MS Python/Hell Hug, (MS Hug)

[Rob]

I have the dreaded MS Hug, which is a terrible name, see title. I have the hug 24/7/365. It never goes away. I describe mine as a 15' python around my upper abdomen/lower ribs, (mostly just in the front). She, my python, grows depending on what I do, and/or her mood. When she grows, I find lying on a round pillow, (perpendicular), under my back to stretch the area in the front helpful.
The worst she has ever gotten is 35' and stopped my diaphragm from moving freely. I call that an acute attack as they last about 30-40 minutes. I know a few MSer's that have had acute attacks however, I have only met one that has it like me 24/7/365.
I figure with Dave's massive army, there must be more of us out there. I'd like to have a conversation with them, the 24/7/365er's, on this form and share what we do/have tried to lessen this burden. Please let me know if you have this too. Thanks, Robert

[Suebee]

Rob, sorry to hear you are having this problem. I waited to see if anyone would answer before I replied about my experience because I have pain/pressure in my chest and girdle area but not officially diagnosed with "MS Hug". Having been to a few top notch neuros, spinal neuro, pulmonolgist, PTs, etc. I wonder if no one has answered your post because "MS Hug" is not a common official diagnosis.?!? I don't know. I've decided the MS Hug can be caused by lesion, inflammation, or spasticty or all three. So this is my plan:
If hug is caused by misfiring neurons, Neuro can prescribe meds to quiet it, (e.g. tegrotal- i didn't like it but haven 't ruled out trying it again). You can also try to fake out your brain by putting sunburn cooling spray on area; you can put over the counter strong lidocain on small area (follow directions). This is a new trick of mine for a side stitch. I also have over the counter TENS "smart relief" which I stick all over my back and this can help.
If hug is caused by muscle inflammation, or from awkward muscle recruitment, NSAIDs, warm compresses or shower if tolerable, ice if feels good, and I seek out trigger points in between my ribs. (Google trigger points chest pain for illustrations.)

If hug is caused by spasticity, neuro can prescribe meds (but I'm not a fan of anti-spasticity drugs either. I can't remember what state you live in- you might have other medical options....). One can also do back stretches and yoga stretches to open up the back/chest. Google yoga positions to open back/chest but if you do try this, obviously do it slowly and preferably with an instructor. My instructor showed me exactly how one eases into a certain pose which is good for loosening the hug.

Breathing - If you're worried, put your mind at ease by seeing a pulmonologist. Doc should be able to determine based on breathing test if your breathing is significantly affected and if breathing machine at night might be helpful. One can also place their own hands on each side of the rib cage near diaphragm and to see if there is a significant difference in the rise of diaphragm on one side.

Vitamins/misc. - make sure your b-12, calcium, magnesium, and zinc are good and other blood levels. Low b-12 can make you feel tight in chest.

Stress- yah, it can make it worse. big surprise. Try to chill out if stress is getting to you. An occasional beer or glass of wine with friends might help. It does me

I hope that is helpful Rob. And I really hope others out there might have some more observations. Suebee

[Rob]

Acute Attacks

If anyone ever has the acute attacks I described above and can't breath. Put a pillow, blanket, anything under your back immediately. This won't stop the attack however, it did allow my diaphragm to move freely and breath! Relieving most of my panic, not the #10 pain though.

[Rob]

Suebee, Thank you, thank you for replying! I never thought about it being an official diagnosis before. Come to think about it, it was I, the great Dr. Bob, who diagnosed this. I had this for awhile. Started w/ an area in my abdomen about as big as a softball. I thought it was pushing out at first. Sent to a gastroenterologist, who stuck camera's in both ends and came up w/ nothing. My family Dr. ruled out everything he could think of too. It wasn't diagnosed until I read an article about how difficult yet important it is to try to describe your MS symptoms to your Dr.'s. One of the ladies described her MS Hug, and talked about always holding her side as it made it feel a little better. I looked down to see my hand at my side as I had been doing the same. Lights, bells, and whistles erupted and I was diagnosed. (Side note: after 5yrs. of holding my side I got tendinitis in my elbow, thanks hug.) I'm pressed for time today and have much more to say. I'll write back when I can.
By the way this is Dr. Bob replying and I Officially diagnosis you w/ the MS Hug!

[Rob]

I can’t believe it’s been 12 days since I last wrote. Did I mention that I have the attention span of a gnat? Well that’s not true because that would be an improvement. Really having hard time w/ concentration and focus lately but, that is a different topic.

Suebee, Wow so many good ideas. I’ve tried several. Some minorly effective however, only briefly. The ones that do, only work to calm the beast back down to her normal 15’. Like lying on the pillow (I described before) and stretches will calm the beast when she’s angry. They also help if used proactively beforehand.
I have been told by an MS Neuro that you cannot have the hug w/out a spinal lesion. I know that it’s neurologic pain, dysesthesias’ the technical name. I’ve taken Neurontin before and I’m now taking Lyrica. Both are used for neurologic pain. I wasn’t familiar w/ Tegretol and asked Neuro. She said, “no, too many side effects”, and will start with a low dose Zanaflex (Tizanidine) and work up. I’ve been on it before but will try again. This one might be an option for you as you didn’t like Tegretol.
Like you, I too believe it’s part spasticity as stretching & massage help. Massage with a myofascial emphasis, in the abdomen, help me.
You mentioned anti-spasticity drugs & other medical options. I’ve been maxed out on Baclofen (120mg/day) for a while now. Other options, I can only AssUMe of the cannabis type. The one lady I meet w/ the 24/7/365 Hell Hug, (her name), said smoking pot was her only good relief. I’ve resisted this primarily as I’m an ex-cigarette smoker and had a very difficult and sickly time quitting. Yoga and other stretches I believe have helped me a great deal, as I have not had an acute attack in a few years, (knock on wood). The Sphinx pose is good for me as my hug is in the upper abdomen. Cobra is good however, it’s difficult to hold for a long time, and time is what it takes to loosen the hug. Like the Sphinx lying on that big round pillow stretches my abdomen and arch my back as well. For me the relief is just to get her back down to 15’.
Thank you again for writing I hope we can continue and others will join too.
Robert

