Pain in My MS: Hurdles, Help, and Hacks (Episode 2)

Dr. Avila: Thank you, Susan. I’m Maria Avila, I’m an MS specialist and I’m so excited to be here again in our second episode. And today we’re going to be talking about pain and MS, which is a big factor and it can interfere with the quality of life of MS patients.

Dr. Payrovi: So be sure to watch the entire episode because we have life hacks from several people in the MS community. But first, a speed round of myth versus fact.

Dr. Avila: So let’s start with the first myth. All pain in MS is directly caused by the lesion in the brain and spinal cord. What do you think, Susan?

Dr. Payrovi: I’m going to go with myth on that one.

Dr. Avila: Yeah, you were right. And I would say that as a neurologist, we study part of pain, and we know that the central nervous system, which is the brain and spinal cord, it’s basically what is triggered with MS. But the pain may also be a reflex of the peripheral nervous system and other parts of our body that are suffering, either because maybe overcompensating, because you have muscle weakness on one side or the other.

So I agree with this being a myth. It’s not always because of the brain and spinal cord, but brain and spinal cord obviously have a very important role. And we’re going to talk a little bit more about this later in this episode.

Dr. Payrovi: All right. Next one. If you have MS, you will inevitably experience severe chronic pain. What do you think, Dr. Mirla?

Dr. Avila: I’m going to say it’s a myth. Many people have pain. Not everybody.

Dr. Payrovi: Yeah, absolutely. That’s a myth. While some people will experience severe chronic pain, that is not all people. And as we all know, MS is such a unique disease for each person.

Dr. Avila: So the next one, pain medication is the only way to treat MS-related pain. Dr. Payrovi: OK, I know the answer to this. It’s a myth.

Dr. Avila: It is a myth. So there are many ways that we can treat with medication. But as we’re going to see in today’s episode, there are other options that we can do. So I don’t want anybody to feel that you can’t be under control on this because there are a lot of things that, as a patient, you can also do to help your pain.

Dr. Payrovi: Absolutely. All right. Next one. Pain in MS is purely psychological. What do you think, Dr. Mirla?

Dr. Avila: That’s definitely a myth. And unfortunately, it’s something that many of my patients, um, are concerned about because they feel that, oh, you’re making it up. So as a patient, it’s something that I try to emphasize with my patients is that not everybody may understand what is going on under the surface.

And pain can be one of those silent symptoms from MS, because nobody really knows how much you’re suffering with that pain. But it’s definitely not something psychological. There are really good organic causes of this pain and we’re going to be talking about them today.

Dr. Payrovi: All right. So Dr. Avila, you know people with MS, myself as a patient, have lots of concerns around pain. How common is pain in the MS community? People who experience MS symptoms?

Dr. Avila: Unfortunately, it’s more common than we wish it would be. Close to 80% of patients have moderate to severe pain. There have been many studies regarding this.

A study in which I personally did some years ago when I was a resident — so a few years ago — and we were trying to localize the pain, and we found that patients that had lesions in the spinal cord and in a place of the brain called the thalamus, which is in the center of our brain, were more susceptible to have chronic types of pain and very severe pain.

But in general, we say that about 80% of patients can have one type of pain with MS.

Dr. Payrovi: So what are — let’s talk about some causes of pain. So, for example, like, how would you explain why there is pain in MS?

Dr. Avila: So let’s think about what MS is and what part of our body MS affects. So we know that it will affect our brain and spinal cord. And if we think about it, our brain and spinal cord are — it’s everything that comes from sensory, that comes from your body, your skin, your muscles has to go through your spinal cord into the brain, and vice versa.

Everything that we move has to come from our brain, spinal cord, and eventually go to the muscle. So if we think about that, the brain and the spinal cord are like this very important, um, let’s say bridge, in which if there’s an interruption — it’s like if you have, let’s say, an interruption in a highway.
Let’s think about this pain being transmitted from our skin has to go through the spinal cord. So if there is an interruption there because of a spinal cord lesion, then your nervous system is interpreting that like, oh, there’s something really wrong going on there. It’ll give you some signal like burning pain.

