for gbean and others, about Naltrexone

Discussion in 'Fibromyalgia Main Forum' started by Goodday, Jun 21, 2003.

  1. Goodday

    Goodday New Member

    Yes, low dose naltrexone helps with chronic fatigue associated with fibromyalgia. It helps with the total body pain. It is an immune system booster. It works at night to raise endorphins. It stabalizes the body's immune system so it is not in a constant state of hyperactivity.

    It brought me good relief from morning fatigue, chronic depression, morning pain and stiffness.

    It works on pain perception.....it puts pain "on the back burner" I have not had a flare since I started this. I have been on it about 3 months.

    Nothing else has worked for me like this tiny liitle pill, one at night taken between 9 p.m. and 2 a.m.

    One pill at 3 mg or 4.5 works. More than 4.5 is useless. Less than 1.75 won't work. It must be fast-acting, not slow release.

    You cannot be on any narcotics. This is an opioid antagonistic drug. If you took morhphine or codeine with this drug you would have withdrawel symptoms. So anyone thinking about trying this needs to be free from opioid drugs for some time before starting it.

    There is a web site using all three words (lowdosenaltrexone) as one word (edited to remove URL). It doesn't say a lot about fibro, but that it is suppose to give 95% pain relief.

    This is the best pain relief I have had in twenty years. I know of about five others who is using this and are all happy with the results. I have no side effects now. On 4.5 I felt a little jittery, not used to the new energy. I am on 3 mg now and feel almost like a normal human being again. The pills are not very expensive.

    I have almost quit coming to thses sites because I feel I don't need it now except to help someone else these days.
    I can still take my thyroid meds, my blood pressure meds, my GERD meds along with the LDN.

    I will try to answer questions on this thread if anyone is interested.
    Goodday
  2. victoria

    victoria New Member

    I'm tempted to try LDN, and plan on talking to my doctor next time I see him.

    While fibro is not my major comlaint, the one time I tried Celebrex (actually for bone spur) caused me to feel GREAT for one week, even tho i only took 2 tabs. Wasn't able to continue because I started to get allergic reactions. This makes me think there is more going on in my body than is maybe obvious in terms of inflammation, etc.

    Please keep us/me posted as to your continued response to LDN>

    Thanks, Victoria
  3. Wolverine

    Wolverine Member

    Thanks for the post ive wanted this sort of feedback about LDN. :) im going to try it this week - my immune system is very out of whack and i 'get' things easily. also have an extremely allergic condition - i have a very high IgE of about 500 when below 100 is normal. I react to nearly everything! Many foods drugs chemicals pollen hair dusts grass etc etc. its awful! Also the immunologist said ive got a certain degree of immune deficiency. Hopefully this stuff helps! from your experience sounds good! can only hope. The pharmacist is getting the raw material - naltrexone hydrochloride to compound 1mg capsules - ill work up to 3mg. he says it'll be about $60 for 100 1mg caps - does this seem dear? thats australian $ - about $35 or so $US.

    Thanks, Chris
  4. Goodday

    Goodday New Member

    Please start at 1.75 mg at least because 1 mg just won't work. Anything under 1.75 is useless. Don't spend the money unless you get a decent amount of mg or you will be disappointed. Be sure to take some information to your doctor. Neurologists are not to convinced about this, but a general practioner will be more willing to prescribe it.

    Many MS patients are trying this and they are finding that the progession of the disease stops. (Usually at where the disease is at. Some get improvement in balance they have said.)

    I know the low dose Naltrexone helps fibromyalgic pain and immune diseases. I am feeling so much better these days.

    My a.m. pain is gone. I still can get some muscle spasms but my fibro lumps in the shoulders and scapula areas are not as big or as painful.

    I hope this helps you with the allergies. It certainly has helped me with overall pain.
    Good luck.
  5. Goodday

    Goodday New Member

    It sounds like you have arthritis if Celebrex helped at first. I am drug sensative too, therefore, I was so happy to get off the majority of drugs I was on.
    Low dose Naltrexone needs to be filled by an apothecary pharmacy. They grind the 10 mg into smaller doses.
    I hope you find the site and can read more about it. It is a Nation Wide Project. It is FDA approved drug, but no company is as yet making the fast-acting low doses.
    I did research for several months before I asked my doctor about it.

    Since none of my former meds worked, other than the Ultram which made me have highs and lows, and increased pain when it wore off, that I couldn't even get a meal on the table. I was getting desperate. I refused to go on morphine, codeine, or oxycontin.)

    It was awful going off the Ultram before starting LDN, but I picked a time when I had nothing much to do. I used Neurontin and Aleve for pain relief while going off the Ultram.

