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Multiple Sclerosis can hurt! Pain Syndromes in MS


Howdy! My name is Aaron Boster, thanks for
tuning in to an impromptu educational opportunity here at OhioHealth MS
Cenrer. Today I want to speak about pain in Multiple Sclerosis. When I attended
medical school they taught me that MS doesn’t cause pain and they taught me
wrong. There’s a lot of different kinds of pain in MS and sometimes you can
trick the patient or even the doctor and the thinking is a different problem. So
we’ll talk about a couple different kinds of pain today.
The first one is OPTIC NEURITIS. Now optic neuritis is where the nerve that
runs the eyeball, it becomes inflamed and when it becomes inflamed you lose vision
but a very common symptom associated with optic neuritis is that the eye
hurts when you turn your eye looking left right up and down and. So a patient
will commonly come in and say I’m having decreased vision and it hurts my eye,
hurts sometimes they haven’t even noticed the visual loss but they notice
that their eye hurts when they move their eye around, and so that’s a form of
pain which is a bit unique to Multiple Sclerosis. The second kind of pain that I
want to talk about is called TRIGEMINAL NEURALGIA. now the trigeminal nerve is
the nerve that runs the sensation of your face and if that nerve becomes
inflamed you can have a sharp stabbing pain in your face which has been
described as some of the most severe pain that a human being can experience.
In Multiple Sclerosis if you have damage to the brain stem where the nerve comes
out of you can also have trigeminal neuralgia and this is a lancinating pain
often times people think there’s something wrong with their teeth or
there’s something wrong with their jaw and they see an oral surgeon only to
find out that it’s actually related to Multiple Sclerosis. The next kind of pain
that I want to discuss is the MS HUG. Now this is not a nice kind of hug that you
get from your mom, this is a description of being crushed or being squeezed some
people say “it feels like I have a belt wrapped around me” or “I have on really
tight undergarments” sometimes people they feel like they can’t get
get a deep breath, or they think that they have chest pain very commonly the first time
someone has an MS hug they’re getting EKGs and they’re getting tests to look
for pulmonary embolisms and at the end of the day what this is is a lesion in
this spinal cord which is sending a message of pain in a band around their
waist. This is a very aggravating kind of pain and it’s kindly seen in Multiple
Sclerosis in the setting of spinal cord damage. Another type of pain which I want
to discuss also involves the spinal cord there means now Lhermitte is the name of
a dead white European man but Lhermittes phenomenon is something that’s been
described the medical literature for quite some time and seen very commonly in MS. A patient will flex their neck and upon flexing their neck they have a zip of
electricity that runs down their back into their toes. What’s happening is they
have a spinal cord lesion and when they flex their neck they’re stretching this,
they’re stretching out the spinal cord and it’s sending, it’s called an ephaptic, a zip down their legs and it can be very very painful and sometimes
patients to avoid it will simply not move their neck, understandably so. Burning limb pain, that’s not a very
specific kind of pain. I see it all the time damage to anywhere along the
sensory pathways can result in weird abnormal ouchie feelings sometimes
patients will say that they feel like their legs on fire sometimes it feels
icy cold sometimes it just feels rough and a lot of times patients have
difficulty describing it except for, to say my leg doesn’t feel right it really
hurts and this is a very, very common thing to see in Multiple Sclerosis. Two
more times of pain that I want to discuss. Spasticity, spasticity is a
situation where the muscles are no longer cooperating. What I mean is what I
want to do this the bicep has to get shorter and the tricep has to relax in
the setting of spasticity because of damage to the brain and spinal cord when
you want to bring your arm like this the spinal cord isn’t letting go and so your
tricep is trying to do that and the result is a tug-of-war. Now if you’re
wondering why I say this, first I want you to do an experiment at home take
your hand and ball it up and a fist and hold the fist, for the next five hours
and see how it feels! Even just doing that for a few seconds, it starts to be
ouchie and hurt and if you need to move the limit can be very very painful.
Spasticity causes cramps like a charley horse which is extremely painful and so
I feel that spasticity is a type of pain that we need to consider when we’re
looking at MS. Lastly I want to talk about musculoskeletal problems and this
is a secondary kind of pain seen in MS. If you have a hitch in your giddyup and
so you have to use your your legs differently think about what’s happening
to this hip or did I need and overtime you can wear on the joints from walking
incorrectly and cause musculoskeletal pain. Again my name is Aaron Boster. Thank
you for tuning in to this impromptu educational experience. A long time ago
in med school they taught me that MS didn’t cause pain and they were wrong!

