MS Hug, Squeeze from Hell!

I am actually in this video. My picture appears around 6:03.to 6:10

I was diagnosed in 1999 with MS, or Multiple Sclerosis. For the most part, my progression has been rather slow. Most people, when they meet me, don't have a clue I suffer with a chronic disease. That's because most of my symptoms are invisible. They still affect me, they just can't been seen by casual observation.

Though I deal with symptoms daily, they don't incapacitate me. They might slow me down....well, I've slowed down, because if I don't, those "everyday" symptoms will manifest in a huge way, and I could be down for the count for days. I've learned over the years to pace myself. This has been difficult, for I'm the type that will go, go...and go. But, with MS, you only have so much energy a day. If you use it too quickly, that's it for the rest of the day. And if you really over-do it, you've borrowed energy that would go toward the next day, even the day after that. It's not worth it most times. So if I give extra energy to help someone, even if it's a visit (yes, visiting can do me in), that means they are worth it, and I don't mind, possibly, doing myself in for a few days. Other times, I just have to say no. I know when I want to push it and when I don't. Hopefully people understand and respect that.

I've been lucky, the biggest flares I ever had, which amounted to about 3 flares, lasted, at the most, 2 weeks. That was until 7 months ago. The "hug" i had read so much about, decided to rear it's ugly head into my life.

First, I'd like to say, whoever named it the "hug", must have been out of their mind!! The term "hug" makes it sound kind of innocuous. What's a little hug,, right? Let me tell you, it's not a hug by any means....It's more like the "grip of death!!!".

Symptoms of the "hug":

• Girdle-band sensation
• chest pressure
• sternum pressure
• feels like an elephant sitting on your chest
• feeling "air hungry". Feels like you can't get enough air, even if your breathing fine
• Symptoms can be as low as the waist, or as high as the chest, or only one side, or in the back other times, or all the way around the torso.
• Stomach can become tight, making it difficult to eat enough
• Some experience vomiting due to the stomach squeezing too tightly
• Pain can cause taking deep breaths, or even normal breaths unbearable, so you're reduced to taking short, little breaths
• Pain can be minimal to excruciating. It can feel like crushing pain, to sharp pain, stabbing pain, or burning, to tingling, and/or a constricting sensation, muscles spasms in the rib area and/or abdomen area

This is not an exhaustive list, as I'm sure there other symptoms associated with the "hug".

The cause of the "hug", from what I understand, is caused by a lesion on the spinal cord and is classified as neuropathic pain, called "parasthesia", meaning -abnormal sensation.

The pain is caused by the muscles, in between our ribs, tightening up or spasming, and many times, not loosening, such as with spasticity:

Stress can cause MS symptoms to appear, including the "hug"

• Spasticity is stiff or rigid muscles. It may also be called unusual "tightness" or increased muscle tone. Reflexes (for example, a knee-jerk reflex) are stronger or exaggerated. The condition can interfere with walking, movement, or speech.

http://www.nlm.nih.gov/medlineplus/ency/article/003297.htm

The severity of the "hug" is different for each sufferer. Some have it mild, or others, like myself, have it severe.

The duration of the "hug" can last a few minutes, a few hours, a few days, months, or even a year, (which I read about a few people having it last that long).

My "hug" has been with me for the last 7 months, though I did have a two day reprieve a few weeks ago. Yippie! I keep waiting for the next one.

Most MSers ,experiencing some of the above symptoms, go to the hospital, fearing a heart attack. And that's just what I did when the "hug" first appeared. I thought I was having a heart attack.

I was getting ready for a job interview. While brushing my teeth, I felt tightness around my chest and noticed I felt like I wasn't breathing well. I called the job interviewer to let them know I wouldn't make it and off I went to the hospital.