[Suebee]

Rob,
I am glad you found some of my comments helpful. They help me just a bit too. The pillow maneuver you describe is actually a specific yoga maneuver to open up the chest. My yoga instructor helped me with it. Here is the best description illustration I could find, showing vertical placement of a rolled towel under the back and placement of arms of legs. It is a pose that must be eased into it, but when you get it correct, your shoulders will relax back to the floor and you can feel your chest muscles loosen. The link explains how to place limbs and how to ease out of the position. Also, as the yoga lady who instructed me said, you need to do "counter" maneuvers to make the chest opener really help. They are on the link too. http://experience108.ca/tech-neck-lo...yoga-can-help/

With regard to medical cannibus, I understand it helps MS spacticity better than anti-spacticity pharmaceuticals. There is a lot of info out there for medical versions that help MS, and different forms such as oral tinctures, and ones that quiet nerves but have low levels of THC. I haven't embarked on this frankly because it isn't legal in my state and I'm concerned it could impact my employment. (I note, however, that I think it is unfair that people are forced to suffer and make such decisions due to a societial whims).

I hope others on this forum can comment on what levels and timing of bacolfen, zanaflex, or tegretol have helped them with their particular spasticity. It's been discussed before, I just can't remember which threads. I currently don't use anti-spaciticity meds, but I haven't ruled out trying them again. I do find combo calcium, magnesem, zinc tablets help reduce my spacticity.
Good luck. Glad to have oppty to chat with you. Suebee

[Fit Paul]

In all honesty medical cannabis is vastly more beneficial to me than Baclofin. I was very dubious about it but once I learned how to properly use it there was no turning back. I'm also an ex cigeret smoker and have NO desire to do that again. Good luck dealing with this crap

[Rob]

Thank you Suebee. That link is great. The second pose, w/ the pillow perpendicular, is the one that I use. I just put it further down behind where my hug is in the front. I do know that they are currently testing a new long acting Baclofen; which would be nice not having to take 2 pills 3x/day. I just started a treatment regimen of acupuncture to see if that helps with any of my symptoms. I’ll let you know in about six weeks.
Fat Paul, thanks for commenting. Without turning this Hug thread into a medical cannabis thread, can you tell me what you mean by properly using, (vape)? Also how long does it last / frequency of dose and is it low THC? Thanks

[nabbosa]

much smaller hug

....so maybe MS doesn't love me as much as it loves you, Rob?

Only one doctor has officially called what I have the Hug. It's on one side only, over my ribcage. It calmed down a bit, then got worse when I got stressed - and then I got diagnosed. But my PCP at the time suggested I go to a massage therapist/bodyworker skilled in cranio-sacral therapy and ortho-bionomy. Turns out, she used a thing called Chapman's points, too. It's kind of a conceptual cross between Western medicine and acupuncture - without needles. You can look it up on Wikipedia, I believe.

It has made a difference for me. I've also noticed the part about touching my side making things better. Since it's so mild now, I see it as kind of like the mirror-box trick they do (did?) for amputees having phantom limb problems. I figure if I give the spot an actual stimulus, it resets the wonky connections to know it should stop with the fake stimulus.

I'm only going on faith in my rudimentary work on neurology through a couple of cognitive science classes in grad school. Emphasis on the faith part, because at least it's something when nothing else works.

[Fit Paul]

Rob, I now use (legally) medical cannabis. I prefer Indica strains over Sativa. I use small dosages fairly frequently, 2 to 3 times a day. I have recently started to try edibles, don't quite have the dosage dialed in yet. It relaxes my muscles as well as my mind, no side effects other than the obvious. I absolutely refuse to drive impaired so I have to wait until I have all of my chores done for the day. As a side note my wife who is a registered nurse and a retired police officer insisted that I try medical cannabis. She is an advocate for it's use.

[Rob]

Thank you nabbosa for your comments. I’m looking into some of the therapies you mentioned. I’m wondering how often you go to a massage therapist and which of the three therapies were beneficial or was it the combo of all three? Also, so you don’t find that it only helps a bit, or temporarily as SueBee and I discussed? Wonky Connections indeed!
Thanks Fat Paul.

[Rob]

Also, noteworthy on the subject of “not having any acute attacks in the past few years”. Beside doing Yoga and other stretches, I have not sat in my recliner. My recliner sits with my back arched slightly forward. That is ok for a while however, for long periods this increases the size of my Python. A few of my cute attacks happened after falling asleep in my recliner. After spending hours slightly hunched forward, when I would go to sit up and get out of the chair is when the attack would happen.

[nabbosa]

Massage for MS Hug

The therapist used different modalities depending on what she thought was going on with my body that day. She also dealt with non-MS stuff.
I went either every other week or every third week, as I could afford it at the time. I've moved now, and haven't found a new therapist yet. But I also only notice it for the non-MS stuff.
I seem to remember there being websites where you could look up therapists in your area who are trained in some of these methods. Can't remember which ones, though.

[Fit Paul]

I need to try yoga, if I could kick big pharmaceutical to the curb I would be happy.

[Rob]

Paul, that’s great that you don’t drive impaired. So, in the morning are you still getting some benefit from the Indica that you can wait until the afternoon?