Co-Incidental or Unexpected Side Effects?

So a few odd things have been happening since I started taking LDN at the beginning of December.  These things could be a co-incidence or they could be unexpected side effects that I haven’t heard anyone mention before.

My libido has returned.  The higher the dose the stronger it is. Despite a stronger dose giving me unpleasant side effects like bringing back all my ME/CFS symptoms it also seemed to boost my sex drive. On 2ml it’s back but not overwhelmingly strong – which is good because I’m too knackered to act on it.

My creative flow has become reduced.  My creativity is still there but I’m having trouble accessing it and mainly I’m having a problem with doing the work.  It’s hard to describe – being something like a writer’s block even though I have a flow if I can get started.  It’s frustrating because I have lots I want to do and work that needs to be done for clients.  But somehow I don’t feel ready to get down to it until late evening when it’s too late and I’m due my next LDN dose.  It’s odd.

The LDN seems to give me a boost of energy reserves which I then use to do things but my body can’t actually cope with the exertion.  I get a spring in my step and have the energy to, for instance, do some baking. it’s amazing.  But in the following couple of days I am worn out, wiped and feel grotty.  Even now when I have a crushing tiredness and feel pretty grotty from exertions last week compounded by weekend things I still have the sense in the background that I can get up and do something.

I think perhaps I need to use that increased energy reserve to maybe heal?  Perhaps the boost is meant for doing but for repairing.  And as I continue with the LDN and it continues to adjust the balance of t-cells and whatnot the energy can be used for exertion and recovery too.

All of this does however make it difficult to say whether LDN is helping or not.  It is doing something but the loss of connection with my creative flow is a great sadness to me.  The boost of my libido is fun and the feeling of having some energy to use is great – but my body and other symptoms are not in tune with that.

I do find myself being able to think about doing active things in the future with a real sense of hope.  That it’s possible somehow.  A dream but a possible dream.

Although I’ve been taking LDN since December this is only week 6 of my dose being settled and stable.  So it’s still early days.

I’ve just started using Patients Like Me to keep track of taking LDN and for the first time have found a way of rating my condition that seems like it might just work for me long term to track my condition.  There’s some annoying things about how the site works but I’m getting on with it pretty well. If you sign up let me know and I’ll let you know my username so we can subscribe to each other’s profiles.

I’ve also bought a TENS machine to try and help with pain now that co-codamol no longer seems to work (since LDN).  Apparently you can take co-codamol at least 4 hrs after and 4hrs before you take LDN as both are only supposed to stay in your system for 4 hours.  But for me taking co-codamol was like I hadn’t taken anything at all.  It was most odd.  I have read reports from others that taking narcotic based pain killers had a reaction with the LDN despite the claims it only stays in the system 4 hours.

Anyway I am experimenting with my TENS.  It worked brilliantly for sciatic pain but not so well for the neck and shoulder pain I get which is what I wanted it primarily for.  I’ll keep trying.

More effective for my neck and shoulders has been the Homedics Shiatsu Massage Cushion I bought and have been using for 20 minutes daily for the past 5 days.  It’s giving me relief and I can notive a difference already.  I plan to keep using it daily for a few weeks.  What’s good is not only is it a quiet, relaxing and lovely 20 minutes every day but it’s easing up the pain so I can do my phsyio exercises for my neck.

I’ve never been a fan of hands on massage except from a lover.  I’m totally uncomfortable with it in fact.  But the massage cushion had good reviews and is the closest thing I’m going to get.  So far I’m extremely happy with it and I’m glad I made the £37 investment.

Finally, in my quest for pain control, I bought a Pain Gone pen.  You put it where it hurts, click the end of the pen a load of times and it sends small electric impulses.  Somehow – it seems to work.  Not on terrible pain, not for a long period, but it does seem to lift the pain.  Really quite strange.  I’ve not used it extensively so I’m still not convinced but I’ll keep trying it out.  I bought a mini version rather than pay full whack in case it didn’t do anything.

Meanwhile I have to hope to get the oomph I need to do the art work I know I can do if I can just find a way to move the pen and click into action.

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2 Responses to “Co-Incidental or Unexpected Side Effects?”


  1. 1 ashysheela April 20, 2010 at 6:45 pm

    Oh dear, not good about the creative nose-dive, that is not only frustrating when you have things to get on with, but also distressing. Like losing part of yourself. It will return, i hope soon…

    Reckon you should TRY to take advantage of the higher libido though in the meantime (in as least a tiring way as possible, though i can’t seem to work out how myself) firstly because who knows how long it might last and could be very nice and secondly coz someone should be getting some action 😉 It’s hard to fit into this ill life, eh?

    I know it is hard to pace when you feel different but i think this feeling of being able to do stuff is good, even if in reality your body can’t keep up as yet. Let’s see what happens, the sense of hope is something.

    Will check out the “patients like me” thingy soon, had a quick look, looks interesting.

    Glad your pillow is helping – don’t you find the actual spark coming out of the pain gone pen a little disturbing??!? I do!

  2. 2 Jozephine April 21, 2010 at 8:56 am

    Having just retrieved my creative flow after years of block I can understand your frustration. Do you think it’s at the expense of the return of your libido? Or is that completely unrelated? Sex is such a tricky subject with CFS. There is such a small window of opportunity even if you do feel like it. And, if your partner happens to be around, there’s all the aches and pains to contend with. “Not tonight Jozephine” is a familiar cry in our house.

    It sounds like the LDN is doing something. Combined with the success you are having with TENS it could be a real shift towards improvement. I keep my fingers crossed for you.


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