    Two mornings after starting LDN at 4.5 mg I felt the difference. But I also felt a little jittery and nervous.
    So the next month I had my doctor write a prescription for 3 mg and it has been working well without any side effects.
    I ran out of the med because I had to have it mailed to me. My symptoms of pain and fatigue and depression came back in two days. I was only out of it for three days. So, on the fourth morning I was feeling better.

    I wonder how I ever lived through that horrible pain and all the other symptoms now that I am getting better.!!
    This will not affect your liver, kidneys, brain, or other body organs in long-term small doses.

    I hope more people will consider this therapy.

    I am only trying to help others help themselves. I hope I don't get kicked off the board for this. Have a good day everyone.
  6. nickname

    nickname New Member

    Dear All
    I too have been prescribed LDN at 3mg, and have been looking at it for over a month trying to get up the courage to take it - just typing this makes me feel so silly. I have severe m.e., not fibro, with an imbalance of the TH1/TH2, so it is to bring the TH1 up. My biggest worry is that I take 7.5mg zolpidem (ambien) and 20mg trimipramine (surmontil) for sleep every night, and this is my magic combination to get deep stage 4 sleep, no nightmares, weird dreams or anything - just pure blessed sleep.

    The worry is adding in the LDN with these, even though I'd have perhaps a couple of hours in between taking. I would start at half a capsule just to get used to it. Am also on Armour thyroid, but I don't worry about this, and I know I would'nt worry if the LDN could be taken during the day - it's just the night thing with my sleep and other meds.
    Thoughts anyone -
    With best wishes
    nickname
    [This Message was Edited on 06/22/2003]
  7. Goodday

    Goodday New Member

    is a tricyclic anti-depressant. I have read that anti-depressants are a major cause in stopping your natural endorphins...but I don't know how long that takes to develop. In my case I didn't feel the need to take my trazodone with my sleeping pill (Restoril) when I started LDN, even at 4.5 mg. I still take the Restoril at night with the LDN. I sleep so much better and feel refreshed in the morning. I didn't take a weaning time off when I quit the trazodone.
    It is ok to take the Ambiem and the LDN. I would start at the 3 mg. If you don't feel comfortable just stopping the anti-depressant try weaning off it for a week or so, then start the LDN. Anyway, I am no doctor. But you might want to get advice from your prescribing doctor. I think the only real problem you might encounter is that if you take all three at bedtime you might not feel any different. I cannot know how it would be for you. But this is my best guess. And my experience with it. Make a choice and try it??? Bless you all. Goodday all.
  8. nickname

    nickname New Member

    All of your posts on LDN have been very informative - thank u heaps. Took half dose of the ldn last night to start my body getting used to it with the trimipramine, and I was so grossly tired, I thought I could do without the zolpidem, but ended up taking part of that too. Was going to quit the trimip tonight, but have just taken half to see how that goes, and if ok will just keep reducing. I will have to build up to 3mg ldn over a couple of weeks I think, - can't wait to see if any improvements - I have m.e., not fibro, and know there is not as great an improvement.

    Thanks once again - it's like a miracle when you find something that gives u a better quality of life after so long - wish you continued health - with best wishes - nickname
  9. Goodday

    Goodday New Member

    I must be dense today, but I cannot figure out if you are going to continue the LDN? How is your ME pain different than the kind we have with fibromyalgia? If LDN stops PAIN PERCEPTION wouldn't it help with your type of pain? I would like to know more. For chronic fatigue it helps by 50% or so the Web site states. If you got 30% pain relief that would be a plus! Keep in touch.....maybe others will learn from us. Gentle feather hugs to all. Goodday
  10. klutzo

    klutzo New Member

    I am very interested in this, as you know from my other post on this, and thanks again for answering it, but I do have a concern.
    I know from past experience with Restoril, that if I am allowed to take it at bedtime, all by itself it will clear up 90% of my symptoms.
    However, like most people (evidently not you, you lucky dog!), I quickly develop a tolerance, and within 2 weeks the 15 mg. dose is not enough. In another 2 weeks, the 30 mg. dose is not enough. That and it's high addiction potential, make it impossible to get much from my doctors anyway, so I save it for trips where I must be around normal people and try to behave like I'm normal (fat chance of that, but I try).
    Have you ever taken Restoril by itself, or did you always take them together? I am wondering if it is really the Naltrexone or the Restoril that is helping you, since it does so much for me all by itself.
    Klutzo
  11. Goodday

    Goodday New Member

    I have been suffering with the Fibro for 20 years, dxed in 1988, again in 1994. Started on Restoril in 1994 but when I first tried it, I too, seemed to need "just a little more" and that is when I thought I was addicted so I quit for about a year. Needless to say I had three nights in which I didn't sleep at all and hurt like heck the next day and forever after. Then I tried just Trazodone for three months. I slept only four hours a night on it. Then my doc put me on both at night. Well, that helped but I was so drugged in the morning that I had to take Ultram to get up and moving and all day long I took more Ultram and or Baclofen and Norflex, and Neurontin. I spent the next three years on all of those drugs. When I came upon the LDN I said to my doctor, I am tired of taking all these pills. There has to be something better out there.

