Is MS Pain Real?
I think that there is a lot of contradiction on this specific topic/symptom when it comes to MS. For a long time, it was believed that those with MS did not have any pain caused by the disease…
MS pain can be hard to explain
I know that now researchers have confirmed that there is pain associated with multiple sclerosis patients. Not ALL patients, like many other symptoms of MS, will or do experience it.
So why am I writing about it you ask? Well because I think there needs to be more awareness brought about it. So I’ve come up with some… explanations for MS pain.
Spasticity and the MS hug
MS pain cannot be explained at all times. What I mean by this is that sometimes we have pain from spasticity, which can be relatable to some people. Other times… we have pain from say, an MS hug… we all know that there is no one who can relate on that kind of symptom unless you have MS yourself and have experienced it.
Another kind of pain that I have experienced is dysesthesias. That burning sensation we get... As well as pins and needles at other times. I can explain the pins and needles part to others, basically saying like how your foot feels when it falls asleep at times. But the thing is, that goes away for them. But how do you explain being on fire? It’s not like, “Hey have you ever been on fire before? Because that’s what it feels like…”
Needless to say that I’ve been a “walking accident” my whole life… meaning that I was a klutz and broke a lot of bones… and not just a simple break, we’re talking had to have surgery and pins to put me back together again. So with that being said, I’ve dealt with a certain amount of pain growing up from always breaking something.
MS pain is off the charts
What I really DISLIKE and what a lot of people don’t get (healthcare people, mainly at hospitals) is that… if I am coming to you… saying I’m in A LOT of pain. You ask me on a scale of 1-10 (10 being the worst) what number am I at… If I tell you I’m at a 6 or 7… that’s like a normal persons 10 (10+). I have a high pain tolerance and I just deal with it until I see my doctor, or can call them, etc. But if I go to the hospital… HELLO! I’m not just someone looking for pills, trust me, I take enough of them already… I don’t want to add to it.
Medication doesn't always help
Sometimes the burning feeling gets to be really bad, even though I’m on medication to help deal with that specific symptom. But there are times that it just burns and if I’m touched… I want to scream. I don’t think people realize how hard it is to deal with… especially being a mother. What am I supposed to say to my kids? “Don’t touch mommy, it makes mommy hurt a lot”… uh… no thanks. Needless to say my kids are 5 & 8, so it’s not very easy to explain things to them in detail with my MS.
Those close to me have come to learn that I don’t always voice what’s wrong at that certain moment… so they watch my facial expressions, or how I move around. Interestingly enough… they can tell when something is wrong without me even saying anything. (Kudos to you, mom.)
Pain has a whole new definition with MS
Anyways… back to the subject at hand. I thought that I knew the definition of pain … way before I got diagnosed with MS. But after dealing w/ the symptoms that I have and certain things I have to deal with while living with MS… it honestly gives pain a whole NEW definition.
Does your employer provide workplace accommodations due to your MS?