Once at the hospital, they took me in quickly. They hooked me up to the EKG machine, took my blood pressure and took blood, checking it to see if I had a heart attack. If I had suffered a heat attack, the blood would show a CKMB

• What is CK and CKMB? Creatine kinase (CK) is an enzyme—a protein that helps cells perform their normal functions—found in the heart, brain, muscle and blood of healthy people. Blood levels of CK rise when your muscle or heart cells are injured. CKMB is a form of the enzyme that is found mainly in heart muscle. While a high level of total CK can indicate damage to muscle, a high CKMB level suggests that there is disease or damage to the heart muscle specifically.
• CKMB levels begin to rise within the first 4 to 6 hours after heart attack symptoms begin and reach their highest level after about 18 to 24 hours. Levels return to normal in about 2 or 3 days.

http://www.hearthealthywomen.org/tests-diagnosis/heart-attack-blood-tests/heart-attack-tests.html

They also checked my oxygen level, which was fine.

I had chest x-rays done, which were good.

They checked everything, and after nine hours I was able to go home. I didn't suffer a heart attack, though I had no answers.

After my last trip to the hospital, the symptoms were almost non-existent. I was feeling good and decided to try for another job, to be a Home Care Giver.

I passed the first interview and I was accepted for their free training program, which lasted a week. If I made it through the week, and passed the written test. I would be employed.

I made it to day four, out of the five required days. Now, I was having some problems with balance and some cogfog, but it was nothing I couldn't handle. My symptoms were slight. Though, some days after training, I would be in serious pain when I got home. But the next day, I was right back at it. On day four, that was when my real trouble started.

We had to train at a nursing home, taking care of the residents, by changing their bedding, helping them with their showers, transporting them from bed to chair, helping them change their clothing, and so forth.

I did okay. I made it through the four hours I was there, which was surprising. I haven't stood that long in a long, long time. The problem started when it was time to leave. I had to walk a considerable distance to get to my car. My legs were dragging and I was experiencing foot drop. Most of the other trainees thought it was do to my new shoes. And I let them think that.

I finally made it to my car! We were leaving for our lunch break and then would meet back at the schooling facility. For lunch, I stopped at the drive-thru at Burger King. I ordered my food, and at that time, realized I was feeling a bit breathless, then parked to eat my lunch.

It wasn't long after that, that I realized the "breathless" feeling was getting worse, so I started getting anxious, which I'm sure didn't help my breathing any. I panicked and called 911. So there I sat in Burger King's parking lot, waiting for the ambulance to pick me up.

The ambulance arrived, I gave them my medical information and off we went to the hospital.

Once there, they hooked my up to an EKG, they took my blood pressure, checked my oxygen level and took chest x-rays. Everything was fine. They realized it might be MS causing the symptoms, mainly the "hug". They gave me a Valium, and within an hour, I was feeling much better. My breathing was back to normal. The Valium relaxed my muscles so breathing wouldn't be difficult.

The doctors said the cause of the MS flare was probably due to over doing it with the training program. Needless to say, having an ambulance pick me up during training, didn't do anything for my chances for that job, which I guess is a good thing. I would hate to think I could hurt a patient because of balance issues or other MS stuff.

Many of the medications, that help with the MS Hug, can be highly addictive, so you need to use caution in taking them:

• Antispasticity Medications include: Lioresal, Valium, Lorazepam, and Xanaflex
• Neuropathic pain reliever medications: Lyrica (pregabalin) and Neurontrin (gabapentin)

I was on Lorazepam, but got off of them as soon as I could. I did some research on it, and withdrawal can be difficult. I found out. I stopped them cold turkey, and the next day was suffering a horrible panic attack. I called my doctor right away. She told me that was a side effect from abruptly stopping the Lorazepam. I would have to wean myself off of them slowly, which I did. For I hate taking medication if I don't have to.

So, even though the "hug" has crept back, I am managing it with out meds. Is it easy? No. Some days the pain is unbearable, but I do not want to go through withdrawal again from the meds that help.

The worst part of the "hug", outside of the pain, is that it has incapacitated me. I can't stand too long, for my muscles tighten EVEN TIGHTER!! I am bascially living on my sofa, and that's about it. I'm unable to do much of anything. I've never had a flare like this one. The "hug" just won't let go. 7 months is long enough for this "huggie" visitor. I've had enough "hugs" to last me a lifetime!

My hope is that I will get a few more days of reprieve, like it did before. And, maybe, eventually, it will start to taper off and drift into oblivion. That's what I hope.

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