56 thoughts on “Multiple Sclerosis can hurt! Pain Syndromes in MS

  1. Oh are you ever correct! PAIN with MS is alive and well, and has become my middle name. I have had all 6 of them shown in the video. Lehemitte's was my first symptom in 1985. The HUG is with me a lot. I'm seeing a pain specialist now and getting inj in spine for pain. Wish me luck unless you know of a better way to try and get some pain relief.

  2. I am SO GLAD you realize and are educating people that MS DOES hurt… a lot!! I have experienced all of the types you discussed, with the exception of ocular pain, though I do get headaches a lot and moving my eyes or head suddenly will mess with proprioception. Right now, musculoskeletal, the hug, spasticity, and numb arms and hands are my everyday, constant companions. Today is a relatively good day though, so I’m thankful!

  3. Has anyone ever used a weighted blanket? I have used them to provide deep pressure to students affected with autism for years. There is a noticeable calming effect.
    I was thinking that it might help my husband who has MS. Any thoughts?

  4. Yes a very informative video, I’ve had constant burning in my feet for two years as well as legs that don’t work properly so I have a painful knee now too because of how I walk. As well as a host of other issues. At least I now know what to watch out for, not looking forward to the MS hug!!

  5. Как вылечить MS? Заранее благодарен………….

    Читайте антрософию Р.Штайнера……….
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  6. Thanks. I now realize my pain is both musculoskeletal and spasticity oriented. See I developed Avascular Necrosis in both hips from the Prednisone given to fight MS flare ups 20 yrs ago. Have had both hips replaced so far and probably both shoulders and knees in the future.
    Bout 10 yrs ago I saw a GP and he honestly said that pain is not associated with MS. What! I understand pain is the #1 complain of us with this disease.
    At this time my neurologist prescribes 4 x 10/325 hydrocodone per day. It does keep the darkest pain at bey but society today makes us that rely on opiates feel as if we are drug addicts. I'm not addicted to the meds, I'm addicted to the small window of relief I get from them.
    I wish pain was more readily addressed for us without the stigma.

  7. I get the burning in my limbs, severe spasticity and the electric shock from my neck down my spinal cord. I get the MS hug as well. Thank you for your videos we are watching them as a family.

  8. I been haveing stabbing type of feeling in eye very inflamed feeling the eye doctor said I have optical neuritis so now they're going to do a lumbar puncture my Ms specialist to see if I have it in my spinal fluid

  9. OMG all of this is going on with me now. Thank you so much, my neuro will never make me feel like I'm going crazy again

  10. how does this illness can change a person's emotions ,and how can it make a person depressed ,is it due the lesions in the brain or what ?

  11. I can’t believe you actually talked about the Burning Limb Pain! I get this around my mid-section front and back. I have said it feels like I’ve put “Bengay” all around my mid-section. Icy hot feeling that drives me crazy!!! Thank you, thank you for touching on this!!! Now I believe that I have spasticity in my neck combined with arthritis. I can not turn my head either direction and has terrible pain. Is this even possible??

  12. Sir, you have described all of the pain I have experienced over the years. At the moment, I'm experiencing shooting pain either on the left or right side of my neck and lower mandibular. My neck is very stiff. At the moment I have the MS hug. To top the lot off, I need a cane to walk as I become dizzy. I can not hear anyone walking up, behind me…..all this has been going on since I was diagnosed 2007. Sad thing is I'm the quiet patient that doesn't want to create waves.xxxx

  13. Excellent work thank you. Wish there would be a memo sent to every MD across the country. Also as a patient with a baclofen pump (that does not help as advertised) is spasticity with a preexisting condition Ala broken hip,fused vertebrae ,entrapped ulnar nerve and a Gabapentinoid allergy. Thanks

  14. The description of all the pain I have everyday. Sometimes the optic neuritis feels like someone stabbed a sharp stick to my eye. Thanks for this. To my pain clinic doctors, this would be valuable to understand my pain.

  15. great video…..thanks… the pain my husband experienced was totally debilitating ..i think this is why the suicide rate is so high with m/s people.. he had every symptom you mentioned and then some others… he had pain in his ribs so bad he could not breath and we were sure he fell and broke some ribs but it was not broken ribs it just felt like it .. he was a pro boxer at one point in his life so he knew what broken ribs felt like and how to deal with pain..

