I was diagnosed in nineteen 89 But I had pretty significant symptoms
for about at least five years prior as the MS progressed I had more neurologic pain and um stabbing pain in my ear and behind my eye and I get a feeling of ice burn in my hands and my feet and up my arms or up my legs and so those are more neurologic pain if you talk to many pain experts fifteen
years ago there were really renowned persons who
would say that if a patient has pain it's not MS
but actually research has shown especially the last
decade that as many as as 65 to 80 percent of people with MS experience chronic pain sometimes people with MS I will come to me and say that
someone told them that their pain is all in their head and what I often tell them is yes pain
is in your head because your brain is in your head and your brain is one of the most
important parts of our pain system certainly even though
pain often cannot be seen by others that doesn't make it any less real for
many it does come and go can vary for many people it can get worse
as the day wears on their fatigue increases their activities but but it's highly
variable um both amongst people as well as within people
I often find that if someone comes to my office and reports a new incidence of pain I might be alert to
the fact that this could be an exacerbation if it's a new pain or pain that hasn't
been around for a while you may want to see a neurologist and
discuss that although certainly it's important to know where pain is coming from especially
when its first presenting that might lead to different kinds of treatments I think
what's important is that whether or not it's from the MS it still pain that can get in their way
functioning and in a way their lives and it's worth
treating people with MS are at greater risk for the experience of pain as a result of a
few different factors and one of those is there ages people get older their at
greater risk for pain research has shown that women experience
more pain who have MS than the men people with greater disability experience pain that is obvious cause if you have more disability you're gonna accrue muscular skeletal pain along the way pain is experienced with people who are
depressed who have less social support greater anxiety pain is
experienced people who have relapsing disease that is progressing or unpredictable the
greatest amount of pain is experienced by people who have pain in more than one place in the body multiple spots and
folks with more than one area of pain experience greater severity
and have greater complaint of pain there's a real you know certainly a very
biological or physical component to the pain but there's also psychosocial factors in
that has to do with how people think about their pain whether or not they
feel they have strategies for managing their pain how people in their environment respond
to them and how it affects their social lives those kinds of factors also
play a role in a person's ultimate experience with
pain in multiple sclerosis there are two
kinds of pain that people experience one of them is
simply muscular skeletal pain the kind pain that comes from greater
disability sitting in wheelchairs the seat of teh
wheelchair impact your backside compensating in your gate when you walk if you have
an uneven gate so muscular skeletal pain absolutely happens but usually with
greater disability another type of pain in very much common in MS is neuropathic
pain or central pain central pain exists because
there's a lesion in the central nervous system lesions
cause pain because they fire erratically they are lesions that
increase ions like sodium and calcium to come
into the cell and those ions are very excitatory
to the cell and when they come into the cell they help cell react and it reacts in in a
wild erratoc manner and set up pain response
the neuropathic or central pain is either steady pain continues pain or can be
intermittent and it can be evoked by touching or an action or can be spontaneous just
happening so an example of that type of pain is trigeminal neuralgia that's a very sharp rancinating pain
it feels like it ice pick and it's evoked it's an evoked pain that's evoked by chewing by temperature by wind blowing
on the cheek by speaking the most common cause of trigeminal neuralgia under the age of 50 is MS but many
patients with MS experience other types of neuropathic
pain it can be a girdling sensation around the trunk or a
sensation in the legs sometimes it's just the sensation of
numbness sometimes a sensation of tingling pins
and needles tingling sometimes a sense deep boring or burning pain the pain can be quite
distressing and the fact is that we understand very
little about the genesis of neuropathic pain in disorders like MS. It's a very important
public health challenge lot of attention is being to it
the real challenge is understanding and finding new therapies for neuropathic pain one of the challenges for understanding pain in MS is that we don't have a good
animal model we don't have a cellular model what we
don't know and this is very important in terms of
development of new and more effective class drugs are what are the molecular drivers of neuropathic pain in MS and related disorders we know that
there are nine different genes that encode 9 different sodium channels they share a very similar overall structure overall
architecture but they have slightly different amino
acid sequences the difference sodium channels you can
think of them almost as being different types of molecular batteries some are easy to turn on and off others
are harder some generate a lot of current others a little current some generate
current that stays around for a long time after you turn them on others turn off very quickly and
different types of nerve cells contain different types of sodium channels and so they chatter
