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.
Tags Healthcare, Healthy Living, Symptoms      7 Appreciate this
| Reply

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 on her Instagram.

Leave a Comment

Thanks for sharing your thoughts with the community. Please note comments are moderated.


  • 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
  • Avatar
    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!!
  • Avatar
    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?
  • Kate   Oct 18, 2018 9:50 AM
    My husband has MS. I have lung cancer and I'm on an immunotherapy chemo pill daily. My friend has breast cancer and has been on chemo too. We, not my husband, both have terrible spasm cramp type pain and I'm a trooper, I never cry, this makes me burst into tears and ask God for help. It goes from leg to leg and I think is now spreading to my arms and back area but its the legs that are the worst, from toes to ankles to calves to groin muscles - so painful I can't even describe it. My breast cancer friend who's had cancer longer than me says its the myelin breaking down on the nerves from the chemo pills. She's stopped taking her chemo because of it. MS causes myelin to break down in the same way my cancer pills that are helping me live are doing to my body. So I believe you, I know this horrific pain. When I was seeing the MS dr when I first got diagnosed with lung cancer he said some of the MS drugs were very similar to my cancer drugs and that if they gave the cancer drugs to MS patients it might cure it but cancer drugs have too many side effects to do that. I find if you eat sugar it appears to make them happen more often. I jump into a hot shower until the pain dissipates enough so I can sleep. Or I run a handheld massager on the areas and that helps a little. Ibuprofen didnt' help me - Ex strength tylenol helps a little. They gave me gabapentin but I don't want to take it. Hang in there everyone. At least we are still alive.
  • Kimberly Rosso   Oct 18, 2018 9:51 AM
    I have experienced it all, along with swelling, joint replacements and extreme pain the dr. Won't treat anymore because of the new federal guidelines. so unfair I should have to live everyday of my life miserable because the federal government says so. such BS. SO UNFAIR!
  • Stephanie   Oct 18, 2018 10:15 AM
    Find a new doctor. I was diagnosed in 1989. Over the years i have had numerous ms related issues ranging from numbness to blindness to paralysis and yes, pain. My doctor has never told me "it's in your head". Good luck
  • Lori   Oct 18, 2018 10:22 AM
    I’m sorry your doctor doesn’t understand.. I have been blessed with a great MS doctor 😊 I think you should go to a new doctor... a doctor that understands MS. I have been making my own cannibis cream to rub on and I also take the CBD oil .. it doesn’t get u high ... but it does help with the pain😊 I’ll pray u get a better doctor that understands that MS does have REAL PAIN. Good luck to you❤️
  • Charlie   Oct 18, 2018 10:29 AM
    I have had MS (since the 80s) and pain, and have been told in my head as well. Finally, a fine neurologist told me lesions can cause pain. Gabapentin helps; cannabis too.
    As long as you are mobile that is paramount; you can find drugs and relaxation strategies to overcome the pain.
  • Mariana   Oct 18, 2018 10:37 AM
    "Maybe, it's time we consider that you're just a very anxious girl and it's time you got over what happened to you." The words of my neurologist when I confronted him about the pain I was feeling will never leave me. Thank you for writing it. It's clear it's a more pervasive problem that just one or two insensitive doctors.

    My MS diagnosis came after a violent episode brought on by vaccine left me unable to walk, use my hands, and see. I was submitted to plasmapheresis, and then 6 rounds of cyclophosphamide in 3 days. I was then sexually assaulted at knife point 6 months later. So you can imagine my fury.

    Just for kicks, I'll share what happened next:
    Me, angry tears streaming down my face (i love making males uncomfortable with tears): "That's rich. You of all people telling me to get over what happened, when it was the insensitivity of your interns, residents, and attendings at the hospital which cause so much of my trauma. A 3rd year resident told me that 'of course I was gonna feel sick after cyclophosphamide, after all it was made out of the same elements as mustard gas'. Do you think that's OK? When your team came into my room to insert the catheter for the plasmapherisis they walked in at 1am, turned on my light thus waking me up, and started speaking among themselves. After 8 minutes I spoke up and told them that I was sick, scared, and they were being incredibly rude. Those are your people. So excuse me if my experience turned me into an anxious 27 year old girl. Something like what I went through will do that to you. Sexual assault will do that to you. And do you think those words would have ever come out of your mouth if I were a man. No. The quality of care you are giving me is different because I'm a woman. You are very fired."

