Gradual onset CFS

Discussion in 'Fibromyalgia Main Forum' started by JoWynn, Apr 23, 2008.

  1. JoWynn

    JoWynn New Member

    I'd like to hear from anyone who has had gradual onset CFS and has tried LDN. Thanks.

  2. JoWynn

    JoWynn New Member

    Low Dose Naltrexone--used to treat various neurological symptoms, very successful with MS, and now being tried by some people with CFS, with good results. No cure, but symptomatic relief.

  3. Rosiebud

    Rosiebud New Member

    I had very gradual onset, over 10 years then it hit me like a sledgehammer.

    Haven't tried LDN though.

  4. DeborahLynn

    DeborahLynn Member

    over five years, but I haven't tried LDN. Please let us know if you have success with it!


  5. simonedb

    simonedb Member

    hey I am trying to find people with cfs/fm to share info about with this. I started about 10 days ago and can feel the potential of it but started to get some killer headaches and other pain so am going to back off, had worked upto 3mg, I am thinking that I either need to be on a very low dose like 1m or less for awhile because of being mcs or maybe having been on analgesics for 5 years before this is causing an extended w/d reaction as I didnt wait 2 weeks postpain meds like some are advised before i started LDN.
    anyway, even though there is a lot of info out there on LDN on net I am not finding a group of cfs/fm per se to really share info with.
  6. JoWynn

    JoWynn New Member

    I have not tried LDN, but I may be able to put you in touch with someone who is using it. She, however, had viral onset.


  7. simonedb

    simonedb Member

    I may have had viral influence, had recurring mono/enterovirus then got better for 10 yrs til a surgery and neck injury, then was hosed from that and never the same. but i dont get flulike stuff anymore for years, some thinking is tht you won't after the initial virus.

    but yea, I want to find other people with cfs/fm doing LDN. I think I could be having reaction to having been on analgesics and not waiting two weeks after stopping them before LDN or could be allergic to filler. I could feel the power of LDN too but the headaches have gotten too distracting so need to cut back and approach more slowly.
  8. JoWynn

    JoWynn New Member

    I've contacted my friend for permission.
  9. 013101

    013101 New Member

    Hello. I'm the person JoWynn referred to as taking LDN. I can tell from your post that you've also posted at the Forum run by Brenda. I've posted to you a couple times there under my name, Toni. Unfortunately, I don't have anything more to add to the suggestions I gave to you there. I do hope you're doing better.

    My best,
  10. simonedb

    simonedb Member

    just finally reading my mail today
    things are getting bettr, I think I am figuring it out, needed to back off and come back at it with lower dose.