nerve cells contain thousands hundreds of thousands of sodium channels and that's what lets them generate nerve
impulses there are there are existing sodium channel blockers phenytoin, carbamazepine, were originally developed as anti
epilepsy medicines and they've been used safely for many
decades they target all the sodium channels relatively indiscriminately and when
doses of these medications get high they cause
side effects double vision sleepiness confusion lost balance I suspect that we could cure neuropathic pain, treat it very very effectively if we could take
the doses the sodium channel blockers high enough but these off target side
effects limit therapeutic window and and so they're of limited value in in treating neuropathic pain the Holy
Grail of pain research for the past three decades has been the question is there a
type of sodium channel present in and only in pain signaling nerve cells because if that were so and if one
could targeted it then one would have pain medication without side effect
without confusion or double vision or sleepiness and I think it's not
unrealistic to expect that some time in the foreseeable future there will be entirely new classes pain medications that are much more
effective than what we have pain is a condition that really transcends more than just sensation of pain and people who have pain for a long time will develop what's called suffering and we
all know the difference i think between suffering and pain suffering is the
emotional component of the nerve transmission experience chronic pain and pain can
also cause depression seventy-five percent of patients who suffer from chronic pain will
develop a major depressive disorder at some time in their lives and pain also causes chronic
debilitation if you go to the International Association for the Study
of Pain definition of pain the definition states
that pain is an unpleasant sensory and emotional
experience and so it doesn't say or an emotional experience it says and
emotional experience it's always an emotional experience for everybody who
suffers from studies have shown that people who have
MS with pain versus people who have MS and don't have pain have much lower quality some life
they're much less likely to participate in activities that they value and they're much more likely to be
depressed the emotional part pain pic can become a catastrophe people
can look at pain and think I will never get out of this pain I will never be
better my life will never be better and that thinking is destructive. the
thinking then makes the pain worse so early
intervention before people get to the point catastrophizing
pain is very important Avalon was little she was
eighteen months to two years old and I was having a really bad attack I was emotional I felt terrible it kind of affects the emotions
I'm in pain i can't even grip a pencil and thinking I was a university
professor now what am I all the sudden Avalon goes to the
sliding glass door and throws something out the window. so I get up n walk over and those little bear puzzles you know where you have a little faces and their the clothes and the different types of
expressions all of sudden I look out the window and there are mad and sad are thrown out the window and she had yelled get out and I thought oh
my gosh that's my choice I can throw mad and sad
out the window yes I can be sad I can have days I can
be that but I can't let it ruin our lives
certainly pain really dictates in all of our lives in
it and connects us to many different aspects of how we deal
with the challenges life every day you can't focus on what you can't do or
what you can't be but but on on what you can do one of the big things I think that makes a
significant difference in our family in the way that Elysa deals
with with her MS is that she doesn't
allow herself to be coddled I mean yeah there's times when she's
gonna say you know I just can't do that today I'll never be able to understand how
much pain she's in but I can do the best I can help it
when i was little my mom used to have to take shots so I'd always go into to her room when my dad was giving them
to her I would go into her room and tell her jokes so she wouldn't feel the pain I just laugh so she would laugh what we've learned most from Elysa is
that she's always focused on what I can do as opposed to what I can't you and I think that's that's a great lesson
for all of us to learn finding a doctor is incredibly important
you need to feel comfortable with the doctor you
want to find a doctor that you trust that you feel is technically
proficient but you also want somebody you can talk
to somebody you can relate with finding a good general practitioner or internist somebody that will listen to
you somebody that will not try to do everything themselves but
say okay I'm referring you to massage I'm
referring you to physical therapy no this is this is outta my league see
a neurologist about this one there are a variety of ways to assess
patients who present with chronic pain or acute pain we can
ask them so are you having a lot of pain and and that'll tell us something we can
say to them on a scale from 0 to 10 where 0 is no
pain at all 10 is the worst pain you could ever
imagine what would you say the average pain is that you have for the last week and that
is another quality dimension to our
assessment we could add what's the worst pain you've had for the last week and what's the least pain you've had for the
last week and that adds other dimensions and gives us more ability to understand
our pain at our center we employ a number of
tools that really take that even to the next
level patients will fill out forms or complete surveys electronically that ask
a variety of these types of questions we use an instrument for example called
a brief pain inventory so every patient that comes into our