    Felt good hehe
  • david wagner   Oct 18, 2018 10:37 AM
    Hi Catherine,
    My Name is David Wagner, New Paltz NY
    I here you. I was also finally diagnosed wit MS in 2014. I am thinking its been in me forever, and now decided to show its ugly head.

    Fatigue, is my largest issue as well as hurt, not as the nuer say pain, back and legs

    Talk soon Dave cell # 914-456-0522
  • Desirea bragg   Oct 18, 2018 10:48 AM
    Reading your story brought tears to my eyes. I was diagnosed at 19 and told that I would be in s wheelchair within two years. I’m now 33 and just participated in the ms muckfest in May. My neuro now refers to me as his rockstar patient and asked me about all the hikes I’ve gone on since my last appointment. I fully believe my success is from proving to myself that I can still do it. Thank you so much for sharing your story!
  • REGINA   Oct 18, 2018 10:52 AM
    You go girl!! keep the faith and the fight!!
  • Michelle Burnett   Oct 18, 2018 11:02 AM
    Thank you so much for your story! I feel like that everyday!
  • Avatar
    sln6190  Oct 18, 2018 11:03 AM
    Noticed some odd numbness around the mid nineties. Ignored it. Put it down to having lived a pretty wild youth & the damage accumulated by some old injuries. My right leg started hurting a couple years later & I chalked it up to overuse seeing as I'd have a pretty bad injury to my left leg several years before. One day at lunch, eating in my truck at work, I shook out 4 more extra strength Tylenol, about the 3rd time that day & noted I'd had a headache non stop for about a month. Soon I started tripping & falling & couldn't seem to be able to stay on my feet more than a couple hours at a time. People joked I was drinking on the job, but I'd been sober for a few years at that time. Summer of '02, I had a health scare unrelated that did its best to do me in. Thankfully, I pulled through, but the headaches & leg pain never quit & in many ways seemed to dominate all my waking hours which were plentiful because sleep only seemed to come after severe exhaustion. Hard to get a nights rest when every time you move it wakes you up from the pain.

    It took over a year, but the Neurologist finally had an MS diagnosis. He said the headaches were common, but the leg pain was dubious, I think was the word he used. My Wife's friend suggested a second opinion & recommended another Neurologist. Been seeing him since. His specialty is MS & the pain that can be associated with it. Haven't found a way to stop it, but sometimes we can sand the rough edges off so getting through the day isn't as daunting as it used to be.

