ME/CFS Recovery/Recovering Stories Requested

March 6, 2012

Posted by Cort Johnson

CFS recovery stories requestedAs part of a treatment overview Phoenix Rising is documenting what has worked for individuals who have gotten well or nearly well. While recovery is not common it does happen and we want to find out how.

If you’ve recovered or have mostly  recovered please give us your stories. If you know someone who’s recovered please let them know about this project (or give us their contact info and we will contact them.)

Neither your story or your contact information will be made public without your permission.  Basic information (see below) about your recovery will be entered into a spreadsheet which will be made public. You can remain anonymous or use a pseudonym.

Some of the things we’re looking for include

  • Type of onset
  • Age at onset
  • Degree of debility at its worst (how sick were you?)
  • Length of illness
  • Effective treatments
  • Degree of Recovery
  • Comments/Advice for others
  • Recommended Resources

Please send your stories and/or answers to the following questions to Thanks :)




{ 4 comments… read them below or add one }

JOYCE SCHNEIDER August 9, 2012 at 9:39 am

My problem with clonazepam is constipation. It has gotten so bad that nothing will help and I’ve tried every thing. Do any of you have to deal with this as well? If so how do you take care of it? I don’t think that the enena avery day is good for my body and I need help as it’s been going on for all the years I’ve been on it. But until the last month I could use sena or Mira lax or smooth move and all the rest of the laxatives. But now nothing helps.


Erikamarie October 24, 2012 at 4:50 am

I personally would try a different anti anxiety medication. Depending on how it effects you, you could try xanax…? But it is stronger and sometimes makes people drowsy and feeling slowed down. My twin liked klonopin but ran out of insurance. Nkw has insurance and new doc prescribed her Buspar. She likes it a lot as it doesn’t give you the groggy feeling. So that might be an option…?? I was also thinking paxil..?? :) Hopefully this helps. ;)


Fred Spronk September 27, 2012 at 11:10 pm

are you sure that clonazepam is the culprit?
Perhaps an osteopath can help you with colon blockage.Best wishes.


sharon owen November 19, 2012 at 2:56 pm

Joyce, I hbappened tgo stumble upon your post regarding constipation. I am respondxing to you becauszed I dealt with these issues in the past when I began taking opiates. I tried a 3 session package with a colon hydrotherapist. It worked really well for me. I won’t get too graphical about the sessions, but all I can say is that I was able to get it under control. They are specialist in this feild… they can give you some additional remedies once you have a couple of these sessions done. It really did help me. It was worth the $180.00 total that I spent on it. Good luck, I know how you feel! Sharon owen, st louis mo 37 years old with fibromyalgia. 3 years now. :(


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