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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: Chiari Check

NEW STUDY! Parasym Plus™ for Multiple Sclerosis › Forums › PrettyIll.com Discussion › EDS/MS/Chiari › Chiari Check › Reply To: Chiari Check

January 20, 2015 at 2:13 pm #5245
Yvette
Participant

Hello Brenda,

Thank you for responding. I too have constant pain in my head and neck and in my right shoulder. My pain becomes intolerable during the winter months and during barometric pressure changes. I lay down most of the time to control the pain and I keep my head slightly propped up. It feels like my head is going to explode from the pressure and the brain fog is terrible. I am bed ridden majority of the time from pain. I appreciate you sharing that you feel your life is at risk due to the pain. I feel that way all the time. I can’t imagine this much pain is not life threatening.

My only advice is to see a rheumatologist or an orthopedic doctor if you suspect EDS. A rheumatologist is the appropriate specialist for EDS so I would start there.

Definitely tell your neurologist about your symptoms and things you have read. From my own personal experience, I feel like the more info I can give, the closer I am to getting better.

My mother has so many symptoms of EDS but she’s not hypermobile. I feel like she has some variant.

I wish I could be more helpful, I hope you feel better soon.

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