  16. Thank you Aaron, I'm hoping your videos will help me build a case to present to my GP or even better give me reassurance that what I've been suffering with isn't MS

  17. Can u tell me if anyone with ms complains about a SEVERE PAIN, I get a pain randomly but it’s close to the same day every month within 5 days before or after it occurred the month(s) prior. it’s starts about halfway up my back almost like I’m being squeezed if ur ever cried before like really cried to the point ur throat was achy that’s what it feels like but 100 times worse it will move like electricity up my back and sometimes back down again but it will stay mainly in my throat area and knock me of my feet if I don’t concentrate on staying upright. There will also be a lot of burning in my back and it’ll hurt soooo bad I’ll want to scream but i can’t of it hurts worse, my mom has been opened up to the idea that I have ms lately, the symptoms aside what I described seem to fit and well that’s how I got to your video, thanks for the information by the way

  18. Hello Aaron, the trigeminal nuralgia is the most debilitating pain I have ever experienced, despite the birth of my kids! I can understand why some people call this pain the suicide pain!
    Spasticity comes and goes. Heat makes it worse, so last summer was terrible for me. I spent the complete summer inside and had cooling devices on me!
    Optic neuritis was my first symptom, that was the reason why my neurologist sent me to the hospital for spinal tab and MRIs of my head and spinal cord. This all lead to the diagnosis.
    Wishing you a wonderful week, all the best…best regards, Britta

  19. Dr. B., you're right-on (as always!) about MS-related pain. Trigeminal neuralgia has manifested in different ways with me, sometimes even mimicking tooth pain (my dentist ruled out any visible nerve-related or other problems). Sometimes, it's that sharp, lancinating pain that makes me hold my fingers along the nerve to somehow "mask" it. L'hermitte and his rotten "sign" manifested via an ensuing shock sensation in my upper right thigh after forward flexion of my neck. People around us often think we're off our collective rocker when we describe this stuff (except for my husband, who recognizes MS dysfunction in me better than I do!).

  20. yes exactly this is what happened to my eye. pain turning it, visual loss, double vision..it hurt like the blazes and the optometrist told me there was nothing wrong…ohh yes the jaw pain, literally takes me to my knees… yes the belt around the bottom of my ribs, just under the bra… spacisity, boy oh boy yes (Dr told me it wasnt happening and he didnt believe me)..I wish I had watched your videos earlier……had MRI today… I will simply cry if they dont find anything… I dont want MS but I do want to know what the dickens is happening to my body, its gone loopy and I am at the end of my tether here….

  21. This come up in my feed and I have another painful condition that has MS as a higher than average comorbidity plus 2 autoimmune arthritis's and Dysautonomia. I just thought I would watch this just out of interest and I have had all but one of these symptoms. I'm going to do a bit more reading on MS.

  22. Yes DrBoster, I have pain with my M.S., and I cramp up in different muscle and hands and feet and arms and legs it's a different kind of cramp where you get stuck in a position and have to work which ever area out just to move again and yes it is painful, thank you for the message

  23. The TN pain you mentioned.. can it feel like someone injected ice water into the skin around the sinus area? What about a spot of occasional numbness in the corner of the mouth.. also if having a sudden onset of bursitis and tendonitis in the arm and shoulder causing the thumb and forefinger to go numb, it's been a few years ago and it's still numb.. I have so many questions cause I feel like I've been falling apart more and more every day and Dr's just blow me off cause I'm constantly expressing that I'm exhausted and in quite a bit of pain so they probably think I'm seeking but I'm not. I just want to know what's causing it and when my new Dr stated that I shouldn't be in so much pain when my arthritis, scoliosis and sciatica are "mild at best" and I've had migraine headaches for about 6 months now after having chronic ovulation pain cystitis found on ultrasound and possibly endometriosis

  24. Yes! I’m physician. 10 years with MS. My first symptom was blow torch like pain in my right leg.
    It took almost a year to make my diagnosis. I had horrible Lherrmittes.
    Squeezing around my thorax and face. Sometimes my left arm.

  25. I was just diagnosed and Jesus this is spot on. I had TN and thought I was dying because I was like something wrong with my teeth and I needed a root canal. Went to the ER and the doctor I had was good he said I dont wanna scare you but it sounds like MS I wont to wast time doing a CT scan well didn’t get much out that visit besides the lesions on my brain. Found a neurologist and 3 months later I as diagnosed with RRMS and have had multiple relapses over the course 3 months waiting for insurance approval for lemtrada as my first line. Thank you for these videos especially for me being new to MS and all it causes.

