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Linda Elsegood: I'd like to introduce Alic from England who has fibromyalgia. Welcome. Could you tell me when you were diagnosed with fibromyalgia?
Alic: I was diagnosed in 2001 um, but obviously, I'd had a lot of symptoms prior to that.
Linda Elsegood: And what were your symptoms a gradually increase in pain?
Alic: I'd had some of the other symptoms that go with fibromyalgia-like bad headaches and I'd had brain fog, and fatigue for a really long time.
The pain kind of sneaked up on me and I basically got to the point where I couldn't actually put one foot in front of the other one, and I realised that not only did I have a bad back that I'd had for years I actually hurt absolutely everywhere and that's when I went to the doctor and said, "I'm not sure that this is really okay."
Linda Elsegood: How old were you when you were diagnosed?
Alic: I was 36 when I was diagnosed but it took two years from going to the doctor and saying, I really am not okay to get a diagnosis from a consultant rheumatologist.
Linda Elsegood: So how did you hear about LDN?
Alic: Well, I started to look when my condition started to deteriorate.
It's kind of been up and down. It used to be much, much worse than it is now, but It started going downhill again about two years ago. I tried to carry on working and doing everything. And then about 12 months ago, it was really getting to an acute phase again. And every so often I did searches on anything new under the sun, and I'd pretty much given up that there was anything.
And then, because it was getting so bad, I was seriously considering having to give up work again. And so I went online to have a look to see If there was anything new. And I came across a YouTube lecture from Stanford talking about fibromyalgia. Right at the end of it he mentioned the pilot LDN study. So that was how I first had even heard of it. I'd never heard of it before then. And because I heard of it, then I wanted to check it out and what my options were for having it because I have literally tried everything else.
Linda Elsegood: So how did you manage to get a prescription for LDN?
Alic: Finding out about LDN was simple; getting it was not simple. Um, I actually did all the research, downloaded your information pack and took it to my GP. I said, "Look, this is something that I haven't tried yet. I tried everything that everybody has suggested with the most horrendous side effects."
I'm really, really sensitive to medication. Um, so everything I've ever tried medication wise has had quite horrendous side effects So although I've persevered with stuff I tried; in the end, I have to come off pretty much everything.
The only thing that I've ever done that's ever made any significant difference is actually meditation. Um, which obviously doesn't really have any side effects that are negative. So I went to my GP, and I said, "Look, LDN, can I try it? I have tried everything else." "Um," she said, "I've never heard of it. Um, I bet it's horribly expensive."
And I said, "I don't believe it is; I believe it's about 20 pounds a month." And she said, "Pretty much the same as an average antidepressant." Um, I gave her the information pack. She said, "I can't prescribe this, but I can take it back to the practice, and we can have the case discussion. I will get back to you."
Two weeks later, I had heard nothing. I went back to see my GP. She went, "Oh, I've been meaning to get in touch. No way. You can't have it. We won't prescribe it." And I said to her, "Can you tell me why not?" And she said, "Yes, because we don't have any drug addicts at the surgery, so we're not used to the medication."
And I said, "I'm sorry?" She said You’re just asking me for opium." And I went, "No, I'm not. It's exactly the opposite of an opiate." So she said, "Well, you can't have it, and it's no good seeing any of the other doctors, 'cause we've just had a case discussion and you're not getting it from us." So I kind of looked at her a little bit, um, gobsmacked and said, "Where do I go from here?"
And she said, "I suggest you buy it off the internet." And I went, "Isn't that a little bit dodgy?" And she said, "Oh yes, you would have to be ever so careful buying drugs off the internet. I'm not recommending it." So I said, "Could I see somebody at the pain clinic, could I get a referral? So she said, "That's a really good idea."
She started to write on her computer. Then she said, "Oh, can I just say, if you see a consultant, there is absolutely no way on earth we're going to prescribe it to you even if they say it would be a good idea." So, I
thought, "Well I think I've just had kind of a door slammed in my face and a brick wall built behind it."
So I left, and I was actually really distressed, and i wasn't distressed because she wouldn't give it to me. If she'd given me a rationale for why she wouldn't give it to me I wouldn't have had a problem, but basically she was saying, "I don't know anything about it, so you can't have it." And I live quite rurally and there is a sense of 'how can the patient possibly know anything?' um, even though I'm a consultant psychologist and obviously got half a brain and I'm very research focused um, I had, I had even printed off, Dr McKay's and, um, Dr Younger's study and give it to the doctor to read and she said, "There's only so much I want to read. I'm not interested in that." So, she didn't even want to find out the LDN for me
And so I got in touch with you guys via your website, um, and said. "Is there another doctor who you know in my location?" because people had said to me, "Why don't you change GP?" But you have to register with a GP before you get to ask them if they even believe in your condition. Which is another problem I have with my GP because my GP said to me, "Can you even tell me what fibromyalgia is?
Yeah, not very positive. So, um, you guys put me onto the Prescribe for me website. Um, so I went on back, filled in all the details, filled in like a, a health questionnaire. And, um, and then a doctor rang me, asked me lots and lots of questions about all my symptoms, about everything I'd ever tried. And she did say to me, "Gosh, I think you're the first person I've ever spoken to that has literally tried everything that is even possible; apart from LDN." She said that she had concerns about my having LDN because of my sensitivity to medication. I mean, I go into anaphylactic shock and stuff like that, so I'm pretty sensitive. So what she suggested was that she would prescribe it. She did think that I was a good candidate because I had tried everything else.
Um, she suggested that a good way for me to do it was to take half a milligram at night for a week. If that was okay, then to put it up to a milligram for a week and so gradually increase the dose. And then she said if I had started to get to a point where my symptoms deteriorated again, to move back down half a milligram per week until I found effectively what was going to be the best dose for me, assuming that I had any benefit from it.
