Chronicles of Life with Multiple Sclerosis
I know I often speak of my muscle spasms, but here is a graphic to better illustrate when I am speaking of.
Some editing has been done to protect the eyes of the innocent. I call this type of photoshop, “Adam and Eve-ing”.
The red circles indicate where I get my muscle spasms.
The ones in the hands and feet feel more like cramps.
The ones in the ankles make my ankles tight and hurts to flex them, walk, etc The tendon in the back of my ankle is tight, but that is a result of the tight calf muscle.
The left side of the body is the worst.
The thighs are always painful and causing great distress. They get hard as a rock. I mean, seriously hard. Actually they are always hard, just harder at times than others.
The arms hurt pretty bad too, but not as continuous as the legs. But the arms muscle will protrude out and you can see it.
As for the green circle. The muscle running from my knee to my ankle has recently caused my leg to look misshapen You can look at it and it looks lumpy, like a roller coaster. This new development kind of bothers me.
The neck and shoulder muscles are mostly tight, rarely does it “ball” up.
The one around my throat, now that one is loads of fun. Kind of like being choked. In fact, at times it is so bad, swallowing is difficult.
The blue circle, well we have a loving term for it, it is called an “MS hugs”, which if I ever find the person who coined it that, I shall give him freaking MS hug around the neck. This is not fun. In fact, at it’s worse you cannot breath. You can but the pain is sooooo excruciating you almost pass out. While the pain last for hours, the worst of it, where you cannot breath, only lasts about 45 seconds. But that is a loooong 45 seconds when you cannot breath. What happens is… you need your lungs to breath, and when you inhale, they expand, and that muscle is sooooo tight that the lungs expanding really puts the hurt on those tight muscles.
So this is my daily pain. The only exception is the throat and MS hugs, I get a break from them occasionally. But the rest occur daily, and when I say I am having a bad muscle day, it is when all these attack at once and with great fierceness.
What stupid fuck decided to call it an MS hug?
Yes, I am about to bitch, so feel free to stop reading… unless you have MS and then many of you can relate.
So this MS hug for me is not a nice gentle hug. In fact, it is almost like an electrical shock. It is right along my rib cage, under my breast. I say breast because it is mostly on the left side. My MS favors my left side. It does affect my right, but not to the degree it does my left.
I honestly am surprised my neighbors did not call the police. It hit and it hit hard. I was screaming to the top of my lungs. I could not control it. I scared poor Hannah to death.
It only lasted 40 seconds, but it was a looooooong 40 seconds. When it hit I could not breath, I thought my lungs was going to collapse, I did manage to get one breath in during that 40 second time frame and it hurt like hell.
If you are reading this and never experienced it, then I cannot truly explain it to you. The best I could describe it is that it is like someone is using a taser on you.
If anyone deals with this and has any suggestions as to what to do about it, please enlighten me. I am open to any and all suggestions.
I know this is supposedly from muscle spasms, but man it does not feel like that.
I am now exhausted. Still sore but not in the excruciating pain way. It has settled into a really tight, uncomfortable bear hug.
Once I was finally able to breath and the pain subsided to the point I was not screaming, I called Hannah into the room, hugged her, and told her I was ok, mommy was just hurting.
She put her little hand up to my face and said, “Mommy, you should call the doctor, he will help you.”
Oh, honey, if only my doctor could help me. But I did not tell her that, I simply reassured her that I was going to be ok and that I loved her. And then I hugged her tight.
Yes, this MS hug is for the birds, but the hug from Hannah makes it so much more bearable.
ugh! thanks for this! MS hug is more like MS MAC TRUCK. Sorry people but I won’t call excruciating pain something nice because it makes you feel better if I talk about it.
They call it an ‘MS Hug’, I understand why but such a nice name to belong to something that is so annoying and uncomfortable is just wrong. It sound so minor not to bother about, I mean what’s the worst a hug can be. At it’s worse, on a couple of times I thought that I was having a heat attack, I realised I wasn’t when, well when I didn’t die and it let go as suddenly as it had appeared. The medical books say it is caused by legions on the spine, it’s mildest form is livable but annoying as it is like having a band round my torso, constricting my lower rib cage. Why am I mentioning this now, simple I am totally pissed of by being hugged for over a week.
