One of the most common questions I get from people, mostly friends who are comfortable enough to ask, is “Does it hurt?”. They see me grimacing as I struggle to lift my foot from the ground. They see tears as I try to crank my bike pedals over one more turn. They see me slowing down and eventually stopping. My answer to them is always the same, “It does not hurt at all”.

As I get to know other people with multiple sclerosis and share stories about our experiences, I realize how lucky I am to have been in no pain initially. Nearly three years in and any pain or discomfort I feel is still minimal but accumulating slowly. I still consider myself lucky for this, though I feel my luck is slowly running out.

Nerve pain is obviously going to be an issue for people with MS. Our nerves are going haywire all the time. They are confused and sending mixed signals all over the place or not sending signals at all. A person’s central nervous system is the pain processor of the body, so when it is in a discombobulated state, of course, there will be issues with nerve pain.

My last flare left me with nerve pain and neuropathy in my left leg and foot. On the pain scale, I would rate it a one. The numbness is a bigger issue than the pain as it hinders my ability to walk. I also have random burning sensations. Mostly on my arms and legs. Again, on the pain scale, I would rate it a one. It is more of an annoyance than a pain. I would even call it more of a phenomenon than an annoyance. Imagine the sleeve of your t-shirt rubbing a sunburn on the back of your arm.

My pain is more on the musculoskeletal side of things and largely due to spasticity. It is a very common symptom for people with MS. Spasticity ranges from stiffness of muscles to uncontrollable muscle spasms. It can be any muscle in the body, but it most often affects the lower extremities.

The worst of my spasticity happens in the middle of the night and leaves me with soreness the next day. I awaken with every muscle in my legs feeling tight and stiff. It is not a painful stiffness. I will point my toes and stretch my legs out as straight as they will go. That is when my left calf cramps and goes into gut-wrenching spasms. A charley horse like no other. I clench my teeth and take deep breaths. I am wide awake now. My entire body stiffens as I wait for it to pass. Moments later I am dozing off again until the cycle happens again in an hour or so. Lately, the spasms have also been deciding to torture the inner thighs of both legs. I will roll over and have my breath snatched out of my lungs as my thigh clenches into a painful knot.

The worst is when I fall asleep on my side with my knees bent. My muscles will contract during my sleep. My alarm is strategically placed out of my reach so I have to physically rise from bed to get to it. I will lie there listening to it blare and taunt me as I do everything in my power to stretch and straighten my legs out so I can stand. Even then, I hold to the nightstand as my legs continue to fight to straighten.

I have learned sleeping on my back is the ideal scenario. It keeps my knees straight without giving them the chance to lock in the bent position. I still wake up intermittently and mindlessly stretch them out even straighter and have to suffer my calves momentarily cramping, but this is my personal preference over the ruder awakening of my legs locked in a bent position. That scares me. I have a terrible, and not completely unrealistic fear, of waking up one morning and not being able to straighten my legs.

What I am left with during the day are sore, tight muscles. My hamstrings scream every time I bend over. My calves constantly remind me how angry they are. Every day is like the day after your biggest workout ever. I stretch. Before MS, I stretched at least every other day. On the weekend, I would do hour-long sessions of stretching. After MS, I stretched more. It was never enough to keep up with nerve damage. On the pain scale, it definitely ranks as more than annoying.

Aside from the middle of the night, my spasticity is off the chart intolerable when I am cold, especially crawling out of bed in the morning. I stumble into the bathroom. I feel like a pirate with one wooden leg. I am so stiff my knee refuses to bend no matter how much I will it to. I lift my leg over the tub with my hands to stand in a warm shower just to get my body loosened up and moving again. Nothing about my leg stiffening in the cold is painful. It is, however, a major nuisance.

The other thing that happens when your muscles are constantly tightening is joint pain. I had minor knee and hip issues from running and cycling, and now I have knee and hip issues from stiff muscles. Off-topic, I am also experiencing increasing hip pain because my limp is worsening. I will leave that to the physical therapist, though.

Once I realized stretching was not helping, I spoke with my primary care provider. She, of course, recommended stretching. Then, she wrote a prescription for muscle relaxers. I was not happy. She has seen me cry with every new prescription she doles out. Before MS, I was only taking two prescriptions. Now they were starting to add up, and so were the side effects. The plan was to take them at night and experiment through the day to see if I was still able to function at my job or if I would be a zombie. In the end, I decided to stick with stretching. The number of muscle relaxers I would need to take to get relief exceeded what I was comfortable with.

I have decided my next step should be CBD oil. I will update this post to let everyone know how it goes. Any pointers on using CBD oil are appreciated as it is new to me. I have read enough about its benefits in MS that I want to give it a go. The spasticity is now moving into my fingers. I wake at night in my preferred position flat on my back with my legs straight and cooperating with the rest of my sleeping body to realize my fingers are locked into position.

Spasticity is not only a nuisance, but it is a frightening condition that possesses the capability to rob a person of their mobility and independence. Most of us do not reach that stage, but for those that do, I cannot imagine the physical challenges they live through on a daily basis. I will keep stretching and fighting the good fight as long as I am able.