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Fibromyalgia & LDN

Posted , 8 users are following.

TeresaJS
TeresaJS

I've been on LDN for 2 weeks now. Started at 2,5mg increasing 0,5 a week, now at 3,5. I see some improvement. wink Anyone's taking it?

1 like, 35 replies

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  • Minnie57
    Minnie57 TeresaJS

    Posted

    What is LDN? Sorry I don't know, still very new to Fibro 😁
    • TeresaJS
      TeresaJS Minnie57

      Posted

      Hi. It stands for "Low Dose Naltrexone" and off label use of naltrexone. Are you on any other prescrition drugs for FibroM?

       

    • TeresaJS
      TeresaJS Minnie57

      Posted

       

      I had a look at your original post.  I assume you don't have a clear diagnosis yet, correct? That’s an important step: ruling out other conditions. So, I would suggest you to try to get one ASAP.

      If you do have FibroM then you’ll see how little everyone knows about it.  If you do have it then it’s important for you to realise that there are alternative treatments but it’s a journey.  You’ll have to become your own expert on the subject. Keeps us posted will you?

  • moyra94678
    moyra94678 TeresaJS

    Posted

    I have never heard of LDN.

    Explain what it is used for in Fibro...muscle pain,sleep,joints etc?

    I also don't know what you mean by,"off label".

    Can you talk through it please and a bit of your history.

    Many thanks.

    • TeresaJS
      TeresaJS moyra94678

      Posted

      Hi Moyra.  I am a FibroM patient. I am not a medicine doctor but because I am a researcher (social sciences) and a keen reader on naturopathic and alternative therapies and medicines (since my teens) I am familiar with certain topics. Naltrexone is a prescription drug to detoxify alcohol and opioid addicts. LDN (low dose naltrexone) is an alternative use of naltrexone at low dose used to boost immune function acting on endorphin receptors.  The term "Label"  for prescription drugs is the accredited purpose it is recommended for, “off label” means that the medicine is prescribed for a different purpose/dosage than the “label”. That’s the case of LDN. If you search online for LDN you’ll find hundreds of sites about it About FibroM there is also information  but I would recommend the two Stanford University School of Medicine – Pain Lab studies from 2009 and 2013. I hope I’ve answered your questions. Regards. T. 
  • Minnie57
    Minnie57 TeresaJS

    Posted

    I was going to the doctors for about 6/7 weeks after I injured my shoulder at badminton, however it was never getting better or so I thought. The original shoulder injury is better but the muscles are not, .at present after a few different medications blood tests etc  my doctor has referred me to the rheumatologist as he thinks it's Fibro.

    i have burning in my muscles sometimes and if ai overdo anything it's very painful typing is hard to and my neck muscles stiffen up if I turn me head a lot, eating can be a pain too, reading is difficult too and I like to read. Tv has become my best friend. I am off my work and have been this last 6 weeks 😔 it's scary to think I may lose my job as I might not be able to do it.

    meds I am on are sevredol (morphine sulphate) mefernemic acid, paracetamol, amnytriptyline (at bedtime) the morphine is the only one that I don't get the burning in my muscles, I keep coming off it and having to go back on it. Codeine phosphate doesn't help enough or Tramadol.

    i pace myself thought he day and try to different jobs.

    can I ask are any of you in the UK or are you all in the USA?

    I need all th help I can get. Oh can you PM people on here like on facebook?

     

    • jeanne81532
      jeanne81532 Minnie57

      Posted

      Hi Minnie, yes there are lots of us in the UK on here, and yes you can PM people by using the little grey envelope next to a post. I am an ex nurse. I reckon I've had FM for about 7-8 years but only been diagnosed since 2013. I had to give up nursing last year, and had to stop work altogether in March this year when my temp contract ended. (I was working as a ward clerk, part time) and was signed off for the last 6 weeks of my contract as I just could not manage any more. I would advise you to ask your GP for referral to a rheumatologist for diagnosis. Good luck. xx
    • TeresaJS
      TeresaJS Minnie57

      Posted

      Hi  Minnie. I am in Portugal  [biggrin] . I would push to get a diagnosis ASAP.  You have a triggering event in your myalgic syndrome that should be properly assessed. The drugs you’re taking are very bad for the stomach and in any case it would be better to have them (for lack of a better option) as injections.  Keep us posted. X.
  • andrew808
    andrew808 TeresaJS

    Posted

    improvement with what symptoms in particular?
    • TeresaJS
      TeresaJS andrew808

      Posted

      Aches and pains in general. Deeper sleep although still erratic.
  • tiswas24537
    tiswas24537 TeresaJS

    Posted

    hi teresa 

    i dont suppose your in the uk .

    iv just looked at some info on this and its something i would be willing to try as the only side effect is not being able to sleep for the first week or so .

    but wheather your gp will prescribe it seems to be confused . issue

    although available in the uk and onthe NHS .its not clear if the doctor will prescribe .i am a bit confussed . please can i have more info .

    you can buy it on line from a chemist after a £30 consultaion fee and the ok from your gp . 

    • TeresaJS
      TeresaJS tiswas24537

      Posted

      Hi Tiswa. I am not in the UK (I'm in Portugal) but as far as prescribing and buying it's exactly the same. You must have a prescription and a doctor behind it. I heard a few "NOs" namely from my Physiotherapy Dr. (" I can't take that responsibility", etc.) until I gathered a number of evidence - peer reviewed studies- and sent them to my GP. I also told him that I would be willing to sign a document declaring that I was engaging in an experimental treatment in good judgement and will, etc. He finally said “okay”.  LDN isn’t magic though. It works for many, doesn’t for others, some people have instant (!) results others take up to a year to get them.  Although it’s a prescription drug its use as LDN is considered “alternative”.  Bottom line must have a doctor on your side.  If you search on YouTube you’ll see there are some doctors in the UK working with it and also the site @ “ldnnow”.  
  • TeresaJS
    TeresaJS

    Posted

    LDN Update. Today I've gone up another 0,5mg of LDN, and I’ll  be for the forthcoming week at 4 mg a day. I can say that I do feel improvements on several levels mainly mood, pain intensity and type, etc.

    The one thing I feel less well with are my sleep patterns, but they were already quite messed up and most probably one of the causes of my FibroM onset. So this is definitely something to address.

    I also don't feel it prevented my allergy bouts that are usually dramatic at this time of the year.  On the other hand It seems to be having a positive effect on food intolerances, namely gluten. Not that I should consume it often but it’s great to be able to have cake and sandwiches every so often!  LDN is supposed to act on almost any chronic and immune disease so, I do hope my other conditions can improve as well. Nonetheless, at this point, I can honestly say I’ m feeling better! 

    I would also like to let you know as well that if this really works it’s the cheapest treatment ever. Over here in Portugal there are a few brands of it in tablets (50mg, so way too high dosage) and bottles (exactly: little 20ml/50mg bottles) which are much easier to manage as LDN .  I pull the liquid out  with an insulin syringe. In so far one  20ml bottle lasted 3 weeks. On a  standard  4,5mg  LDN dose each one should last 11 days. Since the Naltrexone generic  20 bottles box here costs € 23 (euros) - and with the local NHS discount comes to €9,5 - you see that pricewise  it’s next to nothing . At the 4,5 mg dose one box should be enough for 220 days! smile

    I would like to hear from you… XX

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