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If you have pain, where is it located? Is it severe? What's it feel like? I've been in major pain kinda all over my body, like I've been hit by a truck. I do have osteoarthritis so I'm used to that pain, but this is horrible, I feel like I'm 90 years old.

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Mine is exclusively in my soles, mostly also my calves and sometimes my legs, when I sit too long (can be already after 15 min., sometimes only after 2 hours). In every other situation/posture (supine, walking, standing,) I don't experience any pain anywhere.

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I get deep shooting shocking pains in my calves. Not all of the time but for periods of time. I also go through periods of time where I have pain in my legs, arms, abdomen, cheeks, and forehead. This is a burning surface pain. Like a bad sunburn that someone is rubbing with sandpaper. I hate this pain, and look forward to breaks that I get. That it covers such a large area, is part of what makes it intolerable.

Then I get POTS chest pain, then vasospasms that are difficult to tolerate. POTS headaches, and the occasional migraine.

Something is hurting all of the time.

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At my worst I had pain in my arms, legs and head I couldn't seem to lift any part of my body at this time as it felt so heavy, I also experience severe chest pain, I am pleased to say this has subsided to just aching muscles in recent months.

I also get very red burning palms which itch, it also affects the crown of my head which also feels very bruised to even the lightest touch, although that has been like that since I had alopecia I think this may be inflammation

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Hi Cammee,

Is this pain a new symptom for you? I'd think maybe calling your doctor would be a good place to start. I experience terrible migraines so I can certainly sympathize with you. I hope you feel better...

Sarah

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Chest pain, which I'm convinced is coronary artery spasms.. This is accompanied by upset back aching and aches in my arm too. Does anyone else get chest pains in the left side?

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I have pain in my hands, forearms, neck and spine with occasional headaches. They haven't figured out why yet. I also get pain and a heavy feeling in my thighs that's connected to blood pooling.

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I have chronic neuro muscular pain/stiffnes in my feet calves hamstrings hands and forearms. Its mostly in my feet, calves. No inflammation. Its gets worst when I am still (not moving). Im pretty certain the type or cause of my pain. Channelopathy. I have confirmed calcium channel antibodies (N-type).

Ion channels (Potassium, Calcium, Sodium, and Chloride) are channels in your cells that are responsible for moving neurotransmitters from one cell to another. On the cell surface there are pores (gates) that (Potassium, Calcium, Sodium Chloride) open and close allowing these chemicals to flow in and out which allows the cell to reach a certain electrical current (Voltage Gate). Once that certain electrical current is met.... neurotransmission fluctuates from one cell/nerve to another.

If you have unexplained neuromuscular pain... you may want to read up on ion channelopathies. Many myopathies are caused by antibodies to a specific ion channel. In fact, the antibody I have is one of the most frequent tested antibodies in POTS patients.

http://www.slideshare.net/DukeHeartCenter/2-kamal-chemali-855am-autonomic-disorders-neurosciences-conference-vb-2014

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Cammee,

I also forgot to add that I used to experience pretty terrible muscle ache's in my legs. It felt like they were in knots and cramping up all the time.. One of my doctors discovered my Potassium levels were very low. The range at the lab mine were sent to was 3.5-5.0, and mine came back at 2.4. I was admitted for an IV drip and now I take a potassium supplement 3 times a week as directed by my doctor.

Sarah

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Sarah,

Just curious, did you doctors find a reason for your low potassium levels or did they just provide the supplement after not finding a specific cause?

Kate

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