Describing Invisible Symptoms

Describing Invisible Symptoms

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?

A conversation

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…

**Awkward Silence**

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.

xoxo

Ashley Ringstaff

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The MultipleSclerosis.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

View Comments (9)
  • LuvMyDog
    4 years ago

    Cog Fog, big time in my life, truly exasperating to say the least.
    The MS-Hug, I had not heard of that before, but it gives me an idea now of what that ugly feeling around my chest is sometimes.
    Bladder problems, come and go.
    Burning and tingling, cramping muscles, all too familiar.
    What did we do to deserve this??

  • But You Look So Well
    4 years ago

    Almost all of my symptoms are invisible lately since Copaxone and the amount of exercise I do has done a great job of healing the really obvious problems, but the tingling, burning, cramping, muscles and the serious vision problems and the remarkable things my bladder likes to do to me (not to mention my colon) are all kept neatly out of sight. But I do remarks from people who say things like “You really haven’t had much trouble with your multiple sclerosis, have you?? You should see some of my patients!” I always want to whip out a copy of my CAT scan and show them the slab of foie gras that is my cerebral cortex. Not to mention the toll that cog fog takes on my behavior. CatMom describes it perfectly: “Never a dull moment!” Can I quote you, CM?

  • CatMom
    4 years ago

    Ashley, you’ve hit the nail on the head. There are a lot of these unexplainable symptoms. I get the feeling of bees buzzing under my skin, which is different from the feeling of an electric current flowing up and down my legs. Then there’s the burning pain, the feeling of being stabbed with a pin or needle in the bottom of my foot. The list goes on.

    And emotional swings are the pits, and happen even while taking anidepressants!

    Ahh, life with MS, never a dull moment. LOL

  • LuvMyDog
    4 years ago

    The “hat-pin-stick” is how I try to describe the quick sharp little pains I get in various parts of my body.
    As an artist, I visualize just about everything and that pain reminds me of someone taking a long sharp pin and just jabbing it in my skin, in and out, quickly.
    I get it in my head, my face, my legs, my side.

  • Ashley Ringstaff moderator author
    4 years ago

    Yes I know! & that doesn’t even include the side effects of the meds we take for the symptomatic issues!

  • Johan
    4 years ago

    Glad to know I am not alone, Thank you Ashley.

    JE

  • Ashley Ringstaff moderator author
    4 years ago

    Never alone! We all might not have ‘identical’ cases of MS – but we have a lot in common for the symptoms, etc. xoxo

  • fedupandconfused
    4 years ago

    Yes I’ve experienced them all. For me I can’t thank you enough for explaining how sometimes it makes you feel like a fraud as you can’t explain what’s wrong as that’s how it is for me too. There have been many times that because I can’t explain it myself, I don’t bother explaining it to the Neuro or my Dr – it’s not that they aren’t approachable and caring as they are, but what’s the point if it makes no sense to me it sure isn’t going to make any sense to them. In fact I reckon for years I didn’t see a Dr regarding symptoms because the symptoms were random so I didn’t think anything of it and I didn’t tie the random symptoms together as MS and then half the time I couldn’t explain some of them myself as it made no sense to me. One that comes to mind only because it happened recently was for a period of a few weeks a while back every time I would fall into a really deep sleep I would suddenly wake up with a start as for some reason I had bitten underneath my tongue, not the tongue itself but the muscle thing that attaches the tongue to the bottom of your mouth. Now how can someone do that? I couldn’t even bite under there if I tried yet that’s what was happening and it was so painful I wanted to cry yet I was so tired as it always happened at the deep sleep stage that I just wanted to go to sleep. And yet as quickly as it came on after a few weeks it disappeared again. Same with the hot spot on the side of my left foot – it would literally happen a couple of times a day then disappear within seconds. That’s now gone yet one morning I woke to find my heel was in agony it literally felt like I’d stood on a plug and it was that really painful bruised feeling you get. That’s lasted for weeks. Then the worms twitching in my legs, not literally of course it’s just the twitches that sometimes look like worms and happen and then mysteriously within seconds or minutes they are gone again. It’s almost like a phantom illness which torments you with ghost symptoms! Anyway thank you so much for sharing Ashley it has made me feel I am not crazy and haven’t imagined these things or the fact we can’t always describe them. Thank you

  • Ashley Ringstaff moderator author
    4 years ago

    I’m glad I could help out in anyway, although it stinks that I’m helping people out describing these horrible symptoms. I do write for people to know that they aren’t alone in this battle & that they aren’t “crazy” but again I wish I was the only one experiencing these issues, so that no one else had to go through the battle that I do everyday.

    Remember – it’s okay to be a little crazy, normal is boring! But you aren’t crazy when it comes to the symptoms you are feeling. They are very difficult to explain.
    xoxo

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