Imaginary Pain

The buzzing throughout my arms, hands, legs and feet had not let up for 3 full days. My annual checkup with my neurologist was just a day away, so I figured, what better timing? I practically danced into the office and was so excited to get some answers about this newfound pain.

Enter the man of the hour, and come to find out, it’s… all… in my head? Excuse me?

Everyone tends to experience very different symptoms when it comes to their own personal journey with MS. Some people react poorly to the heat, some have chronic headaches. For me, the pain I experience is something similar to growing pains. You know, that stretching and throbbing sensation you used to get when you were hitting your growth spurt? Now, take those growing pains and amplify that by about 1,000,000. That is the pain I experience most often in my own personal journey with MS.

I explained this to my neurologist, and he genuinely told me it was all in my head; that other than “numbness and tingling,” there is no other type of pain associated with multiple sclerosis.
When I stepped into that office, hopeful and looking for an explanation, I left feeling very distraught. No, a better word would be angry. I was angry that this was only happening to me and that no one else experienced this type of pain. I was angry that this disease chose me to send these abnormal throbbing sensations throughout my body and deep into my core. What made me special?

Absolutely nothing.

I spent some time thinking on it and concluded that I was not the one who was different here, but that I was given some faulty information. I decided to reach out to my supportive community through my Instagram account and asked other MS warriors like myself if they had ever experienced this pain, too.

The conclusion?

I got about 15 messages in my inbox singing the hallelujah choir that someone else understood. That their neurologists had also told them it was all their imagination. It was both invigorating and terrifying. I felt so reassured to know that others understood exactly what I was going through, but I was also concerned at just how many physicians are out there telling their patients that their very real pain is only in their head.

Since the day of my diagnosis when my first neurologist told me my quality of life would suffer and I would never run again, I have questioned the word of others. I respect them for their education and appreciate the help they provide me, but I question everything. I run at least 5K a week and live in the gym. My quality of life is A-Okay, so I proved that first doctor wrong. I proved the second one wrong with my supportive community of amazing MS warriors, too.

At the end of the day, our experience is our own, but always remember something: this is your story. You are not crazy, you are justified in how you feel, and you are never alone. Keep pushing forward and remember that together we are stronger than MS!

For more information on MS and pain, check out our library of resources here.
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Catherine Weston

Catherine is a professional in the medical marketing industry from Long Island, NY. She aspires to show the world that MS doesn't hold her back. She was diagnosed in 2014 and has been striving to help others overcome their fears and limitations since (she also loves sheep!). Keep up with Catherine and her adventures in wellness through her blog!

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  • Jen   Oct 3, 2018 10:47 PM
    Dx'd 2013, after 15 plus years of various wierd abnormalities...
    2015 I chose to get tested for RA. To no avail... Get this, the RA specialist said, "It's your MS causing your pain."

    Now I'm no stranger to pain. What causes it fascinates, and perplexes me.
    Is it "spasticity"? Is it "degenerative disc disease"? Is it "just in my head"... Ahh ha! So are the broken down myelin sheaths of my nerves.

    We seem to want to find out what is causing it. Why?
    So we can stop it. Deal with it. Manage it. Find others who have answers to help...

