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Pots Or Fibro Or Eds?


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Hello, me again- your boomerang who disappears off for months and then comes back to bombard the board with questions and anecdotes.

Oxford is all snowy and it looks like Narnia today- Here is a picture of my college, and my room: http://www.facebook.com/photo.php?pid=4091...amp;id=36805933

To the point: I had a couple of postural tachycardia episodes this morning on standing, nothing that unusual there.

BUT: since I came back to work at my desk after Christmas, I find that sitting upright (or even at a slight recline, because I have an ergonomic chair) is causingg excruciating pain in my neck and right shoulder.

At first I thought it was EDS pain, but then it occurred to me that I haven't dislocated anything where the pain is, so is fibro more likely?

Then I remembered that with both of those conditions, nothing very much helps the pain and it goes of its own volition.

Whereas: I am lying supine on my bed to read and to work, and the pain is virtually gone. Could the pain have been my blood pressure dipping, as I know that can cause coat hanger pain? I didn't feel particularly faint as the pain was going on today, but yesterday it felt like someone had pulled the plug on me somehow, and I dropped too many spoons (poon theory spoons, not actual ones) very suddenly and just through sitting at a desk.

Seems weird.

Plus, I am ALWAYS worse in the cold- why is that?! Drives me nuts.

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I also have POTS, EDS and Fibro. When I have this severe type pain in my neck and one shoulder, it has always been caused by my neck being out at T2. If I feel the back of my neck along my spine with my fingers, I can feel where I'm "sideways" at. Once I get it back in, the pain is so much better.

Just a quick thought!! Although you are familiar with dislocations, maybe this is a new one that hasn't happened before.

Your college is beautiful.

Hope you have a better day.


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I've had similar pain for years...I have no EDS but have fibro...sitting up has been huge issue for me due to OI and the coat hanger pain is always there when upright too long. Midodrine can trigger this or worsen this as that med wears off.

I spend most of my days everyday reclined or lying flat in between trying to be upright.

Host of reasons for this but I hope you determine yours & get relief, kiddo. :P

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im not sure whether or not i have eds, hopefully i will find out this year. i too get the neck and shoulders pain if i sit up for too long, have had it since the start of my severe symptoms three years ago. i have to lean on something to ease the pain off. its like my heads to heavy for my body. have no idea why.

also with todays dip in the weather, my breathing and chest symptoms hurt more. around a month or so ago with the weather dropped it took me over a week to get used to the new temps. i know standing up is becoming harder, hopefully it will last a little while before i get used to it.

hope your feeling better soon.


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I know my symptoms go haywire when the temps dip even below 45-50 F... unfortunately, like most of Eastern US, we have had a pretty bad cold snap, with the highs not getting above freezing. I was fairly active (I went to practice organ at church, which is up the stairs in the choir loft) yesterday... I also had to take a restroom break, down stairs (two flights of steps after all was said and done)... plus, when I was finished, I discovered that I had left my cell phone in the choir loft, so again, more steps. I also stayed afterwards for Vespers, which is standing the whole time (about 15 minutes.. maybe a little more). Anyways, after all this was said and done, on my 45 minute drive home, I kept debating whether or not to pull over because I was having such chest pains, and my vision was pretty blurry. Today, I slept in until 10:30 am and I still feel like I've run a marathon because I'm so tired. I forgot to mention that this 100 year old church doesn't have the greatest heating system, so I was pretty cold for my two and a half hour practice. I know the combination of cold and exertion is causing my symptoms today.

I also have severe neck and sholder pain, which in the past I have attributed to TMJ (I have bruxism, or teeth grinding, at night when I sleep), but even after using a night guard for several months, and orthodontics now, I still am plagued with some pain.. Right now, my left neck and sholder are extremely tense and really painful. Heat helps some, I suspect because it encourages blood flow to the area. There have been a few times that the pain goes all the way to the top of my head, and that along with a hypoxia headache, I am really in some pain.

Hopefully spring will be here soon enough... I don't know how long of this I can take!

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I am fed up of pain I can not sit for long at my desk, I am constantly having to change my position and move stand and then sit back down .. I do not know an awful lot about EDS .. I intend on asking to see a rheumatologist .. I have arthritis in my whole spine knees and fingers also I have fibromyalgia and this weather does not help it makes things feel worse ...

I had attributed my neck and shoulder pain to my spine problems ... but it is hard when you can not sit comfortably, I get so frustrated when I can not sit long enough to finish anything ... so I do sympathise with you .. I went to a pain clinic they teach you to pace yourself .. have you ever been to one ... ok in theory but the reality is still hard when you want to carry on with a project ...

your college photo is lovely ...

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It's hard to tell what could cause your pain. I did have one doc tell me I had fibromyalgia once, but I don't have it. My PCP said when some docs don't know what's causing the pain, they'll say fibro. Fibromyalgia is real, and doctors shouldn't use this as a waste basket diagnosis when they're too lazy to investigate the cause of pain further.

My EDS geneticist said my pain is EDS related, as it's caused my spine instability, and all those nerves being impinged. My thoracic spine also sticks out to the side just below my neck. With EDS I'm told to stay away from chiropractors.

MY guess would be the EDS is over extending your joints and ligaments in the area irritating the nerves. On Dec 22nd. I had a five year old give me an awkward hug, and decided to pick her legs up and hang from my neck------------- jawdrop.gif

Then I had a drunk 70 years old 6 ft. 3in. man pull me over to him BY MY NECK at a Dec. 19th Christmas party and vigorously say "GOD BLESS YOU! Needless to say, my neck isn't feeling good.

In Ohio it's a lovely 25 degrees............. we're expecting 3 to 5 in. of snow, and temps to dip to around 20 for the high.

I'm not adjusting to the cold well at all. My husband has to deliver the mail in it. shocked003.gif

The cold weather can affect all of your problems and increse levels of pain.

I hope you feel better soon!

Maxine :0)

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