I get these pains, sometimes on my back or my side, out of nowhere. Usually along my bra line. Since I wear sports bras, this is a thicker band area. It always feels like there is something wrong on my skin in a certain area. Like a cut, rash or irritation except nothing is there when you look. The area is fine. No red spot even to show something coming up on the skin. It is completely normal. It just doesn’t feel normal. It isn’t super painful but I find myself maneuvering my bra around trying to get it off a particular spot. Problem being that the bra isn’t what is causing the pain, it’s the nerves misfiring.

I’m am one of the lucky ones, I don’t experience too much pain with my multiple sclerosis. I, unfortunately, have all the numbness throughout which leads me to believe that is why my pain is limited. I had shingles a number of years ago. It actually appeared on my face. Lovely place for it to be. It was under my nose, up my cheek, very close to my eye and down my chin. I had a few trails leading to my neck. My face has had significant numbness for over 15 years. I’d get twinges of itching and pain but I was able to deal because it wasn’t bad. I think that was due to the facial numbness. My legs, stomach, arms, extremities etc have all been experiencing weakness and numbness since my first major relapse in 1998. I personally believe that is why I don’t suffer from major pain as others do. Even at my worst spasticity stages, the pain is thankfully manageable.

There are several different types of pain in multiple sclerosis.

Pain

Experts usually describe pain caused by MS as musculoskeletal, paroxysmal or chronic neurogenic.

Musculoskeletal pain can be due to muscular weakness, spasticity and imbalance. It is most often seen in the hips, legs and arms and particularly when muscles, tendons and ligaments remain immobile for some time. Back pain may occur due to improper seating or incorrect posture while walking. Contractures associated with weakness and spasticity can be painful. Muscular spasms or cramps (called flex or spasms) can be severe and discomfiting. Leg spasms, for example, often occur during sleep.

Paroxysmal pains are seen in between five and ten per cent of people with MS. The most characteristic is the facial pain of trigeminal neuralgia, which usually responds to anticonvulsants such as carbamazepine, oxcarbazepine and lamotrigine.

Lhermittes is indicated by a stabbing, electric-shock-like sensation running from the back of the head down the spine brought on by bending the neck forward. Medication is of little use because this pain is instantaneous and brief, but anticonvulsants may be used to prevent the pain, or a soft collar to limit neck flexion.

Neurogenic pain is the most common and distressing of the pain syndromes in MS. This pain is described as constant, boring, burning or tingling intensely. It often occurs in the legs.

Paraesthesia types include pins and needles, tingling, shivering, burning pains, feelings of pressure, and areas of skin with heightened sensitivity to touch. The pains associated with these can be aching, throbbing, stabbing, shooting, gnawing, tingling, tightness and numbness.

Dysesthesia types include burning, aching or girdling around the body. These are neurologic in origin and are sometimes treated with antidepressants.

Optic Neuritis (ON) is a common first symptom of MS. Pain commonly occurs or is made worse with eye movement. The pain with ON usually resolves in between seven and ten days.

The pain caused by multiple sclerosis is very real so don’t let anyone tell you it isn’t. There are many treatments drugs for each of these types of pain some work, some don’t. We have all been on baclofen or gabapentin for one of these areas of pain. My spasticity not much works on other than marijuana which unfortunately effects all my other MS symptoms so that isn’t so helpful. At night I take flexerol and sleep through some of my twitching and spasms. It is a very tricky thing to manage and I have very little pain. I feel bad for those who really suffer.

With all the new MS advances, hopefully there will be some new nerve pain advances also. Maybe one day they’ll understand why the nerves still misfire after the damage. Maybe they’ll figure out the phantom pain or what causes multiple sclerosis. As always I hope with each research study something new emerges other than another medication for the same thing.