    I finally started the Naltrexone but went through 2 1/2 weeks of night sweats because I quit the Trazodone and the Ultram BEFORE starting LDN.

    Now I am just on the Restoril 15 mg and have been for three years on and off. I tried Ambiem and a newer sleeping pill but they didn't work. My doctor said that if I can get by on the 15 mg without the need to increase he was happy to keep prescribing it.

    I take the Restoril about 30 minutes before bedtime. It works faster on an empty stomach. I really don't think I need it physically maybe it is just a habit now. In a way, I am afraid to quit the 15 mg. But I have never gone to 30 mg. or two pills at night. I simply won't let myself. It does get rid of pain, but if you stay up long enough after taking it, it does not work. So, I have made a routine out of my bedtime ritual.....Now I have added the Naltrexone and I take both at the same time. I don't wake up with the "hangover feeling." I feel refreshed like I really had a good night of sleep.

    I have thinking about stopping the sleeping pill or trying another kind. But my doc said, "If it works let's not mess with it." I really did have a period of time when I first started Restoril that I might want more and more. That part was scary!! But through the years I made do with what I had. Eventually I will try just the Naltrexone at night. I am now healing up from my latest battery of bruises from my ankle/foot/and falling down from my crutches. My fibro-flare was minimumal!! Thanks to Naltrexone, I believe. I cannot tell how others would get by taking long term Restoril, since we are all so different in our reactions to drugs. It is your body and your mind....
  12. nickname

    nickname New Member

    ....yes, I am going to continue with ldn but at only half dose and work up to 3mg. Tell me though, did you experience extreme tiredness about an hour after taking it, because I did - mega huge? Was not sure if this was the ldn itself, or the ldn enhancing the effects of trimipramine which does make me feel sleepy.


    I'll have to do the fibro/m.e. pain answer tomorrow - got to go to bed.

    Best wishes
    nickname

  13. Goodday

    Goodday New Member

    No, I did not have increased tiredness with LDN and any other medication. I take all my evening meds about 30 minutes before I go to bed. I don't know why you might be feeling extra sleepy.........??
  14. beckster

    beckster New Member

    know HOW the LDN helps boost the immune system?

    As far as restoril goes, we are all different. About l3 years ago (without being treated for pain or sleep disorder the previous 7 years) my doc started me on this, 30 mg. After some years it got down to l5 mg. So for roughly l3 years (and forever, I guess) I have been on l5 mg. and never need more. In fact, sometimes, if I am not in a bad spell (with a virus) or flare, if I am reading in the evening or watching TV I just get tired and fall asleep with no pain or sleep meds at all.Someetimes I don't even know I've fallen asleep until I wake in the mornning. I don't have sweats or withdrawl or anything. This only started to happen the last couople of years ( I mean I had forgotten that feeling of actually being tired, sweetly, deliciously, drowsily tired), after being sick for 20 years! I guess something is just healing a little bit in my brain or nervous system.

    Anyway, found your post very interesting. Thank--Beckster
    [This Message was Edited on 06/28/2003]
  15. nickname

    nickname New Member

    The difference between m.e. and fibro muscle pain, as I understand it, is this, without getting too technical:

    In fibro, you have continual, widespread aching and stiffness in the muscles which is accompanied by fatigue, sleep disturbance, and a whole lot of other symptoms. One diagnostic feature is the presence of well defined tender spots in identified areas. The muscles are ropey and not smoothe.

    In m.e., the muscle pain (myalgia) and fatigue is excercise induced. If excercise induced muscle fatigue is not one of your symptoms, then the diagnosis is not m.e. The load bearing muscles of the legs are nearly always affected, obviously because this is how we stand and walk. Arms are
    probably the next most affected, again for obvious reasons, but every and any muscle can affected - heart, eyes, intercostal lung etc. It affects us all differently in different muscle groups, and with differing severity. Maybe because of personal/hereditary weaknesses in that area.

    Excercise is a complete mis-nomer, because in m.e., excercise means a short walk, lifting things down from a shelf, reading a book, just breathing, etc - not going to the gym, swimming etc. Depending on the severity of m.e. one can either say walk a few yards before severe exhaustion and pain sets in, like me, or maybe a couple of hundred yards before the same thing happens.

