The fight is real

[SheilaDugan]

What I would like people on the site to accept is their pain is real, it is theirs. We need to mske sure our doctors understand what our days are really like.

Personally, I fight constant fatigue. I fight the constant feeling my arms and hands are on fire. I fight them trying to smile at every person I come in contract with. I fight it knowing I wilk never pick up my granchildren, but I smile because I can still read her books and watch her favorite movies with her.

[Hidden]

Well said Sheila. Everyday and night is a fight with this unrelenting disease. X

[SheilaDugan Administrator]

My apologies for the the typographical errors. Hand coordination is a new struggle and I need to slow down when I am communicating. Thank you Sheila

[Agenesis1 in reply to SheilaDugan]

Hi Sheila, Thanks. Feels like you have them over a flame or in the oven.. Don't you love having the feeling of or thinking there is a hair on your cup or glass and it's just the tingling when your holding something? Have you had surgery? I haven't yet until someone addresses my Atlas, I want to know, if they fix below my off centered Spinal Cord into the Brain Stem, and narrow foremen magnum, & Occipital Condyle with encroachment with movement, that the ligament in there is strong enough to handle the shift change. They won't be able to access the Accessory nerve or Cranial Nerves for MRI's if any metal is in the area, which is alot of my pain as well as myelopathy and radiculopathy. Do you ever get pain below your shoulder that feels like it's in your chest? That is the 11th set of Cranial nerves of the 12.. That pain is the lower of the trapeze and the shoulder.. the rest is a combo cocktail of pain, for me from the neck down to the hands and foot/feet.

[Hidden in reply to Agenesis1]

Yes to the cocktail of pain from the head down to the toes. Yes to the entire arm on fire. Well said ! Well described! X

[meljohns]

Well said Sheila. The fatigue and pain feels like a fight for sure, and we smile anyways.