Managing MS
In addition to disease-modifying treatments for MS (See MS Modifying Treatments), people manage their MS in many ways, including taking medications to reduce symptoms and using non-medication strategies such as dietary changes, exercise, and physical therapy. People also described managing acute MS crises, including hospitalization. Some people talked about challenges they had accessing certain medications for their symptoms including problems with insurance coverage.
Medications and supplements
Many people we interviewed described taking medications to improve walking, to help with fatigue, to improve energy and sleep, to lessen nerve pain and muscle spasms, to increase muscle strength, to control urinary incontinence, or to manage anxiety and depression. As Mia explained, some of the medication she takes is, “not meant to be a disease-modifying therapy . . . it's all about the quality-of-life factor.”
Rhonda takes numerous medications and supplements.
Rhonda takes numerous medications and supplements.
Baclofen©, Neurontin, LDN. There's a lot. Prozac©. Linzess©, I have IBS. Methotrexate, Folate, three inhalers for asthma. Turmeric, alpha lipoic acid. Fish oil--no, flaxseed oil. Cranberry, D Mannose, a probiotic, because I'm managing neurogenic bladder. There's all these little things that MS causes. MS causes the spasms. MS causes the neurogenic bladder. When you have neurogenic bladder, what do you get? You get chronic UTIs.
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So, it's always, you need something to treat this, then you need something to treat this, then you need something to treat this so it doesn't cause this. So, it feels like it's a never ending-- I think I take 26 medications and supplements in all, and protein powders because I can't swallow very well, so I'm not getting enough protein, so I had a dietician prescribe that.
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I've always taken a lot of supplements. Over the years they've changed because I felt like some didn't help and some did. Or sometimes I couldn't afford. I had to pick and choose what helped, what I couldn't live without. So, it’s constantly changing. My current-- or I guess he's not current anymore-- he says, “you take too many supplements”. But each one helps something. So, if it helps and it doesn't interfere-- and if there aren't any drug interactions, the only thing that's hurting is my pocketbook, and I'm OK with that. Every one serves a purpose. Like the turmeric helps with pain. Alpha lipoic acid helps with neuropathy. LDN is supposed to help with sleep. I mean, it's supposed to help the pain, but it helps me get quality sleep. Oh, I take melatonin because if you don't get quality sleep, you feel like crap.
Dulce tries to manage her pain with medications.
Dulce tries to manage her pain with medications.
So I'll take baclofen. I'll take it more often than at night begrudgingly because all I can think is, this is the rest of my life. This is forever. So I don't want to overuse medications. I want them to be effective when I take them. I've tried nortriptyline only for a few days once for nerve pain. And, again, that's a slippery slope with some of the medications because this is forever. And then I started reading more about the dosage. I'm like, well, when does the dosage stop? It just seems to pile on and on and on. I'm like, you could never get off it. And so that overwhelmed me.
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I have Klonopin© instead of baclofen when I feel the spasms are really bad-- doesn't help the nerve pain at all, does nothing. But when I just feel super stiff and like rigor mortis, the Klonopin© does kind of do a reset.
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It helps nerve pain, and recently with this relapse, gabapentin. But, again, slippery slope, high doses. Once you start, it’s hard to stop. And my neurologist knowing my feelings about that-- she goes, well, you're not going to get as much of a benefit of it if you use it in the short term, but-- because she listens, you know-- but here's what you can do for kind of a short course. I'm like, OK. You know, again, you're not going to get as much relief, but you could get some. And if you have severe nerve pain, you could take one as a rescue. Again, don't expect total relief, but you might have some.
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And so now, I'm at a point where when my doctor comes back, like Dr. [NAME], "What do you think about giving me as a rescue med some oxycodone?" Because that's the only thing. And then at least I have a demonstrated history of-- I'm not a drug user. I don't want to be. But I also-- narcotics have a purpose, right? And this is the time that I need to ask. Because boy, that is-- it's saved me. I mean, I'm-- I was desperate. It was so awful. It was a 10 out of 10. It was so bad. It was horrible. So anyway, yeah, so those are the things I've tried, not a lot of success.