clinic will complete this survey and it gives us a couple important tools
that we can use in trying to assess our patients it tells us what their pain severity
score is the worst pain, the least pain, the average pain your pain now it does an averaging of all
those numbers and gives us a pain severity score it
tells us a pain interference core and what that means is how much does
your pain interfere with your ability to get dressed in the morning to go shopping to go to work to play
sports because people can have severe pain but it might not interfere very much with their lives or people may
not have very severe pain but it might interfere tremendously with their lives and obviously it helps their providers
to understand them better to have that type of knowledge
everybody's different in and you're gonna have a pain tolerance level along your line and each person's
different but know your own don't over
exaggerate but don't diminish really communicate when you're in your
doctor's office you need to talk about it I have a baseline like on my very best
day at the very best hour of the day my baseline pain for my feet say is a 4 but it can get up
to an eight or nine and I know that scale but I know that my baseline its always
there that's what's important is to know and
to give your doctor that baseline but to say okay its way ramped
up that's the way I look at it. my pains ramped
up I can't control it no matter what I do so then she then says
oh okay I know this is something we need to
pay attention to start with a nurse start discussing some
things with her she can help you frame in a succinct way what you're going to tell the
neurologist when you're there for the 15 minutes that you're there part of that time is an exam never stop
talking even when he's examining you never stop
talking he or she is hearing you making a list
is very important creating a diary is important talking
about the on set when does the pain start does it
start is it associated with a nighttime sleep is associated with
your spasms when you lie down at night do you have more spasm, more pain, you can't fall asleep so the onset the
duration how long does your pain last what do you do to manage that pain how do you relieve it are the things you do you pace do you
meditate do you take medicine what is your secret
you need to share that with your provider it's a team approach and then what alternative
medicines are you taking it's necessary for your provider to know that describing pain is very very helpful to
the provider in understanding were the genesis or
where the pain is coming from not every pain is related to multiple
sclerosis and that should be kept in mind it's essential in taking care of patients with chronic pain and in taking care of patients especially with chronic pain who have multiple sclerosis to have the skills of a
variety of providers available to try to help managed them so an interdisciplinary team is the only way to go each one of us has
our own special skills and so I'm a pain specialist I know the drugs and I
know the procedures that are useful for taking care of somebody who suffers from chronic pain but I'm not a
physical therapist I'm not a neurosurgeon neurologist a
psychologist and I don't want to leave anybody out
because I don't want to hurt anybody's feelings but it's so important to have all of
these skilled providers involved in the care of each patient because each one of them
will make a difference in impacting and improving the quality of life of patients who suffer from chronic pain. pain is managed in a combination of ways definitely
with medications and very definitely with
non-pharmacological means medications that we have at our disposal do work. antiepileptic drugs are often
used antiepileptic drugs are recognized as
drugs that calm down that wild firing in the nerves limit the calcium and sodium excitatory
ions from coming into the cell and that's how they work they're very
effective they can have side effects they can cause drowsiness sleepiness
off-balance ataxia and course you don't want that because
you may already be drowsy sleepy and off-balance but given in low doses and combining a couple of anti-epileptics with
different mechanisms action is better than having the high
dose of one at once. in addition to anti-epileptic anti-depressants are often used to
manage pain not because the provider thinks you're depressed anti-depressants are used because of
the neuro transmitters that they engender pain is an experience that
can be modulated so we sense pain in our brains our
brains turnaround and try to modulate that by
neurotransmitters like serotonin epinephrine, and dopamine. if pain is so severe is so overwhelming and all other medications had failed the next step
would be to go to opiates because people should not suffer pain pain needs to be managed so opiates do have a place but in the literature it appears as
though opiates are not all that effective and in order to be effective they need
to be given at high high doses and the bottom line with opiates in the
clinical trials is they did not increase quality of life
they may have managed the person's pain but they didn't make them more active
help them become more part of life help with the recreation or
the relationships at all. and I might suggest that the side affects of opiates may have been the culprit in keeping people from
enjoying life fully we know that people who feel that they
have strategies for managing pain do better than the people who feel pretty helpless in
the face of their pain and so that's often a goal of treatment as well as what can we do to
help people feel they have a real menu of options I think it can be very
helpful for people to also look at what things are they no longer doing and what can we as health care providers do to help them get back to
