So excited 🙆

[lindabre]

Hi all so excited.I am travelling to see a doctor tomorrow who lives a 3 hour drive from where i live.Reason for this is that he is willing to treat me with Low Dose Naltroxene.After 23 years of dealing with this nightmare i am looking forward to pain relief.Hopefully this will not be another false dawn.Watch this space.☺linda

[Dimplez18]

Hope it goes well lindabre😊

[Crusee]

Have a safe journey and I hope that it will provide the relief you are looking for.

Take care and fingers crossed for you.

Crusee

XX

[lindabre in reply to Crusee]

Thanks for your kind thoughts.Cant stop smiling as today I saw a doctor who is also a gentleman.Will start 3 weeks from now as I have to wean off tramadol.Will keep everyone up to date .☺

[Crusee in reply to lindabre]

Good luck.

Finding a doc like that must have been like landing the jackpot-- hang on to him!!

Hope all goes well.

Crusee

XX

[VonnyM]

I really hope it works. I don't understand why the Drs won't try it on us. Good luck

[peck]

I wish you the best.I had to goggle the med because I'm not familiar with it. If it helps your pain could be the answer for you.Best wishes. Peck.🐤

[lindabre in reply to peck]

This drug looks amazing so nothing to lose, have to keep trying as life is too precious to accept defeat.

[peck in reply to lindabre]

lindabre , I have to say I agree.Please let us know how you do.Good luck.Peck🐤

[TheAuthor]

Hi lindabre

I want to genuinely and sincerely wish you all the best of luck with this, and please take care of yourself.

All my hopes and dreams for you

Ken

[lindabre in reply to TheAuthor]

Thanks for your kind thoughts.I hope my post is the start of change for sufferers on here.The site has been a massive support for me so how great would it be if my journey helped others. ☺

[TheAuthor in reply to lindabre]

[Ouch_123]

Hope all went well.. 👍

[Lesley_ann]

Fingers crossed Linda x

[Janet28]

Hmmm that sounds interesting Lindabre, never heard of it before so had a little read up. Definitely keep us updated.

Good Luck, I hope it works ☺

Luv Jan x

[dianaplummer]

Once again I posted a message, pressed submit and it disappeared. I'm not a computer newbie BTW.

Anyway Linda, I also will be starting my LDN next week, so I am excited too! Another user on this forum and myself have written and posted links to information and research on LDN, but no one seemed very interested. I have watched this forum for a year, and I have never seen anyone on it who gets any relief from the hideous cocktail of various prescribed opioids, anti- depressants an anti convulsants. Fibromyalgia is a chronic (long term) condition. Giving us drugs that are time limited, addicting and, ultimately loose all usefulness, is crazy.

When I was first diagnosed with Fibro this forum and the suffering of all the people who were willing to put up with such poor care made me incredibly depressed. I made a list of the drugs everyone was on. If that was my future, I'd rather have died.

I was offered all the same drugs by my GP, a very nice lady I trusted. In the end, she offered me Co-codamol. Although I used this drug for 5 months, and never more than 4-6 a day, I was shocked when I tried to "withdraw" from it. I only used that one drug, no other. By then I noticed how soon I had developed a tolerance to it and was "needing" more to try and dull the pain.

My withdrawal was severe - extreme diarrhoea, vomiting, fever and shakes for two whole days! I had to have the doctor to see me as I was really afraid. He diagnosed withdrawal symptoms and made me take two more Co-codamol. Instantly the effect stopped like magic. He suggested I had to withdraw slowly. He said my reaction was "severe" and "unusual". Until I looked online and found hundreds of people going through their own withdrawal hell.

No one had warned me that it was dangerous to stop this drug suddenly; I had specifically told my GP that I didn't want any zombie drugs I'd have to be weaned off. She told me that Co-codamol was a very weak opioid and that I could stop anytime. God help me if I had been playing musical drugs like I see some people on here doing.

Anyway, I have always been a very energetic and detirmined person (that's what depressed me the most about Fibromyalgia - my zero energy suddenly) so I decided that my health was only my responsibility. I started to research. I know how to research sensibly, thankfully. I soon came across people like myself who were not happy with the "one size fits all" attitude of the NHS.

