I need to share with other FM/CFS people on LDN drug,Please!!

Discussion in 'Fibromyalgia Main Forum' started by Goodday, Apr 13, 2003.

  1. Goodday

    Goodday New Member

    Hello anyone: I have started on low dose naltrexone, 4.5 mg. I have been feeling much better and so quickly too. My problem now is that I think 4.5 is too much to start with. I think 2.5 to 3 mg might be better to start with because I feel a bit shakey more internal than external. If I get up and move around a lot that improves. (What is this, new found energy I am not used to having??) Here are some immediate things that have improved on the 9 days of using this drug:
    1. much less depression
    2. much less fatigue
    3. I don't have the feeling that my body weighs 10 tons
    4. I actually smile and can see some humor everyday.
    5. I do not reach for a pain pill first thing in a.m.

    I have fibromyalgia compounded by spinal spurs, degenerative disc disease, 5 bulging discs, no thyroid (forever hypothyroidism), GERD, Raynaud's syndrome and maybe hypoglycemia. I do not have rheumatoid arthritis, osteoporosis etc.
    I think this is a possible helpful therapy for fibro and/or CFS.

    I would like to talk to anyone who is on this. I had a panic attack while driving yesterday and wonder if this caused it. It could have been the coke I drank on an empty stomach.....?? Any answer is welcome and thanks.
  2. VickyB

    VickyB New Member

    I am so happy to hear that you have tried this medication!! I was afraid to ask my doctor for it without finding someone who had tried it. What kind of doctor prescribed the medicine for you??
    Caffiene causes me to have panic attacks even though I could use the energy.
    Please keep me informed on your progress with this medicine!!
  3. Goodday

    Goodday New Member

    Hello Vicky--I forgot to mention that I used coffee and anything with caffine as a booster for energy for years because of FM, no energy. Anyway I had a panic attack yesterday. I am wondering about two things: my thyroid meds not being right, I may need Cytomel (sp?) and a drop in blood sugar from cola, and coffee. Such a bad habit from all the years of trying to obtain energy--even the nervous kind. I am finding if I "get active" when I feel hyper on LDN that it helps a lot, even just doing dishes or taking a walk. This is only day nine on it. I really need to check into the thyroid thing, I just read some former posts about T3 and T4 and TSH readings being normal or abnormal and how it effects fibromyalgia, and CFS. Anyway, if I could be less hyper--I think I could be really satisfied with the help LDN is giving me. Honest!! It seems with FM there is so much that needs to be looked into for each person. I sure wish I could hear of others on this...It isn't a cure but being able to do everyday things without extreme exhaustion is a plus. I can't seem to get my MD to think seriously about sending me to an endocrinologist...because my TSH levels are within normal limits. T3 and T4 never tested. I have no thyroid and that concerns me with the LDN therapy. I hear the first week is bad for sleeplessness and I wonder if the sleeping pill interfears...but I would get no sleep at all without it right now. I am amazed at how I don't want the Ultram for pain relief especially first thing in the morning!!
    Someone had to be the guinia pig...Guess I am it. Anyone else on this? Need to compare "notes!" lol.
  4. Goodday

    Goodday New Member

    I printed 14 pages from web site, highlighted anything that pertained to fibro, took it to my regular general practioner and left it for him to read. Then I made an appointment and we discussed all my past therapies and drugs used so far. He had just tried a pt. on guai--and it was too painful for that person so we decided to try the LDN on me. One needs the fast-acting kind and it does come in capsules but you need an apothecary pharmacy to fill it. Mine is mailed from a major city from the other side of the state.
    Hope this helps. Goodday all.