Can anyone describe their experience in detail of the MS Hug?

[marlanarich]

The pain I'm experiencing is hard to explain. It starts in my neck and travels down my back, through my arms and up over my head also linked with sensitivity to sunlight. Artificial light is not associated. It's a tight dull ache that is different from any pain I've experienced. It's like a really bad tummy ache but in my back and mostly affecting my arms outside of that.

I get sharp/lingering pains in the tips of my fingers and in my knuckles. Everything in that area is stiff and achy. I shake sometimes accompanied with weakness. Also, the tightness I feel in my chest is like its hard to breathe sometimes. Even though my clothes are loose fitting, I still want to rip them off to find relief sometimes to relax. I have this odd swelling in the left side just under my rib cage that hurts sometimes and makes me sit cockeyed. I'm really getting sick of this. What's your experience?

[SNOOPY]

What is referred to as the "MS hug" is muscle spasms of the intercostal muscles. This can cause a binding (girdling), squeezing sensation around the chest and back. It can feel as if you can't breath or you have an elephant sitting on your chest.

What you are describing does not sound like the MS Hug.

I shake sometimes accompanied with weakness. Also, the tightness I feel in my chest is like its hard to breathe sometimes. Even though my clothes are loose fitting, I still want to rip them off to find relief sometimes to relax.

This sounds like an anxiety or panic attack.

I have this odd swelling in the left side just under my rib cage that hurts sometimes and makes me sit cockeyed.

Multiple Sclerosis would not cause this.

As I have mentioned before, you need to discuss what you are experiencing with your Dr.

[KevsLuv]

I hate the hug!

When I first got the hug, it felt like my bra was too tight. So there I was in my couch in front of a picture window ripping my bra off. But my ribs kept getting tighter.

My breathing became mildly labored and I was beginning to panic. This 1st episode lasted for over 2 hours.

Since then, I have had the hug at least once per week and most times aren't as bad as the initial episode. But it is always very uncomfortable. If it lasts too long, I take a muscle relaxer and a Norco to ease the pain.

Sometimes there is some leftover soreness in my ribs following a bout of the hug.

I hope this helps!

[Marco]

http://www.msworld.org/forum/showthr...-gt-The-Basics

[Deesters]

It does sound like the hug. Read this article. I love with it as well.

The MS Hug
The infamous girdle-band sensation can be quite painful
By Julie Stachowiak, PhD
Medically reviewed by Claudia Chaves, MD
Updated April 19, 2019
Man having pain on his side
Jan-Otto/iStockphoto
Perhaps one of the oddest pain-related symptoms is the "MS hug" (a.k.a. girdle-band sensation, girdling, or banding)—the feeling like there's a tight band around the chest and ribs. This can come and go over the course of several weeks and range from an annoying pressure to abject pain. Though it's common in MS, this type of pain tends to be one of the most annoying and uncomfortable symptoms that MS patients experience.
ach individual. It can also feel different in the same people on different days or at different times of the day.
The pain of an MS hug has been described in many unique ways, including:
Sharp
Dull
Burning
Tickling
Tingling
Crushing or constricting
Pressure

This pain usually occurs somewhere in between your neck and your waist.

You might only feel it on one side or in one small area; at other times, it can wrap around your entire torso. The pain can occur in waves that last seconds, minutes, or hours, or it can be steady for longer periods of time.

Like other symptoms of MS, this type of pain can intensify or be triggered by fatigue or stress. It can also sometimes be accompanied by a sensation of difficulty breathing, which is why it may be perceived as a heart attack or panic attack.

Chest pain needs to be taken seriously. Be sure to seek immediate medical attention if you experience severe chest pain and/or you're also having difficulty breathing or other signs of a heart attack. Even if you think it's simply MS-related, see a doctor to be on the safe side.
rea of active inflammation within the spinal cord. This means that the myelin sheath, the coating that insulates nerve fibers, has been damaged. The type of pain caused by the MS hug is technically classified as a neuropathic type of pain, also called a dysesthesia, which refers to any abnormal sensation.