So as a patient you may experience this numbing but painful like electric shock. We call that neuropathic pain. What that means is that it is pain, but that is triggered by the nervous system. That may be a lesion in the spinal cord or a lesion in the brain. So basically it can be any part of the body. And the type of pain that a patient may have can also be like a burning, electric, a numbing type of pain, a dull type of pain. So it may be very variable.

Dr. Payrovi: Yeah. And something I’d like to add, just from a functional medicine perspective, when we kind of really get down into the cell and the biochemistry, is that pain might even be explained by, um, changes like in the mitochondria of the cells. You know, cells that are damaged because of damage to the spinal cord or the brain due to lesions. Um, these, uh, cells might have lower amounts of mitochondria or dysfunctional mitochondria.

And because of the energetics of the cell, um, the signals that are sent might be perceived as pain by somebody. And of course, inflammation is another, um, explanation for pain, right? Uh, with autoimmune diseases, certainly there could be inflammation or neuroinflammation. And, um, that is also something that can manifest as pain. And this is where, you know, anti-inflammatory strategies can be helpful.

Dr. Avila: One type of pain that is very characteristic that sometimes patients can have is Lhermitte’s sign. So Lhermitte’s sign is the name that we give to a pain that if you bend your neck like this, you feel like an electric shock sensation through your spine. And that happens when you have a high cervical cord lesion. And another typical will be something like trigeminal neuralgia, which is a type of facial pain.

If you think about the facial nerve, it is very sensitive. The way that we feel our face is very different than what we feel, let’s say, on the back of our neck or in our shoulders. And that’s just because of how we are innervated. So that’s why trigeminal neuralgia can be very bothersome. And it can also be related to an MS lesion in the nucleus of the trigeminal nerve.

Dr. Payrovi: Right. And also, when talking about pain, it just kind of makes sense to kind of talk about spasticity, which is no doubt a troubling sign of MS. And something that, you know, we can treat, but it can continue to be something that’s really, um, bothersome or problematic for people. Can you speak a little bit to that?

Dr. Avila: Sure. If we think about what spasticity is, our muscles are connected to our nervous system. There is something hijacking that connection. It’s sending to the muscle — basically, it’s telling to the muscle that there is lack of that innervation. So that translates into the muscle taking ownership and getting tight.

And we know that when you’re a neurology resident, part of what you learn is that we have central nervous system and the peripheral nervous system. And when we have spasticity — or tightness in that muscle — is when we are having that innervation from the brain or spinal cord. And basically it’s because of that lack of communication between the nerve ending and the nerve that is coming outside from the spinal cord.

Dr. Payrovi: Right. And, you know, since everything is kind of wrapped up together, maybe we should also address musculoskeletal pain. You alluded to this earlier when we were talking about myth versus fact. What could cause some of that musculoskeletal discomfort?

Dr. Avila: So if we think about a patient that may have some difficulty — let’s say your right leg is weak — you’re going to need to overcompensate with your left leg. And what happens over time is that your gait gets shifted. You’re not walking like you should. You start having some bone wasting. You start having some overcompensation of that good leg, and then you’re using less of the other one.

So over time it becomes like a vicious cycle. And now you’re going to have musculoskeletal pain. And this is also because of the MS — or we can say indirectly because of the MS. And ways that we can treat that is identifying that as soon as possible, doing some changes, corrections in posture, physical therapies.

And I don’t want to dive into detail now because I know that we’re going to talk about different options, how to treat pain. But that is a different type of pain other than the neuropathic that we were discussing before.

Dr. Payrovi: And another type of pain that’s so underrecognized is that which comes from psychosocial factors. Like, no doubt MS has a huge impact on someone’s relationships, their ability to work, their ability to maintain their independence. So, um, clearly, there’s a connection between being more stressed and experiencing more pain.

There’s also something called spiritual pain where people maybe have lost connection with, um, you know, their goals and values and their sense of self. They’ve lost purpose, maybe because they can no longer continue doing the work that they used to do. And so that can actually feed into physical pain as well. And so can emotional pain.