    The pain is real & I've met others whose bodies misinterpret the signals just as mine does. Makes it easier knowing I'm not the only one.
  • lightweaving  Oct 18, 2018 11:14 AM
    I was told by a dr., mine wanted me. to see. He told me I was crazy and MS that Ive had for 25 years I did not have. I could prove it to him by taking more tests and see more dr.
  • Michael Ward   Oct 18, 2018 11:47 AM
    I feel the same way. I am a regular at the gym and continue to walk and run with my dog. I have only been diagnosed in the past year. The drug that I am on has not changed me except it has made me more fatigued and has given me headache.
  • Catherine May   Oct 18, 2018 12:34 PM
    Wow, I am so sorry for your experience. I've had numbness and tingling for a couple of years but the year I experienced pain in my legs that was continuous and hard to describe. I had an upcoming appointment with my Neurolofists an he explained that was very much a part of my MS. He has given lectures about MS and pain and has several courses of action to offer to best fit the individual.
    You must be your own advocate in this journey and if it doesn't sit right investigate.
  • stacia stehman   Oct 18, 2018 12:39 PM
    i also have MS with excruciting pain i was told the same BS , but my family doctor at the time of my diagnosis told me she understood and finally helped me with pain meds i am still in pain with them but it was way worse tell your doc like i told all of mine TAKE ME OUT OF YOUR LITTLE SQUARE BOX BECAUSE I FEEL LIKE *****....GOD BLESS YOU HONEY I FEEL YOUR PAIN SINCERLY STACIA
  • Sally Scharff   Oct 18, 2018 12:46 PM
    I'm sorry your doctor wouldn't listen to you - find a new neurologist! My doctor referred me to a pain doctor who was able to help me with Lyrica. I've had pain in both feet for years. I hope you can find relief!
  • Gene   Oct 18, 2018 2:26 PM
    Here I’ve been thinking that my pains where all in my head too. My doctor has always written my complaints off to other things. I have discussed these same issues with my primary doctor. My primary doctor tells me it’s my MS. It’s become hard to believe either one. I seem to always end up on my own.
  • Sherry Morez   Oct 18, 2018 5:03 PM
    I've had MS for 31 years and my worst problem was severe burning pain, like intense sunburn! Nothing worked, I thought about suicide and then saw a specialist at UCLA who advised me to try Prozac. It works extremely well at 60mg/day. Pain is absolutely a part of MS for some people!! Your neurologist is misinformed (to say it nicely)!
  • Uncle Tom   Oct 18, 2018 5:32 PM
    Great article Cat! Are you sticking with your neurologist or looking for a new one?
  • jnorde  Oct 18, 2018 11:21 PM
    I applaud your determination! I've been experiencing increasing pain and tingling and weakness of my arms, neck, upper back and attributed it to the worsening cervical stenosis. I really don't know what to do about it. The cervical MRI didn't identify Ms lesions only the bony changes. What's up with this pain? Is this arthritis stenosis or the Ms? Can the community shed some light on this?
  • Lori   Oct 19, 2018 9:18 AM
    Thank you for this article. I have been complaining about for my foot pain to 4 different docs at the same hospital for 10 years. Saw my neuro last month and when I mentioned it to her she said "why does it hurt to walk"? Are you kidding? 10 years I have had this pain. Why does she think she is giving me pain meds? VERY frustrating!
  • Gloria   Oct 20, 2018 12:07 AM
    I have a neurologist who only treats MS patients, so she is more informed. Dr. Annette Okai, Dallas Baylor Methodist
  • Justyravgjoe   Oct 20, 2018 7:31 AM
    Wow, this is quite timely and relevant to me. I have had buzzing feelings for years, and seemed to have gotten more frequent recently.
    Then you mention heat intolerance and chronic headaches, both of which l suffer.