Um, and she rang me again, um, after a month, and again, I think maybe after a month, another month to see how it was going and to make sure that it was okay for my system and so on and so forth. And so now I fill in my repeat prescription request online and the, uh, the chemist send me the medication direct, um, recorded delivery.
Linda Elsegood: So how did you feel when you first started? Did you have any problems even though it was such a low dose?
Alic: With the LDN? Yeah. Instantly, um, I had a reaction, which I kinda took to be quite positive. I'd read about, um, the dreaming as the only side effect that people seemed to be complaining of. And sure enough, the second night I took it, even on half a milligram, I had these amazing dreams, not scary at all, but just the detail in them was quite phenomenal and quite interesting. And being a psychologist, obviously, I was even more interested. Yes.
So almost immediately, I think the second night I started, even though it was such a tiny dose, I started to have these really detailed dreams.
Not scary, nothing like that, but just tiny, tiny detail that I could see really vividly. That lasted for about four or five days, and then they stopped. And I took that to be a really positive sign because I thought, my God, if I'm reacting to only half a milligram, um, this might have some benefit.
And then a couple of weeks later when I must've been on about two milligrams by then. And so it would have been like the fourth week. Um, yeah. I started to have the dreams again, but maybe two or three nights, and since then I haven't had any startling dreams, so I didn't have any other negative impact. All the stuff that I take, I didn't have dry mouth. I didn't have brain fog. In fact, if anything, it cleared my mind pretty quickly. Once I got to about, um, two milligrams I started to really notice improvement because my condition was really horrible at that point. Um, so I started to see improvement.
Linda Elsegood: So how long have you been on the LDN?
Alic: Started to take it at the end of October but obviously increasing it only half a milligram a week it took me a while to get up. When I got up to four milligrams, my symptoms actually started to deteriorate. Um, so I came back down as she'd suggested, and then went slowly back up to four and a half, at four and a half milligrams is too much.
My, um, my pain increases on, it's, um, it's not great. So I actually vary my dose ever so slightly. I'm back down at three milligrams at the minute. I was on three and a half for quite a long time. Um, but I had some additional treatment at the hospital that I kind of feel that I was - not coerced, but, um, persuaded.
I was persuaded by the pain clinic to try a new treatment. Um, which I did. I carried on taking the LDN throughout which they said wouldn't be a problem because obviously it's in your system for such a short time. Um, that treatment, it sensitized me horribly; made my symptoms much worse. I was really poorly for the three weeks that I was having treatment.
Um, so since then I've gone back down to three milligrams, and that's what I'm taking and it's probably taken me five or six weeks to recover from the treatment. And I, um, I started walking last week. I've not been able to walk any distance, but for quite some time. And eight out of the last ten days, I've been able to go for a walk.
I only started six minutes away from the house and then six minutes back and I'm gradually increasing, but I haven't been able to do that for a year.
Linda Elsegood: As a summary what would you say about LDN?
Alic: I think for me, the most important thing is not my movement and my reduction in pain. The most important thing for me is the clarity that I now have back in my head.
Um, obviously I'm a consultant, and my work is quite full-on. I work with people with severe and enduring mental health problems. I work with people who are psychotic, so I have to kind of have my wits about me. Um, and I'm involved in, clinical governance in hospitals and things. So I need to be able to think, and having my head back is the absolute best thing.
And I would say the clarity in my head is probably improved 70% of my ability to think, to concentrate, not to lose my thread in conversations, to write reports, all of those things are fantastic. My pain has probably reduced 60% and my fatigue levels is another important thing for me because obviously you can't get up and go to work if you can't get out of bed 'cause you're so tired.
And my, my fatigue I'd say was 80% improved. It's, absolutely phenomenal. It works for me.
Linda Elsegood: It's fantastic, isn't it?
Alic: Almost is unbelievable. If I wasn't experiencing it, if I was looking for about a 10 20% improvement in my symptoms when I started taking this, just so that I could get on with my life...My husband, my friends, my colleagues cannot believe. But it's like I'm back, I'm back from wherever I've been for the last two years.
Linda Elsegood: Does your GP notice any difference? Have you been back?
Alic: My GP doesn't speak to me. I guess. I had to go with this throat, cause I've had it for five weeks, this sore throat and she just deals with whatever I have to say. And she, she doesn't mention it.
Linda Elsegood: What would you say to other people with fibromyalgia who are now just beginning to look into it?
Alic: I would say give it a shot, but because a lot of the people that I know with fibromyalgia, which isn't a huge amount, but I have joined a support group, Um, so my advice would be not to go in at four and a half milligrams. My advice would be to creep it up like I did and see what suits you. But absolutely to give it a shot because nothing else I have tried helped, It gives me really good days, and I have to say, I am not taking any painkillers, and everyone is amazed.
Linda Elsegood: A lot of people I found with fibromyalgia, ended up taking a cocktail of drugs.
Alic: Absolutely.
Linda Elsegood: And then each drug carries certain possible side effects, it's like building up this pyramid.
Alic: Right.
Linda Elsegood: And you're bound to get one of them, aren't you? You know,
Alic: They are just taking anything that the doctor will give them in the hope that something will relieve, and actually not very much is. But the LDN is so cheap, it doesn't have the side effects, that it must be worth trying.
Linda Elsegood: Thank you very much for sharing your story with us. I mean, it's so inspirational, and you've done remarkably well since October.
It's such a short period of time that you've taken it. You know, I'd be really interested in probably doing a follow-up with you. Let's say six months time to see how you have
Alic: No problem. It's like I have my life back. You are more than welcome to get back to me.
Any questions or comments you may have, please Contact Us. I look forward to hearing from you. Thank you for joining us today. We really appreciated your company. Until next time, stay safe and keep well.