New member in need of support...

Discussion in 'Fibromyalgia Main Forum' started by DanWeb, Feb 4, 2015.

  1. DanWeb

    DanWeb Member

    hi everyone,

    I was diagnosed with fibromyalgia a few years ago and recently CFS. I personally feel my symptoms fall more Into the CFS category. I've always just tried to get on with it, Im 29 and always been an extremely outgoing, positive and social person. But recently the condition has definitely worsened and my outlook and mood is extremely low.

    Ever since I was a child I have suffered terribly with insomnia and feel this has been the stem for my condition. The insomnia aspect is currently the worse it has ever been, even when I do get sleep it is broken and I wake feeling like I have an almighty hangover. I have a good job and my career me as everything to me but I really feel the condition is starting to have an impact on my working life and the motivation I have for it.

    I just want to know really is there anything I can do to help ease these conditions? I have tried amitryptyline and it didn't do much for me. My doctor has just prescribed me sertraline. I picked up the prescription today and have read through the leaflet and am somewhat shocked the doctor has prescribed this medication. It says throughout the leaflet that insomnia is a huge side effect of the drug. Has anyone tried this drug? Is this true? I am wary to take this drug, I really don't want to disrupt my sleep any more than it already is.

    Please respond, I feel very low and lost and need some advice.

  2. Alyssa-Admin

    Alyssa-Admin Active Member

    Hi Dan,

    Firstly, welcome. This is a lovely group of helpful and supportive people. The thing about Fibro/CFS is that if you aren't getting the support you need from others and you feel like you are spiralling downwards, it can be an evil cycle.

    The thing is...we tend to go through a grieving period. And just as you said, it is starting to really affect your work/life.

    I know that this is your post, and I am not trying to hijack it...I just thought I would let you know a bit about me...and why.

    Believe me, insomnia, poor sleep, night terrors, name it. Since I was a child. The amount of meds I have tried for sleep, pain....well, let's just say that when the Fentanyl (medical heroin) patch was doing diddly squat I decided 'that's it! I am taking my health back into my own hands...'.

    ProHealth has been in business for 25 years and they specialise in supplements for people with FM and CFS/ME. The first thing that I tried that really helped me with my sleep was melatonin. And there's no waking up with a hangover afterwards.

    In regards to the anti depressants you were given today...obviously, I am not a doctor! Everyone obviously has different experiences with each med that they use - some work, some don't. All I can tell you is from an almost personal experience with my mother who was on it...and when she stopped it (suddenly?) she thought she was having a stroke.

    What these meds are doing to our minds...and our bodies...Thanks, but no thanks!

    So, there are a couple of things I want to share with you that will hopefully perk you up a bit! :)

    ProHealth will be releasing an app to help you track everything from sleep to pain, to fatigue, mood, meds, quality of life and much more. (I am in the know, because it is my husband who is developing the app). So, it's not for right now...but hopefully soon, and if you stick on here you will hear all about it.

    The reason it is important to track these things, is so that you start to get a better picture of the pattern that is going on for you. The app also creates reports, so that you can see what is going on.

    For me (there is another version of the app available) tracking that on average I was up 14x a night, was when my GP really started to take my sleep issues seriously.

    I was also tracking my medications...and from that I was able to come off almost all of them. And I am feeling much better for it. In turn, I started using supplements, minerals, vitamins...

    I can almost guarantee you that most of us will be deficient in these things. Have you had any bloods taken to do a run up of things like B12, Vitamin D, Magnesium?

    All I can say is 'breakdown for a breakthrough'. Perhaps have a look at the ProHealth website - call them even and ask what they would recommend. They have supplements specifically for sleep for fibro/cfs, energy, you name it.

    Thing is that way, you are starting to take more control over your wellbeing. (And to be blunt...the fact that your doctor gave you a med that has a side effect of insomnia, knowing your issues...well, I think I would be shoppping around for a new doctor!).

    Lastly, there is a little known medication that is helping many people regain their lives - from cancer and MS remission to people with fibro and CFS/ME. It is called LDN - Low Dose Naltrexone. If you look up there is a lot of good information there for you to read. Even an info pack to print out and take to your doctor...and if your doctor isn't interested, there are many of doctors happy to prescribe it (I was told by the head chemist who compounds here in the UK that it is as 'safe as an aspirin'). Only thing is that you cannot take it with opiates. (The original high dose of 50ml is used to help people withdraw from alcohol and heroin addictions). The highest you would go on LDN is 4.5ml...and you slowly work up to that as well.

    Right. How about throwing on some music that makes you feel good, know that there ARE options out there that go a lot further than just the meds your doc is throwing at you...and that there are supplements and treatments that really are making a difference for people. (Hey, if ProHealth's products weren't really good...they wouldn't have been around for this long...they have an excellent reputation).