Perhaps there are some relationships that are really strained, um, and other factors that are really stressful. So if we’re really trying to be comprehensive, I think it’s important to include these as well, because they can certainly aggravate pain in anyone who has a baseline of pain.

Dr. Mirla: And that’s a great point. That’s why we have to treat pain multidisciplinary. It’s not only one pill that you give, and everything is fixed. We have to see all these different aspects when we treat pain.

Dr. Payrovi: I totally agree with that. Pain management is complex, and it’s rare that a person with just one modality — one medication or one supplement or one complementary therapy — is able to get all of it. I mean, if they can, great.

But generally you need a multimodal approach where there’s, you know, physical therapy and maybe even psychological counseling, in addition to what maybe the pain management doctors can do.

Dr. Avila: And the other thing I would like to add is that as a physician, we also look at other things that could be causing pain. Comorbidities — is a patient a diabetic and maybe has diabetic neuropathy? Does the patient have another autoimmune disorder that is triggering pain?

Um, something as simple as — and many of us hear — about other types of pain like fibromatosis, for example. So there are many other comorbidities that a patient may have. So that is why an approach that we give is individualized treatment, and also try to find out which is the root of that pain for us to treat.

Dr. Payrovi: And since we’re talking about medications, do you want to talk about some maybe classes of medications that could be used? Like, how do you think through the problem of treating pain as a neurologist before you send somebody off to pain management?

Dr. Avila: So if we’re thinking about a pain that is caused by a musculoskeletal — usually we’ll use a muscle relaxant. Um, if the muscle relaxant is not working, and we’re in a good dose, we may send that patient to have some injections directly in the muscle to try to loosen that tightness of the muscle.

If it’s a neuropathic pain, we have medications that are geared towards that to diminish that signal — that erroneous signal — that the nerve is sending to the brain and spinal cord. And with this, we have several medications that we use for this type of neuropathic pain. But sometimes when we’re not able to achieve that, we may send somebody to pain management in which they can do a direct blockage to the nerve.

Or if this is a mechanical type of pain, sometimes we have to refer not only to pain management, but maybe for surgery if this was, let’s say, a slipped disc or something causing the pain.

So it would all depend on the type of pain. And also, there are some antidepressants that we use that are good for pain management and can also help if there is some underlying depression, which is not uncommon.

Dr. Payrovi: I think it’s important to just recognize that there are a lot of things overlap. It’s rarely like pain by itself or depression by itself. They kind of feed into each other and just make a bigger, badder symptom.
And, you know, I think it’s also important to include some of the non-pharmaceutical therapies as adjuncts to the medications we might be using. So I find that exercise can be really helpful. Now, if it’s difficult to exercise due to pain, physical therapy can be a really useful tool to figure out how you can exercise. Because when we move our bodies, things tend to soften and we can actually lower some tension in muscles.

Um, sleep can be really helpful. I know that my day is shot if I haven’t had a good night’s sleep. And the opposite is true too — if you get good, restorative sleep, your perception of pain can really change. And it’s really important to actually acknowledge that because we actually have tools that are at our disposal that we can use every day to improve our perception of pain.

Dr. Avila: One therapy that I recommend is, if you can do anything with water therapy — exercise. If you have access to a pool, you can walk in water because that helps to flex the muscles without hurting your joints. That’s always something good. And also meditation and other practices are very helpful too.

Dr. Payrovi: So it can be an anti-inflammatory diet. I mean, just abstaining from processed sugary foods that are just not really serving your health can actually have a big impact. And when we’re trying to layer on a lot of natural therapies — like sometimes just putting on a lot of different things, a little bit of each — can actually go a long way.

So the more we can eat plants that are unprocessed, good sources of protein, avoiding sugar, can be really helpful. And I also want to put in a plug for the gut microbiome. Anytime we can eat the foods that grow the good gut microbiome in the large intestine, lots of things improve because those bugs do a lot of heavy lifting for us.