doing that so often as part of a rehabilitation plan for pain goals might include getting back to
activities that are enjoyed finding new ways to do activities that
don't require more pain but that help people have a fuller life looking
at learning strategies to decrease pain and to live a more full life so pain relief it
certainly a goal but often times if you pursue
some of those other activities you gain in those areas and pain relief
can be a sight effective of becoming more engaged or connected in your life
things like relaxation training mindfulness meditation exercise staying active in social activities valued activities also some people will
deliberately try to distract himself I had one person who loved to watch funny
movies when he was having a pain flare up because that really helped him acupuncture has been studied and has had
an effect on pain biofeedback has been studied massage has
been studied all these things have an effect on pain
certainly people need to talk with their providers about what makes sense for
them but we know that people who exercise and
stay active tend to have less pain and their pain
tends to be less disruptive in their lives and so a big
part of pain management is having a plan for either staying active or if you're not
active getting active we know that stress makes pain worse you
know actively looking at what's causing stress for a person and finding
ways to manage that stress can also often result in
better pain management and another thing that people find helpful is really looking at their self talk we all have these internal dialogues
in our head of us talking to ourselves and for people with pain if those thoughts are
negative or unhelpful people tend to do worse and
we know that people who kind of deliberately try to uh nurture more helpful thoughts thoughts
like I've been through this before I have a plan to manage it um they tend
to do better you soon as you start feeling oh my feet are hurting I feel worse today am I gonna have
another attack you just go down this negative spiral but if you stop and I'm literally like on my walk my feet are hurting and I'll just say oh stop look for something beautiful take deep breath and then I get out of that
mode I stop thinking about why I'm hurting you know I get away from
that pain thought spiral there have been clinical trials
to look at pain management and MS one that was done in England with six hundred folks and
they've did find that there was some efficacy with treating pain with cannabis the kind of cannabis was not
smoked but it was Sativex which was a
bucal oral spray sprayed into the mouth a certain
amount of sprays per day that was the dose and that was efficacious in managing
pain what happened with that management pain
was that folks didn't get psychotropic effects from that delivery cannabis so cannabis in the way that is used in
the United States is smoked there are 16 states and the District of
Columbia that is now have been medical marijuana
laws on the books there's four times more tar in a
marijuana cigarette in there is in the nicotine cigarette you
don't hear much about lung cancer but it's definitely a threat a wonderful article came out in the neurology
journal about a year ago that looked at cognitive function they
found that folks who were habitual smokers of marijuana had far
less ability to think properly poor memory we
don't know enough about the effects of marijuana we are
studying that there are many trials right now that are
looking at cannabinoid receptors in the brain but I would caution people not to smoke marijuana when it has such an
impact on cognitive function I think that the important principle is that managing pain is often not a one
solution task it often involves really
calling upon a number of different strategies and in applying those
depending on how your day is going as a person with MS and pain you are in charge of managing it you might
see a health care provider a few times a year or even a few times a month but on the day to day stuff you're the
one managing it and so that's why it's important to really be the center of the
team who's managing their pain and then also
I think implies a very proactive approach people who manage pain any and who are
best able to to either decrease it or not let it get in their way tend to be people who are very proactive
about their pain. treating pain tends to be a very labor-intensive process it's not something that you can walk
into the doctor's offices and say I have a sore throat and the doctor makes
a quick determination that you have strep throat and here she gives you penicillin and you
get all better and that's the end of it it's something that involves a process involves a lot of time up front involves treatment with a lot of different
interventions and there can be side effects and barriers to the implementation of those
interventions what are some other barriers some of those barriers might be you the patient you may not want to feel like like your
pain is very important other things may be
more important when you have that fifteen-minute talk with your
provider it may be that you want know more about walking or bladder
control patients also feel that they don't want to be on medicines for pain
they may not want to take the medicine they may not want to have the side
effects less is better and and people get that
message but that doesn't always help manage pain
I think we often approach it as providers from a medical perspective
we're trying to treat it with medications and there's really a host of other
things that can be beneficial to people's pain but but often if the medications fail people
think well there's nothing more I can do about
it I just have to tolerate it right now there is no way us to measure somebody's pain so patients can
