Multiple sclerosis pain is real

You never realize how strong you are until you are faced with a challenge that tests your strength. Many people see being strong as hiding your emotions, censoring how you feel and keeping it together at all times…basically to lie to yourself and to others that you even feel or have any problems in your life.

How many times have you heard “suck it up” when you were hurting so badly that you didn’t even have any breath to suck up in the first place? Those kinds of words drain any remaining life out of a person leaving them feeling hopeless and wounded. Life isn’t fair…absolutely, but that doesn’t mean pain should be swept under the rug and invalidated.

Pain is real. Pain stings. Pain hurts. And for those who are unfamiliar with multiple sclerosis…it hurts too.

It’s sad to hear of the doctors out there that don’t believe MS is painful. There are hundreds of thousands of us living with MS that would disagree with that statement. We can be hurting from uncontrollable muscle spasms, joint discomfort, headaches, Lhermitte’s sign, optic neuritis, and burning nerve pain.

My first MS painful moment was an encounter with the dreaded MS Hug. It feels somewhat like a girdle around your torso but you can’t take it off or loosen its grip. For me, it lasted for days and days. Only this past year has it actually seemed to disappear. Either that or I have finally gotten used to the pain and am able to ignore the discomfort it causes.

The truth is, there are times when life knocks the breath out of you without warning and leaves you down on the floor seeing stars. When that happens, you don’t need another slap in the face or kick in the gut by an insensitive person throwing out cliches and misinformation.

We need to redefine strength.

Being strong isn’t denying your emotions…it’s embracing them. It’s saying “Yes, I’m hurting” and allowing yourself time to grieve. It’s crying when you need to and screaming if you have to. You don’t even have to succeed in order to be strong. Trying your best and failing shows greater strength than doing the victory dance at the finish line. You have to be honest with yourself and acknowledge your feelings. You can’t hold back what makes you, you!

The important thing is to not allow your feelings to control you. Give yourself thirty minutes to cry that gut wrenching cry you need to get out, then catch your breath, blow your nose and hold your head high. You may not have control over the things happening in your life, but you do have control over how you respond.

Never give up the fight to survive no matter how weak, hopeless, or completely powerless you may feel. You are stronger than you give yourself credit for. Remember, tears aren’t weakness, they are simply parts of you leaking out to make room for those amazing muscles you are developing.

13 replies
  1. Gale Vester
    Gale Vester says:

    Thank you for writing about this, about all of this, about how this one disease hurts all of us stuck with it in its own individual ways. Yeah, especially about the MS doctors who claim that MS doesn’t cause pain, when they mean that MS doesn’t cause themselves pain. Ah well, what they don’t know won’t hurt them, right? Or something like that! I hope I’m not coming off as being too, too, too _what_, I can’t think of a fitting word! (And I used to be a better writer than that!) I’ve had this for 11 years now, just recently been crossed into the secondary progressive phase. But, yes, like you say, our strength gets us through.

  2. Roland R Clarke
    Roland R Clarke says:

    Thank you, Penelope. This was reassuring on a bad MS day, when my ‘pain’ is more psychological stress, even if the tremors and stabs will come later. Plus, I’ve heard the ‘suck it up’ comment far too often.


    wonderful page describing what we go thru that no one can figure how bad it can get ….the worst is the HUG .it is so terrible i don’t like the feeling of not being able to breathe…everyone knows what it is like to have this monster that they call MS ..feels good every time some one writes about the problems that we go threw …maybe not on a daily bases for some but for others it is …thank you to all that post on your web page…

  4. Rodger Ashton-Smith
    Rodger Ashton-Smith says:

    Thanks Penelope fortunelope I don’t get much pain, but occanaly I get pain in my arm where I had a greenstone break when I was 4 and fell off my mum’s bike. There was no seat for kids back then so it was easily to fall off when you let go. A bit of progress over the years to come..

  5. Jan
    Jan says:

    Thank you for this post on pain. I saw a neurologist at Duke about 4 yrs ago and he told me people with MS don’t have pain. Really!! I left crying and my husband and I drove the long 6 hours home just stunned!! MS pain is REAL and don’t let any doctor tell you otherwise!! I have since found an excellent MS Doctor at a Neurology Center that specializes in MS and has helped me with my MS PAIN!!
    Blessings, Jan 🥰

  6. James Chapman
    James Chapman says:

    Penelope thank you for being so truthful. You epitomize the word HOPE and Resiliency. We are so much more than our pain however it arrives whether physical mental or spiritual. You embody what I practice daily too. Love this piece. Thank you 😊

  7. Cathleen
    Cathleen says:

    This is my 26th year after my MS diagnosis. I never knew MS pain until about 10-12 years ago. The nerve pain shooting down my legs, the chronic headaches, the numbness in my hands and feet and that hug, ugh! Most fortunately, I have had very knowledgeable doctors who get it. I also have an amazing support system. However, I would say, don’t be afraid to take muscle relaxers (Baclofen has been my friend). Also, there is no weakness is needed pain reducers, with good doctors you sometimes have fine tune them but why suffer when there is help.
    I would tell fellow MSers, don’t let those around you put you down, unless they’ve lived in this crazy body you have, they have no right to judge!


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