Strange MS Symptoms

 Here are some discussions of strange and unique MS symptoms:

https://multiplesclerosis.net/living-with-ms/strange-symptoms-experience

https://msfocus.org/Magazine/Magazine-Items/Posted/Understanding-the-Rarer-Symptoms-of-Multiple-Scler

https://www.mymsteam.com/resources/unusual-sensations-and-ms-causes-and-when-to-worry

https://legacyneuro.com/toothache-trigeminal-neuralgia/

https://www.upstate.edu/whatsup/2013/0625-that-painful-toothache-may-be-trigeminal-neuralgia-heres-how-to-treat-it.php

https://www.webmd.com/multiple-sclerosis/ss/slideshow-unusual-symptoms-ms

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9313873/

https://mail.google.com/mail/u/0/#inbox/FMfcgzGxSlMCkJgTGZtBswnjjpDDZcQb

What Is the MS Hug?

Written by Tracy Brown

Medically Reviewed by Christopher Melinosky, MD on April 14, 2022

If you have multiple sclerosis, an autoimmune disease that affects the brain and spinal cord, you might have felt a band of pain around your torso. It’s often called the “MS hug.”

What It Feels Like

Like most MS symptoms, it’s different for each person. You might feel it right under your rib cage, in your chest, or anywhere between your neck and waistline. It can be:

Burning

Dull and achy pain

Hard to breathe

Pain on one side of your body

Pressure

Sharp pain

Tickling

Tightness

Tingling or pins and needles

Vibration

It can last a few seconds to a few hours, and in rare cases, a few days. People often say it’s like wearing a girdle around the middle of your body. For that reason, you may also hear it called by a number of names, like:

Banding

Girdle-band

Girdling

MS girdle

You might feel it in your head, hands, or feet instead. People with this type of sensation feel like they’re wearing tight gloves or boots. Read more about muscle spasms and tightness with MS.

What Causes It?

MS affects the way nerves send messages. The tightness, pain, or whatever you’re feeling results from spasms in small muscles between your ribs. The doctor will call these intercostal muscles. They hold your rib cage together and help it expand when you move, bend, or breathe. If these muscles have spasms, you feel painful, tightening pressure.

The hug is a type of nerve pain. You might hear a doctor call it dysesthesia, which means a sensation that isn't normal.

If other symptoms come on quickly at the same time, the hug can also be a sign that your MS is relapsing. Call your doctor if this happens. Get more information on what dyesthesia pain feels like with MS.

What Should You Do?

If you think you’re having an MS hug, talk to your neurologist or main doctor right away. The symptoms can seem like those of a heart attack, so it’s important to make sure that’s not the case and to rule out any other causes of the pressure.

Your doctor will most likely give you an MRI to look for other things, like gallbladder problems or lung disease. MS hug can also happen to people with other rib and spinal cord conditions.

Can You Prevent It?

Yes. The hug responds to the same triggers as other MS symptoms. Keep notes and learn what sets yours off. It might show up, or get worse if you’re:

Fighting a cold, flu, or bladder infection

Fatigued

Stressed out

Too hot

Medications for MS Hug

You may not need treatment. But if you do, what your doctor gives you will depend on the cause.

If they think your symptoms signal a relapse, you might get steroids to help prevent it:

Corticotropin (Acthar, HP Acthar)

Methylprednisone

Prednisone

Your doctor may suggest over-the-counter treatments like:

Acetaminophen or ibuprofen

Pain relief cream

Or they could prescribe other medications, including:

Drugs for depression that also fight nerve pain, such as amitriptyline (Elavil) and duloxetine  (Cymbalta)

Drugs that stop convulsions and also halt nerve pain, like gabapentin (Neurontin) and          pregabalin (Lyrica)

Muscle relaxers like baclofen (Lioresal, Gablofen)

Your health care team will work with you to choose the best mix of treatments for you.

How to Manage the MS Hug

You can try these things at home:

Apply a warm compress. (Be careful: Heat might make your pain worse.)

Drink plenty of water.

Eat healthy food.

Get a massage.

Stay rested. Get at least 8 hours of sleep each night.