The sensation itself is the result of tiny muscles between each rib called intercostal muscles going into spasm. These muscles have the job of holding your ribs together, as well as keeping them flexible and aiding in movement, such as forced expiration. But like everything related to MS, the root cause of the MS hug has to do with damage to the myelin sheath.

In cases where you've already been diagnosed with MS and the MS hug starts up suddenly along with other symptoms, it's possible that you're having a relapse.

Diagnosis
Years ago, people thought MS was a painless disease, even doctors. Now scientists know that this isn't true. In fact, research shows that likely more than half of people with MS experience pain at some point in their disease course. (Besides the MS hug, other types of pain include trigeminal neuralgia, abnormal sensations in your legs and feet, and Lhermitte's sign.)

While you should not be shy about sharing details of your discomfort with your doctor—information that can help lead to a diagnosis—your doctor will still need to do a thorough workup if your symptoms are similar to those of MS hug because a number of other health conditions can mimic it.

In addition to a heart attack and a panic attack, the following need to be ruled out to confirm the diagnosis of MS hug:

Gallbladder disease
Stomach or intestinal infection
Lung disease
Inflammation of the cartilage between the ribs (called costochondritis)
If these other causes have been ruled out and you have already been diagnosed with MS, your neurologist may want to order a magnetic resonance imaging (MRI) scan to see if you're having an MS relapse, as you may need steroids if your symptoms are severe or debilitating.
Treatment
If your doctor determines that your hug pain is indeed MS-related, there are some ways it can be treated, depending on the severity of your pain and whether or not you're having a relapse. In many cases, you won't need treatment and the pain will pass on its own.

Medications
For severe cases of MS hug in which you're experiencing a lot of pain or it's lasting a long time, your doctor may prescribe medication (or a combination of medications) to help, such as:

A muscle relaxant like Lioresal (baclofen) or Zanaflex (tizanidine)
An antispastic drug such as Valium (diazepam) or Ativan (lorazepam)
An anticonvulsant like Lyrica (pregabalin) or Neurontin (gabapentin)
An antidepressant such as Cymbalta (duloxetine) or Elavil (amitriptyline)
Some doctors have used Botox (botulinum toxin) injections to selectively reduce muscle spasticity. Botox blocks a chemical neurotransmitter called acetylcholine, allowing your muscles to relax. Treatment is typically indicated for those with severe pain and can last for up to six months with relatively few side effects (mainly injection site pain or redness). Botox is also commonly used to treat severe MS-associated bladder dysfunction.

If your doctor thinks that your symptoms indicate a true MS relapse, he or she may prescribe a course of a high-dose corticosteroid known as Solu-Medrol.
Home Treatments
While it would be nice to be able to erase the pain of MS with a simple pill, that's usually not the case. Instead, many people manage their MS pain by embracing tried-and-true home remedies used by others who experience similar discomfort.

Some of these methods, which can be used to manage other MS pain as well, include:

Applying direct pressure to the pain with the flat of your hand
Wrapping the affected area tightly with an elastic bandage or wearing tight clothing (some people feel this helps their brains deal with the constricting feeling better)
Practicing deep breathing to expand your chest and minimize spasms
Wearing lightweight, loose clothing
Applying an ice pack wrapped in a thin towel directly to the pain (unless the pain was triggered by cold)
Taking a warm bath or applying an electrical or microwaveable heating pad (unless the pain was triggered by humidity or heat)
Using topical analgesics such as IcyHot or lidocaine creams
Taking a pain reliever like Tylenol (acetaminophen) or a nonsteroidal anti-inflammatory drug (NSAID) such as Advil or Motrin (ibuprofen)
Moving around, whether it's shifting your position, occasionally getting up and walking, or engaging in regular exercise
Getting a massage
Trial and Error
Because of the individual nature of pain, you may need to try a variety of methods before you find what works for you. It may also take a number of strategies used together to combat your MS pain.

I was going out of my mind until I came across this article and I said aha, it is so the hug!!! Hope this can help you and others like ourselves! 😊

[Golgotha]

A great post Deesters!

I've been dealing with an ongoing MS hug and learned more from that article than I have from my neurologist.

