciding on a medication to slow down the progression of the disease. Back then my choices were limited to injections. I have never had an issue with needles but did not think there would be a way to give myself a shot. Even though I hated the options offered, I decided to try one that was three times a day. Unfortunately, after successfully giving myself a shot Monday, Wednesday, and Friday for a few months, the miserable side effects became too much for me to handle and I started slacking the medication, which made things worst. My first Neurologist was a sweet elderly man who has patience for days. He knew my fears, so to convince me to decide on another medication, he used my fears against me. It was a ruthless way of forcing someone to decide, but it did work. 

Of the various symptoms involved with MS, I did not suffer from pain in my early years. Unfortunately, during the past ten or so years, my pain issues have become increasingly more problematic. There has not been even a second, I have not experienced at least one form of pain. Considering it has been going on for so many years, there is a HUGE part of me that expects it and I can manage. Before I had MS, there were many types of pain I did not know existed. 

Through the rest of this post I am going to explain the different types of pain I deal with 24 hours a day, 7 days a week without a break in between. The reason I am doing this today is that my pain levels have become more intense and now in addition to all the other pains, my right shoulder and arm hurt so bad I can barely move my arm. I know my pain has become worst because of the incredible amount of stress I am under, which I am assuming is why my right shoulder hurts too. 

Although everyone has a different experience with MS, pain is a common symptom. Pain affects approximately two-thirds of people with MS worldwide and can impact their daily activities such as work and recreation, moods, and the ability to enjoy life. Most pain is a direct result of MS and is caused by damage to the nerves in the central nervous system. There are other forms of pain due to changes in the body due to MS, which could include experiencing weakness in your arms and legs, which forces you to walk differently causing pain in the back and hips. 

Neuropathic pain stems directly from damage to the nerves in MS. Pain from weakness, stiffness, or other mobility challenges is thought to be Musculoskeletal pain. Neuropathic and musculoskeletal pain can be acute with a rapid onset and short duration or chronic, which starts gradually and stays persistent. 

Neuropathic pain is miserable and, in my experience, not much helps ease the pain. This occurs due to “short-circuiting” of the nerves which carry signals from the brain to the body because of damage from MS. The pain sensation feels like burning, stabbing, sharp, and squeezing. The best way for me to describe this is, that it feels like spiders are having a constant dance party on my legs and feet. Neuropathic pain can be acute and chronic. 

FOUR TYPES OF ACUTE NEUROPATHIC PAIN

Trigeminal Neuralgia- stabbing pain in the face or jaw area. This can be misinterpreted as dental pain. Most often it is unpredictable, so we do not know when it will occur, but it does come and go.

Lhermitte’s Sign- is a brief stabling, electric-shock sensation that runs from the back of the head down the spine and possibly into the arms and legs. This can manifest by bending the neck forward. It typically means there is or has been damaged to the cervical spine from MS.

MS Hug- is a squeezing sensation around the torse. This feels like a snake is wrapped around your body and refuses to let go until it takes the breath out of you. An MS hug is the kind of hug no one wants and is an invasion of personal space!

Paroxysmal Spasms- is a periodic and painful tightening of muscles. For instance, this can happen in your arm or leg several times throughout the day and night.

Chronic neuropathic pain is normally the continuance of acute pain. This is unpredictable and may be experienced daily. Several issues can increase the likelihood to experience this pain, such as stress, fatigue, illnesses, and becoming overheated. 

Musculoskeletal pain with MS occurs because of weakness, stiffness or coordination struggles that change your walking or other mobility. This is often seen in the hips, legs, arms, and normally when muscles, tendons, and ligaments are immobile for a long period of time. 

Headaches and migraines are other common symptoms of MS. Although I deal with numerous other forms of pain daily, I am unable to tolerate migraines. These put me in the bed with an ice pack for hours and often even when I try to sleep them away, they are still present when I wake up. I have dealt with pain for many years and it never gets easier, but I also know crying or giving up does not fix the issues. I just try to keep pushing forward the best I can. 

Thank you for visiting my site today. I hope you found what I have shared interesting and that it helps you with anything you are experiencing. I hope you have had a safe and relaxing weekend. I am looking forward to reading your comments, which I will respond to as quickly as I can. Please never forget that I am always sending y’all LOTS of love, comfort, support, and MANY positive vibes!

Always, Alyssa