Use deep breathing techniques, yoga, and meditation.

Some people get relief from wearing tight clothing but may prefer loose clothing.

View a slideshow to learn more about other unusual symptoms of MS.

Top 7 benefits of having pets in our MS life

 

There is more to it than just the snuggles. Having pets in our lives has a wide range of benefits. They help us cope, lift us from feelings of loneliness and depression, and get us outside for a bit of sunshine and exercise.

1. Pets keep us company.

Living with a companion animal can help ease feelings of isolation. Having a buddy by your side can make such a big difference in minimizing the feelings of loneliness. Even if the conversation is only one way…

2. Pets can help us fight depression

Taking care of pets (walking them, grooming them, petting them, playing with them) takes you out of yourself and helps you feel better. Our pets’ love is unconditional so, good day or bad, they have a lot to give us. Well, that is unless your name is Hans who, when he doesn’t get the treats he persistently begs for in the morning, may not be spreading the love quite as far.

3. Pets give us a sense of support and pleasure

Our life with MS should focus more on the good parts, not the un-fun stuff, right? Having pets makes us feel good. They’re cute and they’re sweet and they’re funny and they’re snuggly. All good stuff that makes living with MS a bit more bearable.

4. Pets get us outside when we might not otherwise

When we walk Spot, we sometimes meet others along the way, stopping for conversation, watching dogs do the funny things they do. It’s a great social outlet. Plus, there’s the added benefit of soaking some of that sun vitamin!

5. Pets calm us and relieve our anxiety

This is a big one for me as I am slightly neurotic. Hans is chill so he keeps me chill, not an easy feat. Om.

6. Pets help us minimize stress

This is huge for us, as stress is often the culprit when our symptoms flare up.

7. Pets help us improve our physical fitness

After all, exercise is important for MSers and, taking your dog for short walks or tossing their favorite toy in the backyard, helps keep us moving. This includes basic stretching. I can’t tell you how many times Hans watches us at home, with keen interest and curiosity, as we stretch or do some yoga. Eventually, he gets right on the floor with us to do a bit of stretching himself. Kitty Yoga. Hilarious!

Am I Lazy or Is MS Actually to Blame?

By Matt Allen G · October 15, 2020

 

Most people living with multiple sclerosis have probably experienced the feeling that others think they are lazy. Or maybe they have flat out been accused! At the very least, I’m sure everyone has encountered at least one other person with MS who has shared this experience. It can be painful to feel like you’re being looked at as a human sloth due to your inability to “keep up” because if you have MS, you can’t help it. MS commonly causes people to not be able to do the things they once could. But lately, I’ve been catching myself wondering if I really am lazy.

Are people with MS lazy?

Why do people think we are lazy? Well, in my opinion, this is an easy question to answer. People tend to believe what they see. I think it’s human nature. With that in mind, what do we know about symptoms such as fatigue, spasticity, pain, or vertigo? They’re invisible. You can’t see them, which means the people around you only get to see you “lying around doing nothing.” They see the ‘what’ but not the ‘why.’

Making assumptions based on appearances

Since people usually accept the easiest explanation as the most likely explanation, you can see why they would jump to the conclusion that you’re just being lazy. I find this really frustrating, but I do understand it. I’m sure I’ve made similar assumptions based on appearances even when I know that you can’t judge a book by its cover. That’s just how our brains work. It’s up to us to catch ourselves in moments like this and seek the entire picture before reaching a conclusion.

Explaining that I’m not lazy

This all leads to one of the most challenging and irritating parts of everyday life with MS: trying to explain to people that there is something there, even though they can’t see it. It’s unfortunate, but this is a burden that falls on us – the ones living with this illness. It can be really hard to explain something that we ourselves don’t entirely understand. But I guess it’s just another responsibility that came with MS. Having to teach others around us about a disease we are often still learning about ourselves. Sometimes we succeed, but a lot of the time we don’t. That is one more thing in life with MS that we don’t have much control over.

But what if it’s not MS?