[Teddy1101]

ms hug

I HAD IT BEFORE I WAS DIAGNOSED. THEY CALLED IT AIR HUNGER. NOW I AM ALMOST ASLEEP AND I FEEL LIKE I AM BEING SQUEEZED AS IF BY A PYTHON OR SOMETHING. I BREAK OUT IN SWEATS.IT HAS BEEN WORSE SINCE THE CUT BACK ON MY CLONOPIN.

[Golgotha]

I've never heard it said or written, but I've found one "treatment" for the MS hug that I'll mention (YMMV): an inversion table.

I've never had back problems and had a chance to buy an inversion table on a whim -- so I did. When I get my inter-costal muscles acting up to the point of causing pain, a minute or three upside down on the inversion table will ease the pain and loosen me up for quite some time.

Has anyone else tried an inversion table? If so, what were your results?

[Teddy1101]

When I first got the hug, it felt like my bra was too tight. So there I was in my couch in front of a picture window ripping my bra off. But my ribs kept getting tighter.

My breathing became mildly labored and I was beginning to panic. This 1st episode lasted for over 2 hours.

Since then, I have had the hug at least once per week and most times aren't as bad as the initial episode. But it is always very uncomfortable. If it lasts too long, I take a muscle relaxer and a Norco to ease the pain.

Sometimes there is some leftover soreness in my ribs following a bout of the hug.

I hope this helps!

thanks for sharing. very difficult to get pain meds here or even my Klonopin.

[Golgotha]

Here's my detailed description of my "MS hug."

Based on the above description, what I thought was my MS hug is likely a series of MS exacerbations/issues impacting (in general) my torso.

From my reading the above, the MS hug is located to the intercostal muscles around the ribs. I get some spasticity in those muscles, but mostly spasms/tightness. I read those spasms as charlie-horse style pain. These spasms also occur in my pectoral muscles across my chest and the muscles in my back.

About the same time as my MS hug starting I started feeling MS in various places in my torso. These manifest themselves as what I'll say as "pain" and happen in various places and "depths" inside my torso. Fortunately they're of brief durations.

An aside: My health care is via the VA. The VA is great for paying for drugs and equipment (essentially, great for anything that makes outside corporations money), but the VA health care simply sucks at getting appointments. (VA doctors carry far higher patient loads than conventional, private/for-profit doctors do.) On the rare times I can talk with my neurologist, things are hectic, time is short and there are so many items to be dealt with that individual symptoms are, sadly, a low priority. (This summer I'll pay out of pocket for an MS specialist/neurologist at a non-VA center essentially to get second opinions.)

Some of my "torso issues" is MS impacting my heart and the coordination of the valves in the 4 chambers of the heart. And some of those "pains" feel to me like a dull pain/ache in the heart. Wearing a heart monitor once overnight showed only a couple of irregular events, which the doctors thought was no big deal. I'm skeptical of the quality of "care" and wonder if I'm being "triaged" and largely ignored.

Other torso issues include bizarre tightness in my groin and stomach area, and again, fortunately these are not long in duration.

What I've found is the same thing with some cognitive issues: Doing what I call "changing the environment" helps to lessen or eliminate these issues -- or at least cause myself not to worry/think about them.

By changing the environment, I mean if I'm sitting, I get up and do something physical. If I'm up and doing something, I sit down and chill. Just doing the opposite and changing the dynamic of what my body is doing. Sounds dumb but it seems to work.

I wrote above about using an inversion table which seems to be quite effective in addressing the intercostal muscles. In only a minute or two I can "fix" my pain for hours.

Talking with my neurologist, his key suggest was "eat more baclofen." I was worrying that baclofen was not being effective enough, so I was prescribed tizanidine (again, the VA is great for throwing drugs at problems) and advised to use it as a "sprinkle" used only when I really needed it.

Tizanidine was really effective -- good stuff! The problem with tizanidine is that it can cause liver issues, which is what it did with me. So I had to ditch the tizanidine, eat more baclofen and use cannibis/marijuana as my "last resort" drug.

My neuro upped the amount of baclofen I could eat, saying to use it as needed but no more than 240mg per day. (A surprisingly high amount IMO.) Currently I'm eating about 160-200mg/day.

In summary, I can say is the MS hug sucks.