    But l have yet to be diagnosed with MS, and just came back from the neurologist not 12 hours ago.
    No previous MRI showed lesions, so no diagnosis of MS could be given.
    Next step is a spinal tap and another MRI of my brain.
    My mother had MS and although the disease is not hereditary, l believe there is some research that shows direct family members can have a genetic predisposition for the disease.
    So, thank you for posting this, no matter what my outcome, it's good to know I'm not alone.
  • Gabriel Barber   Oct 20, 2018 7:40 AM
    It was in your head, it is Multiple Sclerosis on your brain. And I read somewhere, that your brain, like your pain, is also "in your head". :)
  • David Kadlec   Oct 20, 2018 8:12 AM
    My first neurologist, the doctor who diagnosed my M.S. once told me, "I wish I could say I know what you're going through but I really have no idea." I respected his honesty and trusted the help he gave me." This doctor took the time to sit and talk with me. He listened to what I had to say and provided needed guidance to help me through my first days with an illness I knew absoultely nothing about.
  • Tanya   Oct 20, 2018 1:18 PM
    Wow, so glad to have opened my email today. Chronic pain is VERY real and affects every single day and night of my life. Joints, muscles, ribs, pelvis, back, neck...When it comes to trying to sleep, I call it "restless body" syndrome when trying to describe how it affects sleep . That's only one part of it, the cognitive changes, the balance issues, clumsiness, short term memory, word find problems, heat, cold intolerance, noise intolerance, sensory overload, deep nerve pins and needles awful itch sensation, and awful surface skin pins and needles severe itch, breakouts, headaches, dizziness, vertigo, spasms/knots and tremors, numbness, eye blur..., I could go on and on. And I feel as though the ms symptom management providers I see blow me off and make me feel as if these are not MS related. Give me a break. I need to find new providers. Chronic pain is VERY real. And I can relate and empathize with you all :( If anyone has experience with the MN VA MS providers I would love to hear your thoughts. I am considering changing MS providers and will be checking out the VA next (I am a veteran, not sure what the qualifications are, nor the quality of MS care?). Good luck to you all xoxo.
  • Miriam   Oct 20, 2018 3:08 PM
    I can tell your neurologist is not a MS specialist. The MS specialist tells me that pain is a normal part of MS. I had a Non MS neurologist to begin with that told me the same thing you heard plus that I didn’t have MS. Thank goodness for a good primary care doctor that didn’t agree an sent me to an MS specialist at Mayo Clinic in Jacksonville.
  • Brian   Oct 20, 2018 6:48 PM
    Fortunate that Dr James Simsarian was my neurologist who was also a primary contributor at the international MS CONSORTIUMs., A lesion located at my shoulder blade was the cause of my constant burning pain. Carbamazepine (tegretol) was prescribed. It is a brain blocker. The pain signal was still sent by the shoulder blade area, but the medicine blocked the signal's reception by the brain.
    Wishing you and all well.
    Carbamazepine 100 mg dose
    Carbatrol 200 and 300 mg doses.
    Generic name is Tegretol.
    Ask your Neurologist about it as an option.
  • Alstenia Smith-Sellers   Oct 20, 2018 6:49 PM
    I'm sorry that you are having such a terrible experience with your doctor realizing your challenge with MS related pain.

    I was diagnosed in 1996 and pain had not been identified as a primary symptom of MS. Now, my neurologist realizes that pain is real and he utilizes a combinations of medication and exercise to help ease the pain. In short the pain is real!! I take my meds 4x daily and workout three days a week, when the pain permits.

