Poll: do you get symptoms similar to an "MS Hug"?

[Art Vandelay]

I have spoken to many ME/CFS patients who seem to have symptoms which mimic an "MS Hug". This appears to be one definition:

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.

My interest in this has been sparked by my own odd symptoms which seem to resemble an MS Hug. I also recalled this thread from @Sasha who described it as "feeling like being poked in the back by a broom handle".

This thread mentioned a patient who blogged on healthrising about experiencing this exact sensation. Unfortunately that particular entry is no longer on Cort's site but her other blogs are still online. It appears that the pressure in her back was being caused by a lesion on her spine. It appears that doctors did not know what caused it or how to treat it.

I experienced tight bands around my chest in the first few years after I first got EBV as well as sharp pains in the area under my ribs.

My other symptoms started with a burning pain on the spine. Eventually this morphed into a pressure-like sensation in that area. I always described it as if "someone was poking their thumb into my back".

Some years later, it felt like a girdle around the base of my ribs. This has again changed with the area of pressure shrinking over time. These days, I get odd sensations on my spine in the same area. They will vibrate, burn or feel sharp depending on the time of day.

I have had an MRI on my brain to rule out MS but am thinking it might be best to follow up with my specialist for a spine MRI too.

 

[Pyrrhus]

I wonder about a possible similarity between the MS Hug and Bornholm Disease...
https://en.wikipedia.org/wiki/Bornholm_disease

 

[Tammy]

I never had that sensation of tight band around chest area but I did have it around my head area and wrists and ankles. I do get occasional burning pain in spine.

 

[WantedAlive]

Within months after disease onset I experienced the tight banding around the chest for a few weeks. I deduced at the time this might have been transverse myelitis. I wasn‘t aware of the ‘MS hug’, perhaps its all related.

 

[Strawberry]

About 10 years ago I was getting what I called “the boa constrictor in my bed” symptoms. Mine was in my abdomen though, so different than MS hug. Men won’t get this, but mothers will. It felt like labor contractions. It only happened when I was asleep. I’d wake up gasping for breath. We investigated MS, but I don’t have it. (Of course). I don’t have it any more.

 

[Art Vandelay]

I wonder about a possible similarity between the MS Hug and Bornholm Disease...

That's extremely interesting!

The sensations I've experienced have rarely been as severely painful as appears to be the case in Bornholm disease but it does sound similar too.

 

[Art Vandelay]

Another factor that caused me to post this thread is that I'm seeing lots of Covid long-haulers posting about these exact symptoms. Like many of us, they have been fobbed off by their doctors with various 'non-explanations' such as 'anxiety'. Some are being told that it's Costochondritis also.

Interestingly, it seems as though the literature on MS Hugs isn't too settled. From what I can see, the hypothesised causes include spinal lesions, demyelination and muscle spasms.

 

[Springbok1988]

I feel a squeezing at the base my sternum.

 

[Art Vandelay]

About 10 years ago I was getting what I called “the boa constrictor in my bed” symptoms. Mine was in my abdomen though, so different than MS hug.

Given the definition of MS Hug above (which mentions that it can occur anywhere between the neck and waist), I should have used 'torso' instead of 'chest' in my question to be more accurate perhaps.

Sorry about any misunderstandings!

 

[Jyoti]

I've always described mine as 'being inside an Iron Maiden.' Upper torso squeezed and poked relentlessly.

 

[Pearshaped]

Yes!! But for me that „tight Band“ is at the lower end around my rips, so it is clearly as if I wore a belt around the upper belly which is far too thight.

 

[Art Vandelay]

I've always described mine as 'being inside an Iron Maiden.' Upper torso squeezed and poked relentlessly.

That's a great description!

 

[Crux]

In addition to these symptoms, I used to wake up in the night feeling like I was being strangled.

Even though my serum calcium is normal, I've only found relief from these symptoms by increasing intake.

https://www.healthgrades.com/right-care/food-nutrition-and-diet/calcium-deficiency


Back or neck pain, which can be severe because of spinal bone fractures

• change in level of consciousness or alertness, such as passing out (fainting) or unresponsiveness
  
  Chest pain, tightness, pressure, or heart palpitations
• Rapid, irregular or weak pulse
• Respiratory or breathing problems, such as shortness of breath, difficulty breathing, labored breathing, wheezing, not breathing, or choking
• Seizure
• Tetany (muscle contractions, which can be sudden, powerful and painful)
• Unusual or profound weakness

 

[kewia]

Symptoms:

• tight radial out-to inner pressure around my chest
• sudden muscle cramps in certain positions or when moving too fast
• breathing problems due to tight chest
• heart palpitations with pulse variations, mostly when squeezing my belly or if my front chest near the heart region is very tight
• high blood pressure in case of meds stressing my lymphatic system
• likely lymphatic system damage
• small lumps and ligaments around my chest, possibly lying in fascia around muscles
• tight cords
• expanded belly (looks like I'm very fat) caused by tightening cords in the intercostal region
• ring like pains in the intercostal regions
• I have that pain 24h all around with worst at morning

I'm interested in the medications you took so far to relieve pain.

