Navigating adolescent CFS

Seratonin June 22, 2012

Filed under: CFS Symptoms,CFS Treatments — parentingcfs @ 4:35 am
Tags: , , ,

Honestly I’ve been reading and learning so much this last week I don’t even know what subject to blog on! So I’ll try to post a few times over the next week to catch up!

Our week has been rollercoasterish again. School for 2 periods Monday morning (There’s 5 per day), 4 periods Tuesday, no school Wednesday or Thursday (despite her desperation to get there she had to acknowledge she couldn’t do it and /or would pay later) and hopefully a full day of school today (she’s nearly made it!)

So the winter slump continues and continues to puzzle me. I like answers and am not good at giving up looking for them.

I also love the power of communication. A friend of mine started a rumour about the Prince after concert at the conference he was at recently. He did it just to see how long it would take for the rumour to get back to him.  🙂 It didn’t take long. This wonderful world of the internet has opened up communication enormously as we all know and, for chronic illness sufferers and their carers,  is such a sanity saver that we wonder how previous generations coped. And don’t tell me face-to-face support groups because then and now that is often just too hard for many reasons. And now, I can talk in cyberspace with a mother whose child is participating in a groundbreaking study in the U.S. and start looking into it as a way to possibly help my child before the study is even finished or published. It is this kind of unification and speedy dispersal of information (along with some fabulous and dedicated scientists) that is going to solve the ME/CFS puzzle.

Anyhow, I digress and must address that subject at length some other time!

Seratonin. Yes. For a while now I have been feeling that my precious girl was lacking a resilience that was caused by more than a lack of energy. No doubt she doesn’t have enough energy for tricky social interactions (and what social interaction doesn’t require careful steering when you are speaking of 12 and 13 year old girls??!!) but there’s more to it. I know I am her biased mother but our girl really is a lovely human being, extremely empathetic and kind…to others. Some of that kindness is lacking in the way she assesses herself. Yes, she’s practically a teenager so she sees many flaws in herself but…..  Anyhow,turns out her seratonin levels are so low they barely register. Who knew? Apparently this is not uncommon in ME/CFS sufferers. Do you think maybe this something that a doctor could have mentioned… I found out via Mr Google. Is it because doctors are scared that if they mention it we parents will think they are saying our child’s illness is psychological when we know it’s not? Maybe? Is it because they simply don’t know this ? I don’t know. Is it because the problem of dispensing the only tool they have…anti depressants..outweighs the benefits? What about some Vitamin D testing?? That can severely affect mood, right?

We are trying to boost our daughter’s levels with supplements now. Until now we have limited pill taking to the Florinef, salt and melatonin. And the odd dose of fish oil. This is partly because, prior to the Florinef addressing many of the OI problems, our girl couldn’t swallow much without gagging, however gamely she struggled. My heart bleeds just thinking of her gameness through all this now 18 months of illness.

I realise as I type this that there is a danger that someone reading this might think this discovery of mine means my beautiful girl’s illness is ‘all in her head”. Believe me, if that were the case I would be running with it and using every drug I could lay my hands on. This seratonin issue is again all linked in with the dysfunction of the autonomic nervous system and we are slowly slowly addressing as many parts as we can in an attempt to break into the cycle of illness that is circulating through her body.

I will post more about the supplements and other things soon. Meanwhile I’m interested in your experience boosting seratonin and Vitamin D if you have any? Oh and of course any other lovely comments you may have : )


6 Responses to “Seratonin”

  1. Cheri Portelli Says:

    Hi A. Interesting post. I presume H’s Vit D levels were checked during the gamut of blood tests she faced early on? N’s Vit D levels have been low 2 yrs running which is quite common with Type 1 diabetics. He had 1 liquid dose last year but this year his endocrinologist has decided he needs it every 3 months. We certainly haven’t seen any evidence of N’s low Vit D levels. As you know he is full of beans & pretty healthy besides the Type 1! I hope the potions H has started taking will increase her seratonin to acceptable levels & that she feels the benefits x

    • parentingcfs Says:

      Thanks honey. You have reminded me to go back and look at what tests were done last year. I can’t remember about Vit D. Am off to get my own levels checked shortly. Thanks for commenting x

  2. Lisa S Says:

    I’ve had good luck with both 5htp and Tryptophan for myself. I took Lexapro for a while before that and it helped and then I was able to wean off of it. My son did alright on 5htp but didn’t do well on St. John’s Wort; we think that it was just too much, but I don’t think he’s low in serotonin anyway.

    I’ve found an interesting phenomena. 5htp at night increases dreams and tryptophan lowers them. I was having way too many dreams so I take 5htp in the morning and tryptophan at night.

    • parentingcfs Says:

      Hi Lisa. Thanks for the comment. My daughter is taking both of those in the morning and it does still seem to be helping. If she starts complaining about dreams I’ll know what to do! Good luck with your own journey. Annie

  3. Sue Jackson Says:

    Yup, serotonin levels are low in people with CFS and yup, it is all connected! You are right on both counts. The experts have long understood that endocrine dysfunction is an integral part of CFS – and I purposely used the term “integral” because all of these things – immune dysfunction, endocrine dysfunction, OI, etc. – are all inter-related, and it’s impossible to separate them from each other. So, whether it is a cause or an effect, our bodies have trouble regulating ALL hormones, including serotonin, dopamine, and melatonin (and also adrenaline, etc., etc.). The main problem isn’t that our levels are too high or too low but that we can’t properly regulate them.

    So, in the case of serotonin (and dopamine), a normal healthy person’s body will naturally increase these when it gets dark out and lower them again during the day. But in someone with CFS, our bodies aren’t doing this.

    You are right – it is anti-depressants that can help us to correct this dysfunction but only when used in a particular way…very low doses administered before bedtime in order to simulate exactly what should be happening in the body naturally. The trick is that it can take some trial and error to find the right meds and the right doses.

    Here is a blog post I wrote about all this:

    Hope that helps a bit!


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