Lately I have had serious trouble with something frequently called the MS Hug (also known as Girdle Pain or sometimes Girdle Band Sensation). What is the MS Hug? There are a couple of theories on what causes this. One theory is that it is just muscle spasms like all the other muscles spasms experienced by people like me. And by “muscle spasms” I mean awful unbearable crippling pain (OK it’s not this bad every single time). The more popular theory is that the spasms are caused by lesions on the spinal cord – I’ve never had an MRI on my spinal cord so I can’t tell you if that could be a factor for me. It can be an exacerbation or a psuedoexacerbation. In my case I’m not sure. But I’m going to try to give you all the information I can about this abomination. Please remember, I work with computers and have no medical background.
My first experiences with this were extremely painful, but slowly I determined that caffeine, stress, and heat were triggers for all of my muscle spasms, especially the ms hug. I cut out caffeine altogether, tried to use yoga and perspective to control my stress, and I try very hard to stay out of the heat. It can hurt for a few seconds to several weeks. It can hurt a little or can be so painful that I end up in the ER because intravenous Valium is my only hope. Sometimes, even that doesn’t help. The pain can be unreal. It can be unbearable. It can be so bad that you do not wish to live through it. My recent episode was the worst it has ever been and drove my blood pressure to incredible heights.
This particular episode lately was triggered immediately by the stress of Novartis telling me that my insurance company had refused to cover any Multiple Sclerosis medication due to cost. Just to be clear, we pay for the highest level of insurance just to make sure we have the maximum amount of coverage and there are no prescription price limitations on our plans.
There are different types of pain. When I talk to my husband about it, I refer to them as “flavors” of pain. But technically speaking, neurologists will usually call this a “parasthesia” which means that it’s an abnormal sensation caused by neuropathic pain. To me, this makes no sense. When I randomly feel like a grease fire is on my hand that is an abnormal sensation caused by my brain. The MS Hug, or perhaps let’s call it the “MS Grip Of Death” clearly involves pain that is caused by muscles gone nuts, even if they have gone nuts because there are wonky nerves between the brain and muscles.
My daily treatment, per doctor’s orders, went something like 10 10mg of Valium per day, spread out over 5 doses of 2 pills each. Up to 6 7.5mg Loritab per day, sometimes 10mg Cyclobenzabrine, sometimes 0.125mg Hyoscyamine, sometimes 2mg Hydromorphone. Between 2 ER visits I was given mostly Valium, Solumedrol, and Morphine. After finally believing I had beaten this episode of the hug, the pain would return and I would have to take pills again. When the exacerbation finally ended, I stopped taking the pills altogether. Normally, I can feel the hug coming on, take a couple Valium and it will go away. At worst, it comes on full force, I take some Loritab as well, or maybe Ambien and I’m better in the morning. Or perhaps I may be on a couple Valium a day for a few days in a row. This was far worse than my previous experiences with this symptom.
I was not prepared for the fact that I would have to go through opiate withdrawal from this episode. It has been extremely difficult, to say the least. It brings back the darkest parts of my life in full color or just leaves me with the blackest possible mood for no reason. Every stupid thing I have done, everything I have done to ever feel guilty about haunts me – from fights with my family to being hurtful to former friends. Every instance where I’ve let a friend take advantage of me or abuse me replays over and over. After a few weeks, I think I’m finally past it and hope to never, ever have to go through either the hug or the withdrawal again.
So, what is this MS Hug thing?
The MS Hug involves some or all of the intercostal muscles going into spasm – these muscles hold your ribs together and make your torso flexible. The image at the top of the blog post shows these muscles – the most important thing to remember is that they are located around the abdomen and are largely in between the ribs. Maybe this is different for everyone, but for me it typically starts on one side and at worst ends up wrapping completely around me from just underneath my breasts to the top of my hips. My muscles often feel like river pebbles to the touch. Clothes get tight because the muscles push out, but the muscles also push in, so vomiting ensues and I can barely breathe more than small gasps of air. You may ask if this is a stabbing, throbbing, or squeezing pain. It’s all of the above. The most common description is that you’re being squeezed or crushed to death.
