MS Is a Pain, and Doctors Should Know It

MS Is a Pain, and Doctors Should Know It

Dear Doctor,

Why is it that you, or at least some of your colleagues, think that multiple sclerosis isn’t painful?

Did you skip the med school class where they discussed MS? Are you not a neurologist, or are you a neurologist who doesn’t specialize in MS?

Whatever the reason, this “MS doesn’t cause pain” belief can be a significant problem for many of us living with the disease.

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I wake up regularly because of pain from a cramp in my left leg. I also have low-level pain in my left hip. Sometimes it’s an ache, and sometimes, if I move in the wrong direction, it’s a shooting pain.

My friend John tells me that his MS “hug” feels like a charley horse on both sides of his ribs. “It generally feels like someone is sitting on your chest,” he told me in an instant message.

In MS Facebook groups, people with MS complain about their pain every day. A typical post says something like, “I don’t mean to whine, but my pain is unbearable today.” Or, “In the hospital and just had the doctor tell me MS is not painful. Personally, I think she needs to go back to med school.”

MS pain is common

The Multiple Sclerosis Association of America reports that more than half of the people who live with MS say they live with pain. The National Multiple Sclerosis Society says that pain is common for MS patients. It can rob us of sleep and make life in general miserable. The pain can include:

  • Burning, prickling, stabbing, ice-cold, or electrical sensations in hands, feet, arms, and legs.
  • Back and hip pain caused by the abnormal walking gait of MS.
  • Face and jaw pain that can often be confused with pain from dental problems.
  • The MS “hug,” which was described earlier. Be careful, though. This type of pain might not be MS. Some people describe the MS hug as feeling like a heart attack, and what you’re feeling might actually be one. When in doubt, call emergency medical services.
  • A brief feeling, like an electric shock, that runs down your neck and spine when you bend your neck forward. It’s called Lhermitte’s sign.

What to do about MS pain

The National Multiple Sclerosis Society has a few recommendations about handling MS pain on its website. They include medication, stretching, and physical therapy. In some severe cases, heavy-duty pain meds are prescribed. The society has an excellent brochure about MS pain that goes into all sorts of detail.

But what can be done about a doctor who thinks that MS isn’t painful? Be prepared! Print out that brochure and keep it handy. Take it with you the next time your pain forces you to the emergency room and hand it to any doctor who apparently didn’t learn the facts in med school. Maybe those med schools should invite some people with firsthand experience to be guest lecturers when MS is the subject of the class.

You’re invited to visit my personal blog at www.themswire.com.

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Note: Multiple Sclerosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Multiple Sclerosis News Today or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to multiple sclerosis.

5 comments

  1. Dorothy says:

    Hi. I was just diagnosed with MS. And my whole world has changed. Life is not the same anymore. Pain pain pain. No matter what you do or take. Thid illness is terrible from one minute to the next. I don’t know me anymore. Unbearable.No one understands. Help. Please

    • Ed Tobias says:

      Hi Dorothy,

      I, and others here, DO understand. I was diagnosed in 1980. I worked, full-time, until retiring at the end of 2012. For work, and now for pleasure, I’ve traveled all over the world. My wife and I have two wonderful grandchildren. A good neurologist, who specializes in MS, should be able to help you handle the pain. Physical therapy can also help. If medical marijuana is legal where you live that’s something else to look into.

      I’d also suggest looking into an MS support group near you. If you’re in the US you can find state chapters at http://www.nmss.org. There are similar organizations in other countries.

      I wish you well,

      Ed

    • Beth says:

      Don’t give up hope Dorothy. It will take time to adjust to the ‘new you’. I was diagnosed last year at age 59, and like you, kept saying ‘I don’t know myself anymore’. I know what that feels like, dear. The best advice I can give you is to shop around for a good MS doctor, and discuss medications to help you with nerve pain/issues, so you can function. And try to get good sleep every night. There are tons of people with MS who understand and are here for you. 😊

    • Cynthia King says:

      Sorry to hear about your diagnosis. MS is hell on your body not to mention your psyche. Since you are recently diagnosed, that’s a good thing. That means there is a lot of meds to try to tame the beast. Get yourself to a good neurologist. It took a long time to figure out what the right combination of things were going to improve the quality of my life. It’s not just drugs. It’s physical therapy. Emotional support. A service animal. If you aren’t comfortable with physically going to a support group. It’s kind of tough, because half the people you will perceive as being ‘better’ than you might make you feel bad, but the other half you will perceive as ‘worse’, and that might make you feel better. My recommendation is get a good doctor and try to manage your symptoms,like nerve pain. Stiffness and spasticity May benefit from PT. It’s a long road and you have to go step by step. I think Ed and I are old timers, I’ve had ms for 25 years and he around that much. If you told me 25 years ago I’d be mostly upright and relatively happy I’d say you were nuts. But I am. It took a long time to figure it out. Good luck to you.

      • Ed Tobias says:

        Cynthia,

        Good advice. Personally, I’ve always disliked support groups. But I have great support from friends, family, co-workers…you name it. My symptoms increased very gradually, so my MS has always seemed “normal” to me and the others in the groups seemed to not be like me.

        BTW, at 25 years you’re just a short-timer. I was diagnosed in 1980. That’s nearly 40 years ago. Wow! Time flies when you’re having fun. :-).

        Ed

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