So, for example, prebiotic foods — which are the good, fibrous foods that these bugs like to eat, like banana and artichoke and, you know, kiwi, garlic, onion — and then fermented foods as probiotic foods. If you can just get a little bit of these in over time, it makes an impact.

Dr. Avila: I like to explain to patients, imagine the way we used to eat before man started putting chemicals in our food, because many of our foods are being engineered for us to just want more of it, and not for the nutritious value.

So thinking about that — going, as you said, with your fruits and vegetables — nurturing your gut biome can go a long way to help with your quality of life, your pain, and also with your MS.

Dr. Payrovi: And a lot of patients will also ask about supplementation with various herbs or vitamins and minerals. And there are a lot of herbs that can be helpful. They have anti-inflammatory activity, like turmeric, whose active ingredient is curcumin — has been really well studied and can help with pain that is due to inflammation.

So another one I think might be omega-3 fat — that can come from your diet of fish and seafood, but also can be taken as fish oil. This can also be very anti-inflammatory and can help with pain. Now, whether or not it’s safe for you to use depends on your unique situation — what are the medications you’re on.

So it would be really important to talk to your healthcare practitioners to make sure that it’s safe for you to use these. Also, I think I’d like to add that I think acupuncture is a highly underutilized tool. I’m just fascinated by how putting needles into these meridians and channels can actually change the flow of energy in the body.

And as a physician, that really didn’t make sense to me until I sort of studied it and practiced a little bit of acupuncture. But acupuncture can be a modality that can reach symptoms that sometimes pharmaceuticals can’t. And I wouldn’t use it instead of medications, but I think it can be a helpful addition to complement whatever you’re already doing.

Acupuncture by itself isn’t going to solve all your problems. It’s going to take multiple treatments over a period of time. So looking into your insurance plan to see if you have coverage, first of all, and then seeking out a practitioner that you trust can be another good strategy.

Dr. Avila: And also, we have to take into account that the medications have side effects, and natural remedies and acupuncture may not have those side effects. So I agree — anything that you can do to try to avoid. But sometimes we need to prescribe medications. But we also have to take into account that they could have side effects and they’re not for everybody.

Dr. Payrovi: Right. So just talking to your health care practitioners about what’s right for you, what makes sense, and just being open to other tools so that you can actually get better pain management. Because if you can, then that usually translates to a better quality of life — more being able to do more of the things that are important to you.

And one other thing that we definitely want to address — also because I did talk about emotional pain, spiritual pain, stress — you know, seeing a pain psychologist can actually be really helpful as well.

So this is something that your primary doctor or neurologist can send in a referral for. And I highly recommend just seeking out these practitioners if you have an interest in learning more about what you can do to help yourself more.

Dr. Mirla: Also, when patients ask me about treatment, I explain that this has to be tailored to them because we can’t say one size fits all. We can’t say everybody starts with this medication and then change to this one, because as we’re discussing, the reasons for the pain may be very different from one patient to the other.

The same way, the approach is going to be very different from one patient to the other. And just to be also clear, most MS pain doesn’t respond to narcotics. Some patients believe that this type of narcotics can be helpful, and most of the time they’re not.

So always talk to your health care professional if you are experiencing pain. Try to explain the way you’re feeling it — where it is, is there any trigger — to try to tailor which is the best treatment option for you.

Dr. Payrovi: So I hope that that was a good comprehensive discussion on how to think about pain and MS, and hopefully it gave you some ideas on what you could reach out and ask about with your doctor and your other health care practitioners. Let’s segue into our life hacks submitted by people from our MS community.

Julie: Hi, Dr. Payrovi. Hi, Dr. Avila. My name is Julie Stamm. I am a mom, an advocate an author, and also have had MS for 18 years. So my hack on dealing with chronic pain and symptoms related to MS — um, my first and one that really has been helpful for me is getting my vitamin B levels checked.