Makenzie uses medical marijuana to alleviate her symptoms.
Makenzie uses medical marijuana to alleviate her symptoms.
Yeah, it changed my life, honestly. I will recommend it to everybody. I do use it daily because of the pain I experience daily and my fatigue. I keep saying like it makes me feel like a normal person when I'm on it. I don't have that pain. I don't have the brain fog. Like I can actually get up and clean without getting like super tired. I can exercise. You know, it's just been, and my mental health has gotten better because of it. So, I'm just, yeah, I'm really thankful that I have it. I should have gotten on it sooner. But, yeah, I've been on it about a year now taking it, so it's been really helpful.
People described side effects they experienced from medications used to manage symptoms. Dani said, she is “all for medicine. I love it. Give me, give me, give me if it's going to help,” but feels there is a point where more medication is just adding more side effects. Karen doesn’t like the way her heart races when she takes medications for fatigue, and Dina felt that taking medication to help her sleep was only a short-term solution that left her feeling groggy.
Bianca had side effects while taking a muscle relaxer.
Bianca had side effects while taking a muscle relaxer.
For symptoms, there was only one medication I tried. It was a muscle relaxer. I'm blanking on the name. It was a pill that I took. Some people have a patch that they can have the drug delivered by. I really can't remember the name of this. It was a muscle relaxer.
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I was never able to get to an amount that would help my arm. And it would just make me really sleepy. At 10:00 in the morning, I'd be almost asleep again. And I am a really early riser and I love my mornings, but it was just not worth it. I don't know how much it would have taken to do anything with my arm. But it didn't do the trick. So that was the only other medication I've taken.
Nora decided not to take medication for her bladder
Nora decided not to take medication for her bladder
So, my thinking is, yes, it will help me in not having the frequency of going to the bathroom, but then with a dry mouth, I’m going to have bad breath. And then constipation, I am going to have to do something for the constipation. So, the way I looked at it, is if I want a medicine that will help me with my symptoms, but not cause other side effects that I need to be taking other medicines. So that's, kind of, why I stayed away from the bladder.
Some people felt certain medications reduced their symptoms while others did not notice any changes. Susan takes medication for fatigue only once a day and tries to take the lowest possible dose. Kara only takes her medication for fatigue on days she is working. Kelsey stopped taking a medication when she felt she could manage without it. Jason remembered times he was “probably taking 45 pills a day” but stopped taking all symptom-related medications after being hospitalized for a medication interaction. Several people also took vitamins and supplements including Vitamin D, C, and B.
Dietary changes
Several people made changes in their diets after they were diagnosed. Jim followed an elimination diet and Rhonda a paleo diet. Davis S. tried an autoimmune protocol and changed his diet along with all of his detergents, soaps, and lotions. Maureen followed an MS recovery diet in which she avoided gluten and red meat. Amy started paying more attention to what she was eating, having bone broth, and avoiding certain foods.
Amy talks about changing her diet to live a long, healthy life.
Amy talks about changing her diet to live a long, healthy life.
And so, I think the best part of it is that I know what my little subtleties are and that they remind me to behave. Really, really do. And right now, after this whole weekend with my daughter going to college, I'm like, I can't think. I feel like I can't think. And I know it's food. That's why I'm doing juice today and not over-caffeinating. Over-caffeinating, very bad. Love coffee. And so that's a rough one. And yet people ask me how I can eat like this. And I'm like, what are you talking about? You know, it's like, oh, how can you eat healthy foods? Isn't that kind of a funny statement? I mean, how can you eat healthy foods? I mean, when people say how can you eat like that, it's like I can't afford not to. If I want to live a long life and be with my family and maybe run with my daughter and do the things that I wanted to do-- because she was young when I was diagnosed.
Kelsey stopped trying to change her diet when she saw that it made no difference.