My experience:

• magnesium helps a bit sometimes, but with vanishing effect taking continuously
• potassium citrate reduces heart palpitations, but also massaging lumps in the intercostal region on the left side
• massaging lumps and ligaments(some kind of horizontal ribbons) reduces them and cause twitches of muscle groups which eases breathing afterwards, but the effects doesn't last that long
• taking immune pushing meds moves the ring of pressure in the intercostal region higher, for instance to the height of the subclavian/thoracic duct joint), taking these meds further moves it to your neck becoming very tight causing high blood pressure, dizziness and tremble
• taking immune suppressing meds moves the ring downwards or more deep into your tissue
• taking detoxifiers like zeolite, spirulina or coal also moves the ring more downwards or increases ring pain a bit
• taking vitamin D 2.5k reduces tightness in the frontal chest a bit, but tightening more in the back of the chest
• taking selenium methionine tightens the front of your intercostal region and relieves the back of your chest a bit
• citrulline helps to reduce the intensity of pressure pain a bit, maybe we have some form of permanent PEM?
• PT around the neck and thoracic spine helps to relieve the pressure pain a bit for around one day
• Naipo shaitsu massage pillow massaging the whole errector spinae and neck cause muscles to twitch and relieves some tightness
• taking tramal relives tightness a bit
• sometimes applying hydrogen peroxide and cloride dioxid transdermal reliefs the ring pressure pain a bit too
• taking alpha lipoic acid at night reduces some tightness in the chest for the next day

Without all of these things, I would be very severe.

If you have some ideas further, please tell me them.

 

[heapsreal]

I have spoken to many ME/CFS patients who seem to have symptoms which mimic an "MS Hug". This appears to be one definition:


My interest in this has been sparked by my own odd symptoms which seem to resemble an MS Hug. I also recalled this thread from @Sasha who described it as "feeling like being poked in the back by a broom handle".

This thread mentioned a patient who blogged on healthrising about experiencing this exact sensation. Unfortunately that particular entry is no longer on Cort's site but her other blogs are still online. It appears that the pressure in her back was being caused by a lesion on her spine. It appears that doctors did not know what caused it or how to treat it.

I experienced tight bands around my chest in the first few years after I first got EBV as well as sharp pains in the area under my ribs.

My other symptoms started with a burning pain on the spine. Eventually this morphed into a pressure-like sensation in that area. I always described it as if "someone was poking their thumb into my back".

Some years later, it felt like a girdle around the base of my ribs. This has again changed with the area of pressure shrinking over time. These days, I get odd sensations on my spine in the same area. They will vibrate, burn or feel sharp depending on the time of day.

I have had an MRI on my brain to rule out MS but am thinking it might be best to follow up with my specialist for a spine MRI too.

Interesting symptom. I regularly get pain around my ribs like they are clenching together. Pain is usually around the ribs on the side. Reminds me of when I use to play rugby league and the day after a game, I'd be sore all around the torso from being tackled. Must be some sort of neuralgia as extra lyrica seems to help.

 

[Art Vandelay]

Interesting symptom. I regularly get pain around my ribs like they are clenching together. Pain is usually around the ribs on the side. Reminds me of when I use to play rugby league and the day after a game, I'd be sore all around the torso from being tackled. Must be some sort of neuralgia as extra lyrica seems to help.

That also sounds familiar. Lots of long covid patients are also mentioning odd chest pains, tight bands around the chest and rib pain.

I finally got a chance to talk to my specialist about it and she quickly sent me off for an MRI of my spine last week.

 

[heapsreal]

That also sounds familiar. Lots of long covid patients are also mentioning odd chest pains, tight bands around the chest and rib pain.

I finally got a chance to talk to my specialist about it and she quickly sent me off for an MRI of my spine last week.

That will be interesting to hear about your spinal mri. Do you have any abnormalities on a brain mri?
I had a brain mri last year which showed some legions and blood vessel inflammation. After looking into the legions/type2 hyperintensities further, I believe they are the same abnormalities that Dr Cheney and Dr Peterson found in cfsme pts from the Lake Tahoe outbreak and other pts. At the time they called them UBOs ie unidentified bright objects. Apparently they can change with the right treatment and usually not enough present to use it for an ms diagnosis. I guess in a broad simple view it's saying the brain is involved.

 

[Art Vandelay]

That will be interesting to hear about your spinal mri. Do you have any abnormalities on a brain mri?
I had a brain mri last year which showed some legions and blood vessel inflammation.

Interesting. My specialist didn't remark on my brain MRI results so I assumed they didn't find anything. I'll make a note to ask her when I talk to her next.

 

[Woof!]

Interesting symptom. I regularly get pain around my ribs like they are clenching together. Pain is usually around the ribs on the side. Reminds me of when I use to play rugby league and the day after a game, I'd be sore all around the torso from being tackled.

I've long experienced the feeling of rib/torso constriction like this, particularly side-to-side rib pressure most notable in the morning, akin to wearing clothing two sizes too small. Having had a 1,000# horse fall on and struggle back and forth over my 95# torso when I was a teenager (rolling over my head to get up), I always thought what I'm still feeling 50+ years later was connected to it. Maybe not...

 

[heapsreal]

I've long experienced the feeling of rib/torso constriction like this, particularly side-to-side rib pressure most notable in the morning, akin to wearing clothing two sizes too small. Having had a 1,000# horse fall on and struggle back and forth over my 95# torso when I was a teenager (rolling over my head to get up), I always thought what I'm still feeling 50+ years later was connected to it. Maybe not...

I sometimes think cfsme can bring out old injuries, maybe systemic inflammation sets it off.