I have posted on this forum about my research, with legitimate links to medical trials and doctors lectures. Like Linda and one other former member of HealthUnlocked, we have found something that has worked for millions all over the world.

I am about to start taking LDN next week. It has taken me three weeks to come off Co-codamol slowly.

LDN is a drug that was patented in the 60 s, it is cheap (out of patent) and is used in tiny doses (.5mg). It is non addicting and has no side effects. You can buy it, with a doctor's prescription. Any pharmacy will make it. The problem is that, because the NHS doctors don't know about it, they are not prepared to prescribe it. I tried to show my GP the research I had done (Printouts, research etc) but she refused to help me. She was however prepared to give me endless, dangerous, addicting and expensive opioids.

I get my LDN privately, consulting a private clinic. Apparently there are doctors with open minds in the UK who do prescribe on the NHS, but not near me.

Anyway, I don't want to "preach" - I was going to stop coming on this forum because it makes me too sad. But I saw your post Linda and wanted to wish you good luck. Think of me Monday next week.

Good luck.

[lindabre in reply to dianaplummer]

Hi Diane. Just back from the amazing kind doctor I saw today.It was an experience that has restored my faith in the medical world.He LISTENED to me and organised blood tests tests (without prompting) and was interested in helping me.I have issues with my thyroid,b12, vitamin d in conjunction with fibromyalgia. He asked how exhausted I was feeling and as I told him it's as bad as can be ,he wanted to do thyroid check.I showed him recent private tests and he immediately suggested I take T3 only to get me back on track.I know from being on here that this is amazing as I only went to see him regarding fibromyalgia.

I will have to wait 3 weeks to start LDN as I too have to wean off a pain killer:tramadol.will keep in touch regarding amazing results I hope to experience.☺

[dianaplummer in reply to lindabre]

I'm so pleased for you Linda! I'm starting next week, it's taken me 3 weeks to come off Co-codamol. Don't know about Tramadol but, although I have a bit more pain today (no Co-codamol for the last 4 days) I feel MUCH better in my head - I didn't realise how the Co-codamol increased any "fog" in my brain. Also, because I'm starting to take control myself, the pain isn't bad or frightening - like it was when it first started! If you'd like to contact me, my email is [e-mail]. I found another person on this forum (she's left since, found it too depressing) and we are in contact. She started LDN in February and is doing really well.

Good Luck, thinking about you,

X Diana

[Bertiedette]

Please let us know how you got on . 😀😀😀😀😀

[lindabre in reply to Bertiedette]

Will do.It will work and finally after 23 years my faith in doctors has returned.☺☺☺

[sweetthing]

I too have heard of LDN and would love to know how you cope with it.I am fed up with losing nearly half my days sleeping.I get so so tired after lunch that I sleep for a good 3 or 4 hours.sometimes sleeping all night too. Some nights I only have a couple of hours and have to manage but come lunch time I start to wilt.Its not the kind of tiredness that is just sleepy tired I feel like you do when you have a general anaesthetic and just go under.Its no use trying to fight it the urge to sleep is just too strong.

Lately I've been wondering weather this is linked to the 300mg twice daily Pregabalin I take for pain relief. Is it the fibro making me this tired or the medication,or a combination of the two. If LDN works for pain relief without side effects I would gladly stop all my Pregabalin and tramadol and try and have some sort of life. At the moment I just feel like some days I feel as if I'm drugged and dragging myself through the day.

Please let us know how you cope with the new treatment, I so hope it works for you .take care of yourself another fibro friend

[lindabre in reply to sweetthing]

I am more than happy to keep you posted. I Will scream from the rooftops when this works.looking forward to not napping and living life again!☺

[bwaite]

How did u make out? Any difference yet? Please tell

[lindabre in reply to bwaite]

Won't know for a few weeks as I have to wean off tramadol before I can start them.Will let you know.☺

[bwaite]

Please let us know how you made out

[Eggcustard]

Sounds exciting, please let us know how you get on. I know we aren't allowed to mention names but which area of the country is the fab doctor in please?? Good luck xx

[lindabre in reply to Eggcustard]

Check on ldnscience.org they have a list of doctors who prescribe in UK ,one in London and one in gravesend.I live in Ireland and doctor I saw lives in Dublin.Hope that helps.