It is something I either learned or it’s in my nature but I don’t complain out loud, I silently scream and expect those round me to hear. The British thing of a stiff upper lip, possibly, but I think I got it from my mother. I never saw her ill, she never had a headache or a cold that stopped her from doing anything. Her home was always pin tidy and clean to the point of being able to see your reflection in anything which was intended to have a shine to it, everything gleamed. I did the same for many years and strangely the things that I miss the most aren’t being able to go dancing, swimming or out amongst other humans. I miss being able to clean my home the way I did, I miss not washing walls and shampooing carpets, I miss cleaning the silver and shining the glass, I miss just having those simple things from my old life that made me happy and proud of my own achievements. I miss not being able to sit and knit, embroider, I miss being creative from the simplest act of cooking a meal to designing and making thing for our home and for my family. May-be that is why I am writing this, may-be I just need to scream in a new way, create in a new way, find pleasure in new things.
When I was first housebound I didn’t find it that hard as I had already moved my focus from my pastimes of old and taken up the role of perfectionist in my work instead. My MS has stolen so much from me and I have had to adjust and adjust and adjust, but were to this time? I am not the sort of person to be happy sat on a settee watching TV, computer games get boring after a while, and nothing seems to replace making my brain work for a purpose. Without my MS I am sure that I would by now have a new job, I wouldn’t have needed to send out over 1000 emails to agency’s and apply for over 500 jobs. I wouldn’t have to keep hearing how good my CV is and impressive my attitude to my illness is. I am fed up being told that I am courageous and a role model, I just want a job and some normality and as the second to stop being hugged.
Anonymous asked: What do you know about " the MS hug"?
Well I know the MS hug sucks. heh. fore mentioned apology for my incoherence should be placed here too. bed time meds have been taken. keep that in mind.
I know a bit but only minor knowledge from personal experience.
The ‘MS hug” I get sometimes, that 18 inch belt closing in on you that seems to be full of electrodes and small knives stabbing you every second making it difficult to breathe, stand, move body parts, My experience with this is not generally abdominal (where most experience it) but more in the upper back area through my neck or around a leg or wrist. It squeezes and for me feels like electric shocks hat the go through the rest of my body. IT makes it difficult to stand, focus on anything other than the pain unless you stop what you’re doing and leave yourself time to rest (which still means sitting a feeling the pain). For me it has more random onset or comes after a highly stressful few days. Don’t know much to get rid of it other than riding it out. For a good friend of mine, this is her daily ‘times up’ monitor” Her body tells her she’s out of energy/ability when it comes on during the day, While it happens daily, its intensity is somewhat varied based on her daily activities. I know its hugely debilitating for her ( and myself really when it happens). And as far as I’ve been advised and read.. its something that won’t necessarily go away.
Having learned that MS is so very different for every person suffering It seems important to remember that while we share symptoms they function differently for each of us. To my friend her banding or MS hug is the main ‘symptom indicator’ that you’ve gone beyond your physical limit for the day. i haven’t asked her how she deals with that when it happens but I can definitely do that if you’re interested,
For me the MS hug, or banding as i’ve heard it called, isn’t as regular. on top of the serious fatigue we can all relate to, Banding for me comes and goes. My daily indicator, on the other hand, that i’ve over done too many things today is the residuals of optic neuritis symptoms. This happens almost daily despite my having a good day or a bad day. General attempts to fight fatigue and function as much as possible, leave me with a pretty high level of blindness in my left eye. When things get stressful (more so than normal) i lose sight in both eyes…According to my neuro not much can be done for that. Gotta get used to it.
Banding seems to be a common symptom that once it begins turns into almost an energy/ stress indicator ya know? The symptom that comes back when you do too much or when things are stressful or you’re just having a bad day. Just like my optic neuritis. I’m not sure if this is helpful.. If there is anything more specific you want to know i’m happy to ask around. I hope you feel free to ask more questions. I like the ability to share experience and knowledge with others through this process of living MS. we can all help each other. I hope your “hugs” aren’t too bad at the moment. Sending you healthy (restful at the very least) thoughts. Please keep in touch.