My MS Is Getting to Be a Pain, Literally
For most of the 36 years since I was diagnosed with multiple sclerosis I’ve not been bothered by pain. Just lucky, I guess. Until last month. Suddenly, I’ve developed pain in both hips and I don’t know why.
The pain is most intense when I first put my feet on the ground, either getting out of bed in the morning or sliding off a wooden stool to a standing position after breakfast in the kitchen. It’s worse if I’m standing or walking on a hard surface, such as tile, and in bare feet. It’s less intense as I walk, using my two canes. And it’s hard to notice it at all, right now, as I’m writing this sitting at my desk on a comfortable leather chair, feet on the ground with good back support.
Tracking the pain
Since MS pain is new to me, and since I’ve read about some neurologists (not mine) poo-pooing the idea that MS can cause pain, I began a little research. One of the most comprehensive overviews came up on the U.K.’s Multiple Sclerosis Trust website. It lists a number of types of pain that can be associated with MS.
They include nerve pain, such as:
- Trigeminal neuralgia, an intense painful sensation in the side of the face.
- Lhermitte’s sign, electric shock feelings in the neck and spine which are sometimes painful.
- Optic neuritis, which can give a sharp, knife-like pain behind the eyes and sometimes also causes difficulties with vision.
- Painful altered sensation, sometimes called dysaesthesia or paraesthesia, which can be described in a variety of ways, including pins and needles, burning, numbness, prickling, itching and crawling.
- The MS hug (banding or girdling). This is a feeling of chest pain, rib pain, tightness, or being squeezed around the chest, although it can be around the hands, feet, legs or head.
And musculoskeletal pain:
- Hip and back pain caused by alterations in how you walk due to MS, possibly because of muscle stiffness (spasticity), weakness, or problems with balance.
- Back pain due to sitting for long periods because of fatigue, walking difficulties, or an inability to stand for long.
- Muscle or joint pain due to changes in posture, spasms, or muscle stiffness.
You might also have a pain as a side effect of medication, or from a medical condition that’s not related to MS.
Is it my meds or my gait?
I received Lemtrada infusions in early December. Though hip pain isn’t specifically listed as a side effect in Lemtrada’s patient guide, the guide does list joint pain, back pain, and pain in the arms or legs as common side effects. I’ve also seen posts on the unofficial Lemtrada Facebook group from patients feeling bone pain. So, could my hip pain be connected to the Lemtrada?
Or, could the pain be related to the IV steroids that are a part of the Lemtrada treatment? I had several rounds of Solu-Medrol (methylprednisolone) when I was first diagnosed with MS back in the 1980s. Bone and joint pain are among the side effects listed for it. And the use of steroids may result in a loss of bone density and increase your risk of developing osteoporosis.
Another thought. Over the past three months I’ve gone from using one cane to using two. I’ve also increased the amount of walking I’ve been doing each day (not that I’m doing very much, mind you). My posture is poor and my gait is unusual.
So, is my hip pain a result of my meds or my gait? Obviously, a trip to my neuro or my PCP, or both, is in the cards. I’ll keep you posted on what they say.
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