    In m.e., there can be additional joint pain (arthralgia) but I think this is true of fibro too. At any rate, both have overlap symptoms and of course, pain is a personal perception.

    In m.e., the fatigue and pain can either happen immediately, or in the days following excercise, taking a walk etc. In fibro, you have it all the time, but gentle stretching and excercise can help greatly. Gentle stretching and mild excercise can help in those 'recovered' from m.e., not whilst affected, and certainly not if severely affected.

    I have severe m.e., and am bedbound for most of the time - just walking 10 yards and back from the bathroom, is very exhausting, and sitting here typing, plus using brain power, also causes exhaustion. My sister has fibro but continually moves around - does not stop, even at night in bed, she continually tosses and turns - just because that way, she does not seize up. In the mornings, she cannot get out of the bed because she is so stiff. She has ropey muscles and the tender spots, but I don't. We have lot of other common symptoms though.

    Any help?

    I've been given the LDN to bring the TH1 side of the immune system up, which is on the low side following tests. The TH1 fights off pathogens, so theoretically, this should help with existing viruses, bacteria etc. Endorphins are the hormones centrally involved in supporting and regulating the immune system. Can't wait for something to happen!

    You know I mentioned that extreme tiredness after taking the LDN? I think it was an exacerbation of the effect of trimipramine, because I only took half my usual dose of trimip last night, and I got the same effect, only much less. I also slept so deeply again, and awoke with a slightly thick head again, which I don't normally do just on the trimip and zolpidem.

    Best wishes
    nickname


    [This Message was Edited on 06/29/2003]
  16. Goodday

    Goodday New Member

    Hi, On several pages back I tried to explain a little on how LND works. It is under the post LDN-is this one for pain?

    Nickname, When you describe the fatigue and other problems with the muscles it sounds a lot like what I used to experience. Just walking around made me so tired. Early this spring I racked leaves before I was on Naltrexone. I went into a bad fibro-flare and just to get leaves into a bag was exhausting. Cooking a meal was exhausting. Sitting at the computer for more than twenty minutes was torture. Anyway, you get the drift.
    It seems that chronic fatigue, myalgic encephalomyelitis, (ME?)and fibromyalgia are hard to separate....the symptoms over-lap.

    Someone wondered if low dose Naltrexone might help with allergies? If LDN gets the immune system working correctly as it states on the web site, then I think in time it should. Lately I have had some sinus-allergy problems with the pollen so high around here that I have some symptoms. I use Flonase at night still. I cannot say that LDN has put a stop to my sinus problems yet, but I suspect that my house has some mold in the ceiling and insulation as we had a leak and it just stopped raining a few days ago. I am allergic to molds.

    The LDN has certainly helped my fatigue. I don't get that awful sydrome of exhaustion when I do things like I used to get, but then I have had to take it slower lately because of time-out to heal my foot and ankle. It is getting better faster everyday now and I don't need the crutches. My doctor thought I might be having M-Sympathetic Dystrophy from the injury. It is healing fast, now, thank goodness.

    I guess I have wore out the subject by now. I hope I have answered all of the questions. Those of you who are trying this please keep us posted. We are all looking for something that gives us some help. Thanks everyone for your interest and willingness to try this. Mostly it is for pain relief and fatigue our two biggest problems with fibromyalgia. Goodday all.
  17. lea

    lea Member

    Maybe someone can explain how to find that web site, please.
    thank you in advance
    best,
    lea
  18. beckster

    beckster New Member

    just go to lowdosenaltrexone and the usual dot whatever
    and there it is. Did you get it? Let me know. Beckster
  19. Goodday

    Goodday New Member

    Hi, go to what Beckster said and use a dot.org.....it is under immune system disorders. In the 1980's it was used for heroine addiction in large doses. Now in small doses it is used for pain control. It blocks opioid receptors/opioid receptors that our brain and andrenal glands produce, beta-endorphin and metenkephlin. Many body tissues have receptors for endorphins and enkephalins and in almost every cell in the body. It stimulates the immune system and promotes natural killer T-Cells. This is for diseases that are partially or largly triggered by a deficiency of endorphins including some cancers and autoimmune disorders. It restores the body's normal production of endorphins (natural pain relieving hormones)
    This is the major theraputic action of low dose naltrexone. It is suppose to help rheumatic arthritis, lung cancer, MS, Parkinson's, many autoimmune diseases such as diabetes, fibromyalgia--the site gives only one paragraph about fibromyalgia. Almost sounds too good to be true, but I am experiencing good pain relief and much more energy. That is worth a lot to me since I was sooooo sick and down with the fibro symptoms before starting this one little pill. Many people with MS are finding some help with it too. Have a nice day all.
  20. lea

    lea Member

    Thank you both so much. I appreciate your help.
    best,
    lea