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Dr. Diana, both a doctor (therapeutic optometrist), and a recovered POTS and ME/CFS patient, offers help and hope for POTS, Dysautonomia, Ehlers-Danlos syndrome, Chronic Fatigue, Chronic Lyme, vascular abnormalities, Fibromyalgia, and Multiple Sclerosis. Dr. Diana is now working full time at POTS Care.

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Reply To: crazy pain I don't know how to explain

NEW STUDY! Parasym Plus™ for Multiple Sclerosis › Forums › PrettyIll.com Discussion › Coping › crazy pain I don't know how to explain › Reply To: crazy pain I don't know how to explain

March 11, 2015 at 2:54 pm #5366
Mog the Dog
Participant

Mog the Dog here. Yep, we do need to create a new vocabulary for all the weird feelings and unusual pain.

I was just telling a friend this the other day when I had trouble describing the weird head symptoms I have been having. I knew he could totally relate to my experience if I told him my finger hurt because I just touched the hot stove, but I had no words to describe the hellish nightmare I experienced during the weird seizure-like head episode. The best I could do was tell him that if I could create the same episode inside his head, his jaw would drop and his mind would be stuck on, “You have got to be kidding me! How is it possible to feel this bad in such a weird way!”

Speaking of pain and weird, I used to have excruciating joint pain in the hips and shoulders that would only hit in the middle of cold nights. It would start when I would wake up and move the joint and last for about 30 seconds or so. In my final month of pregnancy, it happened 5-6 times per night in my hips and was so intense that I could not talk through it. It was worse than the labor pains I had and the pain following separation of my pubis symphysis when giving birth.

This weird hip and shoulder pain on cold nights completely went away when I went on Plavix and aspirin and comes back when I go off of these medications. Weird.

MTD

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