    Shame on your Neurologist. I would find a new one.
  • Babette Holland   Oct 4, 2018 10:25 AM
    PLEASE! Both writer and commenter, get a new Neuro ASAP. SHAME on him. I hope soon it will be much better for you both. Guaranteed mentally.
  • KIMBERLY B   Oct 4, 2018 12:26 PM
    I'm glad to hear this...not that your doctor said it was in your head but that you KNOW it is NOT! I have fired a few MS docs just from being diagnosed in 2016...2 short years and I've fired 3. The ones who told me I was severely depressed and that's where ALL of my symptoms were coming from. The ones that told me I ABSOLUTELY did not have MS and the ones who said I was embellishing my symptoms. No, none of it was in my head and to dismiss me as being crazy or depressed didn't work for me either. I felt it and I knew others out there did too. Even if they didn't, I know I'm not crazy and I know my body. WE all do! They work for us, we pay them and even though the respect is there for all of the education they have gone thru they all believe different things. You could get 5 different MS docs in a room and 3 would say totally different things that THEY believe about MS. Not one of them are going through it. Again, WE know our bodies and WE know when they are not feeling right (normal). So, if you are not happy with your doctor or think they are dismissing might not be on the same page and you might want to look for another. If you like him/her keep them but have a heart to heart with them and let them know you don't think you are on the same page. The more I read these blogs the more I know I am not crazy and it's not in my head ;) I wish you the best and I love hearing that you are still active!
  • Angela Knudsen   Oct 6, 2018 1:11 AM
    Glad for the info and sharing your experiences. Sorry you were denigrated by your Neurologist. Just because he’s had many years of advanced school doesn’t mean he knows EVERYTHING about MS. We, as medical customers, need to keep in mind that a doctor is (1) paid by us (thru whatever kind of insurance) (2) has taken the Hippocratic oath to “above all, do no harm” (3) owes us respect and dignity in his/her interactions with us (4) may not know what the symptoms are that we are experiencing but feels s/he has to come up with some kind of an answer to not embarrass themselves (5) possibly biased in their opinion toward you but isn’t willing to address it.
    If you are dissatisfied with a doctor for any reason, it behooves you to either bring it up to them and discuss it objectively or find a different one you are better matched with and can be part of your medical team. The more years we are diagnosed with MS the more likely we will have multiple doctors for different symptoms/ conditions. Wouldn’t you like to have a medical team on your side as you proactively approach whatever conditions your body has in the future? Start explaining you have a medical team and ask if they would like to join it. Their answer and attitude will clue you in quickly so you don’t waste your time or theirs. I hope this perspective helps and if it doesn’t, set it aside. If it does, let me know. I have had a LOT of experiences with MS and have lots of ideas. We’re all in this together, Angela
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    NutMeg  Oct 6, 2018 1:33 PM
    Thanks so much for sharing Catherine! I was just diagnosed 2 months ago and am struggling with doctors as well. I came in armed with a large list of symptoms hoping that I could get therapy to assist with the cognitive symptoms. My doctor is very kind but basically said only the vertigo, heat issues and a couple other symptoms were related to MS, and the locations of my lesions didn’t correspond to the issues I was having so the rest were body’s response to stress. He was very kind, but I have been through the GAUNLET of stresses with a chronically ill child, traumatic deaths, the works and have NEVER had severe speech and cognition issues as well as these electrical shocks. Also, a few moments earlier he mentioned that MRI tech still cannot dete t every lesion, so wouldn’t it make sense that perhaps it’s “invisible lesions”? Also, the initial doc who diagnosed me said I had a spot on my brains stem, but I will be 100% fine with no symptoms. He referred me to this doc who is THE MS doc for UH, and this doc couldn’t see the brain stem spot and said having a decent sized lesion on my spine isn’t great. I’ve spoken to others with MS and was relieved to hear that it IS MS. Sorry doc, it I believe those living with it over you. I am bummed that after 2 months I’m having my first relapse or whatever you call it and have been down for days now. It sucks, but thank you all for sharing your symptoms and experiences so that we KNOWS it’s NOT in our heads!!
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    dcyrdomiko1  Oct 13, 2018 10:02 AM
    Ahhhh guess what. I’m another one with this horrible leg pain. The only way I know how to explain it and keep in mind it’s BOth legs here. A throbbing tooth ache that won’t give. The more activities I do the more pain. The muscles contractions, pulling, electric shocks, the burning, tingling. Yep NOT MS. Ms has NO pain. Ok so do the activities. ARE YOU KIDDING ME???? Mine all comes down to pain meds. They rather have you suffer than worry about prescription pain meds. I’m not a pill kind of person either. Hate chemicals in my body period. If pain medication is going to help then I’m gonna fight like heck. Now here’s the other problem. Oh they only help for a short time. But why is it helping when I take them with Motrin? I never full on a 30 day time, I always take only when needed. A pain management doctor had me taking much more potent stuff the minute I woke up to beat the pain and to have a quality of life. Now I’m to use this baby pain med as last resort. So quality of life no more. Pain is not common with MS. Ummm really???? I read it every where. 50% of people suffer chronic pain. Do the books lie? Are we lying? Why aren’t they taking us seriously? How can a MS doctor be so closed minded? Is this all due to the insurance companies trying to control our doctors now? The government? Insurance companies now tell doctors when and how much medications can be prescribed. What is happening to this world? Are the sick supposed to continue and suffer? Why can’t we have that option of ending our life’s (medically) if we cannot have a somewhat quality life? What is happening to us?