Kelsey stopped trying to change her diet when she saw that it made no difference.
Other aspects of getting diagnosed, there is some evidence that diet is linked to MS disease progression. So, at the time, my doctor was like, "You might want to consider trying this diet. There is some evidence it could help." So, I tried to do that. It was a pain in the butt. I didn't really enjoy it. It was basically trying to remove as much saturated fat as possible, so everything good. And as, you know, a 21-year-old whose friends are all just like, I don't know, French fries and beer, that was a shift. Yeah, so I sort of did that. And I tried to stick to it. But it was just really annoying. It felt like a lot of work. It felt like there wasn't really strong enough evidence to do it. I didn't see a strong impact on my weight or feeling healthy. So, I think after six months, I was like, I'm going to give myself a pass on the diet stuff and just try to live a normal life.
Movement and physical therapy
Several people talked about changing their activity level and adding more movement into their days. Experiences were varied in nature and intensity. Nora walked with her dad and did yoga and Tai Chi at an MS retreat. David R found moving in a heated therapy pool to be helpful and felt that repetitive exercises helps to restore neurological capability through electrical stimulation. Susan said that stretching helps, but she still often feels tightness in her muscles.
Jim leads a fitness group for people of all abilities.
Jim leads a fitness group for people of all abilities.
I run a fitness thing every day. I-- I call it the "12 O'clock Shakedown" on Facebook. It's every day of the week, Saturdays and Sundays included, even holidays to a certain extent. I suppose that varies. But I started that during the pandemic when I realized I was really going downhill fast. And I called my neurologist, and she said, “Yeah, that's not uncommon. We're hearing that from a lot of people.” So, I decided, OK, well, I'm going to do something about it. I'm going to make that commitment on Facebook. So really, it was selfish originally. I did it because I figured if I made that commitment, people would hold me to it, and so I'd have to do it. But I have a page for it, and now I have you know, 100 to 150 people that join me every day for the shakedown. And it's just 15 minutes of music and movement for people of all abilities. And I just use shakers, and play popular music, and we just have fun with it, just move around and stuff like that.
Maureen has found doing Pilates to be helpful.
Maureen has found doing Pilates to be helpful.
Lately I’ve taken, I did ask my son-in-law, what do you think I could do to make, let's call it the value of my life better by helping me out doing some of the things? And he did say maybe, well, the first thing I would do is start going to Pilates twice a week. So, I’ve started that. And for the first time in probably two or three years, from sitting on the floor, I can get up without having to push on like another piece of furniture or something that’s like a foot and a half up to press against. I can actually, not pretty, not graceful, but I can actually now get up off the floor just by pushing off the floor. And that was, I’ve been going to Pilates, this Pilates now for like three weeks, twice a week. So, I think, you know, there was something to be said for making that change. And at that point in time, I said, “I don’t know if I can afford it,” and he said, “I don’t know if you can afford not to do it."
Several people also had experiences with physical therapy and rehabilitation. David R described learning about how physical therapy “actually fights the progression of the disease and tries to maintain as long as possible one's capabilities." Julia felt hopeful when she used electrodes to strength her muscles. Debbie found going through a rehabilitation program and routinely doing home exercises helped her move from using a wheelchair to a walker to a cane. Rhonda expressed regret that she didn’t get physical therapy earlier.
Nora shares how physical therapy helped her with bladder control.
Nora shares how physical therapy helped her with bladder control.
So, I went to a physical therapist who specializes in pelvic floor exercises. And she was awesome. She was really good, and she gave me a lot of exercises to do.
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And so now three times during the day, I would set my alarm to do the Kegel exercises. And then I would see her. I think I saw her three times a week. And I think after 12 weeks, I was more in control. Well, at least, let me put it this way. When I had the urgency, she tells me to do the Kegel, and then walk to the bathroom. And it helped. Because I was so scared that I'd have to wear diapers for the rest of my life. So, she told me to do those exercises. And she also told me, “Obviously, watch your intake. If you're doing caffeine, if you're doing fruit juices, certain things will just aggravate your bladder.” And sure enough. So, I still like coffee, so I knew that if I drank coffee, the next half hour to 45 minutes, I need to be close to bathroom. Because the urgency would come, and so that was awesome.