come in and their pain may be a manifestation of depression or their pain may be a manifestation of
a kidney stone or their pain might be a manifestation
of a lesion in their brain or their spinal cord but there's no way for us to distinguish
where that pain is really coming from and exactly what the patient experiences
with that pain functional MRI is a non-invasive
magnetic resonance imaging for looking at brain activity and the
way we measure or infer which areas of the brain are active is based on blood flow and oxygen levels that we see in different areas of the brain so it's just like any regular MRI that patients have except we have them doing a task and
instead of looking at the difference between same gray and white bring tissue
or region verses non-region tissue in our
case we're using it look at what areas of the brain areactive
during pain processing. the way we're using functional MRI to measure pain
is before we ever get down to the scanner up here in the office determine
persons mild pain threshold and we're using pressure stimulation were put pressure on the
thumb using graded standardized procedure to identify when that amount of pressure
just tipped over into a painful sensation. so that's their mild pain threshold then take the same equipment
go down to the scanner and use that level stimulation that
amount of pressure interspersed with periods rest where
there's no pressure in functional MRI boys need a contrast
we're always looking for what areas are active during a certain
condition versus some other conditions on ours it's during their mild pain sensation verses rest and then what we're able to look at
is the change in the blood flow and the
oxygenation level using this type of imaging to see what areas and the hypothesis with this is that patients will have something called augmented central
pain processing and this is something that's been shown in other disorders
like low back pain migraine or other types of disorders where
there's pain is that the pain in regions of the brain are
more active in people who have pain. so that's what you're looking for to see if that occurs in MS. one possibility if this initial study works is that we would be able to bring people in try what we think might be the best
medication see if it quiets down this augmented central pain processing on the FMRI. if it doesn't try another try another one but maybe shorten that
window of time from months where we're having to see does
this work for the person no try another one in for another few
months no try another one shorten it down to hopefully a very
short time we don't know if that's going to be
the case at all we really don't know there's tremendous
progress so just in time that I've been working on
MS we've seen MRI coming to be part of the diagnostic
criteria for the disease that greatly reduced the window between
symptom onset and diagnosis which is very important to
be able to do earlier diagnosis and potentially
earlier treatment MRI has also been used to really expand
our understanding the disease that it's not just about the white matter lesions that there's other changes and I think
that's really helping direct our efforts at treatment to not just
be lesion centric but also to to understand
that there's other changes that could be targets for therapy and I think we're just beginning the
pain imaging research but my hope is that
that it has the same promise, that we'll also learn a lot about the
disease and about what engine can tell us and
about the basis of pain how to detected it earlier and treat earlier now in terms of studying pain in MS pain in MS may have several types of
origins and as a community we need to understand it that much better
we know that the myelinated axons become hyper
excitable thats history and that easy why they become
hyper excitable we know partly that has to do with a
concept called impedance mismatch where different parts
of the fiber lose different amounts above myelin
insulation and we know from electrical engineering
types of experiments that that will sometimes cause echoing
or repetitive firing but that doesn't get us to new
medications for new medications we need target molecules that we can target with drugs we don't yet understand the
molecular drivers of pain in MS pain research is in the
midst ever a renaissance it's incredibly exciting
time in terms of pain due to injury to peripheral nerves one form of neuropathic pain we are able to identify single genes one gene out of 30,000 that is causative so we have gene, we know the molecule
produced by that gene and we have humans with intractable pain that makes a wonderfully linear story
and it gives us a very very well-defined set molecules
to try and target and working with the pharmaceutical and
biotech companies drugs are being developed to target
the causative molecule so it's one of those stories that
uh goes start to finish in a really really exciting way a next
step in terms of MS is to find a similar molecules that
drive pain in MS we're not yet at the exciting time of that story the renaissance is still in
front of us but we're working to get there in terms of future research
I really think that a lot of these things are so
connected and by that I mean pain depression sleep problems fatigue cognitive issues that I think we really
need to start looking at research that is really trying to address all of those cause none of those
happen in isolation they're really connected um and some of our thoughts
are how can we develop some treatments that target multiple symptoms there's other things like sleep that
really get in people's way really reduce the quality of life so I think in the future we need to be
looking more not at these things in isolation that more what can we do about them and and a lot
of the techniques we use can actually be used to to help multiple things.