I have heard that Dr. Oz spoke about this in the past on the Montel Williams show. From what I understand he stated that this was the most common cause of death for those suffering from MS – suffocation from the MS hug. To the best of my knowledge this is completely untrue – there are no reported deaths (that I can find) from suffocation due to the MS hug. However, as high as my blood pressure rose from the pain, I don’t doubt that it could put you in a life threatening situation under certain circumstances. Suffocation? No. Feeling like it? Yes.
The intercostal muscles fill up the spaces between the adjacent ribs. They are arranged in three sets, external, internal and innermost internal, eleven pairs of each.
There are three principal layers
- External intercostal muscles, which aid in quiet and forced inhalation. They originate on ribs 1-11 and have their insertion on ribs 2-12. The external intercostals are responsible for the elevation of the ribs, and expanding the transverse dimensions of the thoracic cavity.
- Internal intercostal muscles, which aid in forced expiration (quiet expiration is a passive process). They originate on ribs 2-12 and have their insertions on ribs 1-11. The internal intercostals are responsible for the depression of the ribs decreasing the transverse dimensions of the thoracic cavity.
- Innermost intercostal muscle, the deep layers of the internal intercostal muscles which are separated from them by the neurovascular bundle.
Both the external and internal muscles are innervated by the intercostal nerves and are provided by the intercostal arteries and intercostal veins. Their fibres run in opposite directions
All muscles are in a constant state of readiness (tonus). Although muscles work in pairs and groups to create movement a muscle can only contract (pull) while the opposing muscle relaxes. However, tension is always maintained in both muscle pairs (tonus) to maintain stability. Tension maintained in the relaxing muscle prevents the contracting muscle from overreacting. When the nerve impulse to the muscle, or muscle group are interrupted the relaxing muscle or muscle group receiving the nerve impulse to maintain its opposing tension will no longer work to maintain the equalizing balance and its opposite partner will then over-react causing the symptoms known as MS Hug.
Here are some ideas for alternative therapies to end the pain from an active hug (and my take on them) from what I personally believe to probably be most effective to least :
- Loosen Your Clothing (Yes. Or just lose it altogether. Seriously. With over 75% of MSers being women, I’m just gonna say take off your bra, hands-down. Men reading this will probably agree, but not necessarily for the same reason)
- Warmth (A heating pad helps, except when the cats demand it back and I wake up with cat scratches all over my stomach. A hot bath helps sometimes, and sometimes not.)
- Fluids (Maybe – I’ll just throw it right back up. Better than dry heaves? Although if the pain is not too bad, it’s sweet when Will makes hot chocolate for me – it’s like a heating pad on the inside)
- Pressure Or Massage To The Affected Areas (I can usually only tolerate this on my back – the pain is too great anywhere else.)
- Ibuprofen (HAHAHAHA – no. This started for me when I was already on 80 mg of Baclofen per day for spasticity, so that never helped me. Valium (Diazapam), sometimes mixed with Loritab (Hydrocodone) is my only solution. Unless you’re very much not like me at all. I have Lyrica, but I haven’t had a chance to try it yet. I have also heard of Lorazepam, Xanaflex, and Neurontin. Botox is a newly approved treatment. Anecdotal evidence suggests that marijuana helps with all muscle pain, other pain, and lots of other MS problems.)
- Analgesic Creams: (This sounds like a joke, but who knows.)
- Deep Breaths Through The Nose, Exhaled Through The Mouth (Who can breathe deeply when you can’t breathe deeply?)
- Creative Visualizations: Pretend It’s Not Happening Or Is Being Relieved However You Wish (OK – whatever – I started going into shock last time and only stopped shaking for about 20 minutes while the morphine worked – feel free to give it a try though!)
Here’s hoping that if you experience this, that this post will help you understand it better. Or if a loved one is experiencing this, you will understand better what they are going through. The pain can be unbearable, and conventional treatments can be dangerous.
If your treatment involves narcotics, perhaps your experience will be different than mine. Be cautious. Ask questions. Almost all of the drugs that I was on for this episode noticeably affected my ability to breathe even when I was unaffected by the hug.
Be careful and good luck to all.
Have you ever experienced the MS Hug?