To LisaP sorry

Discussion in 'Fibromyalgia Main Forum' started by Diva55, Jan 25, 2007.

  1. Diva55

    Diva55 New Member

    Hi LisaP
    I read your answer to my post about blood tests - took your advice to change the title & deleted the post! I'm so sorry for being stupid as I really appreciated the time you had taken replying to me!

    So from what I remember you said. The 5HTP / Melatonin suggestion was from me to enhance my mood & to help me sleep better. The AD's were prescribed for that but I just felt hungover & still in a low mood although they knocked me out (but in a bad way!)

    The B12 injections I thought would help with energy levels but I do understand the rubber/latex allergy!

    I currently take small ad hoc amounts of Lyrica for pain. I'm withdrawing slowly from it as Recuperation works for me with a lot of the pain management (hooray!).

    Supplements I take are Spirulina, Probiotics, Aloe Vera juice, CoQ10. The first are to sort out my digestion as my diet was very bad (hardly ate) for the 2 years on Lyrica. I'm able to eat a bit better using these which is a great help.

    CoQ10 was my attempt at helping with energy but although I've only taken them a short while they don't seem to help and are very expensive (I'm short on money & have to choose very carefully which supplements give me the best return).

    I will post a seperate post about the blood tests to ask for wider help but I have a feeling you are right that they are only a baseline series.

    Unfortunately the guidelines over here for NHS doctors is limited in what they can request & they have to prove more tests are needed.
    My bloods previously have all come back normal & I guess if they do again that it will be near impossible to get further tests. Saying that my doctor is very good & goes the extra mile if I can really prove, with my own research, that something is viable.

    I don't have any money for private consultation / testing.

    Many thanks for your help & I'll promise not to delete my posts again!!

    Diva



  2. Slayadragon

    Slayadragon New Member

    Antidepressants usually do not help sleep unless the sleep problems are secondary to depression (i.e. you stay up all night because you're depressed).

    If anything, many antidepressants disturb sleep more (causing insomnia, poor sleep quality or daytime sleepiness).

    If your problem is that you do not get refreshing sleep and wake easily, it may be because you're not getting deep enough sleep. Klonopin or Xanax is usually recommended as appropriate for that. Perhaps if you read up on it (it's been discussed in detail on the board and also is described in "from Fatigued to Fantastic") you might be able to persuade your doctor to let you try it. You only need a small amount taken only at night to get an effect.

    My experience is that melatonin also has been helpful for sleep, and supposedly melatonin levels in many CFS patients are low. I don't know what is involved in purchasing it on the Internet for you, though.

    Deeper sleep might help your mood. I would need more specific descriptions of your symptoms to figure out what might be an appropriate choice to address it directly.

    It was my experience that CoQ10 provided no observable improvements at 60 mg and some improvement at 400 mg.

    This is an expensive amount to take. The benefits were not so great for me that I would take it if my financial situation were more limited.


    [This Message was Edited on 01/26/2007]
  3. Diva55

    Diva55 New Member

    Hi
    Over here anti depressants (Amitricycline (sp?) types) are thought, in FM patients, to aid in taking the patient to the restorative sleep state. On a secondary basis they are used to lift the mood to help deal with the pain and fatigue, not for depression as such. They are given in very small doses starting with 25mg up to about 75mg. This is the type that I was taking until recently & stopped taking as I didn’t like the hung over feeling & no sleep benefits.

    The other types of anti depressants (SSRI’s) are used more for straight depression & are thought to help quality of sleep if you don’t worry so much about your illness!! I have tried all types of these & suffered just dreadful side effects & no benefits.

    I don’t get refreshed sleep, ever. No matter how long I’m asleep I wake up feeling tired & just thinking when I can go back to bed again. One of the problems with FM sufferers is the lack of restorative sleep – we don’t go into the healing stage. I notice this a lot as my head is buzzing with bits of trivial information & images that don’t get filtered out. The filtering stage is in the healing stage. I once did a lot of research on this as I was interested in hypnosis but can’t now remember all the information, so forgive me for being vague on this.
    I believe without this healing level, that the pains are much worse.

    Think both Klonopin or Xanax are quite powerful drugs although as you say you only take small amounts. For the moment I’m trying to get away from powerful drugs as I feel like I’ve been “mind controlled” for a number of years & need a break. I’m not turning my back on help from medicines at all but would prefer to look at alternatives where possible.

    I’m tempted to order Melatonin over the internet but wondered if I should try 5HTP (which is readily available over here) as I’m led to understand that this stimulates Melatonin?

    CoQ10 – I have been taking 100mg a day. I realise that a lot of people do take up to 400mg and that would be completely out of my budget so I’m looking for a cheaper energy giver. Do you have suggestions on this?