    The pain is real but you must manage the pain, not let it manage you. Stay strong my friend, we are all in this WAR together/
  • Aida Vazquez   Oct 22, 2018 7:41 AM
    Thank you for sharing your story. I never got a "It's all in your head" response. But I have left the Neuro's office with no answer to my painS too. I was diagnosed in April of 2017 after years of going to see my primary doctor, sometimes 2 or 3 a week, even though I saw many specialist in between. So my co-worker suggested I see a Neuro. I asked my primary for a referral to one and he did. From the first Apt. I had with him, he saw me a good 15 minutes and sent me for an MRI. I said, "Wow, he is that good." I see him again for the results, "You have lesions, that confirm you have MS." Okay... He sets me up with the medicine plan, blood work, ect. Every appointment after that was a full 5 minutes if that. I said to myself, in less than 5 minutes I get examined, I talk about my symptoms and I would leave with a new prescription (to add to the list). & not to mention he would answer personal calls during my visit. Anyway, I can go on about that Neuro. Lol I switched Neurologist and although I have a great relationship with this one and the office. I still leave with no answers at times. Because they are not sure why I have certain symptoms that are "not MS related." & that is frustrating. I freak out everything I feel something new, because I just feel like, why bother to mention it, if I know what they are going to say. So what to do, what to do... I don't know the answer either.
  • Joanne   Oct 22, 2018 6:35 PM
    I too have had the exact same pain all over my body. Like somebody used me as a personal punching bag. Pain deep inside limbs and core. I was also told it was not possible for decades. Now I know better. Feel better
  • Virginia   Oct 22, 2018 7:34 PM
    My Neurologist has been supportive. I have been prescribed Lyrica and since I have a ulcer and can't take Nsaids, I have been referred to the Pain Doctor. I also have back pain, arthritis pain and gut pain from gastroparesis but the neuropathy pain, which can feel like pins and needles, can be the worst of all. It's real. Remember, Not every doctor graduates at the top of his class.
  • Amber Berg   Oct 23, 2018 11:55 PM
    Wow this is my exact same story... I was told by multiple neurologists that, that was not associated with ms... I used to be in extreme pain everyday... I was in the hospital every day with no help... A doctor gave me gabapentin on a whim and it works
  • angela johnston   Oct 25, 2018 10:20 PM
    the problem I've had is that know dr not would get out off their specialty. In the last 2yr, I've been told I'm depressed it's all in my head until 1 nurse practitioner finally requested a simple x-ray of the chest found pulmonary hypertension 1 yr later after I of saying I had terrible chest arm pain finally I had an attack that was terrible the dr sent me on my way the next dr decided to do EKG found that spot, where air was not getting to my heart next day, had heart surgery also did an MRI found 3 new lesson still the pain that comes & goes all over my body is real when will dr get their ego out of the way & listen to their patents!
  • Kelly M   Oct 27, 2018 12:24 PM
    I have this ongoing problem. My legs are very painful along with my arms and my dr acts like I'm a drug seeker. I've had MS for 20 years. I hate most neurologists. They are closed minded. I'm glad you can run. I can't and I really don't like when ppl that can still workout and run/climb with ms say it doesn't hold them back. Good for you! I guess that makes me a loser to the MS Society. Let's not make those with MS who's lives have been forever changed that fight everyday to walk feel less than bc we can't overcome this disease. Be inspirational, not condescending. Be realistic and less idealistic for the rest of us.
  • Maggie   Oct 27, 2018 5:51 PM
    I also experience this kind of pain, and have for many years even as a teenager. Sometimes the pain is so bad it can drive you crazy, because really nothing relieves it. I have also been told by more than one doctor MS does not cause pain and they do not have an answer for me. I was diagnosed in 2011.
  • Cindy Lacy   Nov 18, 2018 1:39 PM
    I am in AZ alone and want to move back to CO where my daughter is so I have support and get out of the heat. She doesn't have room for me so I need to find a place to live in CO SPRINGS THAT IS affordable. Is there anyone out there living in Springs that can suggest something? I won't need it until October 2019. I can't afford to travel there in advance to find something. Thnx All
  • Margaret Ferrick   Dec 4, 2018 1:39 PM
    Thank you for your article! Yes, sometimes the answer really is, "Its all in my head!" But what that means is not that it's " imaginary. "
    It REALLY HURTS and there are real ways to help control it. If you are unfortunate enough to have a neurologist who doesn't understand, go get a new one! I've had both kinds of neurologist! There are some great ones out there!
  • Barbara Teller   Dec 4, 2018 8:52 PM
    My neuro is so good. He has said more than once when I have questioned various symptoms, "Yes, that is caused by your MS". Pain, inability to tolerate certain sounds (or music at all), unable to read, fantom itching, more pain... I canned my first neuro because he was a tool in general and worthless as an MS doctor. If you can't get honest answers from the doctor, time to find a new one. (Not always easy)
  • Donna Andrews   Dec 5, 2018 10:32 AM
