Some Things I Wish People Knew About MS-Related Pain
Last updated: September 2018
On the list of symptoms that people don’t always realize are associated with Multiple Sclerosis, pain may be at the top. Chronic pain due to Multiple Sclerosis is a much more common issue than people once thought. 55% of responders to our MS In America survey from last year listed pain as a symptom they have to deal with on a regular basis. I am among that 55%, as I deal with chronic pain on a daily basis. It’s a horrible symptom, and it’s one that I wish people knew more about. So I’ve compiled a list of some things that I wish people knew about MS pain:
MS pain is real
MS pain is real. For a very long time, many doctors did not consider pain a symptom of MS. As science has advanced, they now know that it is very much a symptom, and a common one at that. Unfortunately, there are still doctors out there that are not as up to speed on this as they should be.
Different kinds of pain
There are many kinds of pain that someone with MS can experience: Headaches (including migraines), Trigeminal Neuralgia (a severe facial pain), Lhermitte’s Sign (an electric shock sensation that happens when the neck is tilted down), Paraesthesia (which is often a pins and needles or a numbness and tingling type sensation), Dysesthesia (an abnormal sensation that is often associated as a burning or aching feeling. It can also feel like squeezing, and this is the category the dreaded MS Hug is in), Spasticity, and Optic Neuritis (though associated with vision issues, this can also include eye pain).
Pain can occur at different times
Our pain can last for long periods of time or come on suddenly. I’ve had many days where I wake up in pain and go to bed (or try to) in pain. I’ve also had many moments where it comes on suddenly, interrupting any plans I’ve made.
The impact of pain on our lives
Pain has a significant impact on our lives. Referring back to the MS In America survey, those suffering from pain indicated that it had an impact on their sleep, ability to walk, recreational activities, enjoyment of life, normal work, and their mood.
Pain can change you
Being constantly in pain can cause you to do things you normally wouldn’t do, pain can change you. There is always part of you thinking about the pain you are in, no matter how you try to put in the back of your mind, it’s still there. This can make you act differently, think differently, and behave in ways that you never expected. Chronic pain is powerful.
Hiding the pain
No matter how we look on the outside, you usually can’t see our pain. People with MS do an amazing job of “faking” it, putting on a smile and hiding how we feel in order to look and try to feel normal. Most people with MS may even appear happy, but they’re likely hiding a number of issues.
The opioid crisis is starting to cause us problems. Doctors are becoming more and more afraid to treat pain because some people are abusing the medications. Not only has this made it difficult for some to get life changing pain medications, but it also makes them feel shame for using them. They aren’t “pill seekers”, they simply want some relief so they can try to live a somewhat normal life.
Dealing with stigma
For many, like myself, even the most powerful of pain medications are ineffective. This has led to many of us finding some relief in medicinal marijuana. Sadly, this form of treatment is not easily acquired and still has a stigma attached to it in many areas of the country.
It doesn't stop our pain
For most, whether it’s marijuana, or a medication, even if we find something that helps, it doesn’t stop our pain completely, we always have some painful sensations, it may simply be lessened.
We've tried to make it stop
We don’t need suggestions on how to fight it. When you consistently experience a burning, stabbing, squeezing, shocking, or other form of severe pain, you explore all of the options. Believe me, you don’t sit around in agony and not try to figure out every possible way to make it stop.
Accept that it's a problem
We know you will never really understand what we experience (and we are happy about that), but we want you to try (without trying to fix it). Accept that it’s a problem for us, even though you can’t see it. Just be there for us and try to be understanding when we have to cancel plans.
Pain is a serious issue
As I’ve mentioned, pain is an issue for me. Even now, I have an aching and persistent pain in both my legs. When I first awoke this morning, I had a severe burning sensation in both my legs, like I was on fire from the inside out. I have pain in other parts of body at times too, but my legs are always the worst. It’s so bad at times, that I have on occasionally looked at people with prosthetic legs and felt jealousy. It’s an odd thing to think that you can be envious of someone using artificial legs, but that’s how bad my pain is at times. Pain is a serious thing with not only Multiple Sclerosis, but other chronic illnesses as well. It’s something that so many people don’t understand or even know about, so please feel free to share this.
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