Old 07-04-2017, 05:12 AM #1 (permalink)
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Default Cold, tired, in lots of pain

Oh man. I am so over it. I can't seem to find a position to lie or sit in that doesn't involve pain at the moment. I don't just have fibro. I also have ankylosing spondylitis and I frequently get what's called nutcracker oesophagus, which is where the oesophageal muscle spasms and cramps and it feels like a heart attack (but it's not, I've checked so don't panic). Sometimes these spasms go on for hours where it feels like I can't breathe, can't move and can't talk. It's so painful, I can't even tell you how bad. Like you want to die to escape it. Like someone is standing on your sternum in a sharp stiletto heel. I live in constant fear that an attack will happen and so I don't like to leave my house in case it does. I can't even imagine being out and about when that happens. The first time it happened, I called an ambulance because I thought I was dying and seriously, some part of me wondered whether I shouldn't just let it happen and then the whole nightmare of my life could be over. But no, I didn't die. I just had to put up with that pain for about 3 and a half hours before it subsided.

Right now, my feet hurt, my hips ache something awful, my back hurts, my neck hurts and I feel that horrible feeling right before a nutcracker attack. And it's freakin' cold!
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Old 07-04-2017, 12:09 PM #2 (permalink)
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Default Re: Cold, tired, in lots of pain

So sorry you are going through this. It sounds as though you have 'way more than any one person should have to deal with!!
Is there no medication a person can take for that condition? I have never heard of it before, so forgive me for being ignorant.

I wish I could send you a few degrees of heat. It is 106 here. I could spare at least 16 of those degrees.
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Old 07-04-2017, 02:10 PM #3 (permalink)
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Default Re: Cold, tired, in lots of pain

Hey thank you so much for replying in my hour of need. It's just so nice to know that someone is actually there to listen. Yes, it is a bit much to deal with on top of everything else but we soldier on! I hadn't heard of it either until my mum told me that she gets it too and so does my brother, except that they both are able to stop the spasm before it happens by drinking cold water. I've tried that so many times and it doesn't work for me. I just end up feeling bloated and nauseated and in pain :P

no, there is no medication for it, but they say that in 50% of cases, it is caused by gastroesophageal reflux disease (which my family also has). So I am trying to treat that and take regular magnesium supplements to mitigate the attacks. I don't know if it's working though. I also am not sure whether fibro actually makes that pain worse.

But! I am lucky! (Or so I keep telling myself) My attacks only happen once every couple of months, whereas my specialist told me he has a patient who gets them a few times every day! Poor man! And life could be much worse than it is! At least I don't have cluster headaches or this horrible condition where people can't stop vomiting or a genetic disease where the person literally cannot sleep and they die within 18 months...

Yes, that's what I do to remind myself that I'm lucky—I research awful conditions and diseases. Doesn't always work though. Sometimes, you just feel sorry for yourself :P

I'm just really tired of it all.

Right now, it is the middle of the night for me (5am) and this is the fourth time I have woken up. This happens every night without fail. I only get 90mins of sleep at a time before I wake up again. Been like this for years and I'm just exhausted.

I'm trying so hard to keep my head above water, but with so many health problems, I just can't keep up!
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Old 07-05-2017, 05:14 AM #4 (permalink)
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Default Re: Cold, tired, in lots of pain

I am also sending you lots of heat from the corner of the world that I am in - as we are having a heat wave and it is really nasty out there.

It is so unfair how weather conditions can affect us physically so much - not to mention the mental aspect.

Your health problems are really serious. I really hope you are in the hands of a good doctor. Please talk to a professional about the anxiety this condition affects your daily life. It seems to have a tremendous effect, so please please seek help. Just talking to family members and/or friends might help as well.

And on such bad days, when everything hurts and the cold is in your bones, take it very easy and try to do things that distract you. Watch your favourite film/tv series, do breathing exercises, drink lots of warm drinks, a nice bowl of soup, soft blankets......it is all about making this very bad day pass by as comfortable as it can get. And maybe tomorrow or the day after, you will feel a little better and that alone is a gift to us in our lives with chronic illnesses.

Sending over lots of warmth and strength to you!
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Old 07-06-2017, 11:15 AM #5 (permalink)
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Default Re: Cold, tired, in lots of pain

Hi Akshunhiro,

Like the name and Welcome to the forum.
I'm sorry you are having this painful condition.It reminds me of costochondritis.An inflammation in the area of the ribs, but yours is in the esophagus which is a very sensitive area.I can't imagine not being able to talk or feeling like u can't swallow.That would cause anyone to be anxious.

Maybe there are some relaxing or breathing excercises u can do to help relax that area,before u have an attack.Or a medication that can help relax the spasms.I don't know of them specifically, but if you see a specialist ,like an ENT (ears nose and throat)physician, they might be able to help u.

Hope your feeling better,


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Old 07-07-2017, 03:30 AM #6 (permalink)
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Default Re: Cold, tired, in lots of pain

Hey sagey

Unfortunately, that part of the oesophagus can't be controlled consciously, much the same as the heart cannot and spasms are likewise involuntary. When you swallow food, the oesophagus contracts in 3 different places to massage the food down to the stomach. It is at that third contraction that these spasms tend to happen, just above the entrance to the stomach, right under the tip of the sternum. The oesophagus at that point is surrounded by the lungs and obviously protected by the sternum bone, so there's no way to massage it like you might massage a cramping calf muscle. Drinking water is the most logical way to try to stop such an attack but since that doesn't work for me, I just have to ride it out. The pain reaches up your throat to your neck and down into your stomach, making it very painful to breathe and move and talk. I've tried calming myself down while it happens and meditating but the pain is 9/10 and it's impossible to ignore. But I do have a mantra going through my head to just be patient and it will eventually pass. I just have to lie down and try to cool my body temperature and endure. I went to see a specialist about it and he told me there's nothing really that can be done, at least not in my case. Treating the GORD is all I can do for now.

But, the upshot is that now I know how John Hurt felt in the movie Alien that's a solid plus!
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Old 07-07-2017, 05:16 PM #7 (permalink)
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Default Re: Cold, tired, in lots of pain

Alshunhiro--- Clearly you have managed to maintain a sense of humor in spite of having a seriously unpleasant and debilitating condition.

A big applause to you for that! Keep that humor going. It will save you when nothing else will.

Look up the author Jenny Lawson. She is a very cool and multi-talented woman who has multiple physical and mental health issues and who has the most marvelous sense of humor in what she writes. She has written 3 books available online, and also has a blog called "The Bloggess"
She has been almost a lifeline to me at times, reminding me to seek humor in every situation possible. AND she is an excellent writer.
NY Times best seller list #1 more than once.

Find her, you'll like her.
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Old 07-11-2017, 10:31 PM #8 (permalink)
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Default Re: Cold, tired, in lots of pain

Hey there Akshunhiro.....I also have the nutcracker esophagus and costocondritis. To be honest, I can't tell which one is flaring because they are so much alike. Costo feels like a Boa wrapping around your entire chest and upper back. I have found if I drink some water it settles it down some. I also do not wear a tight bra and do without when I can. Anyway, I get what you are dealing with.
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