    Just diagnosed and I have right eye swelling and pain. I explained that to my Dr. And he told me he has never heard of such a thing etc. After research I found out that eye pain etc maybe a sign of a lision on that side of the brain.
  • Lorrie Cummings   Dec 14, 2018 5:35 PM
    I feel your pain and the anger you felt. I'm lying in bed with my legs feeling like my legs are going to burst there so tight, pound, pound , pound like a jackhammer throbbing. The best way I can explain how they are feeling is if you can imagine lighting hitting a tree and it explodes in a million different direction that's how my bones feel. What are we going to do knowing that we will have to suffer through the pain no one understands how we feel except for the ones of us in this exclusive club called MS. The Dr's it Country that's hitting hard on pain meds so they're just going let us set here and suffer with every breath we take. It's just in human to sit by knowing what the pain in our mind & body is doing to us. Mine was all taken away at one time nothing for the pain I have in my legs or any part that decided to hurt and my brain not knowing which corner of my mind to hide in to keep all the other pain in my body from finding me. Has anyone ever looked in the mirror and you don't recognize the person looking back at You? It's a very scary feeling when you can't even recognize yourself!
  • Stephanie   Dec 17, 2018 4:40 PM
    I was dx in 2012 I realize that neurologists are knowledgeable on paper however they are not living with the disease. I keep a supply of cbd oil ...turmeric ...vit d and must needed me time.
  • Pauline Garvey   Dec 17, 2018 6:43 PM
    I’ll never forget after Twenty years of weird symptoms and vertigo and three different neurologists telling me it wasn’t MS even though I brought the results of my MRI. It took until 2007 to be officially diagnosed after I went to another neurologist and he did another MRI and spinal tap. I took the results and news to a doctor I was seeing for anxiety issues because no one listened to me. Her comment to me was, “I find it hard to believe you have Multiple Sclerosis.” I looked at her and said, “Well you can read my results and the second opinion results from the Mellen Center. I don’t need to come to you anymore convincing me relaxation and deep breathing would solve my problems.” Once damage is done it’s permanent. Exercise and eating the best I can gives me control over this disease. You do have control once you accept you may not climb a mountain but you can do a lot more than you think you can. I decided doing my treadmill gives me control over vertigo.
  • Colleen   Dec 17, 2018 9:14 PM
    Hi, I too have had a problem , if u will, with my last neurologist. I have not officially been diagnosed with MS. My primary and eye specialist believe I have all the symptoms for Remitting MS, all the many many tests results point to it. But the neurologist I was seeing adamantly said no, but never ,after 2 yrs, of tests w him, ever diagnosed me with anything. Just kept writing prescription after prescription. Resulting in no relief. I was however diagnosed by my rheumatologist over 15 years ago with fibromyalgia. And have had the same pain u spoke about. I have a new neurologist that I will be seeing for 1st time in January and hope he will be able to diagnose me correctly. And get on medicine that will actually help my pain, not just covering up.
  • Janet   Dec 18, 2018 8:21 AM
    You need a new doctor!
  • Laurali   Dec 19, 2018 11:15 AM
    I so agree. until you walk in my shoes (or take the nasty M.S. medicine- don't tell me how I feel. The pain is real.
  • Sheila Moore   Feb 8, 2019 5:56 PM
    I empathize with the MS Warrior who wrote about the mis-information his Neurologists had given him about his pain. I wasn't TOLD my pain was imaginary, but suffice it to say that I have been prescribed a host of other meds that caused a host of other problems. The two rx's that helped my pain the most, I do not take. The 1st caused such out-of-control weight gain that I HAD TO stop taking it. The 2nd is a strong opioid that I have only been given twice in the ER and my doctors won't prescribe it BECAUSE of the supposed "opioid crisis" they've been lectured about. So, I live with terrible pain most of the time. That is the only thing that's worse than feeling like nobody cares enough about how I feel to help me do anything about it! I think it's great that you live in the gym and run, but I cannot do either because of balance issues and the fact that exercise makes the pain far worse. To compound the problems, I am struggling with weight gain. And people wonder why I have to fight against depression setting in!
  • Edie   Feb 21, 2019 2:01 PM
    Recently, I've been getting random short, sharp, intense pains in various odd parts of my body -- toes, foot, hands, arms. After several painful jabs, it goes away. Some days, it doesn't happen and other days it happens several times. Anyone else experiencing a similar syndrome?
  • Deborah Davidson   Mar 28, 2019 5:40 PM
    My roommate and best friend is an R.N. (T.G.) We were at the MD"s two days ago when I was describing pain in my arms and pin like feelings in my hands, worse than normal. This is a problem as I use forearm crutches as assistive devices to walk. This man looked at me straight in the face and asked me if I had been a bit depressed. I looked at my friend, we both shook our heads with disbelief!! UNEDUCATED.
  • Avatar
    angelishome17  Oct 12, 2019 8:22 PM
    I feel the same way and tell me same thing, being a RN I think/believe its something else to.