Despite everything I know, and despite the fact that I would tell anyone else saying what I’m about to say that they are wrong, I have caught myself wondering…am I? Am I lazy, or is it really just my MS? The thought comes from a small part of my brain, but it actually raises many questions for me. Questions like, “Why do I feel lazy?” “What am I doing to make myself feel lazy?” and “What can I do to stop feeling this guilt?”

Why couldn’t I get more done?

I’ve literally been having a hard time falling asleep at night because this question has really been weighing on me lately. I lie there thinking about everything I accomplished for the day and wondering why I couldn’t do more. Why I didn’t exercise. Contemplating how I might be able to get more done tomorrow. Listening to my inner-monologue debate, whether it’s a matter of how or if I can achieve more. Because maybe it really is just me? Perhaps I really am just lazy?

What I know and feel don’t always match

This is just one example of how MS can cause conflicting thoughts and emotions. I know I’m not lazy. I hate it when I’m not busy. I hate feeling like I wasted another day. I could never live a life of idle luxury without losing my mind. I know about and have felt the benefits of exercise, especially when I compare it to how I feel when I don’t.

At the same time, I often feel like I can’t keep up with my responsibilities in life. Sometimes I feel like the world is asking way too much of me, sometimes. So, at times I feel like I am lazy and subconsciously using my MS as an excuse. This all leads to the heavy feeling of guilt that’s been keeping me up at night. What I know and what I feel about my MS don’t always match.

Trying to make sense of how I feel

Turning back to my bedtime reflecting on the day and trying to make sense of the mess of thoughts and feelings I’ve been living with, the answer seems obvious. I’m currently not doing as much as I did even just six months ago. I’m not going on my morning walks, I’m not leaving the house to run errands, and I’m not exercising the way I should be. It would be easy to blame this on the pandemic, but that’s an excuse that can quickly be debunked with ease. The only blame I can actually attribute to that excuse is how it “shook up” my routine.

Getting back over the hump

Just because things are different and maybe even a little more complicated doesn’t mean they are impossible. I know I can still do most of those things – I’m specifically referring to exercise – even if they aren’t as easy or comfortable. But because I’m not? I’ve found myself back at the bottom of the hill you have to overcome to feel the positive benefits of exercise. I think if I can get back over that “hump,” I’ll start feeling less lazy and more productive because getting the amount of work and healthcare chores I’ve gotten done lately doesn’t seem to be helping.

Something for people with MS to keep in mind

I could be wrong, but at this point in time, I really feel like the fact that I’ve not been moving as much is the reason I’m wondering if I am actually just lazy. Which I’m not. But I feel like I am. I wonder if this example of conflicting thoughts and emotions is something that others have been dealing with lately? If it is, maybe we have a sort of mental/emotional health issue on our hands in the MS community? Or perhaps this is one of those “no-duh” situations that everyone already knows about, and I’m just barely catching up to this reality.

Multiple Sclerosis and CBD

Multiple Sclerosis (MS) is a disease that impacts the body’s central nervous system (CNS) including the brain, optic nerves, and spinal cord. MS consists of an abnormal response of the body’s immune system. From here, the immune system targets myelin (a substance that surrounds and insulates the body’s nerves), and myelin gets damaged, which then produces scars (sclerosis). These scars are believed to be the cause of the painful symptoms MS patients experience.

Although MS causes various painful symptoms, over 85 percent of MS patients experience spasticity. Fortunately, though, based on the studies have been conducted on cannabis and MS so far, most indicate that cannabinoids are associated with self-reported spasticity improvements. It has also been found that CBD contains anti-spasm properties. Additionally, the American Academy of Neurology has expressed that cannabis is effective for the treatment of pain and spasticity. Then, one Israel study discovered that cannabis can safely alleviate pain in older MS patients and those with other chronic conditions, such as Crohn’s Disease.

Currently, 20-60 percent of MS patients consume cannabis, and many use topical cannabis products as their primary delivery method. To help treat muscle spasms and pain, it’s common for MS patients to use cannabis topically, so they can apply the medicine onto specific areas of their body. To achieve localized and rapid relief though, it’s recommended to use topical products with one example being CanniMed’s products, from which numerous Canadian MS patients have benefited.