  26. Eh, I got it all! The varied limb pain, though. Hot lava, dead feet, icy for long needles, chewing on foil. Good luck y'all. I'm sorry we have this, but we're not alone.

  27. I was just diagnose with MS and until now I just feel numbness in my right hand and my right eye is blurry in my next appointment my doctor will talk to me about which medicine I should take. Hopefully I don’t experience any of these pains and I’m really sorry for the people who experienced them🙏🏻

  28. You explained everything I feel. It can hurt so bad some days. The tooth pain you said is horrible. I also the same ice pick type pain in my ears and ice pick type pains in my brain. The pain stuns you and you need a few minutes to figure out again what you were doing or saying. I also can feel like I have bugs crawling all over my skin or stinging or bitting me and can happen at the same time as a nerve electrical storm. Very painful. I have some nights taken every single pain killer, muscle relaxers, anxiety pills, weed products, opioids, sleeping pills and not been able to move from all the meds but still the pain won’t subside. MS can be very painful. I do have many good days but some days are so bad, nothing helps. Thank you for caring and studying MS to help us with it!

  29. I want to forward the link to a quack my husband is forced to go to because his Dr retired. This genius actually told my husband the other day MS doesn't cause pain. Yes, in 2019 this "Dr" actually believes that. He plans on cutting off his pain meds which have given him somewhat of a normal life. He treats him like a junkie and spends the entire office visit arguing about pain management instead of checking his health. He sent him home with a cough and a temp of 101 with nothing for it.
    Any advice would be greatly appreciated.

  30. I have this problem again for past month n half along with arm starting up again it feel like pulled out 9f joint but didnt do anything and weakness being in my for arms again

  31. What would you suggest as the best treatment for muscular skeletal pain? I suffer from hip and knee pain and have been taking Ampyra for a little over a year, but recently my hip and knee pain have started to worsen.

  32. God Bless you!!! I've been told by so many doctors, even my own MS doc I see now that MS isn't painful, I usually tell them to walk a mile in my in shoes & I bet they wouldn't make it a block. I've just discovered your videos & am watching them , but I had to tell you how grateful I am to know that there is at least 1 doc out there that knows his stuff. I've been fighting the MS Monster for 28yrs. God Bless you, Doc.

  33. Chest, arms, and face, i get a numb like tingling feeling with my m.s. there are days it feels like my skin is crawling. My walking is effected as well as speech, the pain is unreal some days to point my pain meds don't help. At work, i hide in my vehicle during lunch break sometimes on the verge of tears from the pain, this stuff is no joke, thankfully my supervisor knows about m.s. . Everything in this video is spot on

  34. Yep I've have damage in my right eye nervous damage in the back of my eye that's what the eye doctor told me then he told me there's nothing they can't do because it's damage to bad it hurts in my arms around my shoulders in my spine also have problem with my bladder too it sucks having MS

  35. Dr. Boster, you mentioned that Lhermitte's is caused by a lesion in the spine. Is it possible for it to be caused by a lesion in the brain? I was told I don't have any lesions on my spine but have been experiencing the electric shock sensation. Thanks!

  36. 9 years ago when I had the first symptoms I was also told MS doesn't hurt! That was so misleading, but now thanks to you I can finally explain my chest pain! Also, I had TN and it is definitely the worst pain ever, I hope it will never come back

  37. First time I felt L'Hermitte's I was alone and the feeling was so bizarre I laughed. I call it "The electric zipper". Mine doesn't hurt. It feels like a strong buzz. I get super sharp stabbing pain in my ear. It flashes sometimes only once. Sometimes it happens every few seconds for hours. Sometimes it lasts for days. That pain is hideous. Is that trigeminal neuralgia? It feels like an icepick in my ear. Horrible. The MS hug is like a steel boned corset that is 3 sizes too small. horrible!

  38. Thank you for this video! I had Lhermitte's for years. I thought I was crazy until a fellow MSer told me what it was!

  39. I have every single symptom as well as muscle weakness and inflammation! The muscle inflammation has doubled is what I was told in a yr, but not enough to worry! It's clear as day what's going on not sure why I'm not being heard! Great video 😢

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