    Please do keep me posted. Think of this as a defining moment in regards to saying, 'enough is enough, I am going to do something different....and gain control back into my life!'.

    Lastly, the other option to also look at is a functional medicine doctor...well worth investigating as well.

    I am sending you a wee Scottish hug....we've been there. Illness and in particular, invisible illness is a bugger. For many, our lives have changed dramatically. But. We can either accept that we will never have our old lives back...or look at alternatives beyond the scope of the GP in getting your health back on track.

    RadioFM likes this.
  3. ljimbo42

    ljimbo42 Active Member

    Hey Dan- First I would like to echo what Alyssa-Admin said about melatonin helping insomnia. It has helped me tremendously and I still take it every night. I would start with a very low dose though, because some people can get nightmares taking higher doses to start, in fact it happened to me when I first took it.

    I would start with just 1/4 milligram and see how that goes, you can always work your way up from there. What I do is I take 2.5 milligrams at bedtime and if I wake up in the middle of night I take 1/4 of a tablet or .625 milligrams to help me fall back asleep. I started out though at only 1/4 to 1/2 milligram.

    It works like a dream! (pun intended) I would also like to say that there is a lot you can do to help relieve your symptoms, so hang in there and keep asking questions. : ) All the best- Jim
  4. Nanie46

    Nanie46 Moderator

    Hi and welcome Dan!

    I agree that a Functional Medicine or Integrative Medicine Dr could be very helpful to you. Unlike conventional medicine doctors, they will look for the root causes of your symptoms/illness and then address them with you so you can recover.

    You may have severe adrenal fatigue, hidden chronic infections, food sensitivities, leaky gut, nutritional deficiencies, and other problems that, if addressed, can make all the difference in the world.
    RadioFM likes this.
  5. RadioFM

    RadioFM Active Member

    Last edited: Feb 4, 2015
  6. DanWeb

    DanWeb Member

    Hi people,

    Thanks so much for your responses, it really means so much. Where can I get Melatonin from? Can I buy it online? I am really intrigued by it now you have all been so positive about it.

  7. Alyssa-Admin

    Alyssa-Admin Active Member

    Hi ProHealth...! If you call them, they will have knowledgeable people to help get you exactly the right things needed for sleep, better health, more energy....that's what they specialise in! For people with CFS/ME and FM!
    I hope today is a better one for you.....all you can do is take each day at a time...and look at other options - they ARE there in regards to the above.

    Sending you a gentle hug Dan.

  8. DanWeb

    DanWeb Member


    I emailed Pro Health Custoemr Support for advice regarding which melatonin product is best and they advised the most popular was the FibroSleep Formula. I just wondered what you all thought of this? Is it worth trying or would a solely Melatonin product i.e. Melatonin Sublingual Tablets be better to try/ more effective?

    Keen to hear your views, Dan.
  9. Alyssa-Admin

    Alyssa-Admin Active Member

    I think that I would give the sleep formula a go tbh.

    For me, I have had to increase what I take with melatonin ...I started off with 2mg, then ended up taking a 10mg dual action one and a 10mg immediate release. And in the end, I think, once again I became adjusted to I haven't had it for a while.

    I think that the fact that it calms nerves and muscles and is would be beneficial in a variety of ways on top of sleep.

    How are you doing today? Hey, it's Friday, so that is a good thing, right? Do you have any interesting plans for the weekend?

    Hope you a re doing a bit better and have an easy weekend ahead to chillax.

    Be well,

  10. ljimbo42

    ljimbo42 Active Member

    Hey Dan- I think either one could help. My only concern with the FibroSleep is that it might have too high a dose of melatonin for you to start. One capsule has 1.5 milligrams melatonin, and for some people that's too much, it was for me.

    You could also take 1/4 to 1/2 a capsule of FibroSleep and see how that works and go from there. Everyone is unique in what they need for supplements and this is true for melatonin as well.

    If you don't get the expected results, it could be because the dose is too high or to low. So some trial and error my be necessary. Good luck with whatever you decide! All the best-Jim
    RadioFM likes this.
  11. Alyssa-Admin

    Alyssa-Admin Active Member

    Melatonin is an interesting thing....I know quite a few people who use it for their children who have ADHD and autism, making sleeping saying that, my friend's 5 year old is already on 5mg of melatonin a night. It has made a huge difference for them ALL! As Jim said, trial and error is everything!

    Let us know how things are going for you?

  12. I found fresh vegetable juicing to be helpful for sleep, because it gives minerals that are in need. Don't put sweet things in it if you can help it. Just the alkaline vegetables.

    Eating a whole foods diet - fresh foods from nature.

    Eating greens.

    Also, getting junk out of diet helps tremendously.

    Breathing fresh air.

    Quality filtered water.