    Many thanks for your help. Sorry this post is a bit disjointed but I’m feeling very fogged today.

    Regards
    Diva55
  4. Slayadragon

    Slayadragon New Member

    I'm guessing that what you're calling "Amitricycline" are called "tricyclics" here. I've taken Doxepin before in combination with Klonopin. I found it made me feel hung over too, even with a few drops.

    Klonopin and Xanax have a reputation for being strong drugs, but they don't feel like strong drugs. I've been on at least 20 different psychotropic medicines (I also have manic-depression), and those have felt by far the most natural of any medications I've ever taken. They've also felt by far the most natural with regard to sleep of anything that I've ever tried. I've not needed more over time, I don't need them to sleep (just, as before I started them, to sleep _well_), and I have no desire to take them during the day.

    I've heard this from an awfully lot of other people with CFS also, and not heard them say great things about anything else (natural or pharmaceutical) at all. I myself take three medications: Lamictal (a mood stabilizer), Klonopin (for sleep) and Famvir (for antiviral activity.....I am going to move to Valcyte soon).

    Melatonin is a hormone that regulates sleep cycles. 5HTP is a precursor to serotonin (which is what the SSRI's affect). I've never heard that serotonin and melatonin are related at all. Of course, everything in the body is related to everything.....

    I've heard mixed responses to 5HTP on the board and from people I know use it. Some people really like it. Others have bad experiences and are not helped. I tend to think that if you're feeling overwhelmed with stress and are really sensitive to anything else stressful happening, it is worth trying. i don't think it's great for sleep though.

    If you're not taking magnesium, that may help with sleep. Most people in general are low in magnesium, and sleep/anxiety is one of the thing it affects. It won't put you to sleep per se, but it may make you more relaxed if you're currently short in it.

    All the energy supplements are pretty expensive. The most commonly used are NADH, CoQ10 and NAC. Ribose is less expensive, but I've not tried that.

    I'm feeling kind of out of it at the moment, and so I apologize if I'm being disjoined too.
  5. Slayadragon

    Slayadragon New Member

    Thanks for the info. That's interesting.

    i'm still not convinced that any of the first items on that list make it more likely that many CFS patients will make sufficient melatonin though. Hormones seem very hard for us to make.

    Do you feel like melatonin has a categorically different effect on you than the precursors on the list? It certainly does for me.

    I also tend to think that before people go around trying tryptophan or 5HTP, they should try big doses of B vitamins. Sometimes that's enough to solve a good deal of the "overheated" stressed feeling of not enough serotonin on its own.

    I wish I could persuade my mother to take B vitamins, since when she does she's much more resilient to stress. It seems not to be happening though.

    Thanks for fixing my post! :)

  6. Slayadragon

    Slayadragon New Member

    Yes, that is a bad idea.

    My intention is never to do anything other than to share information about my own experiences, about what my readings say about what works for CFS patients, what people on the board say works for them, and general information about various treatment approaches.

    Probably it's not a great idea for me to even be supplying that at present. Monitoring my language to make sure that I'm not implying that I'm giving instructions takes a lot of attention, and I'm sort of too tired to be helping other people anyway.

    I wish there were a way for me to put a sign on the top of the board saying "Don't listen to me." I suppose I should start automatically adding it to the bottom of my posts.

    Best,

    Lisa


    NOTE:

    MY INTENTION IN POSTING ON THIS BOARD IS ONLY TO SHARE MY OWN EXPERIENCES, PROVIDE OBSERVATIONS ABOUT OTHER PEOPLE'S EXPERIENCES, AND REPORT COMMENTS OFFERED BY MD'S AND OTHER HEALTH CARE PROFESSIONALS.

    IF I SEEM TO BE OFFERING MEDICAL ADVICE OF THE SORT THAT AN MD SHOULD, THIS IS UNINTENTIONAL. PLEASE DON'T FOLLOW IT.


    [This Message was Edited on 01/28/2007]
  7. Diva55

    Diva55 New Member

    Hi
    Many thanks for your input - it is much appreciated.

    Don't worry about me taking your advice as treatment. I fully realise that we're under an umbrella name & what works great for some doesn't work at all for others.

    I look into any advice I'm given & then decide if it's right for my body. Then I follow it up either with my doctor or in the way of supplements or diet.

    I realise people are looking to others for a "cure" but I would hope that people understand the "umbrella" concept & check what's right for them.

    So thank you both as any advice helps me to understand more about which direction I choose or choose not to take.

    We have to follow our own path with this illness until a subset of causes & cures can be found.

    Best wishes