The Northern Virginia (NOVA) CFS/ME, FMS, & OI Support and Gratitude Groups
Insightful, Conversational, Encouraging,
Long-winded Answers to Questions from Experience
of
CFS/ME, FM/FMS, OI and similar syndromes
A. Depending on how long you've actually been having symptoms and how long you've been seeking a diagnosis, our answers might vary some... but here's a start.
Realize a diagnosis is another beginning, a guideline for more to learn and try.
Build a team of doctors and other health professionals, attorneys, if needed
Join a local support group;
Join a national association;
Sign up for some automatic email information about your condition;
Evaluate your work/school/disability situation;
Observe yourself, allowing time to be patient with yourself and everyone else, too;
Begin to notice your push / crash cycles;
Notice your use of stimulating supplements, foods;
Simplify as you can. Healing takes rest, space, and time;
Say no first; stop volunteering to do more for yourself, for others.
A "No" gives you time to change it to yes when symptoms allow.
Yes is an immediate obligation;
Take in a reasonable amount of salt and water,
and the other electrolytes - frequently.
Visit the group at least twice before deciding whether it's for you or not. Sometimes leaders have off days or difficult personalities show up at the one meeting you choose to attend or the topic or speaker of one meeting might not be to your liking. Please give it another chance. Give yourself another chance to make a friend there, learn about a doctor or treatment, feel less isolated.
Maybe call the leader in between meetings to get a broader sense of the group. Many people have called or shown up to meetings to say they gave up on our group based on one meeting. When they tell us why a few years later, it's usually for an atypical, unique event. To find a group near you, see our list of Other Associations and Groups.
All are welcome to join our email lists, CFSupport &/or MVPS-D_OI_nova, and delete any unwanted local DC area events and resource notices. CFSupport is more active, covers more topics, especially about disability.
For regular information delivered to your door in print, join a national association. See Resources: Major Newsletters.
Groups offer more local resources and can provide reassurance you are not alone. They can also be a big bummer. If you can't find one near you, you can start a small one. See Resources: About Support Groups.
See also:
Updated September 8, 2013