I know that this is a very big topic for a lot of people living with MS. We have all these symptoms that we experience on a day-to-day basis, or maybe just occasionally. But with some of these symptoms, it’s not so easy to put a name to it… or to even try and describe it to others or our health care team.
This can be difficult due to our cognitive dysfunction (aka cog-fog) but it can also be very difficult to describe, because it’s not ‘noticeable’ on the outside. We can’t do a strength test to point it out, etc.
There has been a nickname given for that constricting feeling in or around you chest area… called the MS Hug. But there are many others that we experience that are similar to the symptoms above, because they aren’t visible and they can be difficult to describe.
Have you ever experienced that burning feeling? What about that pins & needles feeling? This has been categorized as ‘nerve pain’… When I first heard it was nerve pain, I was like, “Are you serious? My nerves can cause that much pain?!”
It’s nice that there are actual definitions out there for these odd symptoms but we don’t always have that information on hand or we haven’t seen it before, or we just simply forgot what it was called, due to our great MS Memory (I like to call these my MS Moments).
Obviously our neurologist and/or nurse know what we’re talking about when we’re describing these feelings, hopefully. But how do we explain this to our family and friends?
Friend: “Why are you shying away from being touched on your arm?”
MS Patient: “Well you see, when something touches my arm right now, it feels like I’m on fire, or that someone poured acid on my arm. It feels like that already but when touched it intensifies to the point of tears.”
Friend: “Uhmm… What? Is your mind playing tricks on you?”
MS Patient: (Thinks to self… if only it was my mind playing tricks, and not my mind actually causing the pain.) “If only that was the problem…**sigh**”
Friend: Uhm… Okay…
I’ve had a conversation with someone similar to the above before. People don’t understand how you’re trying to explain your invisible symptom… and it makes it sound like you’re exaggerating or making an excuse, or they just flat out don’t know how to even respond to your explanation.
The symptoms aren’t just physical
There are also the emotional changes that we go through. I don’t really feel like it matters what stage we’re in with being diagnosed… it can happen at anytime, for me at least. I can be emotionally fine or ‘stabile’ as another term… but if something slightly changes or alters my emotional state, it can bring on multiple changes to my emotional well-being. If one thing angers me (putting it nicely) it seems like the whole day is ruined, and I’m just irritated with everything and in a general bad mood. If something makes me sad, the same type of emotional cycle occurs. That one change and/or event sets the ‘tone’ for the rest of my day, if not longer.
Spasticity and Tremor, while this can be visible, can also go unnoticed by family and friends. So it does seem like an ‘invisible symptoms’ at times, for me at least. Spasticity or a ‘spasm’ is a bit easier to explain to others, but a tremor isn’t as easy at times. My husband asked me what was wrong, when I was just sitting down staring at my leg/thigh… I said, “You can’t see it? My muscles are having a party in my leg and I didn’t approve of it.” I tried to catch it on recording but it wasn’t successful…
Anyway, the purpose of this blog – is to explain my creative definitions for invisible or hard to see symptoms from MS. If you have experienced some of the symptoms that I’ve listed, for one I’m sorry, for two you aren’t alone.