Jason thought physical therapy might be helpful but didn’t make it a priority.
Jason thought physical therapy might be helpful but didn’t make it a priority.
I think part of the reason that it wasn't-- it didn't really resonate with me is because I went in there without goals. I thought it would be like a magic bullet. Like, if I do this thing, I'll be able to walk fine. And that didn't happen. And it's probably more on me than on them of doing it without a goal in mind or doing it without a reasonable goal in mind. But I just kind of did it. I don't know if it was something to do. I don't really remember. It was-- I'm not going to call it a mistake, because I did learn the exercises that I should be doing. And every once in a while, I will-- I still do stretch quite a bit. And I learned those stretches in physical therapy. So definitely not a complete waste. But I think if I were to redo it-- well, I wouldn't redo it right now. I just-- I don't have time. I wouldn't make it a priority. And that is a problem. But if I were to redo it and make it a priority, I think I would have a much different focus. And I would set more realistic goals. And I would communicate those upfront, of, during this six-week program or eight-week program, this is what I want to see. Here's my baselines. This is where I want to improve. And this is where I want to get to by the end of this.
Other things that helped
There are a wide variety of non-medication approaches that people used to help manage their experience of MS. People described trying to get more sleep or taking naps to manage fatigue. Kim said he puts himself in social situations that give him more energy. Nora talked about doing cognitive exercises such as brain puzzles. Amy said she tries to reduce her stress by watching how much news she consumes. Nora talked about volunteering and making connections with other people to keep her mind busy. Some people meditated. Maureen described wearing a cooling vest while biking. Raven looked for alternative treatments. Li tried Chinese medicine. Though the protocol she received did not work for her, she said it might be effective for someone else. Kelsey learned about strategies such as timing bathroom breaks. Others with urinary symptoms described using catheters or getting Botox® injections in the bladder to help with bladder control.
Managing MS emergencies
Flares of MS may require emergency treatment. Some people got emergency room care for relapses or for specific complications, such as sudden loss of vision (optic neuritis). A few people also got emergency care for other issues such as retaining urine or broken bones after falling. Others reported experiences of being treated with high-dose steroids for neurological emergencies in the hospital or at home.
Kim explains why he needed steroids when he was first diagnosed.
Kim explains why he needed steroids when he was first diagnosed.
So, the attending neurologist seemed pretty confident that this was the diagnosis for me, that that was what was going on. And because there was evidence of an active flare, which means there's active inflammation in my brain and spinal cord which was directly causing my loss of temperature and pain, she suggested we do a five-day course of very high dose IV steroids, which is the recommended treatment for an active flare. And she described to me that the IV steroids are effective at kind of shutting off the active inflammation but not necessarily repairing what damage was already done. So, they're good at kind of preventing things from progressing, but they aren't going to immediately take away what damage there already was, and my body might repair that, and it might not, and that's kind of a thing that we just need to wait and see, which, at the time, I felt like that's not exactly what I want to hear, but OK. And then she suggested that I stay in the hospital for the five-days to get the doses of IV steroids, and I felt pretty strongly that if I could do this from home and then go into the hospital for the steroids and then go home again, I'd much prefer that. So that's what we reached a compromise, and I stayed in the hospital for one more night and got the first dose, and then I went back and forth for the next four days.
Elaine sees benefits in steroids despite the inconveniences.
Elaine sees benefits in steroids despite the inconveniences.
Well, that wasn't my favorite thing to do, but I was happy there was something to do. It's something to, that worked on me. You know, because if it, they just keep on trying to figure stuff out and nothing was working, that would not make me happy. It, so that's why I was grateful. Like I said, hey, if this is what it takes to get an IV, be, you know, a little disruptive for a couple days, bring it on. I'm fine.