Um, it really helps with the numbness and the tingling, especially at night. So that definitely is always worth checking out. It’s a pretty easy one. And then I do like compression socks and, um, pressure — like rubs, like rubbing against, um, my left leg, which is super, um, sensitive. I also like, um, my husband to put pressure on it, whether it be sitting on it — um, anything to kind of just, uh, help desensitize my leg, uh, from being so spasm-y. And also, um, just the charley horse feeling is not pleasant.

But I have heard someone say that a little bit of pain for a long period of time is a lot harder to live with than a lot of pain for a short period. So for all you chronic pain warriors out there, I see you and I know what you’re going through, and I know how hard it is to, um, hide sometimes and to smile through.

So, uh, keep fighting and I’m here if you need support. We’re going to get through this. So I hope my hacks help. But definitely vitamin B, definitely deep tissue massages and, uh, compression socks. So good luck. And I’m here if you need support. Bye.

Dr. Avila: Well, I want to thank Julie for this. I think this is a really good hack, and she’s bringing a good point in which other things can be interfering and causing pain — like vitamin B deficiency. So this is part of what we check. We check vitamin B, we check vitamin D. So if there’s a deficiency, definitely you need to take vitamin B — as in boy.

But also, sometimes something that helps kind of, uh, trick the pain a little bit or the signal is that the compression that she’s mentioning. Sometimes even, um, capsaicin — which is what chili peppers have — they can sell like a little cream and it feels like it burns a little bit, but it distracts that signal of pain. So sometimes that can be useful.

Dr. Payrovi: That’s a great hack. And I actually definitely just love compression socks. Even without pain, they just make you feel good. They help with energy a little bit because I think you’re just not pooling all that fluid in your legs.

So big, big fan of that. And I loved her, uh, hack of the massage, the deep tissue massage. And just putting in a different sensation, like her husband sitting on her leg, um, was helpful.

And so, um, sometimes I actually have patients use, like, a weighted blanket or a weighted pillow just to kind of give them a different sensory experience to kind of confuse the spinal cord and maybe interrupt some of the pain signals going up to the brain.

Dr. Avila: So let’s listen to our next one from KT.

KT: Hello, Dr. Payrovi and Dr. Avila. My name is KT Sloan. I experience many of the ten different types of pain, but my main type of pain is muscle spasticity. I carry a lot of stress as tension in my body, and I’ve partially or fully torn pretty much every major and many minor muscle and tendon in my body.

I tried a lot of different pain relief strategies over the years — acupuncture, physical therapy, craniosacral therapy, pharmaceuticals — and lots have helped. But surprisingly to me, the most effective has been pain psychology strategies. And for anyone curious, you can get a referral to pain psychology. They’re a part of the pain management clinic from your neurologist.

Uh, real quick — a little about thought hygiene. It’s wild to me how our thoughts can either magnify or reduce our physical pain. And while we can’t often control what happens in life, what we can control is how we react and the subsequent actions we take. And how we react starts with what we think.

Um, so I use a mental fitness app–based program to help keep me focused on my locus of control. It has taught me to better understand my own thought patterns, and also to be able to easily assess and quantify my ratio of positive to negative thoughts and see how that number impacts my pain in real time. And that’s been really insightful and opened the door to significant physical pain relief.

Dr. Payrovi: I love everything she shared, because thought hygiene has a lot to do with how we experience our day. And being intentional about what you allow into your thought space and what you keep out can be really helpful.
Like, the power of the mind is, um, a really important tool in helping better manage pain. And I think it’s hard to do this on your own. There are a lot of programs out there that can have — you know — give you the framework and support to start building these skills so that you can just get there faster.

Dr. Avila: Yeah, I agree. And this brings that very important psychological part, in which it doesn’t mean that it’s all that you’re inventing it. What we mean by that is that there are some things that you can do emotionally to help with your pain and to have more control. This is my favorite part — when our community gives us some of their advice. And I appreciate that.

Dr. Payrovi: And speaking of our community giving advice, we’d love to hear from you so that we can tailor these topics and these shows to topics that you really want to hear about. So be sure to comment on the videos, send us a message about what you’d like to hear about, and we’d be looking forward to connecting with you all.

Dr. Avila: Yes. Thank you so much for watching.